Time for a new plan!

It's time for a new plan. Superman did very well at the dinner that my BIL hosted. I could see him trying to hold it together during dinner. All those aspects of a simple family meal hammer away at his senses and he was constantly trying to block them out. Talking to his food, making constant noise with his mouth or his cutlery, moving his feet the entire time...to someone who's not aware of what SID is, it would appear that he has bad table manners, or maybe he can't sit still. But for Superman, his brain can't filter out various smells and sounds. So he tries to mask them himself with his own sounds and actions.

Everything went well until it was time to go. We were two steps away from the front door and he had a huge melt down. Normally, he can't be touched during moments like these because his brain registers that touch as being painful and he goes into fight or flight mode. But I knew, if I could just get him out the door, he would be fine. He needed me to do what his body couldn't do for himself. So I picked him up, took two steps out the front door and held him in a bear hug on my lap.

A bear hug is when you are behind a child and you take their arms in yours and wrap them around their body and hold them firmly. For children with SID this can be very soothing because it's a form of deep pressure which stimulates the brain.

Superman took a big breath in and instantly calmed down. So he sat on the front steps and looked for constellations while I packed up our things.

I knew that coming home past his bedtime was a recipe for disaster the next day and said as much to my husband. Sure enough, Monday morning was a disaster. He couldn't regulate himself and his EA, who normally can talk him down, was at a loss. Finally, his anxiety got the better of him and he threw up. They called me at 11am to come and pick him up. Poor little guy.

I'm now officially putting into a motion a new household rule. Any time we have to go out on a school night, we must be home by 6pm which gives Superman 90 mins to go through his normal nighttime routine and be in bed on time.

If parents don't advocate for their children, no one else will and we MUST be the ones to stand up for them and what we feel is in their best interest because they don't always have a voice. Sometimes it's hard to go against the grain. People who don't have much knowledge will feel that you're labelling your child but what they don't realize is that "label" is a title that gives you access into some amazing programs which will allow your child to reach his or her full potential.

Don't ever let anyone talk you out of going with your gut. Any time I have, I have been very very regretful.

The good news is that since Superman got an EA and has pull-out support, he's consistently having good days. I'm still anxious in the morning fearing a phone call, but that's only happened once since the EA was brought in and that was because he was sick. So that's great news!