Sep 13, 2008

Adventures with Kristofer

I haven't posted anything lately of our adventures with Kristofer other than the ball he swallowed...that was just so much fun! (sarcastic here!) And just the other day he had a small lego in his mouth...what am I going to do with that boy?!?! (LOVE HIM!)

But for those that care to even know or even pray for us we are finally embarking on the last leg of this adventure with him. Or so we hope. At least to find out if he is or isn't autistic. Here is what I know for sure...he has SPD (sensory process disorder). Now here is something else I know - "Studies indicate that at least 80% of children with autistic spectrum disorders also have SPD. This means a lot of kids with Autism have behaviors that are seen in "sensational" kids. But the reverse is not true: Only a fraction of kids with SPD also have Autism. None of the sensory symptoms of SPD are part of the diagnosis for Autistic Spectrum Disorder."(according to Lucy Jane Miller, PHD - leading researcher of SPD). Did that make since?

This is why we want to make sure we are not dealing with just one thing. If we are great! But if we are also dealing with autism or some where on the spectrum then we need to know. We have been trying for 3 years to get someone to tell us yes or no. We started with behavioral therapy which to be honest did nothing for him, more for me learning how to deal with some issues he was having a the time and still has. Then we started OT and that is where we first got the SPD diagnosis. Kristofer deals with sensory seeking issues (most of the time) but he also deals with sensory defensiveness. He goes from needing as much input to a major over load and we need to just sit in a quiet room hugging him tight to get him to calm down. It really depends on what is going on at the time as to how he will respond. He has major auditory defensive issues. When he was 3-4 he would turn the tv as loud as he could and would say he still couldn't hear it (his hearing was fine according to testing). Other times he would turn it down so low we couldn't hear it and yet it was too loud for him. Now, he still has issues but has managed to get through the too loud and too soft issues with the tv.

He still has issues with noise of any kind. There is not a moment that goes by that he will have one or both ears covered. During our praise time at church he would much rather be in his daddy's office, in the nursery or sitting in my lap with his fingers covering his ears. Now let me just share we only have a guitar and an electric guitar during that time. We need other musicians right now, we have the instruments but no one to play them. When we have had visitors that can play the instruments it really sends him into orbit. But he loves to play the drums. Usually with one hand and one in his ear.

Anyway, this Friday, the 19th, we will be heading to SIUC for the 2nd level of evaluations to determine if he is in fact dealing with autism or is somewhere on the spectrum. If you remember me writing about the first level assessment, it wasn't clear and they saw many traits and behaviors but not enough to say a definite yes. Thus the reason for the 2nd level eval.

To be honest when he was much younger I would have said yes without hesitation. In fact I did and kept asking our doctor to have him evaluated and it wasn't till 2 weeks before we moved here (after about a year of therapy and asking) did she say lets get a clearer picture of what is going on. Honestly at the time I wasn't emotionally or mentally ready to even think in that direction. I was happy with the SPD diagnosis. Ok yes, this is about him and not me. But during that time I was dealing with a 4/5 yr old as well as twin babies. I had so much on my plate the SPD was a relief and we were seeing HUGE improvements. OT and Speech therapy opened up a way for him and us to communicate and we were seeing big stuff.

Call me a bad parent for not changing doctors or not, I really don't care what you might think. To be honest at that time in our family's life things were a bit strained in every aspect. Did he fall through the cracks...NO! He was getting all the therapy available to him. For that I am thankful. Do I wish I had pushed harder for more evals...maybe but I can't change the past I can only change the future with God's leading.

So like I said we are heading to SIU this coming Friday. Because this is a research program it is free and I was told I should know a lot at the end of the evals if not everything. That would be the best. I believe this time is an appointed time. We will get clarity before we go into IEP meetings with the school in Nov. and that will help a lot!

Also thought I would share a sensory activity that we had a couple of weeks ago. So enjoy these pictures! They kids had a ball and we had a mess to clean up but it was great fun for them and I was amazed at how Kristofer responded to it. We received a package that had a ton of those wonderful foam popcorn pieces. You know the kind, they stick to everything and are hard to get rid of. Well the kids dumped them on the floor and started jumping in them, rolling in them, throwing them and were laughing hysterically. By the time they were tired of the game we had crushed foam pieces everywhere (for days) that we vaccumed up. It was the first time I didn't flip out to be honest. Which was a huge improvement for me. They had a blast and Kristofer benefited sensory wise! I am sure the other two enjoyed it just as much as he did.

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