Saturday, February 5, 2011

Pouring Out My Heart

Towards the end of last year I mentioned that we discovered our oldest was a special needs child.  I've been hesitant to talk much about it here as it is not the focus of this blog but I feel I need to share my story.  I might give updates occasionally but plan to not change the focus of the blog.  If I need to say more, I will probably start another blog.

S has been a tough child since birth.  He was a horrible sleeper, always needed someone to entertain him, and got into everything.  When I would mention this to people they would all say he was just a kid and would grow out of it or that he was my first and that was the problem.  

As he got older, the behaviors got worse.  He was significantly behind in speech so most people attributed the behavior to him not being able to communicate.  After several months of testing, we started him in speech therapy last January.

This whole time I had been talking to our preschool director at church.  I've known her for years and she has known S since he was born.  She is in charge of the preschool ministry for the church and weekday preschool, which he attended last year.  She knew we were having a tough time but had only seen a few of the behaviors at church.

The weekend after his 4th birthday last year, it all changed.  He hit his favorite Sunday School teacher.  We thought maybe he was just exhausted from having his birthday party the day before.  The next Sunday, he did it again.  The behaviors started coming out more and more.  With the church encouraging us, we went to our pediatrician for help.  He said we just needed to be tougher parents.  We told him that we weren't accepting that as an answer, we needed help before this child tore our family apart.

We were referred to a large behavior health facility in town.  Their screening was a joke and they put us in parent training therapy.  I knew this wasn't what we needed but I agreed to it because someone needed to see what my husband and I saw.  

We were blessed with the sweetest therapist who was an older lady and semi-retired.  After a few sessions she said we were passing with flying colors and doing great with the techniques she taught us but S was not catching on.  She agreed we needed more help but wasn't sure where to go.  She used her free time to ask around the building, contact our preschool minister and S's school teachers.  She stuck with us and kept doing therapy until we had a place to go.

We finally wound up getting an occupational therapy (OT) evaluation.  Through that, we discovered S had sensory issues, his upper body was very weak, he had attention problems, etc.  In August of last year, we began going to OT once a week. 

Due to all of this struggle, we opted to attend pre-K through the school system this year instead of at church.  We knew they had many great services that could benefit us.  As soon as school started we asked for more help for him.  After several months of evaluations (it is a very slow process) and talking to his speech therapist (also through the school system) we had a meeting to go over everything.

This meeting happened to be the day after my youngest had surgery.  I had barely slept in days and was an emotional basketcase.  I sat there for 1 1/2 hours hearing all of the issues my son was having.  I was practically in tears as I left because the part that stuck out was when they said S would not survive kindergarten without help.  

I won't go into all the details but to sum it up, they decided to start some OT and special ed with him.  Around Christmas I asked for an update and we changed things again as academically he was at the top of his class and didn't require the special ed services but did need help with social/emotional problems.  We changed up his services and that is where we are currently at. (Since writing this, I've learned we need to meet again as the school is not holding up their end of the deal).

This entire time we've been seeking a diagnosis.  He is a very bright child and can be so adorable when he wants to but the rest of the time he is extremely tough.  Most doctors do not want to diagnose until at least kindergarten as many behaviors correct themselves as the child ages.  

Our OT has been incredible and has talked with several doctors who agree we need a diagnosis now, not in another year.  The problem is that our insurance changed Feb. 1 and none of our current support team is covered.  We had two doctors who were willing to do the evaluation process but could not find an opening in their schedule (we've known of this change since Nov. and have been trying since then to get in).

We started over from square one this week .  We do not know a lot about our new pediatrician but we do know he has referred to our current therapy facility so that leads us to believe he is open to seeking help.  Most doctors in the area who will diagnose have a 3-6 month waiting list which is very frustrating when we've already been waiting so long.

We expect his diagnosis to be several actually.  Just a few possibilities that have been thrown out are ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder, and Gifted.

I've spent most of my free time this past year researching, talking to other parents, and chasing medical staff down.  I have high hopes for S and know once we get the proper therapies and medication he will be a much more enjoyable child.  Getting to that point is very difficult though.

I am not writing this post for sympathy, but rather to let you know why I've been fairly quiet on this blog lately.  Also, we believe God gave us S so we can minister to others in similar situations.  If you have a special needs child, we would love to talk to you.  It is a long and lonely road and we've been blessed by others who are much further down the road so we want to pay it forward.


Jenn said...

Thank you for sharing. This is not sympathy, just a note to let you know you are in my prayers. :)

ann said...

You are in my thoughts and prayers! I know you are challenged daily but your attitude is truly an inspiration with your perseverance and your hope to help others. I have a friend who has a child with challenges and she found this webssite helpful: I am not a paid endorser or anything just so you know. :) However, she has seen a tremendous difference in her child's actions by changing her diet. She did a more detailed food sensitivity test (since the child was not "allergic" under an allergist's tests) and she said it is a night and day difference. This may or may not help you but just wanted to let you know after reading this post. God Bless you!

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