If you are the parent of a child with special needs, desperate for some respite, I have JUST the place for you.
If you are not the parent of a child with special needs, desperate for some respite, this place is perfect for you too. Can’t you just picture yourself sitting there, sea breeze gently rustling your hair, toes gradually embedding ever so slowly in the sand with the peace and tranquility of the waves washing all your cares away?
Inspite of all the hurdles this kid has to jump over (or knock down), Josiah is incredible and most often he has a smile on his face. Few things make him as happy as food. Here is what he ate for breakfast this morning:
8 scrambled eggs with sauteed green onions and spinach
4 bowls of oatmeal with 2 bananas and almond milk
jello
16 oz of water
Josiah has lots of little ulcers in his esophogus that apprently have been there for quite some time. He also has reflux. That’s what the GI Dr. told us yesterday in the hospital. That may explain why the boy hits himself in the head and pulls his hair or my hair or anyone who happens to be in the hair pulling vicinity’s hair.
But maybe it doesn’t.
This non verbal stuff stinks. If he could just talk and tell us what hurts, it would be so helpful.
Since he can’t, we guess. We do our best to make an educated guess based on data we collect. But in the end, it’s all just a guess.
I would have NEVER suspected ulcers or reflux. Never. Josiah eats really well. He eats quite a bit of food at most every sitting and he loves everything and anything you put in front of him. Shouldn’t he be a more picky eater if certain foods cause pain going down or coming back up?
Recently we took Josiah to an Astro’s baseball game. Knowing he may last only an inning or two, we ventured out, wheel chair in tow and caregiver along for the fun.
Josiah did unbelievably great at the game. We set him up in a large open space above the general seating area where wheel chairs park. We didn’t have wheel chair tickets. Some friends were there with their kids and generously made room for us. What a brilliant plan to sit there.
Josiah was able to take in all of the action while not feeling confined by too many people sitting too close to him. There was no shoe throwing, no shirt throwing and definitely no chewed up, spit out hot dog throwing (which we have experienced with him at other professional sporting events) He simply sat and stared at the bright stadium lights, seemingly content with it all.
I had exactly 30 minutes to get into Kohls, over to the Customer Service desk to have a security tag removed from a bathing suit and back out to the van to make it to an appointment across town. Sounds easy enough.
Except, I had Josiah with me.
I almost didn’t go. Josiah doesn’t like getting out of the van, not even to come back into the house. Why did I think he would be agreeable to racing through a department store? I have no idea. It just seemed, in that moment, like a good plan.
I pulled up to the closest spot near the entrance, opened Josiah’s door and attempted to put his shoes on him. He pulled his feet away. I grabbed his backpack. He threw it down. I tried to unbuckle his seat belt. He refused to budge.
Not exactly the scenario I had envisioned.
