Sunday, July 5, 2015
While he screamed only once, he whined and protested the entire time. Maybe he was overly tired, maybe he was bored, maybe he remembered that he hates fireworks. I don't know. But this year wasn't as great for him as last year was. I'm kind of bummed. Two steps forward and ten back. Sensory challenges are so tricky. Just when you think you've made progress you realize you haven't. Noah met some new friends on our walk to the park and back before fireworks. And still his sensory gag was hard at work. The sight of new people or people anywhere near his home, his personal space, near his wheelchair or even those walking in front of him make him gag and throw up. Yet, we can take Noah out to some very public places; restaurants, the zoo and even travel anywhere with him and you may never see his trademark sensory gag reflex not even once! He's just his own person and we've just grown to accept that Noah just has likes and dislikes and things hat make him equally comfortable and uncomfortable. Sadly he isn't able to use words so his only cue to tell us something bugs him is to use his sensory gag/vomit reflex.
At least Noah's day was great up until fireworks. We played a bit outside. Noah loves to sit outside providing we can find shade for him from the sun. I'm still trying to work out a swing that is much too small for him and I know he misses it. I still hang it up from time to time, but squeezing him into it and knowing he's too tall for it now and I have to watch his head more - really makes it a bit discouraging for me. Here we are in the heart of summer months and there isn't the extra funds to play with to buy him a new one. It's not like going to ToysRUs for a $30 swing - he needs one that is more like $300. These special needs price tags are certainly a huge bummer. I still have to laugh at his county services telling me there are "typical" costs associated with raising a severely disabled child. They have no idea. There are no such things as normal costs. Nothing about Noah is typical. He can't sit, he can't walk, he can't talk, he can't self-feed or eat solid foods. All of that requires a lot of intervention, equipment, therapy and assistance.... and all of those elements needed for his daily living needs are hundreds if not thousands of dollars.
We did make it to Target because Noah was protesting laying on the floor, and I was surprised to find some new Minion toys that were suitable for Noah's physical abilities. Usually I am searching isles up and down several times and leave empty handed whenever I am hunting something for Noah to play with - because most things are not geared towards children with gross and fine motor challenges. But there it was, a minion touch flat piano and a minion button a tad smaller than his adapted BigMack Switch. I couldn't leave them in the store. We are counting our pennies like crazy. But I splurged and spent $15 on both. He hasn't been gifted with anything he could play with since Christmas - unless you count his jumbo coloring books that he shreds like crazy from the dollar store. It made his entire day (and I hope made up for the fact that he disliked the day's end finale of fireworks). It was really fun to watch him play - his way with something he could do. And when he is happy that high pitched squeal when something reaches his funny bone, is the coolest sound one could imagine.
Luke had a great time - he is always making sure Noah is taken care of. He made sure that Noah was wearing his 4th of July shirt, and that he had a glow stick just like he did. He is so incredibly thoughtful and Noah is of great importance to him. If I'm busy Luke will even go grab a switch toy out of Noah's closet and hold it up so Noah can activate the button while he holds Mr. Tumble up for Noah to see him. I pretend not to notice, but I do. Luke enjoys playing with Noah in their own way they are this sweet little team. Best buds.
We finished off the weekend with a trip to the Zoo (which is still Noah's favorite place after all these years). It was great because not a lot of people were there today, and it made it more enjoyable for Noah with less people around. However we are battling him overheating quickly and don't have either a cooling vest, or a stroller cooling pad for him. We use a mist fan, but it doesn't really do much to help him. He gets hot so quickly sitting in a microfiber based wheelchair, and not being able to self regulate temperature and Noah does not sweat like the rest of us. So although it's his favorite thing to do, and something we primarily can only do in summer months - we can't do it as much because of the heat.
"Life isn't always about fireworks. Your fireworks will come, and they'll fizzle out just as fast. Life's an experience, not a destination. All of us have the same destination, but not one of us has an identical experience." Marilyn Grey
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Posted by Noah's Miracle at 9:18 PM