Saturday, May 29, 2010

Blog Carnival, topic :SPD Sensory Processing Disorder

This is a short video by Rick Dancer -- a great guy who used to report the news, -- he even interviewed me once-- Rick is a great voice for the special needs community~ he understands the fine line between being Politically Correct, and being thoughtless with our words.

There is SO much more to Rick-- pop over to his sites and watch more videos and read his words :)

The kids and I survived yesterday-- it was grocery day and they were both home from school-- although Shane could have done a better job of listening-- there weren't any huge meltdowns -- and I think I got a good majority of the things on my list!

WOW! Color me impressed!

So, Hartley-- over at Hartley's Life with Three Boys is having a blog carnival --

and the Topic : Sensory Processing Disorder

Shane has not yet been called retarded-- and although we do get some looks when we go out-- we have,so far avoided the~ in your face comments. Recently, when I picked Shane up from school -- we had to walk his laptop back to the regular classroom- where all the kids were getting ready to leave the classroom. Shane asked and received permission to hug one of his friends' -- It was bittersweet to see Shane and all the other kids interacting-- he was bumping and crashing-- but the kids were stepping out of the way so that they wouldn't get knocked over. What broke my heart-- was when I tried to get Shane to let go of the hug and walk out of the room.-- Shane wanted to be with all the other kids and just .... "be normal" -- I was trying to explain that we needed to walk out- before the other kids started to fill the hallways.

Corralling Shane when the hallways are full of kids is futile.

Shane just doesn't get the vague social cues of the other kids-- he doesn't realize that although they like him-- he can at times be a little too much. He is getting help with gaining these social skills --but because social issues are so grey-and not black and white- it's a tough topic to help Shane learn.

Oh, how I wish that this part of Sensory Processing Disorder would GO AWAY. --- I can handle dealing with the need for compression, I can handle it when he needs a break, but the hardest thing for my about SPD-- is when Shane realizes that he is not in fact, normal or typical--.

I keep trying to tell Shane (and myself)

he is normal and typical for a kid with SPD.

I guess that my biggest struggle with having a diagnosis of SPD-- is this grey area between normal and not-- Shane can often look typical-- but then when he is near a meltdown- or in need of some sensory input-- that's when he looks different. Different is the part that gives you the lump in your throat that makes it hard to swallow.~ it makes you feel like you haven't done enough parenting with skill-- or like you haven't been aware of Shane's cues for a break-- or for more or less sensory input.

I know that Shane only has SPD...

but -- sometimes I just wanna stomp my foot and say -- HE ONLY HAS SPD....

Then, I stop and breathe-- many other smart,sweet,magical kiddo's have more than just that silly acronym SPD--(they seem to be dealing with all their kids' diagnosis with skill, attention to detail and grace-- look at them-- they aren't-even breaking a sweat!)

Why can't I just manage this? Why can't I just realize this is our normal and get used to it?

Why do I, want normal so badly? Why do I feel the need to compete with what I see?

Lord, I just pray for more GRACE --


Marvelous Mommy said...

Aw poor guy. What's normal anyway!! I know how you're feeling. My daughter has a large hemangioma on her head and I get strange looks all the time. I often just put a hat on her just so I don't have to deal with other people.

I know your situation is completely different than mine but I understand where you're coming from.

Anonymous said...

Hey Stace! I remember those days and I gotta say now that my son is 24 I still feel alot of that when we go somewhere together. While he is not going to have a meltdown at this point we get the strangest looks because of his odd behavior. I feel myself restraining from making explanations to strangers while still telling myself to act like everything is just fine so that he won't notice that I notice especially that other people are trying to refrain from staring. It's not that he looks weird but it is so obvious that he does not conform. Fortunately we live in Eugene so there is alot of that but I kind of hope he never moves away from here because I can't imagine him figuring out what any social norms are anywhere else either. It is painful to see him as an adult without a clue while he sees himself as totally aware and more so than others. Go figure! He is so smart and talented and yet and yet.....! You are doing wonderful Stacey. He will appreciate what a great job you've done as his mom. I promise! I have a feeling you will be very proud of him as well. I see so much in your children and so many possibilities for their future. If you didn't feel the way you do I would wonder about you but instead I know how much you really love them. You can't help the way you feel and you are handling it in the best of ways. Talk to you soon my friend! All my love and support. Me

missykade said...


You sound very wise and lovely. I hope to be on here in a few years giving the same wonderful stories and advice.

Anonymous said...

You sound like you are still grieving his diagnosis - or at least are in a grief mode with this post.

Your prayers will be answered - you will receive the grace you request.

He will mature, the issues will change, but he will not always be just like he is now. Barbara