Posts Tagged by Early Intervention
Burnout
| October 18, 2012 | Posted by Laura under E, Learning to Read, Special Education |
Over the summer, E had a two-week break in speech therapy when we traveled to Boston for the CASANA Conference. When we started up again, one of her speech therapists was still on vacation so it was an entire month before we got back onto our regular schedule. I thought the break would help E, that she would be refreshed. Instead, it was like she’d had a taste of freedom. She didn’t want to do speech therapy.
She’s verbal now and she was able to tell us that she didn’t want to go and that she wished she was like S and didn’t have to do speech all the time.
What I really wanted to tell her was, “I know honey. I don’t want you to have to go to speech anymore either.”
Instead I told her I was sorry and that she still had to go to speech. I understood that she was frustrated and tired but she’s made so much progress and will continue to make more progress. One day she won’t have to go to speech anymore.
When will that day be? Five years, ten years? To me it seems like a lifetime. To her it seems like eternity.
Her speech therapists were wonderful and switched things up a bit. They tried to give her more choices in therapy, tried to make things more fun. We pushed through the hump and are now on the other side for her. At least at the moment, she’s no longer complaining about speech therapy.
I, on the other hand, am starting to feel the effects of burnout. E attends preschool five days a week, a distance from our house, but the right school to meet her needs. She has speech therapy four times a week, twice in our home, once at preschool, and once nearly an hour away in one direction. She has OT twice a week and plays on a soccer time that practices twice a week. We’ve also recently added in a once a week session with a children’s counselor to work on her anxiety. I have two other kids and I work part-time. Most of E’s therapy is on the days I don’t work so my days off are spent driving, driving, and driving, or sitting in my car waiting, waiting, and waiting.
I’ve been doing this, we’ve been doing this, for nearly four years. I’m tired. I’m exhausted. I’m burned out.
I know that next year will be easier in some ways. Once she starts kindergarten, most, but not all, of her therapy will be during the school day. I will have less driving and waiting to do.
But I also know that next year begins learning to read – a potential problem that I am acutely aware of because of my job and my educational background. What we give up in speech therapy next year may be replaced with tutoring or educational therapy. The public school system is not set up to proactively address potential learning difficulties. Instead it addresses kids who are already failing.
One of the things I have learned from our experience is to be proactive with E. We are proactive with addressing her anxiety difficulties now rather than waiting for them to worsen. I am working with her at home on pre-reading skills in addition to her regular preschool curriculum. I notice the other day that she doesn’t know that Flag Salute. I downloaded it from iTunes so that we can listen to it over and over again in the car. She will need to be able to make a reasonable attempt at it next year in Kindergarten.
Being proactive is exhausting. I’m burned out but I don’t have a choice. I’ve got to push through the hump and hope I’ve still got enough energy when we get to the other side.
The Good, The Bad, and The Ugly
| March 3, 2012 | Posted by Laura under Celebrations, E, Early Intervention, Sensory Processing Disorder |
E’s first softball (t-ball) game was today.
The Good:
(Speech)
- No issues. She’s clear enough to give short answers and her sister is on the same team to translate if she says anything difficult for unfamiliar listeners to understand.
(Sensory)
- She wore the uniform without any complaints.
- She wore the pants that have two buttons and a zipper. (She usually can only handle loose elastic pants.) They were also 3/4 pants with elastic below the knee which she has never worn before.
- She wore the socks which were probably pretty uncomfortable because when we took them off they had made huge marks all over her legs.
- She wore her helmet (with a huge face guard).
(Socially)
- She played with her teammates the entire time that we were waiting around during Opening Day.
- Between waiting around for Opening Ceremonies and the game we were on the field for four and half hours. E was as well-behaved as any of the other kids on the team.
(Motor)
- E can throw the ball pretty well. She could not throw anything six months ago.
The Bad:
(Speech)
- Nothing.
(Sensory)
- Nothing.
(Socially)
- E played right field and spent most of the time with her back to the game or spinning. Frustrating for me but most likely due in large part to her age and immaturity. She is the youngest one on the team.
(Motor)
- E cannot swing a bat worth squat - let alone make contact with the ball on the t. We’ll have to work on the swinging motion first.
The Ugly:
(Speech)
- Nothing.
(Sensory)
- Nothing.
(Socially)
- Nothing.
(Motor)
- E did not want to (nor really understand how to) run the bases and only batted 1 1/2 times.
All and all, softball has been a good experience for her. She has a lot to work on but she has come a long way. She could not have handled all this sensory input even two months ago. She’s growing, maturing, and improving every day. Her favorite parts today were having everyone cheer for her at the end and getting juice and a snack after the game was over. Of course, I was a big stress ball the entire game because I was worried about how she would handle everything and about how others would react to her. She will earn a trophy at the end of the season but I think I deserve one too if I make it that long. 
And here’s the letter I sent off to her coaches tonight. Hopefully, someday I won’t have to write these kinds of things anymore.
——————————————————————————————————————————-
E has Childhood Apraxia of Speech. I wrote it on her registration forms but it is pretty rare and you’ve probably never heard of it before so I wanted to let you know a little about it. CAS is a neurological motor speech disorder. Her brain has a hard time controlling the muscles in her mouth. Her motor problems are very similar to a stroke victim. She has been in individual speech therapy two hours a week, eleven months a year, since she was twenty months old. She has come a long way but her speech disorder is why her speech sounds different. There are still quite a few sounds that she cannot say. If you are struggling to understand her, S is usually pretty good at translating.
E also has some other motor difficulties, particularly with her arms and hands. She just learned to throw in the last few months. Right now swinging is pretty much impossible for her. She has a hard time using her arms to cross her midline (moving her right arm to her left side and her left arm to her right side). She will get it eventually but where other kids might take five times of practicing to understand the concept of swinging, it may literally take E a thousand times. She has to build a muscle memory for each new motor movement she makes. We’re working on with this at home too but I just wanted to let you know why she is having such a hard time.
E is very aware of her disabilities and when things get too difficult for her she will shut down and say she doesn’t want to do it. We let her take breaks but we want her to keep working at it too. There is nothing the matter with her cognitive functioning and because she is so aware of her disabilities, we try not to talk about them in front of her. I haven’t had a chance to talk to you alone so I figured I would just email you instead.
She (and S) had a great time today. Thank you for coaching and managing the team. I’m sure all of the girls will have a great time this season.
Thanks,
Laura
