I created this blog to keep a record of our life and as we go through it affected by autism.
The good. The bad. The awful. The amazing. How I feel. How we manage. The leaps Cuyler makes. The setbacks we encounter. All of it. And I will never censor how I feel. Regardless of whether or not it offends people. You can be sure that will never, nor has it ever been my intention.
I also created it as an easy way for family and friends across the country and overseas to easily keep up with the goings on in our life.
That being said...in response to my previous entry - I don't feel any differently.
I saw the changes in him when he was in the Community Intervention Program. He made tremendous gains. He also picked up 2 major "habits" we had never seen him do before. Flapping and vocal stimming. As I said - there was a boy there who was constantly doing both.
Would Cuy have started doing these things anyways had he not been to CIP? Who knows. But I felt that he picked these up from this child. And I was not the only person to notice. Our resource consultant mentioned it as well.
I wish I could show a clip of Cuyler at his mainstream preschool and a clip of him in his therapy group. You would see 2 totally different children.
At preschool, you would see a boy who is engaged and participates and communicates with language.
In therapy there is a boy who looks lost and uses no language and just stares at the other children. One of which is constantly battering whoever is closest to him (myself included).
And yes...I get it. Thats life. I cannot protect him from the real world out there. All the undesirable things...the evil in the world (NO - not referring to autism - just life in general)
I can't do that for my NT child either. But I can refuse the 4year old kid down the street who I've heard say "Suck my dick" to come over and play. And there is no way in hell Cam is allowed to go there.
While I am able to and it's still my call...I'll make decisions that I feel is in their best interest.
I have been fighting my ass off for 3 years for my son. I have worked so fucking hard to get him to where he is today. Begging my husband, doctors, pediatrician, therapists to listen to my concerns when he was a baby. Spending weeks and months frustrated and agonizing over his diet and wondering if the benefits outweight the negatives (they totally do). Going broke paying for private therapy. Not to mention the emotional burden this has been on our family (as I know many of you deal with as well).
So you'll have to excuse me for not wanting to mess with that in any way. Even if that means excluding people from his circle that I don't think he would benefit from being exposed to.
Perhaps I should not have made the statement so broad. And I did say in my post that it was how I felt that particular day after spending an afternoon with that particular child.
Anyways...these are my personal opinions, feelings, musings, blurbs...whatever. I will never apologize for anything I write on here...but know that this is a personal blog (albeit on a very public internet) and I write for me.
posted by Irish @ 4:23 PM
9 Comments:
would you want your other child around children with behavour problems? I dont think so !!!! you made a great call chris dont back down.And dont apologize for making a choice parents with nt kids would have made as well. kids at that age regardless of any " issues " pick up things good and bad from their peers. you have 100% support from this mother of a mildly autistic adult child.my son was always mainstreamed and i think he is the better for it!!!!
Just a quick note to say that you have an amazing instinct - I would go with what your inner voice is saying. Cam and Cuyler are very fortunate to have a mother who trusts herself and questions the "experts" who are trying to help. You speak with clarity and wisdom on behalf of your children. Of all the people I know, you are one whose judgement I would definately trust especially where children are concerned. You have been right all along and I am soooooo proud of you!
It is definitely good for Charlie to be with kids whose speech, play, social, etc. skills are more developed than his, regardless of their age--if they are 5 to his 8, for instance. And if they present with none of the "severe" behaviors that he has struggled to work through (as in SIBs). We're all part of a big autism community, within which we have to make the right choices for all children with their differences. But we are all fighting the same fight, and loving our kids to the ends of the earth.
I think each and everyone of us is simply trying to do what's best for our children whether that "best" is keeping our kids from gluten and casein, keeping them from certain social settings, working 50 hours a week to pay for extra intervention or moving to the middle of nowhere to afford staying home with them - whatever.
We're all on the same boat regardless of how we're rowing, know what I mean?
And about this comment that was left ananymously on your last post:
"What if someone with an NT kiddo said that they didn't want their child around yours because he might start behaving like an autistic child"
While I wholeheartedly understand the sentiment behind this comment, I have to say that my child - MY CHILD - is echolalic and copies EVERYTHING that people around her do and say. In addititon, I DO have an NT kiddo that will sometimes copy my PDD daughter and I immediately call him on it. So who am I to get upset by someone not wanting their NT child to pick up habits from my autistic one when I don't want my OWN NT child picking up habits from her?!
I can see both sides of the arguement and I personally don't want to see EITHER of my kids taking a step backwards.
and good for you!!! keep on writing for you. i completely relate and agree. the blog is for me. it's a place where i can have 'my voice' and it's been a life saver. i applaud you!
Reading over the previous posts' comments made me think of something else: Henry has this stim he does when he's watching a TV program- he kind of hops up and down and hums and flaps his hands right in front of the tv. Not "normal". (And irritating if you might be trying to watch the tv also.) My almost 2-year-old imitates this. He's not (as far as I can tell yet) on the spectrum at all, and I can tell that he is imitating, rather than truly getting some kind of pleasure from, or expressing something through, this stim. I don't worry about it because I don't think it's an ingrained part of him and I don't think it will become a permanent behavior.
So I suppose I should give Henry the same benefit of the doubt. He's not going to stop talking because other kids in his class don't talk. He's not going to decide to start eating styrofoam because one of his classmates does.
I would still like him to get the stimulation of being around kids who have stronger skills than he does, but I'm sure that will come.
Thanks for providing the forum for this discussion.
you go girl............dad oxoxoxox
In response to your comment on mine...
Are you kidding me? Classy broads that we are, we'd get along famously.
As for what I want to do when I grow up: (you'll get a kick out of this) I want to own/operate a childcare center :-)
don't EVER apologize for being a good mom! limiting your children from exposure to undesirable behavior is natural for any parent. I totally understand and I wouldhave done the same thing.. having said that.. I do feel bad for the parents of the other child b/c in her shoes, I'd want my kids to be around yours to learn how to be good. KWIM? you want your kid to be surrounded by chlidren who are AT LEAST as functional as your own, but someone's kid has to be at the head of the class. it is tough...
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