a CRAZY kind of FAITH...

"...You're not gonna have any more kids, are you?"

2012-02-26T09:29:00.000-08:00

.....these were the words of my orthopedic surgeon as we looked at my most recent pelvic x-ray. My superior and inferior pubic rami were fractured in my climbing fall (as well as the sacrum, which fit back together very well with screws, thankfully!). As weird as it seems, those rami, which should join together albeit asymmetrically, should not be problematic as long as I don't decide to become pregnant.

Given a situation like ours, I guess it is a no-brainer.   And....I know what you're thinking, yes...we will be able to "do it" again.

Those of you who know us well remember the days when we tried very hard to get pregnant.   It didn't seem to be in the cards for us and we thankfully decided to adopt.  We are happy with our family and have decided that two is it for us...although there is something unsettling about knowing that we cannot ever become pregnant again because it would be dangerous.

Something else that I can share....because it is likely that I suffer from endometriosis, my monthly periods have been, in short horrible. For years I was on "the pill" at the urging of my internist because of heavy bleeding and cramping, and the tendency to become anemic in these situations.   "The pill" also leaves one susceptable to clotting more easily.   Obviously, for someone with a diagnosed clot or DVT , the pill is not a good thing.  Thank God for blood-thinners.   Well, kinda.

Remember that the purpose of blood-thinners is to increase blood-flow, and that side-effects include increased bleeding (incl. nosebleeds, bleeding gums, increased menstrual flow, etc.).    Well, lemme tell ya.....you don't want to know the details as to what the months since Nov 30th have been like.   All I can say is....the nurses I have had were SO understanding and empathic, despite needing to change my bedding continuously and keep me supplied with narcotics for pain.   Yeah....to throw in the menstrual thing on top of everything else....total bummer.

SO....ours is an odd situation.   I know that right now birth control is a hot topic politically.   For us, pregnancy would have been a wonderful thing....if my reproductive system would have cooperated.   Now we have this situation where it can't happen, and, despite our plans to remain a family of four, there is still a sort of grieving in being told that we essentially cannot have a child biologically.   Don't get me wrong...I'm not sitting here wallowing in sorrow, as Kai's multiple needs are more than enough to deal with, and a third child would be really, really tough. I just find it odd how life shakes down sometimes.

Our children are a real gift to us.   Every day we marvel at how we've grown together as a family in our own quirkly little ways.   Even with my current ordeal, we are amazed at how incredibly well our kids are adjusting and how they seem to be truly grateful that their mom is still here and in one piece.   When I asked Jade in the past if she would like a baby sister or brother, her response was "I kinda just like having Kai as a brother. I don't think I would like to share the attention!"

The plan for now is to consider an alternative method of birth-control (a special non-estrogen producing IUD).   Again, its purpose....to keep me from becoming anemic each month (especially while on blood-thinners) and to be sure, when we're able to become romantic again in that way.... that we don't take the dangerous chance of impregnation.    Sigh....

I know.....interesting post hey?  Just thought I'd put our ordeal out there without being offensive.   Everyone's situation is different and hopefully ours can shed a new light on things.

A Quick Update...

2012-02-21T21:59:00.000-08:00

A lot has happened within the past week or so! Admittedly, I have had my guard up anticipating another setback of some type, so when good news is delivered, I almost need to pinch myself.

On Friday, the x-rays of my ankle and pelvis revealed that healing is going well (although my rami are growing back together weirdly, which is apparently not an issue because they are not "weight bearing."). SO.....I got the go-ahead to begin physical therapy after getting clearance from the plastic surgeon to let my leg "dangle" rather than elevating it consistently.

Today I met with the plastic surgeon who was impressed with the healing of the ankle graft / flap. He has decided to let the stitches in, and allow me to begin physical therapy including "range-of-motion" activity as of next week Monday. I was quite surprised as he grabbed the newly applied graft with his thumb firmly (not delicately, as we've been treating it.) and said, "looks really healthy. You can let it down....and just pay attention to when it swells. If it does, elevate it." He also encouraged me to get in the shower, which was music to my ears! Seriously folks, for health-related reasons (open sutures, a cast and healing pelvic fracture), I have been prohibited from doing stairs and showering since entering the hospital on Nov 30th! (Yeah, I've felt pretty gross. Sponge-baths just don't cut it.)

So tonight I attempted to enjoy my first shower in almost three months. I wish I could say it was relaxing, but it was truly a lot of work. There is so much atrophy and weakness on my lower right side (which I could finally see in a full-length mirror :(. Pretty pathetic. Yeah, I know it is temporary...but pathetic to see nonetheless), and I was quickly reminded of how much work it will be to regain my strength and muscle tone. Elevating my foot was a challenge, but necessary as my foot and ankle began to turn red and throb (totally normal and expected.).

At least we're making progress in the right direction! It is going to take a lot of time, but hey...at least we are moving forward.

On Feb 15th Scott and I celebrated our 7th wedding anniversary at our home. My folks set up a cute "restaurant" in our living room and Jade was our little waitress (see pic below). My dad grilled some pretty awesome ribeyes, and serenaded us with a cheesy Bobby Vinton love song after dinner. We laughed...it was a truly heartwarming anniversary!

Dinner at "Casa Morgan"

How are the kids doing? Pretty darn well, thanks to all of our fantastic friends and family who have offered to help out when we need it. Jade has loved all of her playdates and sleepovers, and Kai has really taken to his new ABA therapist, Duane.

A new development with Kai has been the encouragement of his endocrinologist to consider beginning growth hormone therapy for Ideopathic Short Stature. Initially we were led to believe this would not be a problem because it would be covered under Kai's medicaid, but apparently funding for this type of disorder was cut about six months ago. Our medical insurance is another option but we are hoping it will not be cost-prohibitive, as the medication is known to be extremely expensive. There are many reasons Kai would benefit from GHT...one of them being psychosocially. He will start kindergarten in the fall, and still look and behave very much like a three year old. (His orphanage neglect and malnutrition is likely part of the etiology.) We will see how things unfold.

As always, never a dull moment.

the "flap"

2012-02-05T19:37:00.000-08:00

Today marks the end of week two here at Froedtert, and one week since my graft / free flap surgery.    It's been kind of an emotional few weeks with lots of unknowns.   With that said, I am glad to report that the surgery was a success!   After the first 48 hours following my surgery on Monday (which took 9 hours), I was told that I was "out of the woods" in terms of potential complications.   Both my orthopedic and plastic surgeons have deemed the turnout "beautiful" (yes...really.  But they're referring to the healthy appearance of the tissue color and the great loud pounding of the blood-supply involved in the transfer, when heard on a "doppler".)  Nurses and medical folks have fussed pretty continuously to check the progress of things, and everything looks good.   My fingers are crossed that I will be able to return home tomorrow.

I am going to go out on a limb here (no pun intended), as I can be kind of vain. This new leg 'o mine, well.... It AIN'T PRETTY.   I fought with myself as to if I should post a photo or not, as really, it is kind of gross to look at.

Initially I did not even want to see it.     When I finally decided to, I took a big gulp and reminded myself how much worse it would be to wake up and see NO foot or ankle there.   I have kept that in mind as I continue to warm up to the new appearance of

The free flap was taken from an18 inch incision
on my lateral thigh. Skin, muscle and blood supply
were all transferred and reattached to my ankle.

my leg.   Whenever I look at the fracture x-ray I am reminded that I am really lucky that medical science was able to take an incredibly damaged body part and keep it working.    (How well it works will remain to be seen.    I won't know for at least 5 more weeks, as I need to keep the leg elevated 24/7.)

Folks who have seen these done routinely have remarked that the "bulkiness" of the tissue will decrease and the ankle will eventually have a more normal appearance, although the scarring will remain and the skin will always be a little more dense in that location (mainly because of the need to have it protect the bone and hardware
underneath.) The long scar on my
lateral thigh should fade and become very light over time.

Ya know, it has been a tough two months....and the past few weeks in particular have been very, very difficult.   I have found myself in tears plenty of times simply because I am fed up with pain and limitations (my sacrum still hurts when sitting for longer periods of time and I can't strengthen my gluteal muscles if I am on bedrest, and leg elevation can increase this irritation; Obviously there is still quite a bit of muscle and nerve pain from the surgery; I need to give myself daily injections of a blood-thinner to decrease the likelihood of clot formation [I still can't get used to giving myself a shot every day.   I know, I'm a whimp.]; Jade came home with a completed assignment entitled If I Had a Snow Day.   The first page read: "If I had a snow day I would go ice skating with my mom."   Yup...tears.   Again.

To say that I am excited to start physical therapy is an incredible understatement, but that won't be until March...maybe mid-March.  There is a lot of delicate healing that needs to take place first.   Thanks for everyone's incredible support!   Praying for patience.....

Our chat with the Plastic Surgeon

2012-01-29T21:04:00.000-08:00

Now that all of our proverbial "ducks" are in a row medically (had the ultrasound which revealed a clot in my right leg; Had an inferior vena cava filter inserted and was started on temporary high-dose anticoagulants to deal with that clot; Had an angiogram to give the plastic surgeon an idea of the vascularity in my lower extremities, three incision and drainage procedures, and began a course of prophalactic antibiotics), we are scheduled to go ahead with the reason that we're here at Froedtert.

The plastic surgeon came by late Friday to discuss the 6-7 hr grafting / tissue transfer surgery that I will have tomorrow.    All the folks I talk to here mention what an awesome plastic surgeon Dr. Logiudice is (and Dr. Schmeling , my orthopedic surgeon claims his success rates are extremely high.).    He seriously looks like he could still be in high-school....well, truthfully, LOTS of the medical docs look incredibly young to me.   Guess that means I'm getting old. ;)

Here's the Scoop :
I learned that, because the tissues surrounding my ankle are incredibly thin (feel them on yourself....there is hardly anything there), and the hardware/bone is directly underneath the skin,  I will be having procedure called a Free Flap.....in which the surgeon will transfer a portion from my gracilis muscle , along with [self]donor skin tissue to cover the affected area of my inside lower ankle. Again, because of the initial high-impact trauma to the soft tissues in my ankle and resultant swelling, this is apparently not that uncommon.

As I (naturally) inquired about the extent of cosmetic damage and scarring involved with this surgery, Dr. Logiudice did state that it would be a bit bulky and may take several months to a year to look more "normal."   He went on to say that he will do his best to minimize cosmetic scarring (for example, obtaining tissue from as far up the inner thigh as possible, and pointing out that the inner ankle is a less obvious location than the outside of the ankle). I segwayed a bit and told him about Jade and Kai who are both cleft-affected, and how, with Jade in particular, we are continually reminding her of how beautiful she is despite the keloid scarring on her upper lip.  I admitted that, despite all of my assurance to my child, now it is time for me to embrace this understanding and it is really hard.

Dr. Logiudice gracefully reminded me that I literally smashed my ankle.   Really. In his words: "Chris if you would have had this climbing fall in another country, or even many parts of our own country [where there is no access to trauma center with cutting-edge medical technology], we would not even be having this conversation. There used to be, and in some places still is no other option other than amputation."   (gulp...)  The term he used I believe was "limb preservation," and yes, we recalled that this is an acceptance thing and regardless of how ugly things may turn out, I really have no choice in the matter.   He smiled and reassured me that I will do fine.    Sigh...

Sometimes to get exercise while I'm here, I will do "laps" in the wheelchair around the 5th floor and through the other units.   Those include neuro, spinal cord injury, and stroke.   Lemma tell ya, when I get back to my room (despite how sore my ankle or sacrum is) I feel really blessed.   Man, some of those folks are lucky if they will ever be able to talk or feed themselves or breathe on their own again....ever.    I don't know how I would deal with that and hope I never have to.

Some people that I see here are always alone.   Every time I pass their room they are sitting in a wheelchair in the corner or laying in bed.  Really, really sad. I am lucky to have a husband that has stayed with me nearly every night, and parents and a mother-in-law who we trust to take good care of our kids. I have wonderful family and friends who have stood by me every step of the way (excuse me as I wipe a tear while writing this...), salt-of-the-earth teachers at my son's school and staff at Scott's school who are bringing meals,  and even a great hairdresser who squeezed me in for a hilight when I pleaded with her that I want to feel somewhat like a human being as I lay in a hospital bed for a couple of weeks (she went all out on the stylin' then....thought she'd give me some "come hither" curls that Scott would enjoy.   Hee hee....)

SO...tomorrow is a big day.   Am I scared?   Heck yeah!   One of the internists that drops by my room almost every day to check in said "you'll do some grieving." I'm kinda preparing for that.  There will be some pain, of course, but that's what good drugs are for.   I'm mostly concerned about needing to continue laying in bed with my ankle elevated for the weeks to come and how my sacrum will do with that.   (I ain't got no booty and that won't change until I'm up and able to do steps and other things that strengthen the gluteal muscles). There will be a six-week recovery period in which I will need to keep my leg elevated at nearly all times. I also learned today that I will need to refrain from drinking coffee and eating chocolate (seriously) because caffiene constricts blood flow, and we don't want that to happen in an extremity like an ankle. I do think I'm gonna ask the surgeon if red wine is okay though....because I hear it actually helps with blood flow! We'll see.... ;)

Keep those prayers and positive energy comin'!

Setbacks and Stamina...

2012-01-22T23:20:00.000-08:00

This morning Scott and I recalled that we have been going through this recovering thing since November 30th.   In a way, I had to take a step back and marvel at how really awful this whole accident experience has been and how far I have actually come (I tend to minimize things...for coping I guess).   Seriously.   An ambulance ride to the ER....where they cut off my clothing and climbing harness, hooked me up to a drip of dilaudid, and proceeded to put me through lots of uncomfortable tests and such.   I felt like, well....a marionette.   Intuitively, I knew that my pelvis was in bad shape because it wasn't connecting. Luckily the medical folks knew what they were doing and they kept me pretty doped up.

After all of the x-rays and CT scans, the verdict seemed a tad dire.... expressing that I should expect an 8-10 month recovery period, the resident orthopedic doc assured us of the competency of the orthopedic team and the brilliance of the orthopedic surgeon who would do my surgeries.   However, he emphasized what a horrible break my ankle / leg was......and in my medicated state, I don't know if I fully caught the magnitude of what he was saying. (Scott did, because that was about when he passed out.   [BTW, we did get a $398 bill for that from Froedtert.])  From what I remember, the doc mentioned that I'd suffered a vertical shear type of pelvic fracture, including two fractured pubic rami and fractured sacrum which would require surgery, and may or may not result in neurological complications.   Then he went on to discuss the severity of my pilon ankle fracture and the potential related complications including: loss of range of motion, osteoarthritis, deformity, implant-related problems, soft-tissue complications including infection and nerve damage, and amputation.   Naturally, that last potential complication raised my ire a bit, but I figured that it is the good doctor's job to spell out all worst-case scenarios to put them "on the table."

I seem to have been very lucky in the sense that my sacrum "fit" back together well and there appears to be no evident nerve damage.   In addition, the doc was surgically able to retain the integrity of the "architecture" of my ankle .   It seems pretty miraculous that he was able to pull together remnants of bone to re-create the ankle structure.   With everything appearing to be going well, I did not anticipate a major setback.

Well....apparently the intense trauma of my fall created a great deal of swelling, which, while minimized by the staging of the ankle surgeries (3 weeks apart), continued nonetheless to create problems with the outer soft tissue healing...which is an issue because the bone will not heal unless the soft tissues surrounding it are healthy.   SO...we were surprised last week to see a few patches of necrotic (dead) tissue along the suture line which unfortunately have spread.   It was really gross (and scary) to see, and even scarier to talk about with the surgeon and physician assistant.

The upshot is the need for further surgery (Monday)......to remove the affected soft-tissues in the hope of regenerating healthy tissue.   The good news is that there is good, vascular healthy tissue underneath.    Best case scenario:   The bad stuff is removed by a process called debridement, the area is washed and a vac is temporarily inserted to keep the area clean, and eventually skin is pulled up and stitched in place over the affected area.    Next best case scenario:   A skin graft would happen, in which a vascular tissue sample would be surgically removed from one bodily area (usually side or thigh) and is grafted over the affected tissue above the tibia.   This would be a longer procedure, lasting 10-14 days.  (It is important to clear the tissues of anything that might do damage to the tendons or the plating on the bone.) The truth of the matter is that, well, we need to do whatever we have to do....no matter how much it sucks.

I've always considered my legs to be one of my greatest assets.   This experience is leading me to re-define that.   It is leading me to re-define and re-think a lot.

So, how are the kids holding up?   Today both of the kiddos had some challenging behaviors....lots of irritability and poor frustration tolerance.   This morning Jade broke down crying, looking at me intently while muttering "I don't want you to go in the hospital again."   I held her close and we cried together briefly.... I reassured her that I will be okay and that I will always be here for her, even if there are moments that I need to focus on my healing.    I also told her how much I miss running and playing with her and Kai.  (Boy was it hard not to let the dam open, but I managed to do okay).

Jade did mention that she has talked with the school guidance counselor twice since my accident.   The last time she said that she told Mrs. B that she was afraid that I would go in the hospital and never come back.   I reassured her again....(those old abandonment issues are always there) and she remarked that the best gift she can give is to do her best in school and not worry.  (I put a little love note in her lunchbox for tomorrow. Shhhh ;)

Kai....well, quite honestly I have felt lucky to have the help of family (Scott, my folks and Scott's mom) and his ABA therapists to deal with him because frankly, my reserve is quite low.   Folks have kindly suggested all along that I "let go" of feeling the need to constantly be there for his issues.   I guess this has been my "shot in the arm" to do just that.

SO....tomorrow is a new day with lots of unknowns.   I am thankful for all of the healing that has taken place and the support, prayers and positive energy folks have sent my way!   This is a journey that I couldn't do alone.   I just keep pluggin' away and have a sense of trust that things will be as they are meant to be.

Breathe....

Thoughts on "Trauma"

2012-01-17T07:43:00.000-08:00

I have been seeing the word trauma quite a bit lately.   Having ridden in an ambulance and ushered through the "trauma" departments of sorts....staying on the "trauma" unit, hearing my doctors talk of the "trauma" to my ankle and body, etc.   Somehow my mind segways and I begin to think about psychological trauma....such as that which our son endured in his early years.

I mentioned to the spine doctor yesterday that, despite the normal x-rays and CT scans, my spine feels "different." For example, I can turn my head and hear a slight crunch in my neck (which is normal, BTW).   Despite injuries becoming "fixed" or "healed" most folks say that things are still different.    That's just the way things are.

This morning as I contemplate some of the quirks that Kai continues to have, I realize that these quirks are probably the result of his own trauma.    While we would like to gloss over or forget about the hunger, neglect, and deprivation of his early years, it will never be completely eradicated from his psyche.   He will probably always have "food issues" to some extent.   He may always be tiny.   He may always have problems with trust (although we certainly hope not.)   These things are the result of early trauma which can be helped through therapy, good nutrition and positive parenting, though not eradicated completely.     As I talk to other adoptive parents, this tends to be a common realization at some point.

With these things in mind, I realize that there are degrees of healing....We are always hoping for the degree that ends on the "cured" side.   Our resounding hope is that we have the great doctors and professionals to get us there, the nurturing to sustain us, and the internal strength and determination to carry-on.

Welcome to the Geriatric ward

2012-01-12T09:42:00.000-08:00

It seriously looks like a geriatric ward here at our house.   I know it is temporary, but it bugs the heck outta me. Sure we've got the hospital bed, the commode, the walker and the wheelchair, but as of recent, my physical therapist has recommended that I acquire a long shower-chair that I can use to wash up while keeping my cast outside of the tub (that is, after I get clearance to do steps).    My folks found one and brought it over yesterday...apparently a great deal at a second-hand shop...still had the tags on it.    I should be excited right?!

It has been three weeks since my ankle surgery and six weeks since the accident.   The docs told me to expect an 8-10 month recovery (to get back to "normal"), and somehow I thought I could beat that.   Generally it takes 6-8 weeks for a broken bone to heal.   I have to remind myself constantly that it is physically not possible to will the process to happen more quickly.

Yesterday was a tough day.   I'm doing more stuff....getting up and about and sitting (which means my ankle is not elevated). I'm also trying to take as little narcotic pain meds as possible.   Well...yesterday culminated in my being a tearful mess because the pain had gotten outta control.   I seem to forget about how bad the break was and that it is nothing short of amazing that my surgeon could even fix it (I'll need to ask just how many screws are in there cuz I really don't know!).

Of course, when in this "mental space" I also think about how I'm bummed because I can't interact with the kids in an active way like I'm used to.   They do seem to have adjusted well....although it is hard for me to give up my role as the "go to" person of the family.   Yeah, my silly pride I guess.    I am just thankful to have family that have stepped up to the plate and are helping out, and friends that continue to lift my spirits along the way.   An arduous process it is! (okay, now I'm thinking of Yoda...."mmm, an arduous process it is!")

Sigh....one day at a time I guess.

Patience...

2012-01-03T11:57:00.000-08:00

I've come to the realization that I am not a good patient.   I am not a patient patient either.   Even my surgeon's and his tech said so.      First of all, every time I see the doc I have lots of questions.  (Apparently I'm supposed to just trust the doc and the healing process).   Granted, my surgeon is the "go to" guy for trauma surgery and is the best in the area.   He's got 25 years of experience, is the chief orthopedic surgeon and Vice Chair of orthopedics at the Medical College of WI.   But here's the thing.....I want to have a clear understanding of what is going on in regard to my injuries.   Vagueness doesn't help much, and my asking for clarifications should be welcomed and viewed as patient empowerment.

Recovery is scary, painful and very uncomfortable....riddled with lots of unknowns.   I get that.   Perhaps I'm looking for reassurance, along with the thousands of other patients my surgeon has dealt with, and that gets old.   Perhaps it is a "personality thing" and my doc doesn't have that "bedside manner".   Maybe he is not able to provide reassurance at this time because there are too many unknowns.   Truth be told, if given the choice, I would much rather have a top-notch surgeon than a "good enough" surgeon with a great bedisde manner.   So I should quit my belly-achin' right?

Here are images of the injuries.   The top is a 3-D pic of my tibial (pilon) fracture.   Yeah, it's pretty nasty (amazing how they can get such a great image though.).    The bottom is a pic of my pelvic injury with repaired sacrum.

Right leg pilon tibial fracture before surgery

Pelvic injury to superior and inferior pubic ramus (on bottom left).
Repaired sacrum (screws inserted). X-ray taken while external
fixator was in place (since removed)

They're anticipating that my pelvic injuries will heal on their own, while I continue on general bed-rest with minimal movement. I'm able to sit up for 30-40 minutes at a time, but otherwise, need to be mostly horizontal with my leg elevated.

Speaking of leg, here are a couple of x-rays of my repaired ankle. It is pretty impressive what can be done:

The doc mentioned swimming as a potential part of my rehab, and I questioned whether or not I will even be able to float, given all of that internal metal. ;)

The thought is that it seems I am doing quite well, according to the nurse who comes to our home. She also encourages me not to worry, and mentions that my lack of patience is a good sign that my body is healing. Well......my fingers are crossed!

On the mend...

2011-12-29T17:12:00.000-08:00

My apologies for being out of the blogosphere for a while...I find that sitting with a computer in my lap for extended periods can be really uncomfortable.   I'm also feeling a drain in creative thought...probably because of the drugs I'm on (far out dude!).   While I'm very thankful for good pain meds, I really look forward to getting off of them. I am ready to move on and get going with things...but ugh, I probably have another month of bedrest. After 3 months (post accident) I will be able to bear weight on my ankle.

It has been about a month since the "fall" and a lot has happened.   I had my second ankle surgery last Wednesday, in which they removed my ex-fix and attached plates and screws into the bones interiorly.   I guess the surgery took 3 and 1/2 hours...but it was successful in the sense that (in the words of my surgeon) the "architecture of the ankle bones was restored."   There were a few small pieces of bone that needed to be removed because they had been crushed, but this did not compromise the integrity of the ankle.   Functionability is still in question, as it sounds like some flexibility will be lost.

Recovery has not been very easy. The evening of the surgery I was in the most intense pain I think I have ever felt in my life. There was some concern that I may had suffered something called compartment syndrome, but after opening the wound dressings and waiting for a while, it appeared that the pain and swelling was the result of my ankle being wrapped too tightly.   The type of injury I sustained to my ankle is called a pilon fracture , and from what I understand, the expected recovery from this is very difficult due to the crushing nature of the fracture and resultant swelling.   Ugh...

I am now ex-fix-less!   My pelvic ex-fix needed to be removed a couple of weeks ago due to an infection in the pin-sites.   That removal experience was quite interesting.  Right in the office as the doc was examining things, he stated "Hmm...this has to come out.   Her body isn't liking it in there." I had thought this would mean yet another surgery. NOPE!   The tech (a guy named Gary who has worked in the orthopedic unit for 40 years) brought out a Sears Craftsman wrench and seriously went to town unscrewing this apparatus from my pelvic bones.   Yup, I was conscious, and chose not to watch (Scott chose not to watch either).    It was the oddest sensation...feeling something becoming unscrewed from within my body.   I commented that I felt like a 2x4.   There was a little pain, but more odd discomfort.

I WAS able to be home on Christmas!  I couldn't wait to be home with the kids and Scott after having been in the hospital for so long.   We enjoyed hosting Christmas at our house with Scott's family on Christmas Day.   Scott played host while I laid in my bed in the living room.   It was very interesting to watch him take on these roles (the host, the multitasker, the maid, the nurse, and Mr. mom). That's material for another blog post. Here's the view of our Christmas tree from my bed:

Jade thinks I'm pretty lucky to be able to sleep by the Christmas tree, and asked if I got to see Santa on Christmas eve. ("Nope..." I said. "I was snuggled in, fast asleep.")

Every day is a new one. I have felt blessed to have so many people...fantastic friends and family that have come to visit or send caring thoughts. These are the little messages of hope that help to get me through each day.

Of course, then there are the hoodlums. My husband too. All blessings.

Legends of the Fall

2011-12-17T18:31:00.000-08:00

....FINALLY getting around to writing a blog post.    It is odd how those "lucid moments" of writing clarity can become incredibly scarce....mainly as a result of the cloudy-headedness of pain medications and such. So, if my writing seems to be a little off today, blame the meds.

As many of you know, on November 30th I fell about 27 feet while climbing at our climbing gym.   I must have gone over the story hundreds of times by now.....with nurses, doctors, and friends.    The common question is always "Arent you clipped into a rope or something?" and my answer is always "yes...yes....we are.   And this was one very stupid example of what can happen when you're preoccupied and in a hurry."   (I only had an hour before getting my son to an appointment that afternoon.).   Yeah, I totally forgot to clip into the autobelay and climbed as if I was clipped in.   When I was about three feet from the top I lunged for a handhold and, well.... found myself on the floor with several folks around me, gawking.   My son included (while asking "mommy what happened?")

Surprisingly, I never lost consciousness (I'm way too stubborn).   I do remember wiggling my toes and moving my body a bit to assure myself that I did not suffer a spinal cord injury.  Of course, folks asked me to lay still, and the ambulance arrived quickly.   I also remember apologizing over and over to Craig, manager of the gym, who was holding my head steady.    I kept reassuring him that his staff do a great job, I made a stupid mistake, and that I would never sue."    (I guess I also uttered quite few swear-words and eplitaves, which folks from the gym were surprised to hear coming from me [I guess shock will do that to ya.].

Before very little time had passed, the ambulance had arrived and Craig mentioned that my husband was on his way.    The EMT's started an IV of dilaudid, checked vitals etc., loaded me onto a backboard, and brought me to Froedtert Hospital's ER.

The experience was a blur really...although I remember bits and pieces of it.   I remember the ER folks having to cut off all of my clothing, including my harness and climbing shoes.  I was taken to get CT scans and x-rays, while the pain meds kept comin', which was quite a relief.   Eventually Scott showed up with Kai, lookin' scared and very concerned.   (Kai did not appear to know what happened and continued to seem pretty clueless, which is not a bad thing.).   When the doctor came into the room to tell us the results of the CT and x-rays, Scott became white-as-a-ghost.   One of the nurses stated "get another room prepped, I think we have another patient on our hands."    Scott sat down and started twitching and yawning.... and even in my dilaudid-enhanced state, it was really quite comical to watch.   Even the ER staff chuckled about my "knight in shining armor" passing out with our son in-tow, while I continued to let folks poke and prod.

It was most gruesome when the doc informed me that my leg would need to be in traction, therefore he would need to drive a long metal pin through my femur to attach a 20 lb weight.   I was told that I would receive local anesthesia and a sedative (no, I could not be put under.).   I did not watch....but I did see the nurses faces cringe as the pin was screwed in. Once again, thank God for pain meds and chemistry)

My diagnosis was as follows: Right tibial-fibular fracture; Right superior and inferior pubic ramus fracture, right pilon fracture, L1 vertebral body fracture, L1, L4 and L5 transverse process fractures, and boken rib on R7. Treatment to include an external fixator on the ankle and pelvis.   Plan to have additional surgery on the ankle in 3 weeks.   (My thoughtful hubby lovingly snapped this photo of me, looking oh so very patient-like.   Here you can see the ex-fixes.   I also need to wear a TLSO (brace) any time I sit above thirty degrees. We jokingly refer to it as my "turtle shell".

I remained at Froedtert for a week and a half, with the last four days in the rehab unit. On Monday evening I returned home. Our living room is beautifully decorated with a hospital bed and commode, not to mention a sleek black wheelchair.

On Wednesday I return to Froedtert for a second ankle surgery, and it is expected that I will be there for 4 to 5 days. We are discussing how to weave Christmas into this whole experience....it may be a little tricky. We'll definitely have to be creative.

The silver lining in all of this has been the renewed sense of connection and support of family, friends, co-workers and community. Scott's work has granted him leave through the Family Medical Leave Act up to three months. My parents have come to stay with us Monday through Friday to help with the kids, and my mother-in-law helps out with the kids on the weekends. So many wonderful people have reached out to us and it has been such a blessing! (If you are one of those people reading this, I'm sending you a big cyber-hug!)

Surprises...

2011-11-21T08:22:00.000-08:00

About a week ago we attended parent-teacher conferences for both kiddos.    I had braced myself to hear about how Kai might be squeaking by in his mainstream classroom and how he probably sits quietly.....mostly unnoticed, while other kids play around him.    I had also anticipated hearing that Jade is thriving now that she is in first grade as she is a naturally curious learner.

Turns out, Kai is mister social. Yes, our kiddo on the autism spectrum....the one who we were told may never be verbal....is hamming it up with his classmates.   He is right in the mix. Not stimming in the corner and occasionally watching the other children, but playing with them. Having fun with them.   The kids may not always understand him due to his speech issues, but it seems he has related through the language of play, which is awesome.

....and get this.   Look at the picture below (These are the "finalist" drawings of the Willow Springs students to be voted on for the school T-shirt.)

Add caption

Kai's picture is the one in the lower left-hand corner with the four smiling people.   His was actually a finalist! (Not the winner, but hey...who cares. We're impressed with the effort!)

I had the opportunity to volunteer in his classroom on Thursday, and was able to see the Kai-ster in action. His teacher was not lying at that conference.   He was actually the little social-bug she said he was.    It was great to see him laughing and having fun.

Here's the kicker:   They're looking to exit him from special ed next year, but keep intensive speech services.   Three cheers for early intervention hey?!

Then there's little Miss Jade.   Miss Jade who is naturally pretty smart.   Well, turns out that she is little miss nosey-pants and can have a hard time focusing on herself.   Jade is also a social-bug, but does struggle to concentrate on her own learning without being distracted by what other kids are doing.    Doesn't surprise me I guess.

I was glad to hear that Jade has started talking with the kids in her class about China and adoption.   Apparently Jade's teacher was sharing a book about China one day, and Jade took this opportunity to explain China's "one child policy" to the group. She also wrote the her name in Chinese characters on the white-board and told the class its meaning.    Now Jade is needing to field lots of questions and is coming home talking about how to answer them.   [Explaining the difference between "stepmom" and "birthmom" was interesting, as other kids in the class talk about step-parents, which Jade thought was the same concept as birth-parents.]    Sigh....we're treading very close to the actual "where do babies really come from?" question, and my attempts to answer in an age-appropriate way are becoming challenged!   She's only SIX for cryin out loud!

As we venture toward the season of giving thanks, I am looking back on the past and reflecting on where we are today.  [ I am also thinking about yesterday, during a time of sharing at my parent's place of worhip. I mentioned that I frequently wish I was back in the workforce, feeling as if I was making a difference again and enjoying the respect of colleagues and other professionals.  As the folks in the group watched my children play, I was reminded of how being a mom to these kiddos IS making a difference. Sometimes it is hard to see the forest through the trees!]   As I continue to walk this journey one day at a time, today I am feeling gratitude.

Reminder to self: One. day. at. a. time.   Breathe.....

Parenting Enhancement

2011-10-30T21:36:00.000-07:00

A very strange metamorphasis has been happening within me throughout the past six months or so.  I have decided to make a commitment to physical and emotional well-being in a way that puts myself first.   I know.   That sounds selfish and scary.   I mean, what kind of mom puts her own needs before the needs of her family?

This February it will have been three years that Kai has been with us.   These have been three very difficult, tiring years.    They have been years filled with doctor appointments, assessments, neuropsych testing, occupational, physical and intensive speech therapies, and intensive weekly ABA therapy.   While they have been three very productive years, they have been years of complete and utter immersion in my kids' world....sometimes at the expense of things I once enjoyed.

The most difficult thing I realized that I had given up was personal goal-direction.    Since July of '07, all of my goals have been directed toward my children......Diving wholeheartedly into attachment-parenting with Jade; helping Kai to achieve milestone after milestone, or guiding him with speech/language articulation, etc.    Providing optimal parenting through structure and consistency to two kids with troubled backgrounds has been a worthwhile yet arduous task.

The passion that I have thurst into my parenting is necessarily becoming re-directed.   I've always needed some kind of personal challenge, and have found that if I put more energy into those self-actualizing pursuits, it only enhances my parenting.   Working out and climbing are a necessity, as are the creative outlets of cooking and art/stained glass.   Getting together with good friends is a non-negotiable.   Teaching families about healthy lifestyles, volunteering at my daughter's school, and serving on our village parks and rec board have helped me maintain my self-awareness as an educated and articulate woman who is more than just a mom to a kid with "needs".    Seriously, those "needs" can be omni-present and always will be, unless we/I make a dedicated effort to program self-nurturing into the wiring of my brain.   So far.....it has been working.

There is a vitality to life that I am rediscovering.....and I am content with the fact that I may not always be able to share these moments with my kids.   I am feeling less and less guilty about spending time "away" for periods of time in order to return feeling refreshed and non-resentful.   This is progress.

Introducing Thomas and Lightning

2011-10-10T08:22:00.000-07:00

One fish, two fish, red fish, blue fish!

We are proud to introduce two new family members....Thomas (blue) and Lightning (red). Both are betta fish (Bettas are Asian fighting fish, so they need to be kept separate or they will eat each other...hence, the divider.)

Our newest family members

Kai got to name these little guys in honor of his birthday. He'll also have the responsibility of feeding them and taking care of them (okay, with our help.) Now if we can just keep them from having little heart attacks...as the cats do find them very amusing.

Birthday "Bittersweetness"

2011-10-03T09:13:00.000-07:00

Saturday was Kai's 5th birthday. Birthdays are occasions to celebrate! Here's our Kai-guy celebrating turning 5:

I gotta admit though, that Kai's birthdays are tough on me. Last year when Kai turned 4, I kept thinking..."geez, we've gotten a lot of mileage out of telling people he was 3! I guess I had better gear up for more 'age explanations'." This year isn't much different.

Kai's delays become more and more obvious and pronounced with every birthday. Don't get me wrong....he has made fantastic progress! The fact that he physically and developmentally seems much younger is a reality that we deal with on a daily basis. Explaining Kai's issues to people when they ask his age gets really, really old (as you can imagine, even a well-meaning stranger asking "how old is he?" can lead to a loaded answer which I am frankly just burned out of answering.)

So this weekend was spent having a wonderful time with our good friends, Sandy, Ryan and Leah in Wisconsin Dells. It's amazing how acting silly, beautiful weather and good company can quickly remind you how great life can be! We had a fabulous time hiking and canoing in one of the most beautiful areas of the state. Kai interacted well and we returned home feeling refreshed! :)

gettin' silly in the Dells!

Captain Daddy and the kidlings

Jade and the "birthday boy!"

Insurance...ugh.

2011-09-18T08:33:00.000-07:00

We knew with all of the political schtick going on in education that we would see some changes this year (although rumor has it that worse changes are yet to come next year.)   While many consider this year to be a "holding pattern" year to see how the school board will respond to needs of the teachers, given the diminished bargaining power of the teacher's union, we are still affected.

Case-in-point is our insurance.    As has come to be expected and most of us know, insurance seems to promise the world while making many services cost-prohibitive.   Kai's ABA services were covered from September of last year to this September with our previous insurance.   Our new insurer has decided to place cost-prohibitive copays, totaling $560 out-of-pocket per month.   Our CLTS waiver (through the county) will pick up a portion of that...but we still are finding that we will be hit with a huge out-of-pocket monthly payment for Kai's ABA therapy.   We are in a position to continue for a few months, but are now considering the post-intensive option because we could swing that financially.

Yeah, insurance sucks.    Kai has made HUGE gains through ABA and we are thankful for that.   Truthfully, even if we do switch to post-intensive therapy (5-10 hours/wk) he will do just fine....largely due to the great early-intervention services under our belts.

Unfortunately so many families are struggling.   Those of us with kiddos with special needs are feeling the effects of this economy big-time.   I think about our kiddos' futures and pray that services are not eroded to the point where we return to the pre New Deal Era.     I know....it seems gloom-doom.   I'm just sayin.

Sigh.....

Happenings...

2011-09-11T20:20:00.000-07:00

As summer begins to give way to more autumn-like temps, we're trying to take advantage of being outdoors as much as possible as long as the weather remains nice. Here are the kiddos with Jim Sawgrass, of the Muskogee Creek (Seminole) Indian Tribe, and Little Big Mountain, of the Comanche Tribe. Both of these guys did an educational presentation at Indian Summer Festival on Saturday, which Jade and Kai really enjoyed. Jade was adamant that she and Kai get their picture taken, so here they are!

We took part in a Pow Wow, ate some fry bread, and got a beaded medicine bag and little hair-feather (to look like Pocahantis, of course). Naturally, the day is not complete without kickin' up the heels and doing a little dancing......

The day was a wonderful one!

Things that make us Laugh. The Husband.

2011-09-06T20:52:00.000-07:00

One of the things that we women like to joke about is how our men can be so "focused" while we are eternally multi-tasking. Sometimes we even tempt ourselves with wishing our men could think more like women....because geez, life would be so much easier if men would be more like us...at least some of the time, wouldn't it?

NOPE.

Scott and the kiddos on his 49th Birthday

My dear hubby Scott, bless his heart, tries very hard to be woman-like sometimes.   No, he does not don my clothing or flit around the house vacuuming (although he enjoys ironing).   But he DOES try very hard to attempt the multi-tasking thing in order to help out around the house.   Let me emphasise that he TRIES.   Sometimes even his best efforts screw up miserably.    Here are a couple of examples (there are more, but these are the most recent, and noteworthy.)

On Friday night as we were flurrying to get the kids ready for bed, Scott decided that he would work on helping with Kai's bedtime routine.   Kai usually has a BM after dinner, sometime before getting tucked into bed.   Scott thought that we would be efficient by multitasking this evening, thereby helping to take out Kai's speech prosthesis/retainer (aka his rainbow ) while Kai did his night-time duty on the throne.    As I came upstairs, I glanced at this awkward situation...and just as I was about to inquire, watched Scott lunge for the retainer (eliciting many exciting eplatives I might add...) as it had flipped out of Kai's mouth, fallen right between Kai's legs, and plopped into the runny, poopy toilet water.    I wasn't sure if I was going to hurl or pee my own pants--laughing at my dear hubby, who at this point was shouting "Aw man...gross, yuck (cough cough), ugh!!!" while he made his way to the sink--sludgy hands, poopy retainer and all.

Of course, the kids thought this was all quite interesting.   Kai continued to place blame: "Daddy, why you drop my rainbow in the toilet?"  While trying to contain myself, I went into mom mode...suggesting that he scub the appliance with antibacterial soap and HOT water first several times, followed by lots of toothpaste.   Of course, I commented that all of our family would laugh at this particular "Scott story."

And then the following day.... I was blessed with another opportunity to capitalize on yet another "Scott story." (a "two-fer" weekend!)

Most women would relish the opportunity for their husbands to help tackle their mountains of laundry.   Well....I was lucky enough to have my very thoughtful and dedicated hubby fold three loads.   Too bad two of those loads were dirty.   Yeah, as I was returning all pairs of socks to their drawers, I realized that some of them were still smelling a bit funky (Scott does not do the "sniff test," so he would not know!). It sure would've been nice to have that satisfied feeling of having all the laundry completed.   No......I got a whole lot more work and a silly story to tell instead!  Thanks honey!

The moral of this post is......... Men-folk are, by nature, simple creatures (that is Scott's term, not mine).   Guys can focus on one thing at a time, and when they are able to, they are usually quite successful.    Contrary to how some believe, men also DO want to please us women.   Unfortunately, they can frequently show their doofus-side in the process.  Multitasking?  Pleeease.....forget it!

Ah yes, they can also make us laugh.  What would life be without a little humor hey?

A different Kind of therapy

2011-08-28T09:42:00.000-07:00

It's funny.....having a kiddo with special needs forces us into a mindset where we are constantly looking for what will "work" when determining what helps our children thrive. With Jade, this was a no-brainer. She's a very focused little gal who pretty much sets her own goals (course, perfectionism can become a problem...). With Kai, we have always looked for ways to keep him engaged and focused, as his tendency has typically been to zone out or dissociate (this tendency has improved a lot, but it he can still use zoning out as a default mode.) Kai also came to us with very low muscle tone, and he has been in physical and occupational therapy for several years.

Kai was not walking when he came to us at 28 months.....in fact, he had no idea how his body worked. (It was pretty obvious that he was quite neglected). Here he is at the ol' age of 30 months learning to walk.

Now, before the kidlings, Scott and I enjoyed the thrill of rock climbing. We had given it up once the kids came into our lives, but this year we thought we'd do a family membership at the climbing gym...thinking that kids are naturally like little monkeys. Surprisingly, Kai has turned out to be a natural. Seriously. Look at him go!

Look at that undercling, and natural high-step!
We have to re-learn this natural technique as grown ups.

...and a frog step to the next sequence of moves...

showing no hesitation...

great transition over the chimney

yup, really up that high!

Ta-da!!! I did it!

Another thing that most folks probably wouldn't know about the climbing "personality type" is that, well, most of us tend to be a little quirky.   We're not much into conformity (did I say that?).    Then there's the aspect of being outdoors and gritty, and the cool element of being a part of something totally natural.   There's kind of a zen-space you naturally get into...where you're completely in the moment, not thinking about anything except the next climbing move.   For a kiddo who spent the first 28 months of his life lying in a crib, to climb is amazing.

Scott and I joke about how Kai's seeming weakness (reluctance to put much effort into things, which some would call laziness) plays out to be a strong point in climbing.   Kai climbs incredibly efficiently....and tirelessly.   (Contrast this to Jade who burns out her arms within the first ten feet and gets frustrated.)   Our little dude finds the entire journey up the rock fascinating....every little crack, spider web, bug and new dyno-move.    We couldn't be happier that he enjoys it!

Disclaimer:  Rock climbing is a very safe activity...when done properly. We've found that the monkey bars are far less safe!

Behaviorism, Politics and ABA

2011-08-04T01:02:00.000-07:00

It is interesting....this human behavior thing.     Every day I see and hear trained professionals work with my kiddo on the autism spectrum to help shape more appropriate behaviors.   These get recorded and graphed, and there is a real documented science to it.

The concept of reinforcement is used to encourage an increase in desired behaviors, as well as a decrease in undesired ones.   The hope is that eventually behaviors will become habitual and reinforcers can be faded, or gradually eliminated once the desired behaviors have been attained.

Of course, all of this flies out the window once we "cave" or give in to behaviors that are inappropriate (For example, giving Kai a treat even though he pinched his sister).

Point is, if we are rewarded for things that we do.....even if they are wrong, the likelihood of the behavior continuing is increased.   Treats and praise can serve as reinforcers, but unfortunately fear and approval can also play into the mix.    This is where the waters get muddy.

Earlier this week President Obama signed a deal to raise the debt ceiling, and in so doing, extended tax credits to the wealthiest Americans while compromising on sound programs which care for the poor, elderly and disabled.    This act has been preceded by other examples of "caving" into the demands of the GOP's political tantrums.

Yes, I liken all of this political schtick to how my kids sometimes try to get their way....make life really uncomfortable for mom (eg. meltdowns, whining, etc.) so that mom gives in just to stop the madness.     All parents intrinsically know this game plays out.....until the next time we're in a checkout line and our little one demands a candy bar.   The price paid to avert a short-term meltdown has its consequences in long-term expectations.

So, on a national scale, our leader has caved into a giant manipulation scheme, started by a large group of greedy egomaniacs who stamped their feet and whined and complained if they did not get their way.

Yeah, the issue of nation's debt crisis is more critical than our individual family dynamics.   Yet I did learn in "family systems theory" in grad school that the patterns people use to manipulate generally follow suit from smaller to larger systems.   The sad reality here is that vulnerable people are being hurt by the poor decision-making of our leader and those whom have the power to pave the future for our loved ones--the ones we've vowed to protect.

On a national level, I am disheartened to think that we have a leader who does have the political chutzpah to set appropriate limits for the (pardon my frankness) children in the White House.   As a momma bear, I am saddened to know that no matter how strongly I advocate for my kids (and my clients when I was a social worker), our own leaders do not have their backs.    The rights of the most vulnerable have just been used as a bargaining chip...

...and yes, (sigh) the political tantrums have worked.

Parenting a kiddo on the spectrum, and PTSD

2011-07-20T01:29:00.000-07:00

Hi again....I'm back at it: the blogging thing.

Truth is, I've been trying to find out how to do this coping thing.    Last month, our Lead Therapist with Easter Seals shared with me the recent research of parenting a child on the autism spectrum and the likelihood of developing symptoms that are similar to PTSD (see this article: Autism and PTSD).

Having worked in mental health, this concept resonated with me immediately.   Unfortunately, I somehow had the idea that this knowledge would make the experience a little easier.   Nope.

Here's the stuff I'm talking about:
Symptoms of PTSD fall into three main categories:

1. Repeated "reliving" of the event, which disturbs day-to-day activity
• Flashback episodes, where the event seems to be happening again and again
• Recurrent distressing memories of the event
• Repeated dreams of the event
• Physical reactions to situations that remind you of the traumatic event

2. Avoidance
• Emotional "numbing," or feeling as though you don’t care about anything
• Feelings of detachment
• Inability to remember important aspects of the trauma
• Lack of interest in normal activities
• Less expression of moods
• Staying away from places, people, or objects that remind you of the event
• Sense of having no future

3. Arousal
• Difficulty concentrating
• Exaggerated response to things that startle you
• Excess awareness (hypervigilance)
• Irritability or outbursts of anger
• Sleeping difficulties

You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:

• Agitation, or excitability
• Dizziness
• Fainting
• Feeling your heart beat in your chest (palpitations)
• Paleness

I think that I've been holding out on the "acceptance thing" for a while, as Kai's multiple ediologies have shed different lights on his diagnoses.   (I keep thinking that the effects of his orphanage neglect and trauma will gradually subside, which will bring forth improved functioning and behavior.)    What has been incredibly difficult is the fact that we are never quite sure what facet of our kiddo we are dealing with.  Expectations wax and wane.  Always.

I'm tired and numb.

My mother has mentioned repeatedly how much more difficult it has become for me to "let go and enjoy" life.  I'm constantly feeling the need to respond to my kiddo or engage my emotional barometer to determine if this time I can "let it go" or not.  I regularly prepare for my son's meltdown mode while simultaneously trying to explain his behavior to folks who may not understand (Note: one of the hazards of having studied behavior academically is the ever-present analyzing that we try not to do!)

So...the other stuff on the PTSD list:   Avoidance? check.   Emotional numbing, detatchment, inability to remember stuff? check.     Lack of interest in normal activities, less expression of moods, staying away from places, people, or objects that remind me that my kid is different, Sense of having no future? Check, check, check and check. YIKES! (sigh).   Difficulty concentrating? check.   Exaggerated startle response? check. Excess awareness, irritability, sleeping difficulties?   Check, check, and check. (Note that I'm writing this at 3:00 am.).   No dizziness, fainting or paleness, but definitely anxiety-related tightness in the chest at times.

Then throw in political schtick that is making things tough for families with kiddos with special needs.

Being a tough-minded person has always been helpful in getting through the hard times, but this stuff builds up (sigh again...).    Awww...Drat.

What HAVE we been up to?

2011-07-05T21:24:00.000-07:00

It has been quite the busy summer....in a good way. We have done a lot! Scott and I both coach the kids on soccer teams. It has been great for Kai to have the experience of assimilation with other kids (not that he is really interested in developing top-knotch soccer skills!) We've also been camping several times...the kiddos are really developing an appreciation for the outdoors.

Our family walked in the 4th of July Parade on behalf of senatorial candidate Sandy Pasch. We have continued to be politically active here in Wisconsin.

The kids have attended summer school programs, and Kai continues with his ABA therapy in the afternoons. The pool in the backyard continues to be a hit! Kai is under the water more than he is up. We're beginning to think he may grow gills.

Kai's ready for a goal!

Coach daddy and his team

Our little camping hoodlums

Our Jade-ster poses with Sandy Pasch, as we prepare for the parade.

Speech Prosthetics

2011-06-23T21:03:00.000-07:00

....yes, there is such a thing as a prosthesis for speech.    Kai has one of these... it is kind of like a retainer with a little extention into the soft palate.     He has this little appliance because he is unable to make certain speech sounds due to his soft palate being incapable of raising on its own to make high-pressure vocalizations.

This little thing has been a major pain.   Seriously.   I have been back and forth to Children's Hospital and the prosthedontist several times within the past few months for "fine tuning" Kai's appliance and for specialized speech therapy.    Kai now has metal bands on the backs of his molars to attach the appliance because his teeth were not large enough to keep the retainer held on.    He is also not the kind of kid to turn down a fruit snack or peanut butter, which has probably contributed to the loosening of the "fit" of the appliance.

We keep it in all day long, and remove (and clean....ick!) at bed time.   We are happy to report that Kai's speech is improving!

Here we are...

2011-06-16T15:31:00.000-07:00

On Tuesday of this week, our Wisconsin legislature passed a bill to eliminate collective bargaining for public employee unions in the state of WI. While most folks don't fully understand the impact of this kind of legislation, first of all, simply try to imagine having your basic right-to-vote taken away. Now, I thought I'd capture "in a nutshell" what this could mean for us...with dear hubby working in public education.

Basically, it will be up to the school board...as the teachers will now NOT have any decision-making ability... to make choices which impact the well-being of the school staff. This would likely include:

Determining duties "as assigned" for teaching and non-administrative staff, which could be responsibilities outside of teacher training and/or experience. Basically, if the administration says "Scott, we want you to teach kindergarten, though you've never taught it or were trained to teach it, and you will meet our performance expectations...and your job may be on the line." He can't say "Sorry, I can't."
Deciding upon a potential wage freeze, which would include no experience step increases, and no lane movement for additional education credits or degrees. Yup...all of that education and seniority goes out the window.
The potental to set the calendar and the number of contract days, length of work day, in-service days, work days, snow days, etc. Potentially, longer workdays and more workdays for the same or less pay. So much for being home with the family more.
Determining the language that sets the health benefit standard (e.g. deductibles, drug card, maximum out-of-pocket costs for employee families) Oh yeah...you better bet this one would hit us in our pocketbook, with two medically-intensive children.
Increasing the employee insurance premium contribution to more than 12%.
Potentially replacing the judgment of an independent arbitrator on grievances and non-renewal decisions with the collective judgment of the school board.
Removing the power of the staff from any decision-making power in determining when mandatory meetings are set, the utilization of sick or personal days, or basically anything of significance. (Yes, essentially, there is a "overlord/serf" mentality emerging here...)
Likely eliminating the current publicly-managed, (nearly) fully-funded retirement benefit and replacing it with lord-knows-what. (Obviously some privately sponsored corporate entity. We can trust our retirement assets to those folks, right? Remember Enron?)

We expect that these issues are getting hashed out as I type this....in private meetings with the school board.   Scott is anticipating a call at the end of June (as the collective bargaining thing goes into effect on June 29th.) to explain what is going to happen.

We have been lucky enough to have some flexibility in Scott's job when the kids have hospitalizations and / or significant medical schtick.    My fingers are crossed that the school board will have a heart and continue to take these kinds of things into consideration, now that we are essentially at their mercy.   (Luckily Scott is a nice guy and a hard worker who has proven himself...but who knows what the "powers that be" may determine.)
We are bracing for a change in our medical insurance, which has been admittedly wonderful (and the reason behind our deciding to adopt children with special medical needs. I believe our thought was, "While we may not not be blessed to have a lot of money, we do have great medical insurance," and so...made the decision to go ahead with "special needs" adoptions.)   The rumor has been that many school districts in the area are changing to a health care system with a high deductible.     Sigh.... We'll already be taking an approximate $550 / month hit financially, which does not include medical deductibles.    We're anticipating a bone-grafting surgery for Jade within the next couple of years, cleft team assesments, and continued prosthetic speech management and therapies for Kai. (Luckly he qualifies for the autism waiver through the county as of this point, but annual neuropsych assessments [around $2000] would come under insurance.)

Oh yeah...it is my birthday today.  Any guesses as to what my wish will be when I blow out my candles?

...and the wish is not just for us. It is for all of the families out there who will suffer under this new legilsation, in many, many states.

(BTW, I share this stuff not to proport continuous negativity or pessimism. I share this stuff as a real family who is being negatively affected by these issues. We are not lazy. We are not freeloaders. Neither are most folks whom this legislation is affecting.)

The Case Against Privitizing Education

2011-06-08T10:53:00.000-07:00

Privitizing education is a BAD, BAD idea....especially for kiddos with special needs. Here, Senator Jon Erpenbach explains why.

Here in Wisconsin, we are still living through the nightmare called the "Walker Administration." Unfortunately, this is just the tip of the iceberg.

A "Celebration of Nations" Adoptive Family Weekend

2011-06-06T14:05:00.000-07:00

June 3-5 we took part in A Celebration of Nations....Adoptive Family Weekend at Camp Minikani. We were one of twelve families, all of whom have been involved with trans-racial / international adoption.

"The gang" at Camp Minikani.....adoptive family weekend

Our little bathing hoodlums

equestrian Jade

Kai found a buddy.....a june bug

Roasting marshmellows by the campfire

Jade and her friend, Ivy....these two were inseperable over the weekend!

We had a wonderful time! It was good to see old friends and make some new ones. The weather was perfect! We look forward to returning next year.....

Memorial Day Weekend

2011-05-30T19:48:00.000-07:00

In Wisconsin, we wait forever for nice weather. This weekend, we indulged as we took in the sunshine.

Trying so hard to get that kite to fly!

...um, we're trying to teach the kiddos to play catch.

This pic pretty much sums op our kiddos' personalities!

...with a little help from mom...

Daddy had a try too...

...checking out the geese

...capping off the day with a margarita, while the kiddos played

Heading home!

Seedlings and Kids

2011-05-17T07:15:00.000-07:00

This year I decided to buy a seed-starter kit....thought it would be a good way to teach the kids about nurture and growing things. It has been fun, until we decided to venture out and plant these growing things outside. Wisconsin weather is unpredictable at best, even in the month of May. So.....in the midst of the ebb and flow of our Wisconsin weather I have found myself beholden to my plants. They are still pretty fragile and require a lot of care.

No, I am not writing a gardening post today. Believe it or not, this is a post about parenting our adoptive children.

Our kids are not that unlike our fledgling tomato plants. One day of intense wind and rain can wilt the little buggers, until we provide some kind of protection from the elements (I purchased $10 of burlap and a couple of metal frames. Last night we brought our tomato tower inside). They need a lot of sunshine and plenty of water, air and nurture. Our kiddos are kind of like that too....

Last weekend Scott and I attended a wedding, while my kiddos spent the night at my folks. We had a Mother's Day dinner on Sunday with friends and family out of town and it was pleasant (not). Kai was a stimmy-mess. I seriously spent the entire dinner trying to keep Kai from destryong something or ending up under the table. He had "checked out" emotionally and physically, and had tried to organize his little world by stimming away.

Jade, on the other hand, was her spunky little self, albeit somewhat "worked up." She's easier to reel in than she used to be, but it still takes some time after a weekend that is out of the ordinary.

Sigh.....Scott and I have discussed this subject to death. We so WANT the "typical" parenting experience. You know, the kind where you can just drop the kids off wherever and do your own thing. Sometimes, we do. BUT there is always the fallout afterward. Folks with typically developing kids will say that "all kids go through this." Sorry....not to our extent. (Another sigh...)

As I have fretted over my newly emerging plants this week, I am struck by how similar they are to my children. They DO need plenty of warmth and nurture, and my tending to them needs to be incredibly consistent and holistic. My understanding of their little moods and tempraments should indicate how their needs are met, just as the rains and winds suggest how we manage our emerging seedlings.

We now have our tomato tower sitting in our small kitchen in front of the patio door. The harsh winds have taken their toll on my basil. Today its looking okay....our fingers are crossed that it'll survive. Our kiddos are finally settled. Kai has stopped having potty-accidents and had a dry night last night (Yippee!) We're going to have dinner together and play a game tonight, and Jade is psyched.

Goings on....

2011-05-12T06:38:00.000-07:00

I've been somewhat absent from the blogosphere for a while (mea culpa to my bloggy friends, I do mean to get caught up soon!) but it hasn't been for naught.   We've had a lot going on here these days.    Yes, I AM going to blog about it today....I'm all set with coffee in hand.   Here goes:

Kai update:   I think that we're nearing the end of our marathon of medical appointments. Keep your fingers crossed!   What we have learned:    Kai does NOT have any genetic anomalies which would account for his delays and eccentricities.   Previously it had been thought by various clinicians on Kai's team that he could have had something called velocardiofacial syndrome (given Kai's misplaced carotid arteries, asymmetrical clefting, previous endocrine issues, short stature, velopharyngeal [soft palate] insufficiency and speech/learning delays.).   However, genetic findings have proven this not to be the case!   Time and time again the docs are beginning to tell us that they believe many, many of Kai's issues appear to be a result of his early neglect and malnutrition (see Kai's GOA story and Kai's journey/Our journey pages).

Kai is continuing to get used to his speech prosthesis, although this is still labor intensive.   We've been to the prosthedontist several times to get the appropriate fitting, and back to Children's Hospital to have Kai's speech evaluated with the device in.   Looks like we'll be back at the prosthedontist's office next week Wednesday again for another fitting.    The good news is that his speech IS improving!    He's talking a whole lot more and I think that he is really, really proud of himself. (yeah!)

Kai's awesome Easter Seals ABA Team is continuing to work wonders with him!   He's making fantabulous gains all around and we're seriously all reaping the benefits of their hard work:   Kai's meltdowns have decreased significantly, he's making appropriate requests using words, his play skills are fantastic (even pretend play!), and he is doing really well in all of his learning programs.   We have Kai's IEP meeting in early June, and I think everyone is on-board with mainstreaming for next year, when Kai starts K-4 (with a whole lotta extra speech therapy).

Jade has been doing well in Kindergarten.   Here she is at her spring concert looking like a cat... she's the one on the far right (can you tell it's a farm theme? Just look at all those cute little square pigs in the background.).

Lately I have been realizing that I truly think I've been horribly mistaken about girl behavior, presuming that little girl attitudes begin around middle-school. NOT! I have found that these little attitudes do start in Kindergarten already. Yup, the hand-on-hip, eye rolling, bossy thing has already begun. Sigh....I swear that little girls pick it up from eachother because somehow they think it is cool. Whassup with THAT?

Why else have I been off the blogosphere?
As many of you know from my previous posts, the political situation here in WI has been really really hideous.    Now, I've always been an advocator.   I wouldn't have become a social worker if I wasn't.   I think that whatever the nuns taught me in grade school about fairness and equality and the golden rule penetrated deeply and securely into my bones because I can't let injustice go.   I just can't.   In principle or in conscience.    But then there's this:

Our governor is spearheading a huge effort to privatize the public education system ....nationwide!   My husband works in a public school.   Scott became a school psychologist because he wanted to make a difference in the lives of children and help kids that struggle with school.  He wanted to help children with special needs to achieve their best, utilizing all of the resources available. Who woulda thunk that we'd actually have a kid like that, hey?   Anyhow, Governor Walker wants to change all of that by allowing big business to have a hand in how our children get educated.    Yup, big business....that's who would be buying up the charter schools, and given liberties to set all of their own standards.   Take a guess.....who do you think would suffer?

I'll spare you the gory details of how great the Wisconsin public education system has been.   I'll even spare you the documentation which proves that charter schools have failed to provide an education that comes anywhere near to what our public schools have done (I'm not talking about well-established parochial schools here....like the ones you and I may have gone to.)

So...yes.   We are afraid for what might happen with Scott's job.   We are afraid for the future of our children's education.   We are particularly afraid about what might happen with special education, because we all KNOW that that's where the expenses are.   With the political climate being what it has been, I'm expecting that those [our] kids will no longer be a priority.   Sorry....I don't mean to be a downer.   I'm just sayin.   When finances are tight, who do we take it out on?

We're posed to lose our current medical insurance at the end of this contracted school year (June), which would be replaced with lord-knows.    We're also anticipating a significant (about $550) montly loss of income....not to mention whatever medical co-pays or deductibles might be accrued (with two cleft-affected children that adds up quickly!).

Ah yes, and then there's medicare.    Should I even go there???   This post is getting really long. Sorry folks, that's what happens when I step away for a while.   For now, it looks like the GOP is starting to seal the bill's own fate.   Let's keep hoping.    As far as Kai is concerned, we're thankfully able to have it as a back-up.   And, if our ABA services begin to incur co-pays / deductibles under whatever our next insurance might be, they would be covered under the autism waiver / mandate.    WAIT....with the new budget here in WI, THAT'S at stake too!     See what I mean?

What HAVE we been doing about these things?

Well, I have been trying to do a lot of educating folks.   As a beginning facebooker, I had vowed to never discuss politics or religion on facebook, lest I offend anyone. BUT, What's happening in our state and our country has gotten my ire up... Like I said, I can't let injustice go.   I just can't.   So, I've found the internet to be a huge place to network and get things done.    I've joined more groups, written more letters, given more political feedback, gone to more rallys, signed more petitions, and attended more political events than I had ever imagined.   Oh yeah, and my husband did some canvassing to recall one particular senator and I did some phone-banking.

That's what we've been up to.

And I've found.....there's SO much more to be done.

We're at a point in our history where I'm afraid that the civil rights which were secured in the '60's and '70's could be overturned in an instant.   My Christian upbringing and understanding of social justice says that THIS is the stuff that Jesus got angry at.   When the huge powers began to loom over the sick, the disabled, the elderly, the poor, the disenfranchised and the voiceless....and to take away their basic human rights and dignities. This is the stuff that all of the prophetic voices ahead of us have railed against.

And so, we continue the effort.....These two (and my other one who is working right now) are well worth it!

Happy Springtime!

Fresh Faces

2011-05-02T20:55:00.000-07:00

A few weeks ago I posted about this......here they are, my little angels (not! Isn't it amazing how deceiving photos can be?)

BTW, the blurb in the corner "Best Mom Ever" in the corner is PURELY coincidental! (there's a corresponding article in the magazine this month). However, I do think that the "Beat Mommy Burnout" would be fitting....

An Easter morning without a Meltdown!

2011-04-24T09:02:00.000-07:00

Yes....this morning we are celebrating the FIRST (yes, first) Easter morning without a meltdown from our Kai-man. He actually was able to participate in the Easter egg hunt and feel proud of himself for finding eggs all by himself! (Last year and the year before, this was way to over-stimulating and effortful for Kai. In fact, he spent much of Easter morning last year in his room stimming.)

"Hey...look! I found it by myslf!"

Ah, the lure of sweets...

The Kidlings...

2011-04-17T20:35:00.000-07:00

This morning I snuck up on the kidlings....this is what they were doing. Luckily I had my camera ready!

BTW, they don't always get along this well. I caught them in a good moment....

For our children, our parents, and our loved ones...

2011-04-12T11:50:00.000-07:00

Tomorrow evening, President Obama is going to propose cutting the deficit by, according to his top aide: taking a "look at Medicare and Medicaid." He's also "eager" to have a "discussion" on Social Security.   Please take a moment to click on the link below, and strongly urge him to reject any cuts to Medicare, Medicaid and Social Security benefits in any deficit reduction plan. There is no need to balance the budget on the backs of the disabled, the elderly and the poor.

Tell Obama:   "Do NOT Cut Medicare, Medicaid or Social Security!"

We need to raise our voices on behalf of those who are not able.

Kai's rainbow

2011-04-09T08:48:00.000-07:00

Kai's "obturator" (speech appliance), which he affectionatly calls his "rainbow."

You may remember back in December, I wrote this post about our appointment with the speech folks at Children's Hospital.   Since then we learned that Kai would not be a candidate for a pharyngeal flap surgery because of his ectopic carotid arteries, and would therefore need to be fitted with a speech appliance.    He received his "rainbow" last week Wednesday, and is slowly getting used to it (so are we.)

Let me start off by mentioning that I constantly need to remind myself to let go of expectations.   All they serve to do is set us up for disappointment and readjustment once again.    Initially I thought that Kai's speech would really take off once he began wearing his speech device (which works by the "speech bulb" raising in place of his soft palate to initiate high pressure vocalizations, such as b, p, d, as well as sounds which raise the soft palate such as g and k.)   What I had forgotten about (duh!) is the fact that Kai has a really, really tough time with changes which impose any hint of discomfort.   Wearing a retainer, for HIM, definitely presented a new hurdle to overcome.

Because Kai spent the first 2 1/2 years of his life with a cleft in his palate, he was used to resonating speech sounds through his nose (I know...sounds weird, doesn't it?). Well, this tendency continues, and he constantly needs reminders to open his mouth wider when speaking. (For a kid who got by NOT communicating in his first two years...and still feels it is okay to a point, working harder to make understandable speech is not something he is excited about.) We're definitely needing to take a long-range-goal approach here, and we've enlisted the support of Kai's ABA therapists to help us out by really rewarding his good speech.   When he tries, he sounds AWESOME!

In Honor of Dr. Martin Luther King

2011-04-04T09:37:00.000-07:00

43 Years ago today, Dr. Martin Luther King was assassinated in Memphis TN. Today we commemorate his life by passing on the spirit!

Some GOOD News!

2011-04-01T15:12:00.000-07:00

Wouldn't cha know it....our little hoodlums are going to be little shining stars! I received a phone call from Metroparent Magazine, informing us that they would like both Jade and Kai to be models the cover of their May (Mother's Day) issue.

Check out Metroparent here: Metroparent Magazine, Milwaukee Moms. We are totally psyched here at our house! The photo-shoot is happening next Friday.....and the really cool thing is, the kids will be photographed in their jammies. ;)

Now, those of you who know me know that I am not a Jean-Binet type of mom. I just totally thought this would be an awesome experience for the kids' self-esteem. Stay tuned...if I can, I'll post the pic here!

Not Feelin' it....

2011-03-28T13:35:00.000-07:00

Apoligizing to all of my bloggy friends out there, cuz I've been a blogging slacker.  I'm just not feelin' it these days....the blogging thing.

Maybe it's the stress of this whole budget crisis thing and how it is affecting us.    Maybe it is the fact that blogging isn't as much fun without linking up to blog hops and stuff (I'm not paying to subscribe to linky-tools.) Maybe it is the fact that my kiddo is such a mixed bag of issues and he doesn't fit into any particular category neatly, and I'm struggling to put that into words.   Maybe I'm depressed.    Who knows.

Times are not easy.   Last night I fell asleep on my husband while watching TV at 9:00 and slept through until 7:00 this morning.

The positives?   Spring is nearly here, and the kids are finally beginning to play outside and get their wiggles out.   My daughter will be turning 6 next month and she's excited about that...we'll be having a family celebration.   Kai is making wonderful gains in many, many areas (which we're grateful for) but his [post-orphanage related] passive-aggressive behavior and his meltdowns are still a big-ol pain in the butt.  We have a waterpark weekend planned with friends which should be a lot of fun.    Anything to get out of the norm!

.........

Play time...

2011-03-22T11:06:00.000-07:00

Kai has made great strides with his play skills.... look at him go!

Steady Eddie!

Wouldn't it be great if these vacuum cleaners actually WORKED?

Jade and Kai with their cousins Tyler, Justin and Hope (at my dad's 70th birthday party)

Full circle

2011-03-17T21:39:00.000-07:00

Okay...so I have had my undies in a bundle lately about all the political schtick going on here in Wisconsin. What can I say, I'm a pretty passionate person about these things. But this is a blog about our FAMILY and our experience of raising a child with special needs. I feel a slight twinge of guilt for breaking away with the subject matter to vent my political rantings.....until I realize that so much about our role as parents and caregivers of children in today's society does hinge on the current political goings-on. Let me explain:

Back in December I wrote this post. I discussed what we came to understand about the environmental problems in China and how that may have contributed to some of Kai's issues. Since then, I learned that the incidences of children born with birth defects in China have increased by 40 percent since 2001. In fact, another estimate states that approximately 1 in 8 to 10 children in China are born with birth defects. (Source: Understanding the Current Situation in China's Orphanages). It is not coincidental that these estimates coincide with the timing of factories and corporations moving from the US to overseas, as a result of NAFTA (North American Free Trade Agreement) and GATT (Global Agreement on Tarrifs and Trade).

In graduate school in the early '90's, I remember writing a paper on the predicted effects of NAFTA...postulating that these trade agreements would have a disasterous effect on the infrastructure of US cities and the environment (in Milwaukee Briggs and Stratton and Master Lock were companies that moved overseas at the time). This was on the heels of the late '80's, when Ronald Reagan backed dictatorial governments in Mexico and Central America for purposes of moving the indigenous people off of their land to impose our agenda of expanding global economy in those countries. Hundreds of thousands of campesino farmers and their families lost their lives defending their land and their livelihoods. Yes, it was brutal....and yes, it was because of national and corporate greed. That was the beginning.

Somewhere along the line I stopped thinking about this stuff. Yeah, I noticed that more and more things were stamped "made in China," and I had some idea that folks in other countries were discontented. I did not understand how large corporations were systematically laying the groundwork to "buddy up" with international governments or that the growing rift among the classes was largely the result of these allied relationships. Most people don't think about these things. Most people don't think in terms of "bracing" for an attack on their rights or to be taken advantage of. This was not part of our world growing up (other than in the game of chess or battleship!)

And so, since the '90's we have seen tons of environmental problems resulting from globalization, and lots and lots of human rights abuses occuring in places like China and other countries. When we were in China I was amazed at the constant fear that people live under on a daily basis....simply for expressing any questioning of or distrust in their government (Here's an example.). Never in a million years did I think that this monster of greed would come to knock on the door of our family, our state, or our nation.

Never in a million years did I think that we would be in a situation where we would have to defend the reasons that WE are fighting for OUR livelihood. The reasons for having unions used to be a given. We have seen all too often that it can be in our human nature to take advantage of folks if no one is watching, or if we THINK no one will notice.

Places like China can still get away with neglecting and abandoning their children, as well as maintaining a feudal-type society. There are still oppressive governments that are allowed to operate that way.... because we believe the crap they feed us so we buy their products and keep their status quo going. Cheaper products DO come at a price. We seldom realize the reality (and we probably don't want to know....the ol' "ignorance is bliss" adage.)

Coming "full circle," I realize that my role as a mom is dramatically affected by what is happening in our nation and our world right now. My children are from China. Some day they will ask the difficult questions about the state of affairs in China, and we will attempt to explain it to them (along with discussing the immense beauty of the land, culture and people of China). Our changing global economy has had an effect on many, many aspects of our lives, from [possibly] the etiology of our childrens' birth defects to the current battle for workers' rights.

I take great comfort from the words of my hubby: "Ya know, whatever happens....we will always have eachother, and our family." That's right honey...we do.

Deep peace of the running wave to you.

Deep peace of the flowing air to you.

Deep peace of the quiet earth to you.

Deep peace of the shining stars to you.

Deep peace of the Son of Peace to you.

A plea...

2011-03-14T07:48:00.000-07:00

Kai and Jade in front of the capitol in Madison, WI.

Last night I composed this letter. I know, probably just a drop in the ocean. We're doing all that we can here and becoming politically active on all levels. Thought this little letter wouldn't hurt.

Dear President Obama,

This year when my husband and I were Christmas shopping for our 5 year old daughter, I came upon your book: "Of Thee I Sing." As I stood in the aisle of Barnes and Noble reading it, your book brought tears to my eyes. I was so excited to read your historically poignant and meaningful book to my daughter, Jade. Through these illustrations, she has come to know the strength and the stories of the people you speak of: Georgia O'Keefe, Hellen Keller, Dr. Martin Luther King, Sitting Bull, Cezar Chavez, and the others.

Jade was with us this past weekend in Madison, WI, and brilliantly recalled those words of Chavez "Si Se Puede!" which you so beautifully and vividly depicted in your book...being chanted by union workers marching around the capitol. It was truly inspirational, and a proud moment to be a parent.

Jade is growing up in times not too different than those you spoke of in your book. She has learned about Dr. King in school, but is now actually able to understand a little more deeply how a society can trample on the rights of common people.

President Obama, I understand that we are living in very difficult financial times, where corporations and special interests seem to be becoming more powerful than our democracy. You inherited a mess, and I know that you are doing your best to manage our country's crises when the stakes are at an all-time high.

But I fear for our future as middle-class citizens. While I understand the importance of separation of state and federal governments, I feel that what our newly-elected governor and the GOP are doing is truly criminal. I keep thinking that there must be some way to keep these radical agendas from coming to fruition, as the principles and tactics recommended are in no way democratic OR just. They are hurtful.

I am a mom of two adopted children, one of whom has significant special needs. My husband works for a public school. We soon will be taking a huge financial hit, and our son will likely lose his medicare. Yes, I fear for our family, but I am more concerned for the millions of families who will suffer because of these radical changes.

I want to give my daughter hope. I want my daughter to know that the author of that wonderful book (and president of our United States) cares about us and will not allow us to be "bullied." Thank you for reading this!

Sincerely,
Christine Prange-Morgan

"Monkeying around" with Insurance Mandates

2011-03-08T08:33:00.000-08:00

Can things get any worse here? First, the proposed new Wisconsin budget repair bill will take away our current medical insurance (WEA Trust) to replace it with the "state medical insurance." Our son has a host of medical issues which we have been fortunate enough to have been able to address and he is doing well. He is making wonderful gains....thanks to all of his therapies, teachers, and medical professionals.

But WAIT..... are you ready for this?

Take a look: Bill to Allow Insurance Companies to Ignore State Mandates. Are you friggin kidding me?!? Walker wants to NOT ONLY gouge Medicare (and thus, aid to the diabled and the elderly), but he also wants to dis-assemble the insurance mandates which folks fought hard to gain for their families. Among these is the Autism Mandate, which our son has benefitted hugely from.

We're not the only families out there dealing with these issues. What's REALLY upsetting is the fact that these kind of changes will happen nationwide if folks do not STEP UP and have our stories and our voices be heard!

What can you do?

If you're from Wisconsin, you can sign a petition to Recall Governor Walker
If you're from Wisconsin, you can join on to Recall the Republican 8....the folks who are in agreement with these proposed changes.
If you're from Wisconsin, be sure to vote for Joanne Kloppenburg for Supreme Court on April 5th....a vote for Prosser would be a vote for Walker's proposal.
You can contact your own legislators and express your extreme concerns for the turn that not only Wisconsin is taking, but also for this trend nationwide.
You can tell YOUR story....to anyone who will listen.

This is not the state, nor the country I grew up in. We need to speak for those who cannot speak for themselves.....our children.

...bear with me...

2011-03-05T09:09:00.000-08:00

I have never been the kind of person to quote scripture or other sources to make my point about something. I've found that there is always enough information in these sources where people can pick and choose whatever they want to underscore their point on any issue. However, with that said, I keep coming back to some fundamental principles that seem to be lacking which have their roots in some of these places.

Okay, so I was raised Catholic and attended Catholic elementary school. We attended Church every Sunday. I was lucky enough to know that I lived within a community of people who cared about one another. People were tolerant, and yes...maybe a little idealistic. After all, I did grow up in the '70's when idealism and hope were paramount virtues.

...and there was this thing called the "Golden Rule" which folks seemed to understand and try to embody. That is.....to love your neighbor as yourself; or treat others how you would like them to treat you. Of course, I remember that the beginning of this was rooted in the Gospel...to love God with your whole heart, mind and soul, which necessarily leads to seeing God in the dignity of all of humankind. Not too tough to understand really, unless you've got an agenda which undermines the dignity of folks (in which case the Golden Rule goes out the window all together.)

In the Indian religions (Buddhism, Hinduism) we have the concept of Ahimsa, which refers to kindness and non-violence towards all living things, respecting all living beings as a unity, and the belief that all living things are connected.

Prominent Jewish theologian and rabbi Abraham Joshua Heschel wrote the following in I Asked for Wonder: "...Mistaking the abortions of their conscience for intellectual heroism, many thinkers employ clever pens to scold and scorn the reverence for life, the awe for truth, the loyalty to justice. The conscience of the world was destroyed by those who were wont to blame others rather than themselves. Let us remember. We revered the instincts but distrusted the prophets. We labored to perfect engines and let our inner life go to wreck....we have helped to extinguish the light our fathers had kindled. We have bartered holiness for convenience, loyalty for success, love for power, wisdom for information, tradition for fashion."

Ah yes, we find that history repeats itself. This kind of thing has happened throughout human history, and wise and brave people have come forward with prophetic voices to stand for principles of truth and justice.

And here we are in our little state of Wisconsin....at the crossroads of history.

Yes, we are personally affected by the proposed oppresive "budget repair bill."   We have a son with a disability (receiving medicaid...which is on the chopping block) and my husband's profession / job is being dragged through the dirt.   We are personally having to educate a lot of people about how real people (aka. us) will suffer under the proposed changes of our new governor.   All of that aside though... I am finding a renewed sense of energy and vitality.

What is happening here is re-emphasizing and re-invigorating some of these age-old virtues that prophets from all previous generations have called our attention to.

Forgive my overly moralistic and zealous tone today.   There are very few instances where I'm able to retrieve some of my theology training and apply them to real-life situations.    (I left the field of ministry to do social work....they really do go hand-in-hand!)   Isn't it about how we treat....the poor, the oppressed, the widow, the orphan, the the elderly, and the disenfranchised?   I think so.

I leave you with this video....it is quite inspiring :)

Madison!

2011-02-27T07:35:00.000-08:00

Yeah....we thought someone was taking a photo, and it was set on video....duh! Thought it was silly enough to post to the blog though! :)

In Madison with my friends Heidi (the dancing woman in front), Joan

and her kids Emma and Isabel.

Yesterday I had the opportunity to join 100,000 other protesters in Madison to stand with people defending the nation's middle-class. It was inspiring to see such dedicated, intelligent individuals of all ages....children, elderly, handicapped, college students, teachers, union workers, and countless other folks who will NOT allow our governor to trample on the rights of middle class folks. It was a proud moment.

(Thank you to my husband for staying home with the kids...Jade has been sick with a sinus infection this week.)

Inside of the rotunda....

We joined thousands of protesters in the state capitol...many of them

teachers and educators.

Generations of working folks will not be silenced!

It's the incredible left-leaning Wisconsin State Capitol! (well...in this photo anyway)

I find it so interesting how this is all playing out....in our little state of Wisconsin. Man, who woulda thought this would become national, even INTERNATIONAL news? Even unions in Poland are supporting us! These are history-defining times.

Why this all MATTERS...

2011-02-22T21:35:00.000-08:00

....to US.

I'm talking about the ongoing protesting here in Wisconsin over Governor Scott Walker's proposed "budget repair bill."   Honestly, I've had a hard time getting my mind off of it this past week.....it affects so much of our lives and our future.

First of all, it looks like we could lose our current health insurance.....this is the health insurance plan which played a huge part in our decision to adopt children with special needs.    When we had Jade's little photo in our hands (Jade has a bilateral cleft palate) and knew we wanted to bring her home, I pleaded with my husband to consider the fact that we had excellent medical insurance....I considered it a privilege and a gift which would help our children. We have all been blessed by the incredible gains our kiddos have made through utilization of our health insurance plan.    This could potentially come to an end this coming June.

Should we have anticipated something like this could happen? Probably.   After all, no one can ever predict the future....and shame on us for being optimistic and thinking that perhaps we could make a little bit of a difference by helping to correct our childrens' special needs.

Yeah, I get it.   Folks everywhere are having to make sacrifices.   We KNOW sacrifice.   Ever since bringing home our son who has a plethora of special needs, I have not been able to return to work in my profession.   His daily therapies, medical appointments and visits to countless specialists preclude my returning to the workplace for full-time employment.

I miss my career and the paycheck.   I would love to have a gleaming house with a beautiful kitchen to cook in, a mudroom for the kids' snowy boots, and walk-in closets.    But here we are.   I love my children, and there is no alternative.

AND, I love my husband.    He came home from work today and stated that one of his colleagues who has been the "wise sage" at his school for 24 years agreed that there is a lingering malaise among the teaching staff.    The teachers and staff are feeling an overall lack of respect for their profession, despite the incredible hard work that they do on a daily basis.    On top of this is the misinformation that education professionals have these huge paychecks, which is ridiculous.   (This is a long, boring article describing the reality, if you're interested:  Debunking the Myth of the Overcompensated Public Employee.)   Teachers don't get into the profession to get rich.....come on people!

Okay, so we're looking at the possibility of losing around ten percent of my husband's paycheck.   We'd make it....it wouldn't be comfortable, but we'd get by.

Why else does this matter?   Walker wants to also cut Medicaid....that is, for the disabled (eg. our son).   Just as we're looking at the possibility of changing our medical insurance and accruing steep copays , we are considering the possibility that the rug may be pulled out once again by the cutting of medicaid.    What is happening??? Surely a budget deficit should not usher in such drastic measures to hurt the most vulnerable people.    (Then again, I'm assuming that those making our laws have a pulse.)

OH....and that collective bargaining thing.    The proposed bill (and Walker's insistence that it stands "as is") could affect current public service union workers such as teachers, much like taking away a woman's right to vote.   This legislative action would remove the ability of folks to have a say in their working conditions or decisions affecting their professional well-being, something which they have had for over 50 years in this state.    (BTW, WI arguably has one of the best school systems in the nation....if the bill passes, this may be a reality of the past.)

Lastly, Our little kindergartener is learning about bullying in school.   She has even seen it first-hand on the playground at her tender age of 5.   Through these events we have helped her to learn how to use her words when approached by bullies...and she seems to be doing a darn good job at holding her own! (more on that in another post.)    By standing up for our own rights, I think we'll continue to be good role models for her, as well as other children who look up to their teachers.    Bullies do exist....unfortunately.    It is our job as parents to teach our kids that they have value and are worthwhile, despite the opposing forces against them.     We are our kids' best teachers, and our examples speak volumes.

Still pressing on!

Could this become the new Wisconsin?

2011-02-17T08:53:00.000-08:00

The Guatemalan National Guard approach village women during an organization
to protect their rights.

Yes, our governor threatened to bring out the national guard if workers did not cooperate.   I had always thought that this is the kind of stuff that happens in other countries, not ours.

Wisconsin has a long history of using the collective bargaining process to settle disputes.   Apparently our governor is intent on changing that under the guise of "balancing the budget."

Things in Wisconsin have been heated.....see this article:   New York Times: Angry Demonstration in Wisconsin.

Happy Anniversary Honey.....Now let's get Political!

2011-02-14T22:05:00.000-08:00

Who woulda thought.....

Six years ago, when Scott and I got married, that we'd end up traveling to China to adopt two children?
....that I would've become a SAHM, and we'd be in a situation of caring for a child with special needs?
....or that Scott's working conditions would be in jeopardy because of political events in our state?

Hmmm.....do we know what we're in for?

February 15th is our Wedding Anniversary. We had plans for a nice dinner at Lake Park Bistro (compliments of a gift card from my father-in-law). Those plans got derailed today.   We're going to a political rally/demonstration instead.

The fact is that things are moving quickly in the state of affairs here in Wisconsin, and before you know it, our public education system could take a dramatic turn for the worst, affecting not only public employees and teachers (a system of which my husband is a part), but also the children whom are entrusted into their care.    Take a moment to watch this video:

What IS love anyway?   It is having the courage to believe in someone or something, even when things get difficult.    It is the ability to let go of preconceived notions of what is desired...in favor of embracing a more true reality.    It is sharing a vision of the future, and walking together toward that vision.

Six years ago I married my best friend.  Today we celebrate how far we've come, and how much we've grown.    Happy Anniversary Scott honey. I love you. Now onward and upward!

Meet our A-Team

2011-02-10T07:12:00.000-08:00

Our Easter Seals ABA Team: (clockwise) Karen, Nicole, Paul, Amanda, and Caela

Okay...so after our last team meeting I pinned everyone down and forced them to pose for this photo. These folks are such hard workers, and I knew that at some point I'd need to do a post to credit all of their hard work and dedication.

Kai has been showing a lot of non-compliance lately, and several of his therapists have left our house at the end of the day scratching their heads. We think that a few things are happening:

There has been an increase in demands for Kai to use his language skills (this became apparent after Nicole, the lead therapist, paid a visit to Kai's classroom for an observation. She mentioned that he clearly is not showing folks at school what he is capable of.) SO....We've really been encouraging him to use his words more here at home, and he is not at ALL excited about the effort this takes. We're also starting to communicate a lot more with the school staff (eg. teacher and speech therapist), and will begin sending a log back and forth for the ABA team and teachers to see what eachother are working on.
Kai is going through an extinction burst, and his non-compliant behaviors are his way of "digging in his heels," progress-wise. This has taken the form of refusal, sabbotaging of parts of the learning session (throwing toys or markers, coloring on the table, grabbing cards and sitting on them) tantrums, and procrastination.
Kai is just very limited in his physical activity, given the frigid weather conditions here lately. This has led to increased stimming and wiggles.

Next week Monday we have our monthly Lead Therapist visit and team meeting, and we'll be talking about what kinds of strategies to use. Everyone is in agreement that the "cuteness factor" which Kai has embodied is starting to wear off. (Yes, he "gets" that he is cute.....and believe me, has used it to avoid working hard toward making progress.) Any other moms have experience with this??? I know, it sounds bad to say that my kid is manipulating folks, but I've seen it a LOT!

Our A-Team has their work cut out for them, but they're awesome, smart folks who really care about our son. We're lucky to have them working with us!

A Date, A Fundraiser, and lots of Coincidences!

2011-02-07T21:46:00.000-08:00

Whew, what a weekend it was!   I received a phone call a couple of weeks ago from Pam at the Gift of Adoption Fund , asking if we would be open to coming to Chicago to tell our story as part of a GOA fundraiser at  Bon V Nightclub.   Part of this arrangement included their putting us up at the Crowne Plaza Avenue Hotel.    This was an excellent way for Scott and I to get away and pamper ourselves a bit while the grandparents watched the kiddos (it was also a good excuse to buy a new dress!)

Needless to say, I jumped at the opportunity.   GOA is an awesome organization that helps adoptive families like ours by awarding grants to complete their adoption processes.

We started out checking into our hotel at 2:00, and the concierge happened to be a 29 year old adoptee from Canada.   We had a wonderful conversation about our adoption experiences, and she saw to it that we were treated well during our stay.    After relaxing a bit once we had finally checked in, we enjoyed a bit of sushi and a glass of wine at a fine Japanese restaurant.

Upon getting ready for the evening festivities, I was surprised to find that my BRAND NEW (as in just purchased, fresh out of the box) pantyhose had a great big hole in the leg.    Luckily, my dear hubby lovingly agreed to dart out to the nearby Macy's to pick up a new pair for me....ain't that sweet?   On his way back to the hotel, he just so happened to run into the mom of a kid at the school he works at in Hartland, WI.   Amazing hey? You'd better believe that they had a chuckle about Scott's recent purchase.   I wouldn't be surprised if word gets around about Scott's recent pantyhose escapade in Chicago.....LOL! :)

At the fundraising event we met some really neat people, one of whom is a very good college friend of Mark Murphy...president and CEO of the Green Bay Packers (turns out Murphy was able to donate an autographed football of the entire team for one of the GOA raffle events. I'm sure that puppy is worth a ton of money now hey?!)   Folks were so very kind and gracious to us. Conversation just flowed throughout the evening.

Our talk went very well...we did about a 10 minute schpeel about Kai's story after the GOA Video was shown.    Folks were very curious and interested in learning more about Kai's / our adoption journey.    I, on the other hand, kept thinking to myself "Hmmm....I wonder if anyone can tell that I've had two cosmopolitans? What DID I just say anyway?   I hope I'm not too loose in what I'm putting out there cuz boy I'm feelin' pretty good!"   Luckily, it appears that I didn't say anything too off color and that folks appreciated some of my humor (thank you cosmos!).   Best of all is that the event was a success!

We slept in on Sunday morning, and awakened to find our voices hoarse from the previous evening.   I must say that it was a mighty treat to sleep in and not be awakened by prancing little hoodlums or cats chasing eachother up and down the stairs.    We stopped at Ikea on our way home to buy a few items (LOVE that place!) and met my folks at our house to watch the Superbowl with the kidlings.    Jade and Kai were in bed by the end of half-time and fast asleep by 8:00.    Twas quite the whirlwind of a weekend!   But a good one...

Greener pastures, and what I LIKE about Snow

2011-02-01T13:19:00.000-08:00

Today is Random Thoughts Tuesday at The Un-Mom.... feel free to click on the above icon to visit more bloggy random thoughts out there!

Being that we're expecting two feet of snow to be dumped upon us today, I began thinking about what I actually LIKE about snow. Believe me, there ain't much.....so this was a stretch for me!

Everyone looks like hell when there's a snowstorm. Unless you're one of those people who refuses to wear a hat (because it makes your hair look like crap) we can all expect to have hat-head and flyaway hair. SO...forget'cher spray and flat iron cuz we're all lookin' like crap today! And that mascara? Forget it! Snow is the great leveler in this regard!
If dressed appropriately, snow can be a lot of fun. It can certainly bring out the kid in us. (That is, if we're not secretly preoccupied with all the snow-blowing and shoveling that has to get done!)
Snow really requires folks to SLOW the heck down, get off their ideological treadmills, and just BE. That work at the office that begs completion? Mr. Snowstorm doesn't care. Snow also forces folks to be more understanding that we can't always have life as we'd like it.
....and yes, snow can be very pretty to look at.

OKAY....that's all I can think of. Please feel free to comment with more positive aspects of snow if you can think of any, cuz I'd sure like to see them!

....then I started thinking after a conversation with my mother today. A relative of mine (ahem....Katie) is going through a transitional time right now. We all go through them and know what they're like.

For example, I remember trying very hard to get pregnant, and it just wasn't happening. We SO wanted children and a family....and actually became so focused on making that happen that we began to lose sight of the importance of enjoying ourselves in the moment (ahem....by moment, I mean in the general sense!). All I could see was what I didn't have and became consumed with it. We decided to adopt, and began that paper chase.....

We brought Jade home in July of '07 and 6 months later decided she needed a sibling. Kai came home in Feb of '09. Since then there have been countless times that I've longed for the simplicity that I used to know. While the "green grass" of family life seemed greener several years ago, now those old pastures somehow appear more desirable. The rational side of me remembers how much I wanted this, yet the emotional side gets very, very tired with all of the demands.

What I've come to realize is that there ARE no greener pastures. As manure-stinkin', parched, or overgrown as it may be, the pasture that we're in is probably the pasture that we're meant to be in. At least for now.

Who knows, maybe with a little rain and sunshine (and trying to be in the moment) these pastures will yield great fruit.

[forgive the overly effusive symbolism today....this IS a random thoughts post!]

Way to go Jade!

2011-01-30T07:18:00.000-08:00

Yesterday Jade competed in her first climbing competition and did a GREAT job! She even had her own little cheering section :)

Off to Genetics...

2011-01-27T12:16:00.000-08:00

Spent another morning at Children's. This time we saw the ENT (for both hoodlums). Jade's ears look great. Kai's look pretty good too, although we have some other things to consider..... like his ectopic carotid arteries.

Medial Displacement of the Internal Carotid Arteries
(Common finding in patients with Velocardiofacial Syndrome)

We kinda knew the ENT would refer us for a genetic workup (another one....).   Kai has way too many weird anomalies that, in combination with an asymmetrical cleft, raise some clinical red flags.   We've got endocrine issues, asymmetrical ear canals, and oddly-placed carotids.... not to mention all the other stuff (behavioral, speech, cognitive, etc).

SO.....they're thinking Kai may have VCFS  Velocardiofacial Syndrome.   We'll find out more after Genetics gets Kai's labwork and does something called a FISH Test .   Now we're just playing the insurance waiting game.....

Sigh....again, never a dull moment.    I think I'll have a glass of wine now.

Things running through my head...

2011-01-25T13:30:00.000-08:00

I may have mentioned in previous posts that I have a part-time job teaching swimming lessons at the YMCA.    It is fun, gives us a free membership & kid-care, discounted programs and I have a blast meeting good people.   I also have a really good time teaching other people's kids.

One of the things that happens though, is that I constantly have this thought running through my head: "Wow, this is what normal feels like." It is not a conscious thought (usually....although now that I know I am thinking about it it is conscious. :)   Seriously.   I am continually looking at all of these normally developing children and thinking "Man...how did all of these kids turn out to be just so normal???"    For the most part, they look normal, act normal, and come from families that seem pretty darn normal.    Yeah, I know that in reality the word "normal" is a relative one.    But I am finally realizing just how different our family really IS.    Folks DO look at us differently for lots of reasons, and I tend to go around half forgetting/half aware of that reality.

Then there is a different reality....

I sit on an advisory committee at Children's Hospital here in WI.   This morning I attended a focus group with other moms of kids with special needs.   (Even there I am an adoptive mother of a child with special needs, which brings its own unique perspective.)    With that said.....as I sat with other moms who shared their own situations and experiences, I realized that no matter what we've been through or where we've been, there is always another family out there who is experiencing their own version of frustration, isolation, or particular unrecognized uniqueness......

Like the woman with five children who received confirmation of a genetic malformation which has affected all of her kids.   She got this news AFTER the birth of her fifth child.

Like the single mom from Milwaukee who attended the focus group with her caseworker, bringing a perspective which begs further understanding of how harsh economic realities and lack of respite-care services can impact her own personal "breaking point."

Like the mother of three children who has spent the past two months literally living at Children's Hospital, currently awaiting news about a liver transplant for her son.

So as I sit here and ponder what "normal" feels like, I am comforted by the fact that there are others out there who are pondering also.    While there is a great deal of angst and preoccupation in having a kiddo with special needs that ~~most of us would give our right arm to not have to deal with~~, we must navigate through, there is also a ~~horribly cynical attitude~~ certain degree of grit that comes with that.   I think my folks used to call it character.

Coping skills....Pretend ear plugs

2011-01-18T22:00:00.000-08:00

I disovered a new coping technique to teach my daughter to help in managing her reaction to her brother's meltdowns..... Pretend Ear Plugs.

On Saturday, Kai was in one of his meltdown-moods. He had a "make up" session with Karen, one of his ABA therapists, and seemed to struggle with virtually everything...focusing, communicating, mood regulation, etc.. It was a sort of pseudo-regression type of day with a ton of stimmy-behavior.

I told Jade that she and I would make a special treat... ice cream made from snow. Well, unfortunately our little guy had trouble allowing us to enjoy this little interaction, and ventured down misery lane for an hour or so--featuring a combination of his "I am miserable and can't do anything...please give into me" cry and his feet-stomping, protesting, all-out tantrum type of cry.

I was very proud of myself for maintaining my calm despite all of the drama, and used this experience as a learning opportunity for my daughter (who is learning how to ignore some of Kai's inappropriate behaviors, rather than inadvertently feeding into them.) I showed Jade my pretend ear plugs, and shared that I sometimes have to wear them when Kai has his tantrums. Then I asked if she wanted a pair. "Yes please" she said. "Could I have a pretend pink pair?"

Believe it or not, we were successful in continuing to enjoy our little project together, and were able to enjoy tasting it when we finished. By the end of his meltdown, Kai was informed that he would be able to enjoy some snow ice-cream after dinner...given the stipulation that he would be wearing his happy face. He agreed, and promptly settled into a 2 hour nap.

I am always amazed at the miracle of nap time. Following his nap Kai was a completely different little guy, showing his happy face and much more able to interact appropriately. He did receive his snow-ice cream reward :)

And...my daughter and I were able to effectively tune out a meltdown by wearing our pretend ear plugs.

(BTW, my husband has a very effective set of pretend ear plugs that I wish I could borrow. They must be the industrial-grade kind!)

Snow Ice Cream Recipe:

1 gallon of freshly fallen snow

1 cup of regular sugar

2 cups of milk

2 tablespoons of vanilla extract

food coloring (optional)

Gradually mix all of the ingredients together, slowly adding as much milk is needed to achieve desired consistency. Enjoy immediately (or freeze until after dinner :)

An "Event" with Blog Gems....Kai's adoption day

2011-01-16T17:59:00.000-08:00

Today I am posting from my archives from our previous blog, The Adventures of the Fab Four. I haven't kept that one current since starting this blog, but it's worth taking a click-on over for a peek!

I'm sharing the "event" of Kai's Adoption "Gotcha" Day..... Enjoy joining us on this trip down memory lane! :) The videos are a hoot. Kai was 28 months and Jade was 3.

Click over to: Adventures of the Fab Four.....Kai's Adoption Day!

Kai on "gotcha day." We jokingly refered to him as our little Buddha-belly.

Thanks again to Jen over at The King and Eye for hosting Blog Gems!

Straight talk: Adoptive mommyhood and Mental Gymnastics

2011-01-15T10:28:00.000-08:00

Life in the world of mommyhood can be brutal at times.   Let's face it, we women can be judgemental and critical of one another and our parenting.    We are social creatures who really get into the inticracies of relationships and relationship heirarchies...we discuss them, analyze them, and disect them.

We also can tend to make a lot of assumptions.   The trouble is, most of the time we have no idea about what is going on in the lives of other people.   What their private worlds are like.

There are many folks who make assumptions about adoptive parenting.   Heck, I had my OWN assumptions about parenting which have been obliterated by adopting two children at the age of two....kiddos with little histories of their own which we may never fully grasp the full implications of.    It is simply impossible to NOT ponder this kind of stuff, despite how we try to "just love our kids".

Love, to an adoptive parent, often means parenting in a way which is not second-nature.    It means teaching your child how to trust having you care for them, even though their instinct tells them they need to organize their lives predictable, often self-defeating ways.   Ways which often serve to push you away.

Adoptive parenting goes hand-in-hand with attachment parenting and therapeutic parenting.    It involves engaging our brain AND our heart to try understanding why your kid is doing what they are doing, as this kind of care-giving is often very counter-intuitive to how we were parented (assuming that we were given comfort and nurture from the day we were born.).    Yes, it often forces us to inflict our love onto our kids, even though they feel deep down that they don't deserve it.   Believe it or not, it feels uncomfortable to them.

Our daughter was challenging for the first six months after bringing her home. Each six months thereafter became easier and less challenging.   She is now just a typical, well-attached kiddo with occasional setbacks from time to time.    Kai is a different story.   He is such a mixed bag of emotional push and pull.   Some days I can't wrap my head around it all.

Kai's developmental issues are one thing, volitional setbacks are yet another.   There is a control dimension to this stuff which is not something most folks understand (even our ABA team is working to try getting a handle on it.)  Kai is showing some behavioral sophistication which feels like manipulation, and many of Kai's therapists are voicing this observation recently.    It is concerning.   The idea that my kid is "holding out" comes to mind...as I believe he has capabilities he is not showing us.....that is, unless he is of a mind to.   Sigh...

Ah yes, welcome to my world of mental gymnastics.

Hoppin' today

2011-01-12T11:44:00.000-08:00

This Wednesday I'm joining in on a new Blog Hop..... Tara at Sticky Fingers has hosted a blog hop theme entitled The Gallery, displaying photographs of various themed entries.

This week's theme is on the topic of Body Parts. Oooo there are a lot of really interesting entries! Because I've already done a post about my daughter's uvula, I thought I'd post that link below.....

Interesting stuff, for those of you who don't know about the little appendage hanging from the back of your throat, or what it's use is.

Click and READ ON!

A CRAZY Kind of Faith....Perfectly Useless information: The UVULA

Want to join in? Click here: Sticky Fingers, Body Parts Blog Hop

Technological crossroads

2011-01-09T16:50:00.000-08:00

Okay. I'll admit it. I am one of those people who still does not have an I-Pod. I do not have an I-phone or a Blackberry or any other of those cool new fandangled-phones that are all the rage. Heck, I don't even get the whole twitter thing yet (although I do have facebook account and a cell phone). We do not have texting as an option in our cell phone package, and we do not have a Wii. Yes, in short, I'm a technological loser.

But here's the thing. Everyone I talk to says they're addicted to their cell phones. I know that I would not be an exception. My husband already thinks that I have an addiction to the internet. He razzes me all the time by breaking into his theatrical: "Hi, my name is Chris....'hi Chris'.... and I have an internet addiction." skit. Of course, this makes me laugh and brings into reality the fact that I want to be with him and the kids, even though the computer beckons me. I KNOW I'd love having an Android or a Synthroid or whatever the heck the phone name is. I'd be checking in all the time.

And then there's the guilt. (Like now when I'm writing this post and dear hubby would enjoy watching the Packer game with me. There's a warm fire going and it is very inviting...) But I feel this pull to come and write this post. (I know....you're all thinking: yes, you are addicted. SEE???)

We had friends over last night who are in their 50's (empty nesters...) who were showing us all the cool things they could do with their phones. Heck yeah, those phones ARE really cool. I would LOVE one! Kinda like how an alcoholic would love a drink....

Here's another thing. My kindergarten daughter is learning computers at school. She's already loving the technological revolution. I, on the other hand, feel like I am turning into my mother: "Ya know, before you know it, people will not even be talking to each other anymore." Yes, it seems I could swiftly become an old fuddy-duddy (no reference to you mom.) if I did not at least entertain going with the technological-flow. Technology IS a generational reality....kinda like Elvis and the Beatles. And....I do not want to be left behind.

Okay, one more thing. I am one of those people who really get into nuances....take facial expression and body language for example. I also can easily misread (or read into) something because of not fully getting the entire meaning / context in print without those subtle nuances. Yeah, I'm kind of a relational junkie who is pining for the old days before FB, and texting.

The solution? Remain pining for the old days? Go to Sprint or Verizon and tempt myself to just go for it? Get on board, start slow and have a behavior management program in place? (Like, honey...please lock up the phone for me.) Wait until I'm forced by my now-5 year old to finally succumb?

A lot can happen in two days...

2011-01-08T08:38:00.000-08:00

Thursday Kai and I spent the morning at the Surgicenter at Children's for ear tubes. Yesterday we spent the day at Children's for an MRI. Two seemingly routine procedures turned out to be very UN-routine.

We've done ear tubes before. It has always been kind of a minor procedure. Turns out this time that Kai's left ear canal was sort of curved and his previous ear tube was on it's way outta that ear. Well, while on its way that tube apparently left some kind of scarring which the surgeon did not want to disrupt for fear of puncturing Kai's ear-drum in the process.

Luckily there was no fluid in that ear, and unless Kai shows problems with fluid accumulation we may not need a tube in the left ear this time around. The surgeon did mention that the left ear canal is shaped a little flatter and oblong, and we know that the left side is smaller than the right side (The ENT that did Kai's tubes the first time mentioned this...along with the "heads up" that we may want to keep genetic testing in the back of our heads, as this kind of assymetry with unilateral clefting can sometimes indicate a "syndrome" of some type. HOLD that thought...)

In recovery, Kai was a raging mess. When I entered the recovery area I immediately heard my son's familiar wailing. Two nurses beconed me into his room and suggested that perhaps he would calm down with my presence. He did. For about two minutes. Until he wanted to bolt down apple juice and I would only let him take small sips (he was still pretty urpy....didn't want him to up-chuck.). After getting the "vitals okay" signal, the nurses suggested that I may want to just take him home (eg. "get this raging kid outta here!") After about 20 minutes more of wailing in the car (my meditation music did not work to soothe him) he finally peaced-out. The rest of the night was uneventful, and Kai was happy as a lark. He slept from 8:00 last night until 8:45 this morning....awakened to mommy feeding him jello, in time to get ready for sedation, round 2.

Kai's MRI was at 11:00 yesterday morning. He did surprisingly well this time. No gas or versed this round...just good old fashioned IV drugs (the legal sedation kind). He emerged from recovery a peaceful smiling kiddo. Completely the reverse of yesterday. The MRI tech said that his carotid arteries were "notably very squiggly," but that was all she could tell us, not being an MD.

[See post: visit-with-craniofacial-team for details of the need for the MRI.]

About 2 hours after the MRI I received a call directly from Kai's plastic surgeon (I've never spoken with him on the phone!). He said "Kai's MRI results are really something to look at. Next time you're in I'll have to show them to you. His carotid arteries basically loop around from the base of the neck to the back of his throat where they come together in a very odd fashion. Basically he'll never be a candidate for any kind of throat surgery...tonsil or adenoidectomy, or pharyngeal flap [as we were hoping for :( ]. You'll need to be sure he doesn't walk around with popsicles or suckers either....one fall could be it for him." Ugh. Kai IS a clutz, and contrary to popular belief, I do NOT have eyes in the back of my head to keep a constant eye on him.

Looks like this odd carotid situation was created in the first few weeks of Kai's gestation. With this in mind, I inquired about re-visiting genetic testing to determine if all of these oddities (assymetrical eustacian tubes, endocrine issues, now this carotid thing) are part of some kind of syndrome. Doc said this is "absolutely possible." I mentioned that we had a genetic workup about a year ago for a chromosome analysis and testing for Fragile X, but it did not include a specific analysis for micro-deletion syndromes which would include those such as velocardiofacial syndrome or others common in kids who are cleft-affected. He is suggesting that we continue to pursue more genetic testing, acknowledging that these oddities DO raise a red flag. Ugh....again.

Sorry this post seems pretty clinical. It is a lot to absorb. Writing helps me absorb it.

Wordless Wednesday...Climb on, Kai!

2011-01-05T09:15:00.000-08:00

A little about meeee

2011-01-03T12:55:00.000-08:00

Jen at The King and Eye is hosting a blog gems blog hop. This week we are asked to share a little bit about ourselves. The intent of the hop is to air our blog archives, but after perusing my old stuff, I find that most of it is about my kiddos! SO..... I decided to do this post, and thought it would be fun.

I worked at a toilet seat factory when I was in college. Third shift even! To this day I may occasionally lift a seat or two just to see if it has a Bemis factory logo underneath.
I have a birth mark on my back in the shape of New Jersey.
I went through a "save the world" phase in '95, when I traveled to Guatemala, Honduras and El Salvador for a summer (sans medical insurance, like a bonehead. This was during a time where there was still a lot of political upheaval in those countries.) I did pilgrimages to the places where missionaries and the Archbishop of El Salvador were murdered. I actually thought of doing some kind of missionary work (without the proselytizing). Luckily, I changed my plan and worked with substance abusers in Pennsylvania instead.
I have very talented feet. I can actually pick things up with them. My family used to tell me that I'd be "all set" if I'd ever lost my arms. (Oh yeah, and I can get my foot behind my head too. Can't touch my toes to save my life though!)
I absolutely abhor onions. Hate em.
I dated a guy for two years who turned out to be gay. Yes, I've had to answer a lot of questions about THAT one.
I was 3rd runner-up and Miss Leadership in a teen pageant in my home town when I was a junior in high school. All my friends did it, and I thought it would be fun. Funny thing is, I HATE pageants. If my daughter ever asks to be in one I think I'll have a coronary!

Happy New Year...OUCH!

2011-01-02T09:54:00.000-08:00

I always thought that old people were the ones that fell. Images of feeble elderly folk come to mind, having trouble with balance, coordination and navigating their way in cumbersome conditions. Of course, not an agile-bodied 40-something year old like myself, having always been the active type and naturally mind-body aware (insert guffaw here...)

Yesterday the fam and I celebrated in New Year's day running errands... yeah, great fun. I was jonesing for a Starbucks big time....you know, that little cup of soul caressing in the middle of a chaotic afternoon. Scott pulled up into a parking space next to a tree, and I graciously agreed to brave the cold to make my way into Starbucks to retrieve a Gingerbread Latte for the both of us.

The last thing I remember is trying to avoid walking my head into a branch....and finding myself hurling over the concrete tire bumper headlong into the side of a stone-covered planter in the front of our minivan. I had one of those very disorienting experiences, along with the "oh shit...I hope I didn't hurt myself beyond repair because I know I'm in shock and don't feel anything right now" realizations.

My hubby, [donning his invisible superman cape] came bolting out of the van....."OMG Chris, are you okay? man, you look terrible. Can you move? Let's get you home." And another woman came inquiring as to my welfare, carrying a steaming frothy cup of something that at this point, I could've cared less about. I guess the fall must've looked pretty bad. Hubby says he swears he thought I'd be unconscious by the way head banged into the side of the planter. Yup, the side of my cheek looks like I took a cheese grater to it (ew, gross!). I have a nice bruise on my collar bone and two bloody-knuckles. (No, I am not trying to cover for a bar-fight that I was in!). I can also honestly say that I have not had my knees skinned since I was a kid....until yesterday!

So, why am I sharing this...and what does it have to do with New Year's, other than the fact that it happened on New Year's Day?

Well...I consider myself a pretty tough-skinned woman. A "pull up your bootstraps" and "let's tackle this problem head-on" kind of person. When I got back into the van and sat in my seat....using kleenex and wipes to stop the bleeding from my face and knuckles.... I simply could NOT hold back crying. I was not crying because of the pain....I still was not feeling any. I was not crying because of knowing I appear like a beaten housewife and my face would look horrible. I was crying because it just hit me.....I was SO, SO tired. Tired of all the stuff that comes from parenting very challenging children. Somehow, taking this really bad fall gave me permission to just let it all go, because now I had a reason.

The new year brings with it realistically, more of the same. Everyone has joys, everyone has struggles. The trouble is, those of us stuck in the "struggling" camp constantly feel the pull to appear that everything is just peachy-keen, while we have the internal experience that we're about to fall apart. This New Year's, I want to climb up and shout from the rooftops: "Hey struggling people....Come out, come out, wherever you are! It's okay...I'm here too!"

A friend we met in China when we adopted our daughter posted this video on Facebook, and I think it sums things up nicely. Simple truths delivered very eloquently.

Living Wholeheartedly

BTW, am still in my jammies (it's noon), leisurely enjoying my cup-o-joe guilt-free today.

Different but not Less...

2010-12-31T09:45:00.000-08:00

Today, Sunday from Adventures in Extreme Parenthood is hosting a blog hop. The subject is "Different but not Less," sharing tips on managing holiday stress while parenting a child with special needs.

This year, Scott and I discussed ahead of time how we would like to try keeping holiday gatherings / expectations to a minimum. With that said, I do realize that it is easier said than done.

Both of our children were adopted as toddlers and spent their first two years in orphanages. Holidays, changes in routine, and time spent with lots of people have always been known to trigger emotional lability in both of our kiddos. There's something about these situations which sets off the kids' "unsafe" button (as in feeling unsafe), and we usually end up dealing with a great deal of fallout after the event(s). Hence, it was not too difficult to say....Hey, this year let's try to minimize the holiday expectations!

It is still hard to walk the fine line of making the holiday special for my 5 year old daughter, who sorta deserves those experiences that kids talk about when they return to school (it was bad enough that we blew through St. Nick's Day without gifts, and Jade's school friends all bounded back to school sharing their St. Nick treats! Yeah...I was totally oblivious to the St. Nick thing.) Telling her "You see, mommy and daddy are overwhelmed with all of your brother's issues" doesn't always fly! Jade IS her brother's biggest fan, and has been awesome with understanding and accommodating his needs....such as playing quietly when the ABA therapists are here, and trying to ignore him when he constantly mimics (echos) her. We do try to provide her with experiences that venture out of the "different kind of family" category from time to time, while helping her to understand that we still DO have to do some things differently.

And so...we ventured out on Christmas Eve day with some wonderfully accepting friends from our adoption group to have a superb Thai lunch and spend the afternoon at an indoor botanical garden. Jade enjoyed playing with the girls and Kai did his best to hang in there.....until about mid afternoon when he hit his "stuck point." (eg. he became a stimmy mess).

We had plans to go to church, but those quickly became derailed by the more pressing need to decrease Kai's over-stimulation. I did not care to inflict Kai's overly stimmy behaviors on unsuspecting prayerful folk on Christmas eve....even though it would be nice if people understood such things. Luckily my catholic guilt did not get the best of me, and we made the decision to just return home early.

The following couple of days went well. We DID explain to folks what things might look like (re. Kai's behaviors), and were relieved that things did not get out of hand. Luckily, we have subscribed to the attitude with family where, if something bothers you, either DEAL with it, or ASK about it. This is working out well...[most] folks are dealing and asking.

In sum, what has worked this year is FLEXIBILITY.....the ability to detach from expectations and re-envision them without judgement. Not a bad perspective to have the whole year through!

Ghosts of Christmas' Past...

2010-12-28T07:40:00.000-08:00

Big trendy items this year: The Pillow Pet, and the Sing-a-Majig

Ten years from now, the kids will be saying "remember when we got those pillow pets for Christmas?"

For me it was the Inchworm....

This is the "newer" and safer version....complete with braking system.
The "retro" style was much cooler!

Oh, and who could forget....getting a Styx Cornerstone Album!

OMG, I listened to this one over and over.... in my black-light poster adorned room :)

Do you have any ghosts of Christmases past?

Appreciating...

2010-12-25T10:27:00.000-08:00

....peace and quiet on Christmas Morning.

Kai relaxes on Christmas morning, focusing on a puzzle.

Yesterday we started out meeting friends at the Mitchell Park Domes (indoor botanical gardens) in Milwaukee. Notice the angst-ridden expression on Kai's face.....it explains a lot about how the rest of the day went.

Kai, Jade, Isabelle and Emma at Mitchell Park Domes

It is hard when you want your other child to have an enjoyable time while you're walking the meltdown tightrope. My hubby made the comment that Kai seems like he is "uncomfortable in his skin." Kai was a stimmy, anxious mess for the majority of the day. Luckily, we have friends that "get" Kai's issues, and Jade and the girls were able to have fun! Whee.....

And I was able to snap this cute shot (below) of Jade amongst the pointsettias. :)

....We had intentions to make it to church last night, but that would've been a mistake. (Mea culpa, mea culpa) We came home early evening to open gifts, because Santa came EARLY this year!!! The tired little bumpkins were in bed by 9:00. A Norman Rockwell Christmas it was not.

Any hopes for a romantic evening kissing Santa Claus were replaced by two very stiff cosmopolitans by the fireplace and passing out on the couch.

Christmas Tidbits...

2010-12-23T15:06:00.000-08:00

.....Glasses anyone? Yikes, can't wait to get em!

Kai's class at Willow Springs....chowing down peppermint stick pudding. Kai: "You so much as breathe on my pudding and I'll rip your arm off!!!"

...more sugar before sending the kids home to drive their parents nuts ;)

Jade's kindergarten class making gingerbread house cards....just the kind of sticky project that drives fastidious parents crazy.

....can't wait to eat this sweet little Rudolph. Mmmm tastes like venison....

May You and your loved ones have a wonderful holiday season!

Wordless Wednesday...Walkin' Man

2010-12-22T06:32:00.000-08:00

A quick walk down memory lane....

This is Kai at 30 months. Unlike most kids, he had absolutely no interest in walking...that is, until we offered him a fruit snack to walk to. Here he is walkin' for his fruit snack! :)

Eye Appointment and Stuff

2010-12-21T12:50:00.000-08:00

Over the weekend Kai had an eye doctor appointment at Children's (yes, we were at Children's Hospital again! It is becoming our second home.)   Turns out that he has strabismus http://en.wikipedia.org/wiki/Strabismus and amblyopia ( http://en.wikipedia.org/wiki/Amblyopia).   He also is far-seighted (can't see near), although the opthamologist believes that Kai probably has difficulty seeing things clearly at all levels. All of these disorders together can cause problems in both vision and depth perception, and are treated in a variety of ways.

First, yes....Kai will be getting glasses.   He hardly has a bridge to his little nose, but he will need to wear glasses every day.   Geez, I hope he doesn't need to wear one of those silly looking straps!    We shall see.... one thing at a time.   Eye-patching and vision therapy are other options that will be determined in a couple of months, once we see how things go with his glasses.   The last option, of course, would be surgery (ugh...can't even think about that right now!)

The depth perception issue is of particular concern, as we already have a sensorily-challenged kiddo who is as clumsy as they come.   Wouldn't it be great to find out that many of Kai's balance / proprioceptive issues may be alleviated simply by correcting his eyes?

I'm feeling a mixture of guilt (why hadn't we thought of this earlier?), hope (Wow, with his eyes functioning properly we should see great improvements in lots of areas!), and dread (ugh...more medical appointments, possible eye-patching and / or eye surgery. This is in addition to all the other medical stuff going on.)

On a slightly different note, we are still hoping that Kai will be able to have his pharyngeal flap surgery in March, but first he will need to have an MRI study to determine if the surgery is a safe alternative, given the extreme anterior location of his carotid arteries.    If it looks like the surgery is not possible, he will have a prosthetic appliance (a retainer-type dealy) made to assist his soft palate in making certain speech sounds.

All of these decisions should come together in March sometime.

We joked here that, come March Kai may be our little pirate..... patch over his eye, elbow immobilizers on after p-flap surgery, silver soldered to his teeth....all he would need is a peg-leg to complete the full picture!  :)

Thank God for humor.....We gotta have it!

Aaarghh.....they call me Kai-man the pirate!

Shhhh....

2010-12-20T14:14:00.000-08:00

Kai was a little under the weather today (rattly cough and runny nose). This afternoon we took a little nap together.....all four of us: Kai, I, Stella and Oscar (the two cats). Kai was snoring like a banshee! I was able to maneuver myself out of bed without disturbing these two....shhhh!

Ah yes....today we all settled down for a long winter's nap!

Small Things Saturday....A "Diagnosis"

2010-12-18T07:40:00.000-08:00

Lots of folks have asked me if it has been helpful to have an "official" diagnosis for our son.   My hubby is a school psychologist and has had lots of families mention that they want to avoid having a diagnosis for their child for fear of labeling them.   Very often these fears are followed by an increasing desperation to receive help for their child regardless of the cost (ie. "getting" the "label." Sorry for my overuse of quotation marks...I love those little things ;-)

Anyhow in our case it WAS helpful to receive diagnoses....overall.    While we had heard how professional opinions can vary greatly, we have learned the value of "picking and choosing" what diagnoses seem to fit.   I have also subscribed to the idea that WE as our children's parents know them better than anyone else, and are the best sources of information for the professionals that see our children.    Therefore, I even try to think of the diagnoses we have gotten as part of a working hypotheses of what kinds of treatments will work.    Make sense?

For example, here are some of the diagnoses given to our son:

Dementia due to multiple medical conditions (high risk pre-and post-natal factors ranging from malnutrition, deprivation, poor prenatal care, neurotoxicity, heavy metals, neurogenetics, intrauterine trauma and probable neurological deficits)
Pervasive Developmental Disorder (PDD-NOS)
Severe Mixed Receptive-Expressive Language Disorder
Phonological Disorder
Multiple Motor and Sensory Dyspraxias
Cognitive Disorder NOS
Post-Traumatic Stress Disorder
Psychosocial Growth Retardation
Static Encephalopathy / Traumatic Brain Injury / Minimal Brain Dysfunction
Probable Mild Cerebral Palsy / Supra-nuclear Palsy

Now, HOLD THE PHONE!   Does all of that sound gloom-doom?   Absolutely!    Believe me, upon seeing/hearing all of these things I became horribly depressed....until I realized that they were only TOOLS for getting specific help / therapies in the areas needed.   Yes...I bawled in the neuropsych office as I pondered the woes of raising a child with multiple special needs--A child who I was told may never be verbal.   A child I was told may need institutional care someday.

We have since shed a lot of those diagnoses (such as the dementia, mild cerebral palsy, and traumatic brain injury ones), but held on to the ones which seem to "fit" and are actually something we can work with....such as PDD-NOS, Post-Traumatic Stress Disorder, and the speech/language diagnoses.   Heck, we even added the diagnosis of sensory integration disorder for purposes of working with specific symptoms, such as balance, coordination, and tactile stimulation.

Putting our energy into these areas has been the best choice for seeing amazing and remarkable improvement in our little guy!   Our kiddo is starting to put 4-6 words together and is on the verge of speaking in small sentences.   Fortunately, we do not foresee him ever needing institutional care.

Did getting diagnoses almost throw me into a nervous breakdown? Probably.   But they also empowered me to get my ~~shit~~ act together and do what needed to be done for my son.    I'm so glad we did!

Blog Hop...What I Want for Christmas

2010-12-16T19:08:00.000-08:00

The Special Needs Blog Hop prompt for this week is: "What I want for Christmas." Hmmmmm......so much to consider!

I think that this year what I'm wanting most is SIMPLICITY. Oscar, our one year old cat has found it.... I think I'll take lessons from him.

If I can't have that, then a vacation to Mexico will do!

Hi-Ho, Hi-Ho, it's off to Children's we go...

2010-12-15T06:53:00.000-08:00

Kai did very well at his LONG appointment at Children's yesterday to see the Cleft Palate team.   Thanks to a ready supply of fruit snacks and animal crackers, he was surprisingly awesome for the video-study and the nasal endoscopy, whereby the speech and language pathologist was able to see the inner-workings of Kai's pharynx when articulating specific speech sounds.    I included a video below to see what the nasal endoscopy procedure looks like (the ENT basically takes a spaghetti-noodle type scope and inserts it into the nose, down into the pharynx) . Pardon the annoying music!  The video at least gives you a good idea of what is involved.   (yes....I'm very pleasantly surprised Kai cooperated through the whole thing! :) Way to go little dude!!!

The results showed that Kai does a medium-large gap between the soft palate and his pharynx (no surprise there...he is very hyper-nasal). The cleft-palate team will be discussing their recommendations, but it looks like he will likely have to have a pharyngeal flap surgery sometime after March. In the mean time, we also met with a prosthodontist to see if Kai would be a good candidate for a palatal prosthesis (with a speech bulb) to help with production of speech sounds using his soft palate in the mean time...before the p-flap surgery.

What is Pharyngeal Flap surgery?  See this link: Pharyngeal Flap Surgery Facts: PDF.    Yup...not much fun.   Not looking forward to this one :(.

Interestingly...another little wrinkle that we learned as a result of the endoscopy is that Kai's carotid arteries are located very anteriorly....close to his pharynx (in most of us they're further "out" in the neck.) This means that he'll need an MRI and some kind of catheterization in order to be sure he is "safe" for the p-flap surgery.   In addition, this info is important to know because we now need to monitor him very closely to be sure that he does not walk around with sharp objects (such as a pencil) in his mouth....as falling in this situation would be bad news!

Kai will also need to have tubes inserted again, as the ones currently in his ears are on their way out.   Sigh...never a dull moment.   These are more reasons as to why I am not out working, and will not be for the foreseeable future.

On a slightly different note, Kai will be seeing an opthamologist on Saturday at Children's.....we've noticed that his eyes have been crossing quite a bit lately. We just might have two in glasses very soon.

Sparkly Peppermint Playdough

2010-12-13T13:17:00.000-08:00

I made this for Kai's class at school...it was amazingly easy to make, and the kids LOVE it! The only drawbacks are: 1) It smells like it should be edible but it isn't, and 2) It calls for 4 tablespoons of peppermint extract....which can be expensive. I only put in 2 tablespoons.....

It's a quick and easy holiday craft :)

2 cups water
2 cups flour
1 cup salt
4 teaspoons cream of tartar
4 tablespoons oil
4 tablespoons peppermint extract
red or green glitter

Mix all ingredients in a heavy saucepan. Cook over medium heat, stirring constantly with a wooden spoon, until mixture thickens and pulls away from the sides of the pan. Form dough into a ball, sprinkle with glitter, place on waxed paper, and cool completely. Store in Ziplock bags.

Enjoy!

Small Things....Teamwork!

2010-12-11T07:54:00.000-08:00

On Thursday we had an appointment with Kai's counselor/therapist (specializing in international adoption) which was also attended by Kai's lead ABA therapist.    This was extremely helpful from the perspective of teasing out which issues are trauma/post-institutional history stuff, and which issues are part of Kai's bonafide PDD-NOS.   (For example, the issue of non-compliance is more of an issue of control, which is really more reinforcing to Kai...as he is able to feel powerful for having an adult wait for him to "come around" so-to-speak.).

Kai's situation is a complex one...and one that merits a creative and collaborative approach.   During this meeting it was decided upon that we will make another appointment, during which the Director of the ABA services will also attend for purposes of becoming educated on Kai's unique needs.    What an awesome example of how things can work when people work together!

In the words of the Wonderpets....What's Gonna work?   TEAM WORK!

Mommyhood reality

2010-12-10T13:51:00.000-08:00

Last week we received news that the woman down the block, who happened to be a mother of three boys (including twins) had died.    She was well known in our neighborhood because of having had several episodes of overdosing on pain medication (police vehicles had been circling the area and keeping an extra eye on the house for a while).    I knew this woman from seeing her at the YMCA, and was aware that she had undergone some pretty painful back surgery and had recently been diagnosed with Multiple Sclerosis.     Within the past year she could be seen walking down the block with a walker...yes, trying to keep up with her 6 year old twins and 13 year old son.   The husband has a job working for Fed Ex and is on the road most of the working days of the week.

This family is originally from California but moved to Wisconsin for a job transfer three years ago.     Wisconsin winters are hard, to say the least.   For someone used to California weather they must be intolerable.    For someone with significant health problems, an absentee spouse, and challenging children....Wisconsin winters could seem like torture.   She couldn't have been much older than her mid 40's....tops.

Today there was a private service and wake.   The community was not invited to the showing.   I do know that this woman's death has a "hushed" tone to it..... another sign of the sheer and utter sadness of this family's circumstances.

I keep thinking about this woman.  The situation is a horribly tragic one.   I wonder if there is anything I could have done....maybe an informal dropping by or an inquiring if there was anything she needed?    Then my mind went to the reality of our own family.     Most folks really don't KNOW the realities that we face on a daily basis with Kai's issues and how draining it really can be.    I could probably be faulted for seeming myopic or preoccupied at times.   There have even been instances where I have felt selfish because I just was unable to BE there emotionally for someone else when I had felt like I was at my own limit of what I could handle.

The holidays are times when we send cards wishing people the "joyfulness of the season."   Sometimes we forget that for many, these are hard times. I am lucky to have a husband who is home evenings and weekends and who "gets it".    I am lucky to have a family who is supportive, understanding, and lives nearby.    Even with these blessings, is still hard on most days....the parenthood thing.

I guess my rambling during this post is just a reflection on the private pain that so many moms experience, and the desperate loneliness that is often a part of our unique experiences.

The mom down the block is an extreme example of this.....but for some, it may be not too extreme.   How many single moms are out there, making it on their own?   How many women struggle with health issues or depression...that they simply feel the need to shove to the wayside just to "deal" with the daily reality of raising children?

These are things I am pondering today....

Wordless Wednesday

2010-12-08T11:55:00.000-08:00

....snapped this photo the other day when the kids were playing in the tub together. It's great when they can spend an hour in the tub entertaining themselves and come out squeaky clean!

Hark...The Herald Angles sing (no, that's not a typo!)

2010-12-07T13:06:00.000-08:00

Kai's very favorite activity....lining up cars. (this photo was taken in September after palate surgery, hence the elbow immobilizers.)

Whoa has it been a stimmy few days at our house!  ("stimmy" refers to self-stimulating behaviors for sensory input).  I don't know if it is because the weather has been cold and the kids have not been playing outside to get their wiggles out, or if Kai is going through another phase.

Lately he has been spinning.   Yes, spinning in circles...as in round and round looking up at the ceiling.   Yesterday at the pharmacy he found it fascinating to spin until he fell to the ground (until I asked him to sit in a chair.).   Kai's still toe-walking occasionally (over the tops of his toes...yes, ouch!).   He has also taken to scratching things.....paper, puzzle pieces, fabric, etc.    Initially we thought this may be an orphange-learned behavior, but he continues to do it.    It does help if I keep his nails clipped. (Note to self....do that later!)

Kai has always been very into angles and lines, but as of recent it has been like Kai's stimming is on steroids.    He likes to walk along the edge of the kitchen table or a door and skim his hand along the edges (or should I say stim his hand along the edges?), back and forth. It's very ADHD-like.

There's something about angles and lines that Kai-man really finds fascinating.    He will even attempt to line up the cards he uses during therapy or place them at right angles, until the therapist redirects him.    This "angle thing" includes opening and closing doors....over and over again, while figuring out the varying line patterns / intersections involved in partially closing a door.

Books....does he read them?   He will if we sit down and read with him.    Otherwise he will use books to construct all sorts of intersting angles by opening the pages and gazing at them....on their side, hanging down, etc.

If I could just get into that head of his..... what IS it with angles?     Maybe he'll be an engineer someday!

Let it snow...

2010-12-06T06:47:00.000-08:00

Over the weekend the kids had a blast playing in the snow with daddy (mommy was working). Look what they made!

Our little Eskimos!

Tis the Season...

2010-12-03T11:26:00.000-08:00

Over the weekend we took the kids to A Country Christmas....to see the lights and participate in the holiday festivities. Of course, Kai loved the train..... and both kids enjoyed the cookies and hot chocolate :)

Oh yes, while we were looking at the Creche.....(a replica of Fontanini) there was a fly that landed on the nose of baby Jesus. Of course, silly Jade noticed this and asked us to take a picture.....

....this led to an explanation of how if Jesus was born in a stable, this really could have happened! I also gave the kids a little geography lesson and explained that Jesus and the rest of the people living where he lived probably did NOT have blue eyes or blond hair (leave it to those Europeans to steal the story, hey?)

Something to think about...

2010-12-02T09:19:00.000-08:00

When we had our son Kai evaluated in May of this past year by a neuropsychologist specializing in international adoption, we were informed that it is possible our son had been exposed to some kind of neurotoxin(s) while in China.    This may have happened in-utero or afterward.   We will never know for sure, but it is always in the back of my mind.

I do understand that China has a horrible record of environmental pollution and that there is little or no regulatory system there.     I also know that China is where developing countries ship our discarded electronic devices, batteries, and other corrosive materials that we do not want in our landfills.

SO....we have our little Kai.   We know that it is possible that his delays are the result of something neurotoxic (such as manganese, cadmium, or another metal), but have come to the realization that finding out and treating something of the sort would be very invasive, if not potentially fatal (I'm talking about Chelation therapy:   http://en.wikipedia.org/wiki/Chelation_therapy).

So....What do we do with this partial information?   Take it for what it is..... a theory.   AND we help Kai by getting him the best treatment for his multifaceted needs.   (Endocrine problems are another issue....again, potentially the result of environmental neurotoxins) I am again thankful that we have medical insurance and medicaid for our little guy.

Knowing this ~~really shitty~~ very interesting information definitely sheds a different light on the decisions we make, and how each global decision that is made affects other people.....even if we do not see the immediate effects.     There is no easy solution, but it is worth the effort to think about these things.    Believe me, I never wanted to think about them.....now I have to.

Regression

2010-12-01T10:51:00.000-08:00

I guess this is common for kiddos on the spectrum..... to regress somewhat after making measurable gains.     Today Kai has forgotten how to answer the question "What is your name?"   Rather than thinking giving an appropriate answer, he will throw out any 'ol answer that seems to fit.    Here's an example:

Mom:   Kai, what is your first name?

Kai:  Four

Mom:   Your name Kai....what is your name?

Kai:   Four!

Mom:   Kai, not how old you are....your name....what is your name?

Kai: Five.... (followed by starting to cry)

He also has been reverting back to a reflexive crying response when experiencing the least bit of frustration (say, when asked to hang his jacket up or take his boots off.)    He is back to having very little frustration tolerance...and I have had to do a lot of gentle encouraging.    If he gets into a crying cycle....which has been his pattern, I will count to five.    Usually he stops by the time I count to 3 (that little trick works amazingly well!).   If not, I will begin removing stickers from his happy-face chart.....meaning that he'll need to earn them back in order to get a doughnut.

It has been a difficult couple of days...just as we had begun to bask in the progress that Kai has made, he seems to have come to a roadblock.

I wonder if some of this is just normal.   I mean, he has been using his brain so much more often than he has in his entire lifetime.    It seems that he just wants to switch it to the "off" position because that is much more comfortable.    Sigh.....

We just keep pluggin' along!

A Victory "High Five"

2010-11-30T11:44:00.000-08:00

Okay....today is the LAST DAY of National Blog Posting Month. Why not have a post JUST to celebrate that I DID it?! Yes....30 posts in 30 days.

It was a good experience....I had to be disciplined (there's something to be said for that!). Now I look forward to posting mostly when the spirit moves me to, not because I have to. :-)

a dilemma

2010-11-29T13:32:00.000-08:00

Okay....here's the situation.    I have been a "stay at home mom" from July of '07, since bringing our daughter Jade home from China.   In January of '08 we decided to expand our family and started the process of adopting Kai in March.    We received our approval to bring Kai home in May and received our official LOA (letter of approval) from China in October and were ready to travel in early '09.    Then the arrival of Kai and the reality of his needs impressed upon us the even greater need to have me remain home for the foreseeable future.

We were a two-income family when Scott and I got married.   I enjoyed my social work career, but we really wanted to have a family.    Yes, my "professional self" has had to take a back seat to my "mommy self," and we have definitely needed to simplify our lifestyle.   It has definitely been doable, but it has not been without sacrifice.   Don't get me wrong....I have LOVED being home with my little hoodlums, and would not have traded this experience for anything in the world.    But.....

A couple of career opportunities have presented themselves as of recent, and I'm starting to get the "itch" to return to work.   Both of those careers involve advocating for folks who are indigent through the legal system, which I LOVE doing!   This is the kind of work that feeds my soul.........but I love. my. kids.     I want to do what is best for them, and I don't want to have a life that is full of stress and confusion.

Returning to work would require having Kai in day care in the afternoons (his ABA therapists would be able to do therapy with him there), and this would be an additional expense.    I would miss getting my daughter off the bus at 3:30, and eating lunch with Kai after getting him off the bus.    I would also have to battle rush-hour traffic....and that would be a major drag.

Yikes.....this is NOT an easy decision!    Any feedback from other BTDT moms out there????

Progress!

2010-11-28T10:09:00.000-08:00

The ABA team has been working very hard with Kai on improving his fine motor skills and handwriting. He is now able to write his name with an appropriate pencil/crayon grip! Today he drew a happy face above his name and was very, very proud! We posted his photo on the fridge.....here he is, showing off his artwork. :) Eat your heart out Picasso!

...a small thing we appreciate

2010-11-27T12:35:00.000-08:00

It is another "Small Things Saturday" and today I am appreciating the fact that our son is happy with the littlest things! With the holidays right around the corner, he won't be requesting the latest electronic device, a particular (expensive) Thomas the Train accessory, or anything else of the sort. He is happy with ANYTHING he opens as a gift!

....kinda helps in budgeting for the holidays! This "Small Things Saturday" is really about the small things...

Guest Post.....the Hubby

2010-11-26T17:23:00.000-08:00

Okay....so I'm on the last leg of this National Blog Posting Month thing.....and yes, have posted every day for this month. I was at a total loss for what to write today, so asked my dear hubby if he had anything to say...... Hence, I've entrusted him to Mr. HP (Hewlett Packard that is...) this evening for a guest post :) Here Goes:

Hi, Folks.

I guess I'm taking a much-deserved break from doing what lots of husbands/fathers do this time of year. I've moved all the heavy furniture to make room for the Christmas Tree and I got started with putting up the outdoor Christmas lights (always a daunting task here in Wisconsin; it actually got better once my fingertips stopped hurting from the cold and got numb).  It's been interesting having Chris occasionally ask me for topic ideas for this daily blog thing and, son-of-a-gun, now I have free rein. Hmm...what to say?

As long as I've been around, I continue to be fascinated by male/female differences.  This blogging thing is HUGE with the ladies. Well, regarding families anyway. I suppose a lot of guys blog, too, but probably more about football, cars, and beer can collections.  Chris started blogging about four years ago when a friend of hers recommended we do BabyJellyBeans when we adopted Jade (this was a kind of start-up blog kit). While in China for her adoption, she and I took turns creating blog entries. We both enjoyed it and it also led to a few, uh, "discussions" about our differing writing styles. Since then, she has so completely taken off with it and I usually get online just to read a lot of internet news articles.

There's no doubt that our lives have changed since adopting our children, but it has changed the most for Chris. She went from a full-time professional to a mostly stay-at-home mommy to kids with medical and psychological issues. When I focus hard on what her daily life is like here at home with the "kiddos", it's so obvious that she's needed some creative, intellectual outlet...and some sympathetic and emotional support from others who understand her situation. This blogging and the wider community of ladies she found has been a wonderful thing. Yeah, I'm the husband and, yeah, I live here, but I don't always "get it" when she has a frustration or concern. Here's a my standard story about how it can be around here:

Early on with the kids, Chris would notice something that concerned her and say, "Scott, did you notice that?" I'd say, "Notice what?" After a bit of educating, she'd say, "Did you notice that?" Then I'd say, "Yeah, so?"  After some more educating, she'd say, "Did you notice that?" Finally, I'd say, "Yeah, that is a problem and what do you think we should do about it?" I've heard that this is common among we hubbies.

To wrap up this guest-post, I need to say am astounded by the amount of research Chris puts in to understanding our kids and what can be done to help them overcome their challenges, and am very lucky that she does. Also, the blogging she does with all of you has been very important to her and all of your ideas, insight, and personal stories have made a real difference for the better. From me to you, "thank you."

Food

2010-11-25T20:50:00.000-08:00

Well, we're home from Thanksgiving and had a wonderful meal at my folks'.    We're all stuffed to the gills and the tryptophan from the turkey (and the beaujolais) has us feeling quite relaxed!

One of the things that is always difficult during holidays is having to monitor Kai with his food issues.    Kai has no satiation response and thus, does not understand the concept of hungry or full.    Because of his early starvation, he is obsessed with all things edible....and has a hard time just "being a kid" when food is around. He is totally locked on whenever hors d' oeurves are put out or dinner is being prepared...and is literally obsessed with eating.    This can get extremely stressful because he has such an emotional attachment to food....and we do try to set limits (no stuffing his mouth [I don't want to do the heimlich again], no picking food out of the garbage or off of the floor and eating it, no eating off of others plates or forlornly begging [yes...he does this, and yes, it feels like having a dog....I know that sounds horrible, but it's reality]).   Kai will seriously eat as much as an adult, and will think he should keep eating as long as food is in sight.    Drives me completely insane!

There have been times where we have just let him "go to town" on the food thing, only to have him wake up in the middle of the night with horrible diarrhea and a mess on our hands.    Luckily kids' bellies show when they're physcially full, and I can point to his belly to show him just how full he is....even though he does not register it mentally.

SO...holidays can be stressful.   Setting limits can lead to meltdowns....and the food issue in particular is a touchy one (ie., I seem like the Wicked Witch of the West because I appear to be torturing my once-starving son by setting limits on the food-gorging).     Yet another example of how I just need to shrug my shoulders and realize that I will not be nominated for the Parent of the Year award.

....not as much as dealing with meltdowns!

In Thanks...for Things I've Learned

2010-11-24T06:15:00.000-08:00

Having a child with special needs has taught me:

To appreciate even the LITTLE milestones in life, not just the grand, noticeable ones.
not to sweat the "small stuff." I couldn't even if I wanted to....too consumed with the daily stuff we NEED to do!

not to rely so much on the opinions of others, and to trust my "mommy intuition."
to be thankful that I have a husband who is a devoted father and an equal partner.
to appreciate that we have health care....when many others do not.
to let others "share the load" and be okay with accepting support.
to slow down and appreciate the GOOD days.
that peers and siblings are wonderful natural teachers and role models!
that sometimes loving your child means parenting differently than you'd like to....and being okay with that.
how to trust, and have faith that growth is happening, even though we may not see it at the moment.
how resilient we really CAN be!

Happy Thanksgiving!

Sesame Street: Cookie Monster Auditions for Saturday Night Live!

2010-11-23T14:41:00.000-08:00

Are you a Cookie Monster fan? Are you a Sesame Street Affecianado? Then join me in voting for Cookie Monster to host SNL :)

Find the link on Facebook!

This is crazy...

2010-11-21T07:23:00.000-08:00

Because both of our children are adopted from China, I have taken a particular interest in the socio-political issues involving the country.   The most recent upheaval has been over the government's actions taken over Nobel Peace Prize activist Liu Xiaobo.   See video  ( http://link.brightcove.com/services/player/bcpid42806360001?bctid=628527091001 ).     Read article: (Nobel Peace Prize may not be given out at December ceremony)

This is what I'm referring to:

Chinese woman sentenced to year in labor camp over tweet

With this in mind, I am so thankful that our children will not need to grow up under this political repression, and that they now live in a country where they can speak freely without fear.

Good Bye to the SCOWL

2010-11-20T07:45:00.000-08:00

SMALL THINGS SATURDAY

This week my brother-in-law was over at our house, and we had the occasion to look at some older photos on his computer. One of the things we were BLOWN AWAY by is the receding of Kai's once omni-present scowl! Seriously, this kiddo used to walk around with a scowl on his face at least 50-75% of the time..... (this is pre-meds). He is probably the only child I know of who couldn't even enjoy looking for his Easter basket or a leisurely day at the zoo. Every moment was difficult for him.....and he went from zero to meltdown in a split second (hence, many puffy-eyed pics!). These days were HARD!!! OMG, now that I'm looking back at the photos I am having flashbacks as to how honestly depressed I felt...just from having to care for such a difficult kid.

In China....on a leisurely walk through the park

On Easter morning... no interest in the Easter Bunny.

Look for eggs....are you kidding me?

I'm not likin' this. Can I go back to Kai-land?

Whoa.....I shouldn't even do this post as part of Small Things Saturday..... the elimination of Kai's scowl is a HUGE milestone! Just look at his happy face! We very seldom see the scowl anymore....if ever. :)

Our "happy face" Kai-man

Wanna join the blog hop? Just click on the link below and add your URL. Share your experience of a small thing that you appreciate today!

I'm an "Underground Mom"

2010-11-19T12:01:00.000-08:00

There's a movement called "Underground Moms....Raising the voice of Reason" (widget in my sidebar) that I've recently linked up with. Here's the video explaining how and why the group got started:

I find it amazing that it takes a movement to get parents to raise their children rationally! This stuff is NOT rocket science! Sometimes I have to remind myself NOT to be a helicopter parent, but it's a heck of a lot less stressful!

Favorite Photo of my Child: Photo Carnival

2010-11-18T12:04:00.000-08:00

This photo was taken just before Father's Day, 3 1/2 months after bringing Kai home from China (notice the peonies in full bloom!) Kai had only been walking since the end of March and was quite the clutzy little toddler...at the old age of 32 months! Jade was a great big sis and role model for her little brother, who honestly was a little difficult to "like" at times because of his frequent and long-lasting meltdowns. This photo represents a fun, sunny and carefree day......the first that we had seen in quite a while! :)

Take a look at others' favorite pics by following the link to this mom's blog: Love that Max!

Guest Posting today!

2010-11-17T11:51:00.000-08:00

I'm doing a guest post today over at Me and My Boys blog .    Thanks Jen, for hosting me!   Jen is a mom I met through the SITS "Spring Chickens" group of mom bloggers of children with special needs.    Jen is a mom to two adorable little boys, Christian and Elijah.   Her younger son Elijah has Down Syndrome.

Jen is doing a series of guest blog posts on the topic of Expectations, particularly in regard to raising a child with special needs. Please feel free to pour yourself a cup of coffee, tea or whatever....go over to Jen's blog to say "hi" and check it out!

Jen's Blog:   http://meandmyboysblog.blogspot.com/

Perfectly Useless information...

2010-11-16T17:27:00.000-08:00

That is, unless you happen to have a cleft-affected kiddo!

The Uvula

a normal uvula

Jade's uvula (and you can see the great job her surgeon did with closing her palate!)

Wikipedia Definition:

The uvula (pronounced /ˈjuːvjələ/) is the conic projection from the posterior edge of the middle of the soft palate, composed of connective tissue containing a number of racemose glands, and some muscular fibers

The uvula plays a key role in the articulation of the sound of the human voice to form the sounds of speech.[3] The uvula functions in tandem with the back of the throat, the palate, and air coming up from the lungs to create a number of guttural and other sounds. Uvular consonants are not found in most dialects of English, though they are found in many Semitic, Caucasian, and Turkic languages, as well as several languages of Western Europe such as German, French, Portuguese, and a few Celtic languages. Certain African languages such as the Khoisan languages use the uvula to produce click consonants as well, though other than that, uvular consonants are fairly uncommon in Sub-Saharan Africa.

In a small number of people, the uvula does not close properly against the back of the throat, causing a condition known as velopharyngeal insufficiency or VPI. This causes "nasal" (or more properly "hyper-nasal") speech, where a lot of extra air comes down the nose, and the speaker is unable to say certain consonants, for example producing the sound /b/ like /m/. (This is common in cleft-affected persons)

So, Why in the heck am I doing a post about this little appendage?

Today my daughter Jade had an appointment with the Cleft Palate Team at Children's Hospital, during which time we met with multiple specialists in their respective areas.    When we met with the speech and language pathologist, she remarked to Jade about her "little uvula."    (I had been under the impression that Jade did not have one because of her cleft....but apparently there IS a wee little one in there!)   WELL.....you woulda thunk that the speech pathologist gave Jade the hugest compliment!   "You mean, I HAVE a UVULA???"   Jade exclaimed. "Why, yes Jade...do you want to see it?"  said the speech pathologist.   "YEAH! Wow...that's COOL!" Jade beamed.

Throughout the rest of the day Jade asked each medical professional if she could see their uvula.   (I know....sounds kinda dirty, doesn't it?)    Of course, everyone thought this was incredibly cute, and complied with Jade's request by opening wide to let Jade see.

Now our little Jadester is on the top of the world because she has been told that she DOES have a uvula.    I guess it truly IS about the little things, isn't it?