No Merry Christmas ’08

Jonathon was now getting many “therapies” and “interventions.”  They included: vision therapy, speech therapy, OT, and reading intervention/tutoring.  Life was full.  Josh at this point was getting speech from a lady that came to our home, great joy, her coming to our house.

It was almost Christmas and there was a general buzz around our house, “Was number four, a boy or a girl?”  At every infomercial both boys would insist that we needed every single item today.  Homeschooling was going.  Church was growing and good.  All was calm, all was bright.  Except trying to decide where we “to go” since being at the neurologist with Johnathan.

Josh was not only getting speech therapy for articulation, he was getting it for oral-motor help too.  Josh was two and still drooled like a tiny baby especially when engaging in large motor activities.  But he remained our happy, gleaming little boy.  He spoke often in a “strange” language and we weren’t sure where he was coming from, but he always smiled and giggled.  Except, when no one could understand him and he really wanted something.

I remember standing in the kitchen almost daily to several times a day, lining up boxes waiting for him to gesture as to what he wanted.  We did the same thing with toys and clothes and… well, you get the picture.  He started scratching at his clothes, complaining they hurt him.  After being through the same with Jonathon, I just gave the clothes he did not tolerate well away.  I learned with Jonathon, once he had a bad feeling with a certain item, there was almost always – no turning back. 

We were getting along.  On Friday, December 19th, we were just getting ready for the kids break from the Virtual Academy.  Jonathon had been to a therapy.  I was coming home with him.  Upon opening the door, I saw Jeff.  He looked pale and concerned.

Jeff is the rock of our house.  He never worries.  Nothing phases him, at least he does not show it.  He tends to be the quiet one.  With all this, with the boys, he typically says very little and will offer a, “It will work out” or “We will figure it out.” – every now and then. 

But upon this Friday, he seemed to look gray.  I knew something was not right in an instant.  “What is wrong?,”  I called.  Jeff took me in the kitchen and whispered, they want us at Children’s Hospital in Neurology first thing Monday morning.  I began to wonder, “Do we pack clothes?  What is going on?”  I called the department, leaving messages.  No one wanted to be contacted late on a Friday afternoon.  I finally talked to the doctor’s nurse, it was about the blood test.  She said I did not need to pack clothes.  (Relief, a little…)

All weekend, like a toothache, this uncertainty tried to pop up and there was a dull pain.  We kept going.  Through this whole process, I was all over the place on the inside, but tried to keep a solid front for the kids.  Jeff got my rants and raves. 

So Monday morning we went.  I remember it was very cold.  Walking up to the clinic felt cumbersome and alarming.  I stared at every child wondering if that would be us after they told us what was going on.  And then it came, we were taken back and they broke the news.

The news I will not completely tell here.  I do not want to embarrass the kids in any way with this blog.  All I will say, is that I thank God we had BCMH funding during this time.  BCMH stands for the Bureau of Children with Medical Handicaps.  I had obtained it for the diagnostic testing, for neurology and maybe the autism clinic if we needed that.  The blood test they did cost somewhere around $5,000.00.  Our insurance will not even touch genetics.  Now when the insurance company got the results from Jonathon, they wanted me tested immediately, only because I was pregnant.  My testing came back fine, thankfully.

Anyone, with a child, up to age 21, I think, can apply for BCMH funding.  It is completely awesome for testing.  The BCMH will not cover mental conditions, such as autism or down syndrome or even genetic conditions.  But for children with medical conditions, I feel like this is a God send for Americans.  It was a God send for us, just using it for testing.  From what I understand, anyone can use it for diagnostic tests, even for genetics.  How wonderful.

What we were told, that I will share, is that Jonathon had a very rare finding in the genetic field.  Apparently, the testing I had while pregnant with him, did not pick up on it.  Either way, I would have never ever ended my pregnancy with Jonathon.  But anyway, it was only 5 years old as a diagnosis.  The neurologists had found out about it on the internet!!  There were only 4 diagnosis like it in central Ohio that they knew of, at the time.  They told me Jonathon had a heart condition associated with the genetic piece.  They told me many things and gave me print outs from web sites.

Well, three years later, we have been to genetics twice more now.  We now know, thanks to new findings all the time, Jonathon does not have the heart condition.  I went to a cardiologist in February of 2009, just to make sure and he confirmed it also.  But the grim diagnosis we were given then, was not correct completely.  I joined a group and followed others with the same diagnosis.  I was so thankful, Jonathon was not on a g-tube, or with severe medical problems like many in the group.  My heart definitely goes out to those families.

But that year, 2008, at that time, I thought Jonathon was very impaired.  I thought his heart needed healed.  I thought he would need teams of doctors on stand-by whenever he had surgery because of heart and gastrotology issues.  But not any of these were the biggest blow.

No, the head neurologist came in after our genetic findings.  She looked at Jonathon and said he is perfect.  “Mom and Dad, I know the other doctor saidAsperger’s, but I completely disagree.  Any strange behavior is related to this genetics testing.  If he had the Asperger’s he would be hand-flapping, and being crazy.  Your son is perfect.”  She watched him walk and left.

I was devastated.  Now there would be no special schooling.  There would be no more funding.  The well was dry in my world.  I was very alone.  Merry Christmas.  The next day I was to find whether I was having a girl or a boy and now I would have to tell my “Gyno” that they wanted extra doctors around for delivery in case this baby was like Jonathon.  Merry Christmas.

The Christmas of 2007 and 2008, my parents got me “Jonathon” books.  Yipee!  The first in 2007 were all books on Dyslexia.  In 2008, books about Asperger’s.  This was very sweet of my parents.  They wanted Jeff and I to be the best parents we could be to Jonathon.  It is funny when Josh was diagnosed, there were no books given.  I guess, everyone thought we had enough. 

But my favorite Asperger’s book is Parenting Your Asperger Child by Alan Sohn, Ed.D and Cathy Grayson, M.A.  The best thing about this book is it describes the different presentations of Asperger’s.  I found the book very interesting.  My favorite section is on discipline because with this type of child, our regular style of discipline did not seem to fit Jonathon properly.  I hope you like the book as much as I have.  It would definitely help if you are wondering if your child could possibly fit with high functioning autism. 

Great read!

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