We are starting to get some consistent feedback on Spence. I checked with the staff to see how he reacted to our visit last week. I wanted to know if he was agitated at all. I needed to know that he is still going to make it.The word I am getting every time is that he is more than fine. He plays his games, he watches his shows in his room and when he wants some other interaction he goes out into the living room and sits on an aide. They all know what to do when they get the directive: "tickle....pweez"!
So far, it sounds exactly like how he was at home. Indifferent...occupied....and easily entertained. Every once in a while he asks for "car please" and even that is consistent with his behavior at home.
One more good thing is that the aides are quick to tell me how much easier he is to deal with compared with the other kids in the home. Not sure where that comes from or if they are just saying that to make me feel better. My hope is that all those thousands of hours of therapy to teach him how to entertain himself paid off. He knows what to do to keep himself occupied. I'm sure he still gets frustrated. No one is fessing up to him having any tantrums....yet.
All of this is music to my ears. I dread calling still. I avoid calling and marinate in a toxic swill of guilt because I'm just so sensitive about it. But little by little I am getting used to it. I'm starting to enjoy the simple things during the day now with a smile rather than chagrin. Stuff like: being able to keep handsoap by the sink. Not having to keep the front door locked, sleeping in until 7, playing a board game with the family.(BTW, last night during our first Scrabble game, DJ looked up beaming and said: wow, it sure is quiet......and the house doesn't stink anymore either.)
I still get hit with terrible sadness a couple times a day. But I'm building up a tolerance. The more things that I do to relax and take good care of myself, the more it helps me let go of the stress. The reality of all the work we have done still hits me hard in the face.
Every phone call helps to confirm that our efforts were not in vain. Even though he can't be home with us.....he has a happy life and the people around him enjoy his company. Touchdown...Team Skoy
2 comments:
This is music to my virtual ears! I'm so glad to hear that Spence is showing off all the skills you gave him through your hard work. Sounds like he's flourishing, and so is the rest of your family. No need for guilt, Mom! You've done the best thing for all of you.
"being able to keep hand soap" that is soooo my house too! Sleeping stress free, being able to go out in the car wherever and whenever you want, I will also add.. It sounds like the hardest part to this is over..he's happy and doing well, and I don't think the teacher would tell you anything that wasn't true, good schools need to keep a record of their students and their behaviors, etc..
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