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April 8, 2009

New Joel Updates

Joel is still Joel, but we are starting to make some sense of all of the issues. He has a dermatology appointment coming up for his mysterious rashes that he has 4/5 days a week and no lotion or Rx. cream has taken care of it. This rash is still a mystery.

He's being tested for Sensory Processing Disorder. This is good...we have a lead on a diagnoses, and he actually fits this mold. Autism was not a perfect fit for Joel, though SPD is on the spectrum...and he may very well still have mild Autism. My point is that he does not fit the typical Autism mold. Not yet anyway. SPD....he fits into PERFECTLY. When the therapist brought it up I was like..."hmmmm....wow. I guess that makes a lot of sense!"

If that's what it is, and he's NOT diagnosed yet...then he has a fairly severe case. EVERYTHING overloads Joel's system.

1. Temperature. From his food, to his bath water, to his clothing....everything has to be the perfect temperature. Tepid. If it's too hot or too cold (for him) he loses it. Completely and totally loses it. This is probably what set the therapist off for SPD to begin with.

2. He arches his back away from us when we try to hold him....screaming all the while.

3. He gets upset when there is more than one familiar person in the room. This has not made sense until recently. I was thinking that having affection for more than one person may overload his senses. He breaks down screaming for hours when Josh and I are in a room with him together. When we are alone with him....he's fine. He's happy go-lucky with strangers.

4. He does not like certian fabrics. He will wear fleece sleepers, and cotton, but if we put him in denim, or anything that has a different texture to it...it's just too much for him. He only likes very soft clothing.

5. He HATES having his face (espically his nose) touched in ANY way. (Mommy is the exception. I am aloud to touch his face gently, but I am not alowed to touch his nose. If you touch his nose...it's screaming time!)

The other thing we have decided to do is ask for a ear, nose, and throat doctor to look at his ears. I plan on taking video of him screaming, only so you can hear the odd cry he has. He sounds muffled....and I am wondering if he is hearing things differently than we do. I am curious if he has fluid build up that my family physician is not seeing. I just want to rule it all out.

I want Joel to have the best shot possible. It's great that he is recieving Occupational Therapy already, and that we are catching these things early. It was really hard to have Joel tested and to realize that my 14 month old baby has the verbal/expressive communication skills of a 4 month old.

Well, that's what is going on with Mr. Joel. I will continue to keep you updated. For now it's just a continuous stream of doctors visits and therapy. I am looking forward to a diagnoses, because once I have that I can do research myself and find the very very very best course of action. Not only medically, but nutritionally, and what the family can do to help him.

Thanks for your Prayers. If you have a child with SPD I would love to hear your story.


2 comments:

Nicole O'Dell

Thanks for the update. I'll continue to be praying for you all!

mbduke

My son, Garrett has Sensory Integration Disorder. Click on the tag "Garrett" from my blog and read about some of his issues. My son is on the opposite end of the spectrum, he is a sensory seeker, not a sensory avoider like your son. Occupational Therapy has helped him a lot. Also, check out Neurosensory Centers of America (Google it). They are doctors trained to treat sensory issues from a medical perspective.

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