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

Friday, November 7, 2014

Special Needs Parenting - Also Known as Drowning on Air

Let me start off by saying that before my children, I didn't understand people who were parents.  One cannot understand why some people think its acceptable to leave toys lying in the floor even when guests come over, unless you also have kids.  The same is true with parents of special needs children.  You cannot understand why they find it necessary to have lawyers or advocates to attend IEP meetings with them unless you have also been there.

I mean… Don't the schools WANT to help the kids??  Don't educators go into their line of work because they like working with children and want to help ALL of them succeed no matter what?

I used to think so too.

That was before…

Before I sat in an IEP meeting requesting therapy for my child only to have the amount slashed by 1/4 and deemed "only necessary to access the school environment."  Yet she couldn't walk, color, draw, use scissors, write intersecting lines, or cross midline at age 5.  

Before I saw in a meeting with a teacher that told me, "He isn't interested in learning" about my newly adopted son who had been home for 2 months.

Before I had a child with an attachment disorder that would seek affection from a homeless man in a barber shop or a random stranger the park.  Before I had school staff tell me that they WOULD keep hugging her despite my requests that they redirect affection seeking because "We hug all the other kids."

Before my disabled child's IEP was not followed and after multiple close calls, she was thrown out of her seat on the school bus, hitting her head.

Before my non-English speaking child got off the bus and handed me his broken glasses with no explanation.

Before the school refused to evaluate my severely speech disabled child for speech services.

Before my children brought home 5 packets of fundraisers asking for 10 addresses EACH, the next day, from children who couldn't speak or write English and have disabilities.  The school took time for that, but they couldn't take time to make sure the ESL teacher showed up or call the translator I provided them with.

Before I was blamed for my son's academic difficulties because I homeschooled him for 2 years.  Before they dragged the evaluation process out for 9 months and then found him to have a learning disability that had nothing to do with how I taught him.

Before my children were denied adequate or appropriate ESL services.

Before my children were acting out in class because they didn't understand a word of what was being taught while no one was taking the time to explain.

Before I attended hours long meetings every single week for weeks only to later find out that half of the things we agreed to in the meetings were never actually done.  IEPs were not followed.  ESL plans were not even given to teachers, so... WHY!?

Before the school psychologist decided that my child with a trauma history did not have anxiety.  Before she decided that my child was intellectually disabled.

Before we got the Independent Educational Evaluation from a neuropsych that diagnosed her with not just "debilitating anxiety" but PTSD along with "normal intelligence."

Before the school ignored my explanations of my child's anxiety related to being told she couldn't use the restroom facilities at all times and further traumatized her at school by denying her.

Before I took my son up to the school (during hosting) and asked the principal what we needed to do to make his transition and his brothers' smooth and well thought out after their adoption.

Before I emailed the school from Ukraine during our adoption process, explaining the kids' needs and asking what I needed to do to have them properly evaluated when we came back home.

Before those emails were ignored.

Before my children were not evaluated.

Before necessary services were not provided.

Before I was belittled, ignored, and then alternately harassed about meeting dates.

Before we made the decision to move outside of our children's current school district in hopes that a different school would be better.

I so wanted the school to welcome my children and offer suggestions and formulate a plan to help me help my kids.  I wanted that.  I was naive enough to expect that because its what I would do if I ran a school.

That didn't happen.

So I filed complaints.  I started climbing the chain of command in the district.  I went to the top.  Then I went outside of the district with my complaints.

I researched laws late into the night for months at a time.  I would be so upset and stressed out that I would be shaking as I read what the law said and then read what the school was telling me.  "We do not evaluate children in Ukrainian."

I realized that no matter how many evaluations I asked the school to do, they would come back with the same line that my kids were either "borderline cognitive ability" or "intellectually disabled."  With that line of reasoning, they told me "Not to expect much progress because they are performing at their cognitive ability."

I wanted to scream, "They can't all just be stupid!"  Because lets be real, "Below average cognitive ability" used to be called "Mentally retarded."  The new phrase might be a kinder, more respectful, and more politically correct way of saying it, but it still MEANS the same thing.  If a child is not actually "intellectually disabled" then what is gained by labeling them as such?  What does it benefit the child if everyone is convinced they are unable to learn when the real problem is with how they are taught?

So I learned how to dissent in an IEP meeting.  Then I learned how to request Independent Educational Evaluations.  Then I involved our social workers.

Finally I've had two of my children (D and M) evaluated by someone who specializes in internationally adopted children.  Finally.  And I got the first report back.  Thirty one pages of validation for me.  Its hard to read all of the things that are actually going on with my child, but I KNEW that it was not an intelligence problem.  I KNEW that.  To read things like, "severely dyslexic, visual impairment, traumatic brain injury, learning disability, math disorder, visual processing deficit" and finally GET why my kid struggles is priceless.  E has yet to have his evaluation, but I filled out the 45 pages of forms for him as well and mailed all.the.things. so he can be evaluated next week.  So if you are counting, that is 135 pages of forms I have filled out for three kids.  Not to mention the 100s of pages of IEP paperwork, teacher forms, and evaluations that I also had to send in for this.

To finally reach the point where someone who is a professional in the field of neuropsychology working with adopted children is able to evaluate your kids is amazing and incredibly heartbreaking!  Finally we have an accurate picture of why our children struggle the way they do, and that is both painful and wonderful; it it took a LOT of pain and tears and work to get here!

Then to have people actually ARGUE with you about what the report says and why they disagree with it is the most infinitely frustrating thing.  I can't even formulate words to express the pain and anger and mind boggling, overwhelming frustration I am feeling right now.

I have researched the laws.  I have damned it all back to hell a thousand times when people said it couldn't be done, and I found a way to bring in the professional to tell me how to help my children.  I refuse to listen when someone says "We can't." or "You can't." or "They won't."  I don't believe the doubters and the naysayers.  They sit and watch while I go out and DO.
I know at this point what needs to happen, but getting there is proving to be my own personal hell full of those who all know a better way to do what I have devoted all of my time and effort to doing.  No one really wants to hear what its like because that takes actual time and effort to understand our complex situation, but they all want to offer advice on what I should be doing, what I should not be doing, or how to fix it.  How can you fix what you do not understand!?      

To be alone in your understanding of what your children need without resources available to help them is to be a fish out of the water with everyone around you trying to convince you that to learn you must breath air and walk on two legs.  How can fish argue with those insisting they could just breathe air if they only tried hard enough?  At some point fish must just quit wasting time trying to convince others how badly they need water or they will quite literally drown on air while trying to walk on fins.

And that's where I am at now.  I am drowning in my realizations of what my children need and how hopelessly ignorant everyone else is of that. Maybe everyone else can breathe out of the water, but we are stuck on an island of isolation and misunderstanding unable to breathe.  I am sitting here quite literally drowning while everyone around me is insisting I am simply breathing the wrong way.  "If you will just…." and the seconds tick off the clock.  My children who have already lost so much time are losing more; there are many things in the works as we refuse to give up, but meanwhile the clock ticks and I feel like I cannot breathe. I am drowning while surrounded by the same air that is sufficient for everyone else.  How can they all be content to just watch?


Freedom Hollow Farmgirl said...

please, for your children's sake, continue to advocate for your children. Check in with the school REGULARLY. Become a pain in their butts. I work in the public school system as a special education para professional. Parents have no idea what goes on in the schools. I see it. I hate it! I advocate for my special kiddos as much as I can, but we are forbidden to speak to the parents. I think of my charges as "my kiddos". What would I want as a parent for my kid? Only the best!

Fight for your children and do EVERYTHING you can to make sure they are getting every single service they are supposed to!

Have a great weekend,

Mom to Mine said...

"Become a pain in their butts."
Oh girl… if you only knew.
I have become a royal pain in the entire district's butt. I check in on a DAILY basis and I absolutely hold them to what the kids' plans say. I am just too tired to blog about it all.

AZ Chapman said...

so sorry this has been crappy. hugs

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