I feel let down a bit by his school that schedules this yearly "Fun in the Sun Day. " To me a more apt description would be: chaotic, loosely organized, mess in the parking lot. James has serious transition issues. He has come a LONG LONG way but he is far from conquering this demon. Now James can usually survive an event with prior explanations and descriptions. But quick changes from activity to activity spells disaster. SO rather calming my eventually confused and hysterical kid and spending the remainder of the day reading books in the classroom (like the past two years), I kept him out. He was able to do some make-up session at his sensory gym and we had a visit from traveling friends from California. After James long illness, I felt he needed more structure then that school day would provide.
I also feel let down by his sensory gym that slowly changed his afternoon speech schedule from 3 to 3:15 to 3:30 to 3:45. Today when I was told 4:15, I said, I am sorry we can't make that time, please cancel for me. Then I felt like crap. He desperately needs speech therapy. He is working and working well for his current therapist. But I pick him up from school at 2:30, in a half hour we can be home but we would have to leave again in another 30 minutes. James likes to take a walk or play ball after school. Then he has a snack. Then - hopefully - he will poop. By 6, the bath is drawn. Daddy comes home, time for homework (if any), a movie and dinner. If the routine is not followed, if he is rushed, James does not poop. When he doesn't poop, sleep is hindered, either waking in the night or extraordinarily early, and the next day's school/therapy is seriously hampered. It took six and a half years to get James to sleep through the night. It took a year to get James to pee/poop in his pull-up after the disastrous 30 min schedule that made him hold his urine until he was in bed and need suppositories to poop. I know he is seven but, developmentally, he is a baby. So the gym just called. James appointment is 3:45. I'll take it, but, am still sad.
The third downer I am experiencing involves observations I made this week. As James grows older it is something that I have become increasingly aware. I am so used to rude people staring or making inappropriate comments, that I sometimes get it a mind set of "us" and "them." But it is far worse. What I see is the prejudice coming from kids with disabilities toward those with a greater degree of disability. I know all kids want to fit in and cliques are a part of life. Unfortunately, I see this happen during times of adult supervision. I see therapists and parents condone the kids actions and words.
From a child with physical disabilities:
Why can't she speak? Oh she has problems. Yeah, she's stupid. Silence from the father.
From a child with sensory issues (who could not put on his socks and shoes) about an older child who was making unusual humming noises (as he quickly donned his socks and shoes):
Why is he making those noises? Oh. he can't talk. He's weird - everybody talks. Silence from the therapist.
I guess I am especially saddened by the lack of direction from the authority figures. Especially when these figures would be quick to correct an inappropriate behavior from my son. Well, these are inappropriate attitudes. How can we ever expect to join society when acceptance among those - also on the spectrum - is so divided? Sigh. Seriously, what am I thinking? Direction from grown ups? We are constantly choosing sides. Relationships, not to mention countries, are irrevocably torn over sports, politics, and religion. Thank God James doesn't understand prejudice. I wish we could follow his example on this one.
