Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Saturday, June 27, 2015

New AFOs

Dr. Nuzzo gave us some great input on what style AFO he thought would be great for M.

Our orthotist did a great job creating these for M!

She just got them yesterday and like always, it takes a few days to adjust to a new style of brace.  However her range of motion in her ankle is much improved and I think her gait looks much less "stiff."

Thursday, June 18, 2015

Dr. Nuzzo Describing "Flimsy" AFOs

I saw this video of Dr. Nuzzo describing what kind of AFO he likes to see kids in after SPML surgery. M had SPML surgery with Dr. Nuzzo in April last year and we can't say enough good things about him.  He is only one of two doctors in the U.S. that does this surgery (he pioneered it about 20 years ago) so its widely unknown.

Our orthotist watched this video and said that he can definitely fabricate braces like this for us (or anyone).  Its very difficult to get doctors, orthotists, and therapists to think "outside the box" when it comes to CP so we've been very blessed to have our PT and orthotist totally on board with the surgery and the recommended orthotics.  I wish everyone understood more about SPML (selective percutaneous myofascial lengthening) surgery and I hope that Dr. Nuzzo's explanation and version of AFOs becomes more widely recognized.  Traditional braces only come in a handful of styles, are bulky, stiff, and don't allow for very "natural" walking.  Most "custom" AFOs aren't really that custom at all.

Here he is.  Very cool!

Thursday, June 11, 2015

To the Teacher Who Kept Clipping my Daughter Down for Running

A friend of mine who also has children with special needs told me that I should start doing the writing prompts for The Mighty.  I have a hard time keeping things short, but I figured I'd give it a whirl.  Whether it gets published or not, it felt good to write it.

Dear Teacher,

When we met at Open House at the beginning of the year, there was so much I wanted you to know about my daughter.  She's 8, but she's only been mine since she was 4.  When we met her, in an impoverished orphanage in Ukraine, her hair was buzzed off and at 24lbs she was the size of a 2 year old.  

She was born severely premature and suffered a stroke that damaged parts of her brain shortly after birth.  Due to a lack of medical treatment for her Cerebral Palsy, she was completely unable to walk and could barely sit the first time we saw her.  

I wish you could have seen her then so you knew how far she has come, but in some ways I'm glad you did not.  What I really wish you knew is how many times she was left out and left behind simply because she couldn't walk.  Its been 4 years and she still remembers all of the other children going to music class while she sat alone.

What you saw when we came to your classroom was a seemingly social and extremely inquisitive little girl, small for her age, but loud.  She's always been loud.  At the orphanage it was the only way she could get attention from anyone.  She couldn't walk so she yelled.  I wish you knew how I could tell when she was feeling left out by the volume of her voice, always trying to get someone, anyone to notice her.

I wish you could have seen how at 4 years old, she didn't know what crayons were.  While children in the U.S. get therapy, she got stuck in a crib.  I wish you could have seen her when she tried to eat the PlayDoh we bought for her because she had no idea what it was.  In four years, no one had ever given her paper to scribble on.

When we brought her home and first took her to the CP clinic, I wish you could have heard the doctor tell us that she'd never walk.  I wish you could have felt what I felt that day.  Sad. Indignant. Determined.  

I wish you could have been there when the developmental pediatrician who charged $450 to walk in the door took only 10 minutes with my newly adopted 4 year old then asked her to replicate a tower of blocks.  She didn't like him, so she wouldn't do it.  I wonder if you would have agreed with him when he told me that she would always be at the low end of the IQ scale? I never took her back to see that doctor.  He saw the traumatized, neglected child in front of him and missed the child she could become. 

I wish you knew how many hours of physical therapy I've sat through so my daughter could achieve her potential.  I wish you could have heard her screaming at me in Russian those first months home every.single.night. as I did stretches with her.  Her tears and mine together; I'm still not sure what she was calling me.  My arms would ache as I supported her weight while I did exercises with her to strengthen her legs, but that feisty spirit of hers is why she's here today.  

I wish you knew what it was like to hold your screaming child down in an exam room while a doctor injects a needle full of Botox 12+ times into her legs and arm in the hope that it provides temporary relief of the constant spasticity.   

I really wish you knew what it was like to watch her take her first independent steps as a 5 year old.  I wish you could appreciate what its like to have to teach a 5 year old how to put her hands out in front and behind her when she falls.  I wish you knew how proud we were of her the first time she fell backwards and finally got her elbow down first instead of her head.

I wish that you could experience what its like to navigate an airport and fly on a plane with a disabled child in a wheelchair with the hope that the surgeon you're going to see will be able to give her the ability to run.

I wish you knew what it was like to be a little girl that can't run, but believes one day she will.

So when my daughter came home clipped down to yellow like she'd done something wrong, and the note in her agenda said, "Running in the hallway."  I wish you could have known what that felt like for me.

Maybe now you understand why I wrote back, "You know, I was told she'd never run."

Sunday, June 7, 2015

A Little More Detail about Homeschooling

I've had a couple of people ask how I'm doing with all the changes we've had going on.

Well, its like this.  I've spent two of the most stressful years of my life as we've tried to navigate the special education and ESL programs in our school system.  I have tried to put into words on this blog more than a few times how stressful it has been and I just don't think words can do it justice.

There are many things I cannot yet talk about publicly because as I've said before, people have spied on my blog and Facebook with the intention of passing info on to the school.  Perhaps one day when the entire truth has come out and everything has been settled, I can blog more openly but for now I cannot.

The main thing is that the decision to home school the children has lifted what felt like an elephant off of my chest.  I didn't realize what a struggle it was to breathe until it was gone.  Home schooling was not our first choice for many reasons.  The children have many learning disabilities and special needs.  On paper, the school system with its programs and therapies looks like the obvious choice.  The reality is much different.  The long and short of it is that the children were not and were not ever going to get what they needed to succeed in life no matter how hard we tried to make it work with the school.

There are those in the school system that would disagree with me, but therein lies the problem.  They are my children, not the school's.  At the end of the day, I am the one who will be standing there when they graduate and are supposed to be ready to enter the workforce or go to college.  For 4 of my kids, the future they were heading towards with the plan in place from the school was never going to contain either of those two things.  Very simply put, I want the same bright future for my kids as the children that do not have learning disabilities.  Given the information that we have from outside evaluations, that is quite possibly, but requires specialized intervention and instruction while the children are still young enough to benefit from it.

The choice not to send the kids back was made after years of fighting for a future that I realized my children were never going to get if we stayed where we were.  At some point I realized that I was fighting for something that was presented as possible as the IEP team sat around the table, but was never going to be reality in the classroom for a multitude of reasons.  There is so much more I could say… but right now I cannot.  Suffice it to say that the system is broken.

Once our choice was made, I notified the school district.  I feel 100% confident that this is the best that we can do by our children right now.  I've been able to focus on moving forward and doing the best I can to get things in place to help them in the best way we can right now.

A weight has been lifted from me.  The peace that comes with knowing that one is doing the right thing is a very contented feeling.  I have recently been having trouble with all of the feelings I had suppressed over the past two years of what I can only describe as IEP hell, just coming out.  I have had to suck it up and deal since we stepped off the airplane with our newest boys and for so long after that I didn't even have time to work through MY feelings.  We lost our church.  I've lost friends.  I've been spied on and slandered.  I couldn't dwell on those things with my children's future at stake.  My feelings were irrelevant while my efforts were put into my children.  Now my feelings are coming out and it is unpleasant.  I was born a very sensitive person.  I feel deeply.  Its hard to feel so sad now that I am finally relieved and happy, but I think its good.  It has become increasingly apparent to me that I could have in no way dealt with the stress of fighting for proper placements, programs, and therapies and then tried to make sure what was supposed to happen was indeed actually happening on a day to day basis for another year.  The stress of having some sort of constant conflict with staff members at my kids' school was painful for me.  I'm a very intuitive person; I know how staff members felt about me.  I am very relieved that I do not have to deal with that sort of personal conflict anymore.        

Having all 6 kids at home for the past two weeks has been surprisingly low key.  We've done a ton of stuff including sorting winter/summer clothes, grocery shopping together, learning how to multiply with a Japanese method, doing crafts, and just hanging out.  My children are not and never were the cause of most of my stress.  I always wanted to be a mom, and I always wanted to love children that didn't have a mom.  I have everything that I wanted.  My greatest mistake was trusting the school when they said that they could help my kids.  There is no way I could have foreseen how things would play out.  I could never have dreamed it because its not in me to treat anyone the way that we have been treated. I deeply regret trusting my most precious gifts to a system that doesn't see value in those that learn differently.  

I truly hope that with our children at home, we can finally make academic progress with them.  My kids all have "average" intellectual abilities.  They have definitely weaknesses, but each child has strengths.  I have spent my time researching not so much what "wrong" with each kid, but what's right.  I feel that if we can focus on how they do learn and not on how they DO NOT then we will make light years worth of progress.  Right now I have a very bright 10 year old that has been reading on a level A since we brought him home from Ukraine, despite reading intervention.  This child is smart.  Two days ago, I showed him how to multiply two digit numbers using a very visual method I found on Pinterest.  I showed him ONE TIME and he got it then proceeded to make up his own problems and do them for 30 more minutes, using only the iPad calculator to check them.  This morning he was showing his 9 year old brother how to do it.  For reference, I showed my husband what we were doing and it took me going through several problems, showing him the steps for him to "get it." This child should in no way be stuck academically anywhere!  Given the proper help, he should be soaring.  I also showed my 12 year old how to multiply using this method.  He spent the entire year in math intervention in 5th grade and still couldn't multiply.  His goals are to be at a second grade level by February of next year!  After 20 minutes of working with him, he also got it and began making up his own problems because he was so thrilled to finally be able to do this skill.  These kids want to learn and they are capable of learning.  What I've seen my kids do just in the two weeks they've been at home with me gives me such hope.

I've been researching the programs and methods that were recommended in my kids' neuropsychological evals.  I've researched their disabilities, their strengths and weaknesses.  I've researched both conventional and non-conventional therapy and educational programs.  I've looked at programs for specific issues like Dyslexia or Central Auditory Processing Disorder and I feel very confident that I can do this.  I rely heavily on my God given intuition and deduction skills.  God gave them to me for a reason!  I'm a determined person.  I will figure out what each child needs and I will find a way to give it to them one way or another.  Our homeschooling approach is definitely an evolving thing.  We will have to make adjustments as we go, but finally we have something positive to focus on moving forward.

If you made it this far, thanks for reading my ramblings.  I find it somewhat catatonic to write it all out.  I can finally put it to rest once its written down somewhere.  I quit blogging so much of what we were dealing with when I realized that what I was saying was being read by those who did not care about our struggles.  I feel sorry for those people because I cannot imagine what a miserable existence it is to lack empathy.  I'd rather feel.



Friday, June 5, 2015

No More IEPs

This box contains all of my children's special education paperwork.  IEPs, evals, therapy reports, progress reports, medical info pertaining to school, complaints I've filed, lawyer recommendations, neuropsych evals (well over 100 pages worth), just everything.  It weighs over 30lbs.

I can't begin to describe to you the amount of time and effort I have put into this box.  I look at it and I want to cry.  The truth is I've already cried over all of it many times.  I've stressed, I've stayed up late, I've attended hours and hours of meetings.

For many reasons, we decided that it was no longer worth the fight.  
(Mostly because I refuse to medicate myself to endure another year of mental torture) 

I traded in that box for this:

I am 110% confident that I can better provide what my children need from home.  Maybe I'll even be able to learn how to breathe, relax, and enjoy life again without the dark cloud of fighting for their future always hanging over my head.

The kids got out of school at the end of May and we are just enjoying the down time so very much!

We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson