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fitandgeeky
fitandgeeky Posts: 232 Member
My youngest daughter, who is now five, was diagnosed with Autism when she was three. It's been a hard road, lots of therapy and IEP meetings and tears, on everyone's part, but all of us have come a long way, especially my little one. She was nonverbal at three and now speaks in full sentences. Currently, behavior and sensory processing are her biggest challenges. As a family we've made this journey together. Some days are harder than others.

We don't have a huge support system locally. There is only one group and unfortunately they meet on an evening my husband works. Baby sitters are a no-go, so I've had to seek out support online. I'm looking forward to being a member of the group :)

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  • lazieats
    lazieats Posts: 185 Member
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    Hello! 100% of my support is online. It helps a lot. We don't have any family that would help out and babysitters are a no-go here, too. I have a few friends with children on the spectrum and a few who don't have any kids and friends in-between and it helps tremendously to be able to chat or email or blog and have them hear me. My son's 13 so I know the road you're on. I hope you have good schools where you are and that all those meetings, prior and in the future, are productive and as stressless as possible.
    :smile:
  • fitandgeeky
    fitandgeeky Posts: 232 Member
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    Thanks for the welcome! As for the meetings, I'm lucky that we have a local advocacy agency that coaches parents through IEP meetings. Without that I'd likely still be lost. Our school is okay, not bad but not great. They did start an ASD specific class for K-2 this year and thank God. I really didn't want to have to move her or put her in a varying exceptionalities class. She won't be ready for mainstream for a while. We're okay with that too. I want her to develop at her own pace.

    Are the schools good where you are?
  • dolly3186
    dolly3186 Posts: 81 Member
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    Welcome to the group! :) Most of my support is online as well. There's a ton of support and information here and everyone is always willing to offer advice etc.

    I have two kids, a girl that's three and a boy with ASD that will be 2 in May. We are lucky in the fact that he was diagnosed very young. We are working currently in an at-home program with 20 hours a week of Floortime/ABA therapy and he is doing better. I'm so scared for when he gets school age and I have to deal with IEP's and such. I've heard horror stories!
  • lazieats
    lazieats Posts: 185 Member
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    Our schools aren't very good at all, geekgrl19. Because my son has always tested well, seeing as he doesn't have mental retardation, they have always put him in regular classes. And then call me daily when he flips his desk, barks during lessons, wanders the room without permission, etc., etc., etc. They gave him a one-on-one aide for most of a year and then said that since he was doing well, they took her away and the behaviors came right back. They would not give him the aide again. By middle school he was being beaten up and egged into outrageous behavior weekly and was suspended monthly. We pulled him out against the protestations of the school staff and put him in Independent Study. The principal actually told me that he would not get any socialization if I pulled him out of regular school. I told her that if I wanted this kind of socialization, I'd send him to Juvenile Hall! Independent Study isn't the best fit, since he and I don't school well together. But it's safer and a heck of a lot less stressful! We have hopes that next year when he goes into High School, we can get them to understand that he really needs to be with his own peers, not his age group. When he's at his Special Olympics basketball practice, you'd never know he was public enemy #1 at his old schools. He enjoys himself, has conversations with other people who are a range of ages, doesn't get teased for missing the hoop. It's really great and I hope I can get that for him in high school. If not, well, we'll just keep doing the at-home thing.

    Because we are on the outer edge of Los Angeles county, we have access to meetings and services, even Autism schools, but they are often over an hour away one-way. So close, but so far. My friend further south in San Diego county has awesome services. I'm shocked at the opportunities and events they have there. I'm so glad you got help with learning the IEP. That was something we had to learn the hard way, and I would never recommend that. No books on it really give a good idea of it and I hear it is much more beneficial having someone in your own area, who knows the districts and schools, to help you out. I'm so glad you got that. :)
  • fitandgeeky
    fitandgeeky Posts: 232 Member
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    That's awful lazieats! I don't blame you for pulling him out. I'd have done the same. I think the only thing that saves my daughter is her language deficit and the fact that she doesn't test well. She's five and she only tested at a 26 month level for language. Far below what's needed for general education kindergarten. Her current class is seven children with one teacher and two aides. I can't imagine her in gen ed with eighteen students and one teacher. She'd be overwhelmed. I hope things work out for you and your son. It's heartbreaking how awful the school system is on the whole when dealing with ASD.
  • lazieats
    lazieats Posts: 185 Member
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    You're daughter's class sounds amazing! My son was non-verbal until about 3, then he started picking it up in fits and starts. But he still has... I dunno, like mistranslations in his memory when it comes to words. Some of it has to do with certain consonant-clusters that he has never been able to pronounce. And partly it's the literalness. He pronounces words based on one set of pronunciation rules. For him, 'ch' is always pronounced like 'chair,' no matter if its the word 'choir.' Even if he hears it over and over, when he says it, it comes out his way. He's also at about the maturity level of a 7-year old. His still loving Power Rangers did not go over well in the middle school populace. That age-group is just so savage!

    I always wonder that if Autism is such an epidemic, why does every school treat us like they've never seen it before? I had one teacher tell me he was sure my son would succeed once he "grew out of it." You could see the school psych and principal both wince and want to slam their heads on the desk when he said that. That was the highlight of that meeting. lol

    With your daughter starting off with the help she needs, I hope that will continue to follow her wherever she goes! I always play nice in meetings with the school, but I've learned that sometimes you also gotta play hard. Many of them are much, much more concerned with their paperwork and budgets than making sure each kid is succeeding. I really hope you don't have to run into that.