Posts Tagged ‘ted’

I made this video today, based on actual conversations over the years.


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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.

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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.

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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.

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sunset 002

Originally uploaded by Kibbles

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!

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fireworks 001

Originally uploaded by Kibbles

Tomorrow he gets his chatbox! We’re so excited!

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Originally uploaded by Kibbles

Ted and I had a blast at the Niabi Zoo, despite the WRETCHED weather. More pictures if you click on this one.

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Originally uploaded by Kibbles

We just bought Teddy a new scooter, here in Iowa. This was taken in Brooklyn, years ago. He’s not using it much here, and I am not sure of the date this photo was taken. That’s kind of important because there was a date where he was a bit more on track, developmentally, and then it went away. He was always a little different, though.

I need to show this to his physical therapist, if she has no luck getting him on a scooter. To show that he did have the skills, and he may have other reasons for not using it now.

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Link: Growing Up With Autism – Newsweek Health – MSNBC.com.

Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?

I think one of the better pieces I read lately about the topic. It acknowledges the difficulties faced, without getting on the pity pot, and it does show the broad spectrum of lifestyles these children have. Some are just kind of quirky. Others are in their late teens and still don’t speak.

I think this country is due a wake-up call, though. By not furthering therapies that help lead to independent lives, or working on ways to be semi-independent, we are going to have a number of homeless people wandering the streets, or a resurgence of institutions to deal with many children when they get older. Did you know that social security/disability DISCOURAGES saving for a child’s future if they are disabled? More than two thousand dollars saved up, and you lose precious money that you can use on therapies and items to try to avoid that. It’s a choice of money now, or money later. Not much of a choice, is it?

I think, too, we need to be careful with the direction we go with research and ‘cures’. Some treatments out there work on the symptoms without acknowledging the underlying issues. You can drug a child or use ‘adversives’ (like the school that NYS sends kids to, which use skin shocks) to make them stop behavior you find unacceptable (even things like pacing or hand flapping, not dangerous things). Or you can look at the root causes (need for sensory input) and find out how to get that input into a person without it distracting from what needs to be done, so they can work, learn, have fun. With my son, for example, they make this neat vest that ‘hugs’ him tightly. Some kids just need a little toy to flip around in their hands, or something to vibrate, or to take time out in their day to go on a swing or rock or something like that. A more positive therapy, I think.

Time will tell how independent T will be. But he is happy now, and making some progress. I thought, when we were pretty sure that he was on the spectrum, that being told I would be devastated, destroyed. But coming home from the clinic he was the same kid he was when we went there in the morning. But now we had a reason for things, and instead of him coming into our world, they gave me the keys to HIS world, and now we can be there with him, and now that we can go into his, he can take our hands and come into ours. And that’s ok with me.

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