Wednesday, July 28, 2010

Micah's Diagnosis

Tuesday, July 27th, we took Micah for his long awaited Autism Assessment evaluation appointment in Oklahoma City.  What a day it turned out to be.  Up until the appointment, we had been given belief that he's high functioning or another words, has Asperger's.  How wrong we were.
 
The team at the Oklahoma University Child Study Center were great.  We were made to feel very welcome and at ease with the entire process.  Micah wasn't so sure about it at first but once I took off his shoes so he could go bare foot, he calmed down quite a bit.  Micah only wears shoes outdoors.  Indoors, he will fuss and cry if you make him wear them.  Seems that he enjoys being able to feel the floor with his feet.  We were welcomed by a gentleman who is the parent of 3 special needs children.  I believe that he said they are all autistic.  He took us into a room where Micah could play and get settled in.  We were brought up to speed on what would be taking place that day.  Next, we began meeting the rest of the team of doctors who would be observing and evaluating Micah.  The team spoke to us about our concerns and what we would like from their evaluation.  Our primary concerns were: 1. A diagnosis as to what Micah's exact issues are,  2. Recommendations to help us in providing therapy he needs, and 3. We wanted to have information about resources & support available.
 
I was impressed on how easily they were able to take various forms of play and use them to test Micah's understanding.  One game was showing him a little car then hiding it under one of two washcloths.  He was then asked to find the car.  Sadly, Micah just sat on my lap and did nothing in response.  All the while, the 2 doctors testing him would take turns trying new little games with him.  At one point, Micah got stressed and had to get off my lap to walk in circles while finger flapping.  He then was brought back on my lap to finish this part of the testing.
 
Next, the same 2 doctors took us back into the larger play room and observed him with toys on the floor.  Micah simply walked in circles around them and never tried to play with any of them.  They were simply an obstacle to walk around.  The toys were picked up and 1 of the doctors then tried to engage Micah in playing with her.  One thing that she did that got his attention was blowing bubbles.  He loves bubbles!  He would watch her do so but had no way to ask her to continue when she would stop for a moment.  After this, Micah was given a very thorough physical exam.  This part he did very well.
 
After a brief time of the doctors consulting each other, they prepared the report for us.  Here is the core of the issue.  Micah doesn't have the more mild form of autism known as Asperger's Syndrome as was believed.  Micah has the more intensive version known simply as Autism.  The worst part is that at age 27 months, he is speaking as a 10 month old and has a 6 month old's understanding of what is said to him.
 
This diagnosis was a blow to us.  We knew that Micah would have obstacles and challenges ahead of him, but this diagnosis just increased them.  Personally, I feel heartbroken when I think of how hard he will have to struggle to overcome his challenges.  We were given some resources to give us both support from other families with autistic children and therapy resources that will work with us and coach us in how to do therapy with Micah.
 
This diagnosis wasn't want he hoped to hear, but now we know what we are dealing with and how to help.
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8 comments:

Valerie said...

My nephew is autistic, he is 11 years old and doing quite well. It was tough for a while, for him and his parents, to learn how to deal with daily things. But as he has learned to communicate things have gotten so much easier. It's always a challenge, but just wanted to let you know that there is SO much out there to help you and Micah. Praying for you and your family on this journey. :-)

Kelle said...

Our prayers are with you, your family and especially Micah. I can't say I can entirely relate but we do have a special needs daughter. Her learning challenges are due to an inoperable brain tumor. She is such a blessing and has beat the doctors up a bit because when they tell us she'll probably never..... she does it. We were told that if she lived past 4yrs of age it would be a miracle, well a mircale she is, as she's now 19yrs old. PTL!!! Of course this all has it's challenges for us as parents and now more than ever as we make preparations for her future, thinking ahead to a time when we are no longer here. HUGS and prayers for all of you. Just know that God is walking beside you and is there to listen.
Blessings,
Kelle

Stephanie said...

Praying for you and your family as you work to figure out the best steps for Micah!

There are lots of free resources online as well, for working with autistic children, so hopefully you find all that you need.

Jan - Leyland, lancs said...

Hi Paula, I was going to say 'sorry to hear the news about the extent of Micah's autism but then I was thinking but he's come so far in such a short space of time that you and your family have been working with him - okay he may only apparently have a certain level of understanding etc but I truly believe that he will come on well and that he is blessed to have a supportive family like you Joe and Abby. I don't think this is a 'problem' but a blessing. One that will test all of you but one that I truly believe will benefit all of you. If there is anything I can do to help - please ask. I know I'm far away but I'm always here on-line or if you have skype - on skype too. My prayers are with you all but somehow I don't think you'll need them. God bless and take care. Jan (Leyland, England)

Sandy said...

Hi There I some how came across your blog today as I was blog hopping. But more likely, God brought me here.

I have a nephew who is severly autistic. While he is still not verbal at 7 years old, the changes we've seen since the diagnosis are nothing short of miraculous. He was diagnosed at 20 months and at the time he couldn't walk, talk, or feed himself. With the exception of speaking he does it all, and he has learned some sign language to make up for the lack of speaking.

One of the greatest days early on was when my brother saw him practicing sitting and standing on the steps - something his therapist taught him to do.

He also suffers from seizures and thankfully that is now under control and he is even more focused than before. And he continues to reach milestones.

I will keep your family in my prayers and she start this journey. But I will pass on the advice my brother & s-i-l give everyone -- ask a lot of questions and don't be afraid to try different therapies that are offered. The diagnosis is the hard part - and the future is in God's hands.

Blessings

Sandy

Michelle H. said...

So sorry to hear this. May God give you strength, wisdom and joy as you find ways to help Micah.I know it was so hard to hear, but I'm also sure that now you'll better know how to reach and teach him.
Blessings!

Darlene in OKC said...

My dear friend. I have read your blog for many years and even though you do not know me...I feel as though your family is my family through Christ. I think of you often, especially with these excessive heat warnings. You are in my prayers dialy. If ever there were a perfect place for Micah to be it is with you. Even though Micah's diagnosis comes as a surprise to you, actually God has prepared you to be his mommy and he will supply you with all that you need to do the job excellentlly. Micah has the best mommy, daddy, and sister. I believe he will thrive and flourish. Prayers are going up and miracles will come down. Please take care. You are in hour hearts and in our prayers. Love in Christ, Darlene in OKC

Linda said...

I am really sorry to hear about Micah. But I know with your love and unrelenting determination, you will do the best you can for Micah.