New and seeking others who understand. Anyone hit a dead end with getting an educational diagnosis of autism for help after you have received a medical diagnosis?

Kelly - posted on 12/15/2011 ( 1 mom has responded )

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Hi everyone. Just wanted to introduce myself. I am a new member to this group. I have a 2 year old son who was diagnosed with being on the autism spectrum. I have had difficulties getting the school district to provide help. I was approved for 1 hour twice a week to be in a play group for social/behavioral issues. I have been very frustrated with the outcome so far. I come home wondering what am I gaining out of this so far. He does have mild autism in my opinion. I saw a psycologist who diagnosed him back in July. Even my pediatrician agrees with the diagnosis. The school district continues to tell me he doesnt have autism, that its lack of sleep and possible allergies/food sensitivities. I get so frustrated and discouraged. I'm am luck to be a stay at home mom for the time. I have heard everything under the sun from the day he was born. I was told: colic then acid reflux. I had seen in the past year a gastro, ENT, allergist, neurologist and finally a psycologist who gave me the diagnosis. So when the teachers tell me, in the 2 hrs a week the see my son, that they dont agree with his diagnosis the phycologist gave me, I just want to cry. My son has sensory issues with light, sound and touch (varies from day to day), is very hyperactive, destructive (throws and tips toys/furniture all day), doesnt sleep threw the night yet (frequent night wakings), hates being in stores (must have a snack the entire time or he is crying, yelling, screaming), doesn't play well at all with other kids (can be either upset and cries and hides or is agressive..yelling/hitting). He wasn't talking much at all till this past month. After he was on a GFCF diet for 2 months, his language took off. Now he speaks 3-5 word sentences, he stopped tiptoe walking and lining up books/toys almost all together. I d/c diet because he stopped eating all together after 2 months (he was down to eating only grapes and applesauce). This is what started to teacher from saying "well there is no such thing as the GFCF diet with helping autism, it just sound like he has food sensitivies sence the diet has helped him. Going to check into the feingold diet I just read about on here. He has sever seperation anxiety with me. He has complete meltdowns if I leave his sight. He also can have meltdowns if the routine in his mind isn't done the same way it was done before ( I have to buckle his belt in car....screams/kicks/bites at even his father if he tries to do it till I end up doing it, I have to push the grocery cart...screams if anyone else tries). He has what I have read and the dr has describes as sensory/stimming with his hands. He has them in a tight grip, rubbing them, clinching them, always to the point you want to grab them and rub them to relax them. But he hates when I try to hold his hand, he pushes your hand away and grips them again. Im not a first time, over reactor mother as some see to think. I have raised 2 step kids and now have a soon to be 5 year old daughter. So I do know what I am talking about. Just looking for support from other parents out their. I have not found much help in my community yet for support of others in the same situation. Has anyone had difficulties with the school system willing to help, denying autism diagnosis, denying the fact that what I see 24/7 and what they see 2 hrs a week are just social/behavioral? Thanks, Kelly

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Jane - posted on 12/15/2011

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Teachers are trained to be teachers, not psychologists. In addition, while some of them are parents, very few are parents of kids who have a problem like autism, or in the case of my son, early onset bipolar disorder, ODD, ADHD and Asperger's.

I have had principals say things such as "I don't believe in disabilities I can't see." and "Children don't suffer from mental illness, but parents do." This with a child who had been in residential treatment multiple times and who first tried to commit suicide at age 7. I was labeled a "helicopter parent" more times than I can count.

Check around in your state for an advocacy organization. In Texas we have Advocacy Inc., which helps anyone who is not getting services or access in spite of a diagnosed disability, At one point we ended up with a lawyer and sued the district. You might also look for a local Autism support group. The parents will be able to give you suggestions of things that worked for them.

Good luck! You know your child better than anyone. Stick to your guns.