Need some advice - Autism Spectrum Message Board

Jana2676 · 09-28-2004, 08:28 PM

My 4 year old daughter may have mild autism, and will be tested soon by the local school district. I had her speech tested last September by the special ed pre-school teacher and the tests went no where. Her hearing test was fine. To make a long story short, my daughter wasn't able to complete the speech delay testing because she over stimulated by a pre-school setting (I am a stay at home mom, she has never been in a day care setting before) and after the teacher physically restrained her and yelled at her, I stopped further testing by this woman. Now my daugher is in pre-school and I again asked for speech and special ed testing, luckily it will be with other school employees. I have been concerned about her speech, her lack of eye contact, her day dreams, and she just ignores people and some other issues. The school district, by my request, talked to the pre-school teachers who thought my daughter may have autism since her 1st day in school. They were afriad to approach me with it, since we are brand new to this pre-school and they aren't familiar with me. I have looked up the behaviors of autism and my daughter exhibits quite a few, in some cases just in mild forms.

So now, I am on the right track for testing. When I spoke to the speech therapist today, she told me I am going to have to fight for testing and services. We are in a very small, rural town in Northeastern Calif, and if she does have a problem, I want to know what to ask for and expect. The comment about fighting for services has me nervous. As parents who have been through this, what should I expect, etc?

Thanks! Jana in CA

ang64063 · 09-28-2004, 11:57 PM

Okay, first of all the school district cannot make an autism diagnosis. All they can do is merely suggest that is what she has and see what services they can provide for her. I would suggest you contact her primary care doctor and see if they can refer you to a doctor who specializes in the diagnosis and treatment of Autism. With you living in California, you have excellent resources in that state. You just have to research them to see what they can offer you. Also you might look into finding a good DAN (Defeat Autism Now) doctor. If have heard there are a lot of excellent ones in California, but they are pricy and not usually covered by insurance.

I would also suggest that you contact your State Department of Education. Request a copy of your state special education regulations and other information about special education issues that is published by your state.
The Directory of State Departments of Education has contact information for all states.

"I want to know what to ask for and expect". Ask for every service you know that she is going to need and expect them to provide it. Keep this in mind, if they cannot provide the services for her at achool, the school has to pay for her to get those services even if that means transferring her to another school to get it. That means if lets say the nearest school that can provide the services she needs is 30 miles a way, the school has to pay for trasnportation to and from the school, any out of district fees and for any of the services that may require a fee to be paid to obtain services.

If you are truly concerned that you might have a fight on your hands, keep in mind that you can hire a child advocate or a lawyer that specializes in advocating for the welfare of disabled children. When going into the meeting to discuss services and such, keep in mind that you do not have to sign anything or accept any of their proposed plans of action until you are comfortable with it.

If after you agree to the plan and they successfully impliment it, you can schedule a meeting with the team at any time during the school year. One thing that I do is I e-mail most of the team members f changes made to medication, personal changes, etc. Not only does it keep them informed of any changes that may or may not affect my son, it give me an opportunity to let them know "Okay, I feel this is necessary for you to know, but not to call a meeting about.". Then I either print the message out or I save it to my hard drive.

Any correspondance you get (either from the doctor or the school), SAVE IT. This way if you need to refer back to it before a meeting, you can.

When going to the school meetings, come armed with a notebook, pens, any important documents, lists of the child's medications (names, doses, and why are they taking it) and questions.

I hope that this rambling has helped you in some way.

Jana2676 · 09-29-2004, 12:54 AM

Thank you for the advice. I just found out this information today, and wanted to jump right on it. This is my oldest child and she won't be in kindergarten until next school year, but I wanted to get a head start on services. Thanks a bunch, today has been a little overwhelming!

Lisa in Indiana · 09-29-2004, 12:02 PM

jana,

Welcome! I just wanted to add to the already good advice given by ang64063, that you should also look into another great resource in California called FEAT (Families for Early Autsim Treatment.) They have local support groups (and in Northern Cali as well) that can help you out with an EIP meeting. Do a web search for FEAT and you should find their website. I can't give you the exact web location, it's not allowed on this board. Good Luck!

shue · 09-29-2004, 01:46 PM

CA has a great reputation as a whole for services for children on the spectrum. We considered pulling up stakes and moving there when we got the dx. FEAT is a terrific suggestion.
I am sorry that you are dealing with this challenge in your family, but welcome to the fight. Good luck and God bless!