Spectrum View
Cynthia SimmsHost of
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We Need Alliances
Hi. I’m Cyndi Simms the host of the online talk show called Spectrum View where we’ll be exploring issues and concerns people have raising a child who’s on the autism spectrum.
I watched an episode of Survivor last night. Okay, I know we’re not talking about ASD, but stay with me here. So I’m watching and all I’m seeing is a bunch of people – some of them back-stabbing, most of them not very nice – having to do some really stupid disgusting stuff for money.
Now, I’m all for money! I love money, and I hardly ever turn it down when someone offers it to me. But to eat some kind of a bug for money? Let’s just say that it would have to be a lot of money.
So these folks are eating bugs and balancing on one foot on a platform in the water for hours and talking about how they’re going to vote off this guy or that so that they can form some kind of alliance.
I know – still talking about autism, but it’s coming. So I’m thinking, “How does the one girl without some kind of alliance do it? She seems actually to be the nicest one of all. But she doesn’t seem to have much to offer the other survivor types. She can’t hook them into another group of friends. She’s doing what she has to do to actually survive, and she’s not offending anyone, but what chance does she actually have of winning?
Then I’m thinking – those people on Survivor have no idea what it really is to be a survivor. Where’s the “my child is insisting on painting his face green before school today and I have no idea what to do” challenge? Or the “I’m on the phone and my daughter is not really interested in the fact that I’m talking to the school principal and she’s just going to keep screaming at the top of her lungs” challenge? I mean, those Survivor dudes have it soooo easy compared to that. Actually, I have to say, if you promised me there would never be another meltdown, I might actually eat a bug – that’d be worth way more than a million dollars!
As I’m putting myself into the real survivor’s shoes (that’s all of us, real moms and dads and teachers and caregivers for kids with challenges!) I’m thinking, we need alliances! Yes, we need people around us who can give us the things we can’t bring to the table ourselves. It’s tough to be a parent, and it’s tougher to be a parent of a child with special needs. Some days, there are rewards, but those rewards hardly ever involve a big bag of cash, A lot of days, just being alive at the end of the day is the best you can do. So short of eating bugs, what can we do to be sure we are really, truly surviving, that we’re not just giving care, but getting the care we need to carry on.
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This is how I feel,as my grandson got older it got harder. I have custody of him since he was 3. He calls me mom most of the time. I am probably his best friend. Now he is 12 and he seems to be harder for me to reach. I don’t know if he feels my fustration, I am tired most of the time. Our dynamics at home have changed. My husband is a full time student now, I work more hours and he has hot preteen but still acts immature at lot of the time. Everything in life is “not fair” and he hates being AS. He makes good grades in school mostly A’s and B’s, but of course he doesn’t get along well with the other students. I need a place to share these concerns and get advice on different techniques for him and us. Thanks for this forum
My son is almost 10 years old this summer. He is dealing with a Bully at school and I need to know how to teach him how to deal with that. The problem is when he is bullied, he waits too long to tell anyone and the school says at that point, they can’t do anything. His teacher’s have been made aware of this problem and will now keep an eye on it. But I want to know how to arm my son with the abilities to deal with this. Any suggestions? I wish there was a film to show him and talk with him about this.
I hope that this forum becomes a place where parents like us can share ideas and hopefully, find some answers. The bullying thing is horrifying — my son is bullied not only by students, but by teachers and other authority figures who either don’t care for him because he’s not “normal” or who don’t believe him. I am going to try to do an episode of Spectrum View about how parents can handle the bullying issue on a child’s behalf. The scary thing is, it seems perfectly acceptable to pick on a kid on the high-functioning end of the autism scale. Definitely stay in touch — I’ll do a better job at it too. (I didn’t even know there was a forum here, but I LOVE it
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