Saturday, February 16, 2013

God is never "Stumped"

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jerimiah 29:11

If you are a parent of a child of a type of disability - whether physical, mental, or learning you may have had a similar experience to the one I had yesterday...if so, please know that I GET how you felt...I was there.

Let me give a bit of a background. Our Tyler's story is told here. The name Tyler means "Resourceful One" and he has definitely lived up to his name even from birth! Over the past three years we have been very aware of his deficiency in academics and especially so in reading. Tyler has literally just hit one road block after another in his journey to learn to read.

I will be honest and say that there is a part of me that doesn't want to share this part of his journey. I like to share the high points, the miracle moments, the times that he overcomes mountains and we are left in awe! Yet, as I reflected back on yesterday, I felt in my heart that just maybe somewhere out there was another mom who needed to know that she's not alone. That someone understands the heartache and the pain of wondering "Why" or "What's the answer?" So it is, with this in mind that I share this difficult part of Tyler's story (always with the hope that one day this too will be a mountain he has overcome).

Any child with hearing loss or impairment is going to have challenges in learning to read as so much of reading is associated with sound. However, in the majority of situations that can be overcome and taught through one of two methods - phonics  or more commonly sight words. Typically children with hearing loss do better with sight words as that is not dependant upon sound. When a child learns to read, teachers and parents know that they can read by their oral reading ability - if they read it correctly to you, you know that they can read.

With Tyler, this hasn't been the case. After several different approaches to learning, it has become evident that Tyler is reading very little. They have tried the phonetic approach on more than one occassion. They have tried the sight word approach with spurts of what seem like success only to go back to square one. One day he may know the simplist of words - the next, not so much. It's heart wrenching to see a child struggle over and over and over again trying to learn a skill that to many seems so basic.

Of course I have always been aware of Tyler's reading struggle...yet, as with any child with disabilities when you are faced with the stark reality of where they are at - there is a part of you that grieves inside for the child you long for them to be. This moment came for me yesterday at Tyler's annual ARD (Admission Review Dismissal) meeting (Individualized Education Plan - IEP for Colorado friends). We had met in December to discuss the possiblity of dyslexia and to approve testing and yesterday was the follow up meeting to discuss those results. Before I continue, let me say that I felt strongly that Tyler did not have dyslexia  but of course we had to officially eliminate it.

Going into the meeting, I kept praying "Lord, please do not let it be dyslexia" that is one more "diagnosis" for my little man that has had to face so much. I was in for a HUGE reality check. As the diagnostician began to go over Tyler's testing results - the reality began to hit. As always Tyler's case is far from standard or normal - as his very first Dr labled him he is "Tricky Tyler" Without going into great detail about the test results here are the conclusions that were made:

1.) Tyler DOES NOT have dyslexia.
2.) Tyler is still unable to read even the simplest of reading passages.
3.) Tyler struggles when breaking down words, or dropping of parts of a word.
4.) Tyler struggles with fluency - basically has none.
5.) Although unable to read - Tyler did exceptionally well when asked comprehension questions based on a passage that he failed to read. (I will come back to this in a moment)

Through the meeting the number one concern was: Tyler can't read and we need to figure out a way to help him. Of course, I KNEW this but to hear it verbally said just broke my heart...something about hearing the reality that your almost 12 year old son who has no mental disability, is not autistic, and for all practical purposes should be reading by now and isn't - well it pretty much HURTS!!!

Please don't misunderstand - I want to know EVERYTHING about his education and I strongly believe that parents of children with disabilities need to be actively involved in every part of their education, but hearing it can be like being stabbed again and again with the hard realities. On top of the obvious problem of reading there were the stories from his teachers about his frustration in reading. Like when his teacher tried to direct him away from a large chapter book he wanted to some simpler books that he would have a better chance to read and he replied "Well, I can't read the big book and I can't read the little book so why does it matter which book I get?" Heartbreaking for the teacher AND for me!

Harder still? To look around a room filled with professionals with combined education of over 30 years and to have them ALL say - we have not seen a case like this. We don't understand it. Back to #5 above - Tyler seriously answered the majority of the comprehension questions without having officially "read" the passage. The conclusions: either he is REALLY good at guessing (at which I was told to hit Vegas with him when he is 21 - HA HA!) or perhaps he can read and can't orally convey that. The trouble with the second option is that he has NEVER demonstrated the ability to read aloud at a level that would match with the comprehension. Now, when you read TO him - yes, he gets it but not reading it independantly.
I specifically asked the Audio Impaired specialist if she had seen this in any other hearing impaired child - she said "No, never. They typically can read through sight words."

I am thankful that not ONE person in that room is willing to just give up. They are going to be trying a third method of reading with him beginning this coming Tuesday. There is no guarantee that it will work but at this point, he has nothing to loose and everything to gain.

However, as I got into my car to leave the meeting - my eyes filled with tears and I just cried...."Why God? Why does he have to have any more challenges? He already has a hearing loss, a speech impairment, struggles to learn in general. Why does he have to be a case that no one has seen before? Why can't it just be an easy fix this one time?" and then yes, I had this thought...remember me saying "Lord please don't let it be dyslexia"? I cried "Lord, why COULDN'T it have just been dyslexia?" Yep...typical cry to the Lord. He answered my first prayer and yet I still complained! Go figure...

As the sting began to wear off and I was able to vent to my AMAZING sister-in-law...I once again just had to smile. My little "resourceful one" has been VERY resourceful! He has managed to learn math with a calculator, he is smart enough to ask his peers for help on school work so that he can get it done without reading, he knows how to manuever someone into reading to him, and he has even learned to proficiently read lips!!! More than this though - God has reminded me that in spite of "stumping" his teachers and educational professionals - GOD IS NOT STUMPED!

Not one part of Tyler's story has surprised or taken God of fact GOD PLANNED IT! Jeremiah 29:11 - "I know the plans I have for you....plans to prosper give you a future and a hope!" AMEN!!! God has a plan for Tyler's life!!! In MY plans, Tyler can read fluidly and is successful academically but the reality is that may or may not be a part of GOD'S plan for Tyler and I need to trust that. If Tyler never really learns to read, I need to accept that as a part of the story God has for him.

As any parent with a special needs child must do - I need to focus on what Tyler CAN do and who God has created him to be.

* He CAN love unconditionally those around him.
* He CAN help with a servant's heart any who will allow him
* He CAN learn visually and through hands-on-experience
* He CAN love and laugh through every part of life and express a care-free attitude that I am in awe of

I don't know where Tyler's journey will take him or what the rest of his story looks like - but God does and I can rest in the knowledge that GOD IS NOT STUMPED!!!! Praise the Lord!!!

My prayer and my hope is that maybe somewhere there is another parent of a child with a disability who needs to know that - God is not stumped. Doctors, Teachers, Diagnosticians, Counselors may not have the answer but you can rest in the knowledge that GOD KNOWS THE PLANS he has for your child...hold on to that truth. If you need someone who can listen with a heart that understands....
please e-mail me, I am here for you!