In 2010 we finally got on the state waiver for disability services. For the first time in over a decade, Daniel got some help with his daily stuff from someone other than me. I know he needed a break from my tired old self, and I needed to rejuvenate so as not to become a complete slug.
So, we began to separate a little bit. I took a few weekend trips, always no more than two nights in a row. The caregiver told me that by that second morning he would start to crank up and let her know that he was ready to get back to his usual routine.
Last week we got a new care provider. It happened suddenly, but I guess it was time. Our new person is a bit, shall we say, lethargic? Mama's not diggin' it.
Tonight I started thinking about what it would be like if Daniel were just a little more well behaved when we're out so that having someone here isn't such a big necessity. After all, he's gone pretty much everywhere with me his whole life. In the very early years, I didn't care if he yelled in church, or squealed in restaurants. With time I did care. I just handled it.
I would take him out of whatever building we were in, walk with him, put him on my lap, massage the sides of his mouth (did this vigorously on an airplane a few years back when he was doing his Rebel Yell at the top of his lungs). But I always remained committed to having him included in almost everything we did. Movies, nights out to hear Rich play, swimming, parties, church, whatever.
My parents helped me in this. They don't lose patience with Daniel when he gets antsy and starts to loudly whine or let out a scream. It's easier for me to roll with it when they're around. Unfortunately, there's about 1,000 miles between us, so those times are not often enough.
Lately I've felt that I'm just done. I don't want to struggle with him in church or leave him sitting in a nursery at age 13, so I don't go anymore. I've gone out to fewer and fewer restaurants and public places with him. The other night we all went to a movie, and I tried everything to keep him happy until I just left early and sat in the car.
Tonight I talked to him for a long time as he was falling asleep. Edgar Cayce called it pre-sleep suggestion, and I've used it a few times on myself. Sort of a hypnotic kinda thing. I gently repeated over and over that he goes with me to public places and he's happy and quiet. I talked on about specific places and also threw in that he walks well when we go out together (he can walk, but prefers to be pushed in his wheelchair),
I don't want to drag him places that he doesn't enjoy, but I really think it's better for him to be out with us as he has been all of his life than to sit at home with a half-asleep body he's not related to (when I fall asleep it's different.) Yes, we need reliable help, but I don't want to feel so desperate to get away without him.
His sister thinks maybe it's part of being thirteen, and that all kids his age are pains in the ass. That's probably partially true. But we've been dealing with sudden outbursts of noise forever. It's like an alarm clock that goes off randomly. I think he can learn to control it with enough encouragement. Or maybe I'm just dreaming. Either way, it can't happen if we don't try.
Here's the video I made when he turned twelve. That boy is my heart. I want him to have a good life.
6 comments:
Lovely. I get it 100%.
Oh, the video made me weep. So much love.
I so understand your conflicts here and admit to taking Sophie out and about less and less as the years have gone by. She will be seventeen this Thursday and rarely goes out to eat anymore or to a movie -- the only places we all go to together are partly outside. I think I'll always feel conflicted about this, wondering whether it's better for her or not. Wondering whether she's happy or not.
We definitely adjust where and how often we go with Sev, but we still go as much as possible. Loud movies are the ones he goes too...he loves the loudness and he can be as loud as he wants. The others aren't for him. Malls...yes! He loves malls and there's no requirement for quiet. I think at the end of the day, reality is what it is and we just have to accept the limitations without giving in to the pressure to conform, kwim? Keep in mind that you do things without Melody as well and people hire babysitters all the time. It's OK to have adult times. Love you, C!
I so know what you're saying. Movies work for awhile; we have a cinema pub in Falmouth. Sensory overload in the form of "loud" make Adam spaz out of the wheelchair and we have left an unfinished beer and (?) too often. In a dining establishment, he has a 12 year old sense of humor (now 26) and always laughs hysterically at obese people in tight polyester where every roll is visibly pronounced. Can't take the boy anywhere where civilized behavior is an expectation, but then, who cares?
Sarah has some behaviors too sometimes when we go out, it's hard for me. She goes from 0 to 60 in about 5 seconds and then I have to remove her (she shrieks in anger when she doesn't want to be there). I'm curious to hear how your suggestions work for Daniel.
Sarah's rash remains the same tonight. She is sleeping very well so far :)
It's funny (or not, depending on your sense of humor), but the day after I tried the sleep suggestion, he caught my cold. My daughter said, "It's not wonder, mom, you were in there breathing all over him last night!"
He's also had his hands in his mouth constantly this week, so I switched to using positive affirmations like, "Daniel keeps his hands out of his mouth." I'll let you know how that goes!
Post a Comment