Our lives feel so much different in the past year, like we are finally settling in to our "normal" and I am finally feeling like a mom in addition to a nurse / executive assistant. I kinda like it. Mostly because when I lift him up from his chair his arm goes around my neck and it feels like a hug :)
The Harrison I Randall suite has been life changing. Carrying this child up and down the stairs every day and lifting him in and out of a tub feels like a lifetime ago. And as much as I hate driving this behemoth of a wheelchair accessible minivan (which I swore up and down I would never do), it has been a life saver- well, a back saver. The thing is huge, way too huge for me to maneuver (as evidenced by all of the scratches on the front ends and the side mirror which I have taken off 3 times...) but, a necessary evil. I'm very grateful.
Speaking of being grateful... I have read that being grateful makes your brain feel happy, can lift you out of a funk. I agree. I do have a lot to be grateful for, and it has definitely kept me positive. Grateful for this amazing school. Grateful for his stable health. Grateful for his hard work (which is why he passes out at the end of the school day). Grateful for his developmental progress. Grateful for his solid friendships. Grateful he has finally been given a voice. He takes so much advantage of the communication devices and tools they give him at school- I've posted part of his Progress Report below, so you'll see what I mean.
His teacher Miss Kara is an angel,
And the progress Harry has made- so proud! We are so proud! And he is so proud of himself! His teacher summarizes it much better than I can...
Here's something cool. I never thought this kid would be toilet trained, yet he consistently signs that he needs the toilet, even holds it in when we are out because he would much rather use the bathroom than sit in a soiled diaper (can ya blame him?). It's amazing! And when he is ready, he uses his voice to call me in, and then he uses his Yes and No buttons to tell me if he is finished, although he has realized his toilet/shower chair is the best seat in the house
Communication at home has improved as well, which is a big factor in our feeling settled. I have always had a hard time communicating with Harry at home, but I'm working on it. We are both so used to my anticipating his needs and quickly reading his thoughts and feelings, it's a big adjustment to suddenly ask him to actually tell me. I think he appreciates the effort. See, when I bring out the iPad to use a communication tool, he shuts down because it feels like work, and at home he would rather just chill and cuddle (can't complain about that, not many 11 year old boys want to cuddle with Mom- something for my silver linings playbook). I have met with his speech therapist, attended a parent session about augmentative communication, observed his speech therapy session. I want him to know that communication at home is not meant to be work, but rather a way to make all of our lives easier. One of the speech therapists is going to come to our house to help us get into a routine of using his device at home, in particular, an app called ProLoQuo. It's a great app, and I understand how it works, I just need help becoming fluent with it like they are at school. Harry and I talk about this often, and bless him for having so much patience with Mom who is soooo out of touch with the times!
I think Harrison is also giving me a break because I am doing my best to be more "present" with him. I admit it is easy to slack off after so many one-way conversations, and the occasional developmental setbacks that can be so disappointing. Meals, for example. For the last few years he has been very inconsistent with eating food. After a belly issue he kind of lost interest, and with that, his oral motor skills. Dinnertime was our time together, and it just kind of stopped, and that makes me sad. We have continued to practice almost every day, but the regression has been frustrating and I began giving up way too easily. Lately, though, I am doing my best to be more patient and fun at snack time, and, as I have been advised, just enjoy the quality time together, and if he eats, great; if not, not a big deal. New routine. Gotta be flexible.
I try to be more present with him in general, actually. More time giving him 100% of my attention. He definitely seems to like me more, maybe this is why I get those hugs! And so goes the dance, I make him happy, he lets me know it, and that makes me happy...
All of this might also be related to the fact that he is just growing up. He has grown up so much at school this past year, and at Hebrew School (where, can you believe it, he really is learning to identify Hebrew letters and sounds!) too. He is treated like a big boy, and he feels like a big boy. I notice this every so often, and it hit me again the other day. We went to the barber for his haircut. I have always sat in the barber chair with him in my lap, but he is getting heavy. I decided it was time for him to just stay in his wheelchair as long as the barber didn't mind bending down a little. He was so happy, so well behaved, so giggly- I'm sorry I didn't get a picture, I was just so pleased I couldn't take my eyes off of him! Next time. It was so much easier for everyone, and quick too. Handsome, huh?
Now that school is out, we relax for a week, then go to day camp for a week, and then to summer school. He will be busy, and sweaty, and exhausted, and happy. What more could I want?
