"Preaching to the choir"

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Registered: 01-19-2005
"Preaching to the choir"
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Sun, 05-21-2006 - 8:32pm

I am not really sure what I am trying to say here, but maybe I can write through it and someone will understand. As part of my "autism awareness month" activities in April, I tried to get out the word to the local population of moms w/typical kids that they could get free pre-K if they let their children be role models for our school district's autism inclusion program. There seems to be a problem with retaining the kids, which I guess I understand. I sent out press releases, made calls, and only got one local neighborhood paper to agree to do something, and they just printed exactly what I wrote.

Then all the great stuff in TIME, CBS, the "autism every day" film came out. I sent that around too. Who pays attention, only people like us. We watch and read, and feel part of a community and it does help. Truly, it does. So very much. But the people I want to learn, still do not. The "autism every day" film is creating such a buzz in every autism group I participate in, local, nation, and online. But how to get it into the rest of the world?

Some examples, I sent the TIME stuff to my mom. She felt she already knew everything, and she is very understanding and not at all a problem to me. But she felt kind of insulted that I sent her something she viewed so basic to her understanding. She didn't understand that I wanted her to share her knowledge with others. But I know this is painful for her too. I don't want to ask too much and she is our greatest fan.

Then I sent my ILS the "autism every day" film. They didn't even think it related to my life at all. It's our fault, I guess, we do everything humanly possible to minimize Eric's differences around them to keep family peace. Eric is doing "so well" that they now think my DH and I are just over-protective. But I know from experience that it is so easy to derail Eric. And if he gets derailed, it can last awhile.

Although my life is so much easier than the ladies portrayed in "autism every day" I still relate to them more than I do to all the typical parents in my life, and family. Eric has never been severely affected in all areas at once, but he has at times been like all those children in that film. I have definitely felt every thing those moms discussed. But no one who knows me (except DH and other ASD moms) can see it.

Well, anyway. I guess I just think we are the lucky ones, Eric does respond to therapy. He's getting better. I want to help in the awareness category, but I don't seem to have enough time or energy to do it all, and it bugs me I can't even get the message out to people who are my friends and family.

Does any of this make sense?

Katherine

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Registered: 03-25-2003
Sun, 05-21-2006 - 10:31pm

Yes, I totally understand.


I've got a couple friends who are very involved - including my daycare provider who keeps asking for more info.

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Registered: 08-26-2005
Sun, 05-21-2006 - 10:40pm
Well said Katherine and I totally understand where you are coming from. Just watching that movie makes me want to do more and teach more people to be aware that our kids exist.Even though my child is not as affected as some of the kids in the movie I agree with you about relating more to those parents than parents of NT kids. Nobody but a mother of an autistic child can understand the daily struggles we go through.
Teresa
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Registered: 03-26-2003
Sun, 05-21-2006 - 10:58pm

Yeah, I understand Katherine. It is frustrating.

I did enjoy the autism everyday movie. However, I had one gripe. It really only showed the one aspect or level of autism. All the children were either severely affected or still very young. I don't know how affected the younger ones were as they didn't show them as much as the older ones. I know I could have taken those videos they had shown of a child screaming and tantruming in my home at that age daily.

The only kids you saw alot of were the very obviously affected nonverbal kids. I do feel for those parents but it does give a false sense to others that this is what autism is only and we aren't dealing with autism or why are we complaining. I can relate to what those parents said in my own way as well. I do feel for them when thier children are still struggling so much but I really think the movie should have covered a little more of the spectrum. That way people could have seen that all of us deal with alot of that everyday.

Ya know, I often get tired of the misunderstanding that aspergers is "mild autism". I have met kids with an autism diagnosis who are mild and with a aspergers diagnosis who are severe. Folks automatically assume if I say Mike is AS that he is a quirky little professor who is mildly affected. On rating scales his autism is considered moderate and in some areas severe.

We get this alot because my nephew is more obviously affected and delayed. As such my inlaws give him alot of lattitude and none to Mike. It is obvious they pretty much just don't like Mike at all. They don't see his disability in comparison to nephews. Sometimes they understand and often they think it is just parenting and have been even known to push his buttons on purpose. Maybe if Mike was comfortable enough to stim there it would help, lol.

It is very weird. On the one end I feel lucky because my kids are milder than those in this video and on the other hand I am wondering what I am doing wrong because they appear more affected than Taylor in the other video I linked here.

As for relating and it affecting our lives. OH YEAH! Fresh in my memory. Today at costco was an extremely autistic moment. It was just too crowded today and Mike was having an extra "A" day. Touching everyone, making noises, running around, being difficult and out of it in general. We had to wait a long time in line and by the time we were half way through I had to leave DH with the cart and start walking Mike outside. He was stimming, making loud noises, innappropriate comments and on the verge of full blown meltdown. I had to hold onto his hand or his sleeve all the way to the car because he was just so out there and bouncy he didn't see the cars around us. We turned a whole lotta heads. And naturally he didn't like me holding onto him so when he realized it I got the occasional head but or kick and scream. With a toddler you can get away with them just having a toddler tantrum but at 10 it just looks WEIRD.

Renee

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Sun, 05-21-2006 - 11:20pm

I bet it does look weird!


You can even get away with it with a 4yo, even though I certainly do get some weird glances when they see me flip him over my shoulder and hold his legs in a bent position up to stop him from kicking me, and he's screaming STOP YOU'RE HURTING ME at the top of his lungs.

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Mon, 05-22-2006 - 1:35am

Where we moved from (in NJ) I had heard about the free pre-k at the gradeschool (and I am sure it was w/ special needs kids!?) and all I knew was that there was a lottery system to get in.

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Mon, 05-22-2006 - 6:12am

My son was 4.5 when he was dx. At the time of the dx he was in a "typical" pre-k class -- talk about horrible stories from that. His dx took place in late Nov early Dec and we had our first IEP meeting -- that was when the school admitted that the Pre-K teacher couldn't handle Adam in her class. We opted to allow the school to send him (at their cost) to a specific Pre-K class for children on the spectrum. Let me say, I was very glad we did. It gave us a chance to understand autism better and learn from the certified teachers. By March he was part of an intergrated class of both dx kids and typical kids -- again best thing we could have done.

I think all kids should have the opportunity to be with kids on the spectrum. Because of the number of children dx yearly (1 in 166) if they don't experience it when they are young, they will sometime in their school career experience it. I expect that 5 to 10 years from now (unless they find a cure....) the ratio of kids on the spectrum will be at least 50% of typical kids. Awareness is a wonderful thing and people are becoming a lot more aware.

Just my 2 pennies.

Amy
 
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Mon, 05-22-2006 - 9:51am

I had carry David too until he was probably 5 or so. Only I did it football style so he faced away from me. Usually it was because he was so hyper and out of control that he was constantly running away and would run right into traffic. Some times because he was agressive. It is one of the reasons I thought he was ASD young. This started when he was 1. I had alot of other autism parents asking me if he was autistic. That video of the mom with the boy screaming or the one chasing the boy was so us.

Talk about a site. When Mike was in kindergarten he was stressed. He would come out of school almost everyday and just unleash on me. Yelling, often hitting. David could get out of his stroller so there was no use bringing that in. And he would be taking off all over the school grounds. I would have David under one arm like a football, Holding mike by the other arm in a way so he couldn't hit me and Emily (3) following behind and we had to walk the entire school campus and out to my car like that on nearly a daily basis. And at this time I was told because Mike was so HF that he didn't qualify for services.

Renee




Edited 5/22/2006 9:53 am ET by rbear4
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Mon, 05-22-2006 - 11:21am

I can certainly sympathize. My daughter (in addition to pdd-nos) has a fairly rare metabolic/endocrine disorder called phhi (persistent hyperinsulinemic hypoglycemia in infancy). She becomes severely hypoglycemic if she misses a dose of medicine or doesn't eat regularly. She was diagnosed at 5 months to the day, after having several seizures. We went to the ER after the first seizure and followed up with her doctor during the second. We were told by both that she was very young and unless she had more we should just "wait and see" because a lot of babies have one or two and it doesn't mean anything. After she had a major grand mal in Wal-mart 3 days later we went back to the doctor and demanded immediate help (demanded might actually be an understatment where my DH is concerned). The doctor agreed half-heartedly to schedule her for an eeg the next day and while that was being organized sent us down for blood tests "just to be sure". Her blood glucose level was in a range that could have put an adult in a coma.

I tell you all of this because for parents of phhi children, community education is a very frustrating exercise. Granted, it's a very rare thing. In fact I doubt any of you have heard of it, unless I mentioned it here before. However, it can be spotted with such an easy test that I can (and do) do it at home every day. So, we ask ourselves, why isn't every baby that has a seizure given a blood glucose test immediately? It is a painful question to have no good answer for; especially after you find a parent that lost a baby because the test was not done. One mom in our support group never knew it was a possibility until the funeral of her 8 month old when the pediatrician asked if they found out the child had low blood sugar at the autopsy. Months of tests, anti-seizure medication and frustration over feeding and sleep problems and low blood sugar only came up after death.

However, even raising a typical child with no chronic health issues can be complicated and difficult in these days. Most people are far from family and life long friends and have little access to traditional support networks. The what's and how's of child rearing change with every new book and teachers only really want to get everyone to behave "correctly" at the correct time. Most parents don't have time to be truly interested in any topic unless it relates directly to them and theirs. I try to remember this when a close friend offers to babysit, but can't remember what Kivrin's health issues are. I try to be calm when me MIL tries to tell me how to potty train my daughter ("you don't let her choose when to go. You just take her and make her stay on the potty until she's done.") or when my mom tries to tell me how not to let Kivrin dictate my schedule. But there are days.....Believe me, I know there are those days when you just want someone to listen and understand. But that's what wine is for ;)

Mary