Have you had to become an advocate for your child?
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  1. #1
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    Question Have you had to become an advocate for your child?

    Are you tired of always having to fight for services for your child. Do you have to be an advocate all the time or are services there for your child when you need them. Are you happy with those services or are you trying to change them?

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    Registered User PrairieRose's Avatar
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    I'm not sure what services we are talking about here but I have had to, in the past be my child's advocate on occaission when they weren't able to speak for themselves. Not very often mind you cuz my dk's got their mother's mouth!

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    FV Buddy aka Kellie Bob Jerseygirl's Avatar
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    I do a lot of state level advocating for my adult clients, NJ offers many more services for kids than adults.

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    Its actually the same here too, more services for kids than adults. But we still have to fight for services for our kids.

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    Founder Sara Noel's Avatar
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    This is a highly sensitive area for me because I always feel we are slighted when it comes to services. We reside in a small city.
    I am thankful we have something, but often wish we lived in a larger city with incredible services.
    My son only receives speech therapy once a week for 40 minutes and OT once a week for an hour. It should be more according to our most recent iep which goes into effect now with the new school year. It's very upsetting to know that I could be receiving more services, but because of our region we're not.

    Sara

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    Registered User heaven's Avatar
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    i have and do. small town here too and it seems like i should have to move a bed into the school so that i can just stay there i am there so much. the school just doesn't seem to either want to or know how to help my son. this one is better than the last two he was in. he had a child advicate in maine but they didn't seem to help much so i was still on the schools all the time.

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    We have been fighting with pre-schools, and the board of eductaion for over a year now, because nobody wanted to take a child into their classroom who wasn't potty trained. Originally, we wanted to start Amanda in preschool whenshe turned 3. They all turned us down, even though I told them that if she had an accident, I would come to the school, and take care of it. Nobody would give, not even the New York City Board of Eductaion

    Well, the problem fixed itself. Amandas meds were changed, and she has finally been able to potty train! It seemd as though my persistance has done some good though. Now the city has mandated that all children entering pre-k bring a change of clothes with them, in case of an accident. Seems as though it isn't just my child with this issue. Feels good to know my big mouth did something!

  9. #8
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    For those not getting enough speech therapy or OT therapy. This is not the best solution, but we had to get private speech and OT for both of our boys, at $65 per 1/2 hr for both of them, every second week, twice for each boy.

    Both our therapists were exceptional and helped teach me along with our kids so that when I went home I could carry on what they had been working on. We did this for almost 3 complete years until our money ran out. OT helped our son with DS, speech didn't. Our ds with autism was helped tremendously with speech and OT.

    Its costly for private, but it helped us as a family tremendously because we learnt right along with the boys, so there was always a continuation from therapy to home. Can you look at doing that where there aren't services.

    Also fight until you can't fight anymore for services. Like AandAmom said, one person can get changes if they fight long enough and hard enough. Yes we grow weary, but we can come here and support each other. IMO - laws have to be changed - school laws, medical rules bent, more services supplied for not only our children, but also for us as parents. Get friends writing letters, grandparents can even help it phoning their congressman. Have them talk to their doctors, to those they know who are in the know about their grandchildren. One person speaking out, multiplied and then multiplied again makes for changes.

    btw - we homeschool so we don't have any services whatsoever from the school system!!

  10. #9
    Founder Sara Noel's Avatar
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    The potty trained issue would really infuriate me. My son doesn't have to be potty trained for school. I find that heartbreaking.

    I belong to a nice group of moms of autistic children. We meet monthly and it's been a wonderful support unit for me. We exchange so much information.

    As far as private therapy, I definitely plan on it. My little guy is currently being transitioned into preschool, so once that settles it's onto additional therapy. (we even switched insurance to be certain to be covered)

    CJ, did you do "brushing" with your son for sensory? We tried this, but I didn't notice much difference. I wondered if I should have continued this and if it took more time than I allowed to see any change.

    Sara

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    Sara, yes we did but didn't find it did much good. But I can tell you what did really well and that was a "weighted vest". Of all the kids our OT therapist had, he had the most weight in his jacket.

    You can make them - just a vest or even a jacket and have him wear it. It seems when they have this on, they are thinking more of the weighted vest and not getting so distracted.

    Here are a couple of websites:

    http://www.weightedvest.com/why_use_.html

    http://otpt.ups.edu/listservs/ot-ped...htedVests.html


    For our son, these vests were a lifesaver and what helped him to begin his journey back into the real world.

    I'm not advocating these vests for everyone. I firmly believe you need a trained OT therapist to work with you on this. What I am saying is ASK. To this day, our son still covers himself us completely with his blanket (head and all). It has a complete calming effect on him.

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