Calming down
G is downstairs playing with his afternoon PCA "K" and I can't imagine a summer without her. She is everything parents hope for in another set of hands. How she does it...it's honestly beyond me. All I can think is that she gets to go home. That she gets respite. But, not everyone has this type of extra adult help to step in not only care for him, but push him gently into a variety of activities so his entire summer is not Ipad.
It typically takes weeks to train and acclimate a new person. That sounds crazy, but there are just so many details. One of the largest one is speech. Understanding and learning what sounds are made and what they mean so we can meet his needs. Sometimes he is saying things that we are yet to understand fully. For example, lately he likes to say "Stay out of the fridge". He chirps on repeat for a few mins. If someone doesn't understand. He quiets down. If you repeat it back to him, he smiles and you say it back and forth. Scott and I clueless to why we are saying this, but we play along. Communication is communication, but if you were new...
Then behaviors. How to respond. How not to respond.
The house. Where to find this? How to do that? What about this? What about the g-tube? How about seizures? On and on it goes.
It took many weeks to fall into any level of rhythm. School felt like it came to a giant halt. I always feel lost in that transition. It's quiet and it's not. There are no longer hundreds of little people to say hello to and a large handful of adults to gossip with anymore. I private message people on Facebook. It's not the same. A small group of people float in and out of my house M-F. This gives me some sort of adult time, but it's by no means the same.
I float through a list of things I want to do and never feel I have time for and yet, it also feels like nothing is accomplished. I finally picked up a calendar so I could write down my goals and write down what I do so that this feeling goes away. It helped.
I make dinner and lunch plans to get out of the house. I clean something and yet the house always feels untidy. I dream of how to grow my business. I show houses to clients and sometimes meet with someone to list a property.
This is all so new and all so routine in the same breath. Grant is starting to kick and hit me. The rates are rising. I wonder what I provoke that makes him feel so unloving towards me. His SIB rates can be intense and frequent and compared to most...it's still A LOT, but it's not like it used to be. Sometimes food is an issue and sometimes it's not.
He seems to enjoy getting out of the house. We drive to the local bus garage and see the school buses. He still loves a cheeseburger from McDonalds. He loves grocery shopping, but his obsession with going to the store was at an all time high recently so we needed to stop to get some control. He would go every single day if we let him. Unfortunately he wants to do what he always has loved (which is look at the soda aisle and indecisively choose between "Dew" and Coke". Inevitability he will always have buyers regret with whatever he chooses as he ultimately wants both).
We have only gone swimming once. Our new to us pool has a hole. And I am happy to share we have gotten him back to loving his swing.
His treatments have gotten much better with the added caffeine. Mondays are sleepy. Sat and Sundays are "mommy/daddy days" as he says, which he loves the most and is typically pissed off on Tuesday-Friday that it's not a weekend. He finally has stopped worrying about school and I am not looking forward to sending him this fall as he has very ill feelings about it all.
It has calmed down. The wave of old feelings and fear that nothing had changed is behind us now. Finally a true gratitude that Grant is home. The fear of the unknown was over powering and scary. It took weeks to feel confident that a new chapter was here. Happy to say something good did come out of the very long stay out East.
