It has been a while since we posted, but life, health, and work can get in the way of sharing. People might overshare on socials :). I have been traveling back to back weeks for work, and Monday night, Tina texted me a video of them going to the gym. She said he asked for you, which is such a great feeling. So, I asked him if he wanted to go to the mall before doing other errands. He was full of awesomeness and laughter. As we made a few laps, I, per the usual, talked while he gave occasional one-word answers. Our last stop was Barnes and Noble, where he picked the same book, time after glorious time. Corduroy is his book choice; he usually sits down, flips through the pages, and places the book back on the shelf. Yesterday, I sat beside him and asked, "Do you want me to read it to you?" He just repeated Corduroy, so I began reading the book. He intently looked at the book and photos and listened to the words. It was a day of a father and son connecting on a book about a bear with a missing button. However, I am always thinking about what happens when we can no longer care for him or if the world sees the incredible person we see. This means all of him the echolalia, stimming, and, at times, self-injurious behaviors?
We love our son and all the things, but we need to make sure people know that cool sons and daughters like Noah exist and will need care 24/7 for their lifetime. Yes, everyone at some point in their life will require 24/7 care, but Noah will need it for his life. What does this mean for our family? Here are just a few; feel free to add your own.
- It means that if we want to go anywhere as a couple, we must find care.
- We must have an emergency document in place if we are both going on a trip.
- It means a lack of primary care providers who understand his autism needs.
- He is often absent from research.
- People will often tell us, as his parents and families, what medical treatment he should have access to or that we shouldn't speak for him. Not medical professionals, random people either online or the very bold in real life :)
- If he wants to live outside of our home, he would need to have other roommates more often than not. We wouldn't ask that of others, but because of his level of needs, his choices are limited.
Certainly, I could continue to talk about how caregivers will quit their jobs due to
inadequate placements or how families have used their savings to start adult service programs. Alas, that is for another time! Please follow us for all things awesome.