Wednesday, May 28, 2008

Daily Struggles With SPD

Every time I talk to a certain someone lately she makes light of Zach's SPD - she has told me how her and her friend were laughing about it because you can find just about anyone who has some sensory issues (no kidding (please note my sarcasm), I myself gag a ton so one would say I have an oral sensory issue - but it doesn't stop my life or Doug only likes really soft things but has learned to tolerate rough when need be - still doesn't stop his life or Zoe who hates wearing clothes but knows she has to, again her life isn't stopped by any means - both could be told they have a tactile issues --- I'm sure anyone reading this can come up with their own sensory issues that bother them from time to time). I just needed to get this all out as it is one of the major daily Life's Struggles we face....

I want everyone to fully understand how different Zach is and that his SPD doesn't just kind-of affect him, it stops his life on a daily basis. At this point it is very, very hard to do things with him you would normally find relatively easy to do with other kids....

How very careful you have to be when you touch him - that if you touch him too light he gets scared, and pushes your hand away - almost as if he hates your touch, so you have to touch with a lot of pressure, but not too much or he cries at that too. This makes you feel so very rejected.

You can't be overly loud, or he shuts down, yet if it is too quiet there are times he hates that as well.

You can't just look at him, because if you do too much or in the wrong way he screams, puts his head down and leaves his own body. Forget about trying to get eye contact for longer then what Zach wants to do (which is normally none at all anyway) - you'll end up with out him for close to 5+ minutes.

A trip to the store isn't easy, or the pool, or the beach, or a doctors appointment, or even just the car ride. You have to judge when to go, and how to go about going. You have to be one step ahead of yourself or the trip will be an utter disaster. We've actually had to leave McDonald's because it over stimulated him and he wouldn't eat, he'd only look at the floor - the only hope of him eating was to leave. Yet the same McDonald's a different time he was fine.

If Zachary is put in the same situation from week to week and it is predictable (like going to the dance academy) he is fine, but change just one element and he won't be himself - such as the time one of his little friends wasn't there and he would only sit in my lap looking at the floor - no clue of what was around him, or the time all the Mom's had to go in the studio to help the girls change into their costumes - he walked in fine then realized all the noise, all of the commotion, and stopped - just stopped - stood in the middle of the room not a sound came out of him - he wouldn't move - he looked at the floor, until someone he trusted picked him up, then - he held her tight only looking at the floor head on her shoulder for the next 20 minutes. (this is the characteristics we were seeing when we thought he was having absence seizures)

Zachary can touch something once and be okay with it but the next time he can have a total melt down and you just never know when it will happen.

Monday during Zach's nap Zoe had taken the pillows off of the couch and made a bridge with them around the family room - when he woke up he was happy - that only lasted until he got into the family room and didn't understand what was going on - he threw himself on the floor and cried, when I picked him up he only looked at the ground - crying stopped but Zach wasn't there for over 10 minutes he could only be held tightly.

I don't think she realizes how much effort it takes on mine, Doug's, and Zoe's behalf of dealing with all of this, trying to catch things before they happen so he doesn't get lost, or have a meltdown, or totally disappear from us at any given moment. How hard all of this is to watch your baby go threw and not be able to help fast enough or helping but only making things worse for him.

This list can go on and on but I'll stop as I really need to get my day under way.

Thanks Steph - you made this possible to let me get this all out in the open!!! Love Ya!!!!

1 comment:

KoriG said...

Unfortunately, as you're learning, this is the life of a special needs mom.
Even in school, where everyone knows my students, I have to constantly remind them of the things they say and do....that sometimes when they expect a's not gonna happen, and that there are some things they just can't say or do!
I'm sorry you're frustrated. I know how hard it has been for you to accept all of this yourself, and now to have to constantly fight for his acceptance in other places is adding insult to injury.