Thursday, June 21, 2012

Info to Share

A few weeks ago, I shared Arron's story. I want to add some things to it...

The day before I had to meet with his speech therapist to talk about her initial evaluation of him, I was filled with all kinds of thoughts and emotions. I feared that she would bring up the dreaded "A" word or worst yet confirm my suppressed fear that he was autistic...

Now hear me out on this. I worked first hand for an after school program that was not special needs friendly. Our defensive for kicking out special needs children was that we were a "group orientated" environment and if the child could not be supported in a "group" then our program was not a fit for them. Over and over I sat in weekly meetings and hear my colleagues talk about the "autistic" kid or better yet, "that autistic kid's mom". The child was never referred to by name, no, only as the autistic kid and it was never in good conversation. I arranged for a special education teacher to come out a train our staff on autism and best practices for working with children with autism. Any way, case in point was that I saw how kids with autism were treated and it wasn't always good. So when I heard that Arron was showing autistic like characteristics, I died. I didn't want him to have something that would cause people to label him or judge him. Life is hard enough as it is, I didn't want something added to that to make life more of a burden for him.

So, not that you know where I stood, let me tell you where I stand. The night before meeting with the speech therapist I did something I had avoided like the flu. I googled autism...

I came across a website called Autism Speaks. I wish I had seen this website a long time ago. There are some signs that would indicate Arron as having autism. I didn't ball up an cry like I did when I first heard about him showing signs. I keep looking around the website. I found a tab labeled PDD-NOS, which is what the neurologist diagnosed Arron with two years ago, but is primary doctor changed to speech and social adaptive delay.

Here is where so much changed. I saw a video of a young college student named Kerry. I was blown away when I heard him speak, so much so that I cried. He was diagnosed with PDD-NOS when he was four and he is currently a graduate student and an advocate for those with autism. Two years ago the neurologist didn't give us much hope for Arron's future. When I saw Kerry talking so well and taking a stand to be a voice for others, I was given a tangible hope.

I'm not sure exactly what God is planning for Arron or for myself, but I trust that it is something great. You see a long while back, before this whole thing, I was walking to my car having come from one of my social work classes. I asked God, what will I be an advocate for? He responded, AUTISM. In my earthly way, I interpreted this as in the current moment and current situation I was in. So long story short, I changed the way people at work addressed children with autism and other things. Then here comes Arron's diagnosis. I fought this diagnosis with all that I had. Call it denial, but I refused for my son to have autism. I prayed day and night for God to work in Arron and I saw and still see God working in Arron. Then a few months ago I saw an episode of Extreme Makeover Home Edition where the family had a son with autism. This child was very talkative and functioned like a normal child. I felt the warmth of God embrace me and come over me with such a peace assuring me that it was okay to let someone say that Arron had autism. When I felt this I turned into a stubborn mule, shut off the TV and refused to accept what God was telling me. Now fast forward with me to today...

...So here is what I've come to understand...
the Word that has the ultimate life and truth is God's word and God's word promises that he makes all things work together for our good. I know that we live in a broken world and are susceptible to brokenness, but we don't have to stay living in brokenness. God will make us whole. I will walk in faith, trusting that God is always with us, He will never abandon us. I will go down this road that God is leading us down, I will stop being a stubborn mule. I see God at work in Arron everyday. I prayed that as we went down this road that God would put the right people, positive people, in our path. Believe me when I say that I didn't expect God to literally give me angels. One case manager that I talked to is named Gloria Angel and Arron's volunteer at basketball, well his name, can you guess?...ANGEL!

So what does Arron have? His official diagnosis is speech an social adaptive delay. I would agree that he shows some characteristics of autism and that working on those characteristics is helping.
Arron has quite a number of speech and social delays. His speech therapist also wants him to be evaluated by an occupational therapist to see if he may have sensory processing disorder, where there is a delay or over sensitivity to how his senses respond to the environment or stimuli. The things that the speech therapist has asked us to implement to help with Arron are working great. I see progress, in progress.

What I want you to know/understand about Arron:
  • He talks about Jesus...a lot
  • He started playing basketball today with Kinetic Kids and LOVED it
  • He understands you, but has a hard time making conversation
  • Sometimes we have to repeat directions to him or kindly get his attention
  • Love and Patience are greatly appreciated :-)
  • He has a HUGE heart and doesn't have a mean bone in his body
  • He is a very visual learner
  • He LOVES blueberries and strawberries as well as Pete the Cat
  • He gets really nervous in social situations
  • He gets nervous if he is in a loud place, so he'll cover his ears
  • He is a super smart dude
  • He is seeing a speech therapist and will soon be seeing an occupational therapist
  • He enjoys golf, music, playing with water, basketball and playing Tony Hawk on the 360
  • He is working on making eye contact with people
  • He falls under the category "special needs" or "child with a disability"
  • He doesn't know that he falls under the above mentioned category because we focus on his capabilities
Thank you for taking the time to read this, I had a lot to share. Please understand that I'm sharing a piece of my heart, which has undergone much transformation.

PS- If you have been considering a worthy charity to donate to, please look into Kinetic Kids. They offer scholarships for families who are unable to pay the full amount for the classes. We are thankful recipients of a scholarship. They believe in not turning away a child due to an inability to pay.

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