I made this video today, based on actual conversations over the years.
Posts Tagged ‘ted’
Posted in commentary, disabilities, education, family, Film, Humor, kids, Parenting, personal, tagged advocacy, autism, children, kids, Parenting, PDD-NOS, ted, video on December 1, 2010| Leave a Comment »
My son started Camp Bee A Friend this week. This camp pairs off children on the autism spectrum with their typically developing peers, sharing the camp experience together. It’s not about therapy, academics, things like that, it is camp. Real camp with camp activities. Fishing and swimming and crafts and lunch and songs and games and sports and all the typical day camp stuff — something that kids on the spectrum, particularly ones like mine, don’t really get to experience.
Now, one of my fears with Ted is that he’d be alone when we were gone. That the only people who would be with him would be obligated to. Family members, and people who work with him. Maybe a roommate in an apartment or group home. It’s one of the things that makes me sad, the thought my son may never have a partner, a family, a social life. He’s still non verbal, and he doesn’t really notice other people a lot. He doesn’t interact, usually. And since there are a lot of things he doesn’t understand, what could he bring to the table, friendship-wise? This breaks my heart on a regular basis. I try not to think about it, because it makes me want to die inside.
Well, when he got on the bus to go to camp, another kid came by. He looked at the open doors, looked over the seats, and said, “I want to sit next to Ted!” I smiled, I made a pleasant remark to one of the staff members standing there (as well as continued to discuss how Ted doesn’t eat lunch) and left.
And then proceeded to cry the entire drive home.
Does it sound wrong for a mom to want her child to be ill?
If he was sick, then there would be a reason for what’s going on now. The crying, the screaming, the agitation, the misery, the sheer hopeless attitude he has right now.
If he isn’t sick, then it’s that random autism who knows what the hell is wrong now, and then it is back to specialists again. Psychiatrists and psychologists and developmental pediatricians and behaviorists and neurologists and it just goes to “I guess it’s the autism”. Which isn’t much of an answer at all, it might as well be, “I guess it’s because the sun is hot and water is wet and it is Sunday.”
So I hope he has a bug. Nothing bad, just maybe an upset stomach or stuffed nose or sore throat or something that will go away, and he’ll be back to his usual happy self again. Of course, since he is ‘non verbal’, I don’t know what hurts. His head, his heart, his eyes, his nose, his throat, his tummy, his ears, who knows?
No one WANTS their child sick, of course, but in our case, it beats the alternative.
They changed the pick up point for my youngest; he now gets picked up in front of the house, not across the street. So today I got to see him as the bus pulled away. He looked at me briefly as they buckled him in, and then looked straight ahead. The thing about a non verbal kid is it is harder to know what they are thinking — as if people weren’t vague enough about their thoughts. I wondered what he thinks about school. I know he seems to enjoy going. Does he have any idea at all what the purpose is? I’m really not sure, and leaning towards “no”. Every year the local newspaper, the Telegraph Herald asks the incoming kindergarten students what they want to be when they grow up. There are all sorts of answers. Ballerinas and cowboys and doctors and singers and dancers and mechanics and truck drivers and babysitters andteachers and astronauts and anything a little kid can imagine. I wonder what my son would answer, if he could. I know what I would want him to answer. Independent. And that is what life is like with a kid like mine. Your dreams change. Your expectations are in a sense lowered. (But raised because you are aware of how hard each task is.) When nothing but the finest schools and a doctorate in their chosen profession is just about shot down in flames when the prognosis is “I don’t know” for so many issues. It’s not so bad, really. Still, days like today, independence seems like such a great dream, but the thought that even independence may not be possible? That’s what can really hurt. By the way, his bus isn’t short, but it is chock full of kids who may face the same future as my son. Some more independent than others. Think about that the next time you make a ‘short bus’ joke. About the parents that put their kids on that bus, and take them off the bus, if you don’t have the decency to think about the children because you think of them as less than human. Think about me.
Ted finally got his very own Chatbox 40! We started off with just 24 symbols for now.
At first, he just kept pressing ‘pizza’ over and over. But after one session with his speech therapist, he got back into the swing of things. His therapy sessions, he used it effectively to communicate the few words we put on.
But the real trial was out on the street. We went running our errands and he used it well, even improvising if he didn’t have the right word! He asked to go to the bathroom, get a snack, asked for ice cream specifically, and when sick of a line that was too long, he kept asking me to ‘stop’! And in case I didn’t understand THAT, he asked for a break too!
He even uses two word combos, such as “want” and the item, instead of just the item. (Although he asks for that too.)
He’s also started babbling again, more consonants. Less humming and noises. (I also upped the omegas, which always seemed to have a positive effect on using verbal communication.)
Such good results in such short time. I’m not expecting him to use all 400 words right away, but I think we made a GREAT start!