I need some help... [Archive]

Sparrowbug

July 8th, 2004, 02:21 PM

Questions:
1. How did you first learn that your child had a disability?
2. Are you involved in any parent organizations? If so, do you find them to be helpful?
3. Do you find IEP or IFSP meetings to be intimidating? If so, why?
4. Do you feel that you are heard at the IEP/IFSP meetings?
5. Do you think that professionals truly understand your child? Do they see the strengths of your child or just weaknesses?
6. Are programs designed for your child or is your child made to fit into an existing program?
7. Are schools/pre-schools receptive to your requests?
8. Have you been denied any requests? If so, what was it and what was the justification for denying it?
9. Do you have the need for respite? If yes, how often do you utilize respite?
10. What are your hopes and dreams for your child?
I'll bite...and feel free to contact me if you need any other answers, or anything.

1. Brynn regressed after a serious illness when she was nineteen months old. By the time she was seen at 22 months, she was only saying "uh-oh" and she was pushing our hands at what she wanted without ever looking in our eyes. We took her in to "check her hearing", but I was concerned it was something more. We have an incredible doctor who discussed Regressive Autism with us, and helped get the ball rolling. Brynn was diagnosed just a few days before her second birthday with Sensory Integration Dysfunction and Autism.

2. I've struggled to find Parent Organizations that aren't hostile towards modern medicine and immunizations...so I haven't.

3. They are awful...now they are at least. I used to see them as just paperwork meetings, but then we moved to a more impoverished County, and it's been a huge fight to get services, and no one is on your side. They don't care about documentation or suggestions from therapists or doctors...it's all a bottom line thing and no one listens to you.

4. No. You walk into a meeting hoping and praying one of the people there aren't being controlled by the school district representitive or the FRC, but the therapists don't like to get involved in the battle for funds between parents and the school district. The school district walks in with a plan, and they leave with your signature on it despite all your misgivings and opinions.

5. The therapists I've worked with have been awesome. The other educators and management don't see Brynn as anything but another Autistic child...and they say "each Autistic child is different, and we create an individual program for each one", but what they mean is "your diagnosis doesn't qualify your child for special treatment and the fact that Autism has been shown to be highly receptive to therapy means nothing to me."

6. I've been given limited choices and I've worked within them to make the program into the best I can, but it's so much less than what Brynn needs that we've always had to supplement out of our own pocket with Private therapy. The School District found out about our private therapy, and has said that they know if Brynn isn't getting enough therapy we'll just supplement. :rolleyes: We're now 20 K in debt just one year later from this supplementing. Sigh...

7. No. Not at all. They've even gone so far as to change documents I've signed in regards to Extended School Year Services. We'd finally fought and fought to receive a limited number of sessions of Occupational Therapy during the summer. (I think it was six one hour sessions.) I refused to sign my name on the IEP on the Ex. School year page because I'd managed to get them to agree to just these sessions but they were awaiting further info from a therapist. They "claimed" they didn't receive the necessary paperwork in time, and checked the box saying that extended school year services were not warranted at this time. I'd documented regression and everything.

8. The above request was one of the most irritating, but they've also fought me continually on the number of hours of therapy. Their justification was that "every parent would like a cadillac for their child, but the reality is that most children will only be given a working car." Brynn's working car was 2 hours of therapy per week, and the cadillac that I pushed for was 4 hours of therapy. (They had to give in due to a technicallity, but constantly reminded me that she was receiving more than any other child there.)

9. Yes...we could so use respite, but the list is long, and we're somewhere at the bottom.

10. I want Brynn to mainstream for kindergarten, and I want her to not qualify for the diagnosis of Autism any more. It's a label that's been necessary to get her the services she needs, but it's heartbreaking. Three weeks ago, I dropped her off at a store play area...and they asked if there was anything else I wanted noted on her papers and I mentioned that she wasn't to eat any food there because she was on a special diet...they asked if it was an allergy thing, and I mentioned that she was Autistic, but it was mild, and not a big deal. I came to pick her up, and saw they'd written "AUTISTIC" in bold on her identification file and underlined it several times. It was as if they'd written "this child has the plague!" across it. I cried the whole way home...and I'm crying now just talking about it. My dream is that some day my daughter won't be and won't need to treated differently, and they'll say "this is Brynn" and that'll be it...not "Brynn is diagnosed on the Autism Spectrum." I'm fairly sure Brynn will always be in therapy for her SID, but I'd love if it was just a small portion of her life rather than everything revolving around it. Basically...not only do I want the Cadillac...but I want Brynn to be driving it on her own...and I want it red...and with a sunroof, climate control, and power everything...and I'd rather it was a BMW.

My dream for other parents is that there will be an advocacy group put in place to help the parents of newly diagnosed Autistic children to help decide what's best for them and what to do next. Currently you're cut loose and left to fend for yourself with something ugly and scary. I'd also like to see guidelines for minimum services for children with Autism put in place with school districts.

BTW...my experience with most of the assistants and therapists has been nothing but ideal. Early Education Therapists are a special type of people that love children, and listen to parents when no one else will. I have nothing but the deepest respect for them, and I understand why they are too busy to get caught up in the ugly machinary of the school district.

So...was that more than you ever would want to know?

Wendy