OT: question for parents of autistic kids

[ez]

My son is 19 months old and has been diagnosed with ASD. He is receiving very limited services thru Florida EI, and I am considering moving to LI with him because the services there are supposedly outstanding. I know services for autistic children under 3 vary greatly from state to state. I was wondering if some of you wouldn't mind sharing what type of services your child has received, starting at what age, and if you feel they received enough and how they have benefited from the services they have gotten. Thanks for your help-Eileen

 

[flynnmnstr]

My 4 1/2 is diagnosed ASD and SID, we live in NJ and were very dissatisfied with his services with EI until he turned 2 1/2 yrs old. It was at that point that he got an excellent speech therapist and OT and they really did amazing things with him unitl he aged out and transitioned into a Preschool program. Our first 6-12 months in EI were horrendous; they did not approve him for services at first (18 mnths old) then we fought for a reeval at which time they gave him developmental intervention with a special ed teacher (25mnths old), who was very young and had little experience with ASD (at the time Alex was not diagnosed and we knew something was not right but we weren't sure what it was; he was always doing just enough to not have us completely concerned). By the time he aged out of EI he was receiving a lot of services 7 sessions a week (2 DI; 3 Speech; 2 OT). If he had been diagnosed at that time he would have been given ABA/Discrete Trial session also. Although maybe not because he has never gotten formal discrete trial training because of his functioning level.

My 17mnth old just recently began EI services and this time we went about it totally differently (and we feel that Ryan probably is not in Spectrum just speech delays and some sensory stuff). I contacted my old therapists that were good and got them involved in the process so that when they approved my 17mnth old for services the therapists were ready to go and take his case. Right now he gets two sessions a week and that is going to be increased to 3 sessions in about a month (2 DI (by a speech therapist) and 1 OT).

Honestly, I think the most important part of EI is realizing that we as parents have as much say in the services as the therapists. If you are not happy with what he is getting then ask for a reeval with your current therapist(s). He should be receiving Speech, Developmental OT, and possibly some sort of ABA/Discrete Trial (depending on his level of funcioning). If you don't think he therapists are qualified, bring that up and challenge them. If you just want more services (aka sessions) then request it.

How many/ what kind of therapy is your son receiving now? For us for Alex it was not what therapy or how many sessions he was receiving it was the qualifications of the therapists. His speech and OT therapists were amazing with extensive experience with children in the spectrum. You said your son has already been diagnosed, perhaps you can speak with the doctor to get recommendations for the type of services your son should be receiving. If there are any support groups in your area get involved there are parents there that have been what you are going through and can help you navigate the services in your area.

 

[ez]

sorry see next post

 

[ez]

Thanks for your reply. Currently my son gets ST 2X a week, OT 2X a week and 2 hrs ABA per week. He has been receiving services for a couple of months, and since then has been formally diagnosed. I submitted a lETTER FROM HIS aba THERAPIST REQUESTING IT BE CHANGED TO 10 HOURS A WEEK ALONG WITH HIS FORMAL DIAGNOSIS AND ei HAS SET UP A MEETING IN A MONTH TO DIscuss that. Like you, I am very satisfied with his OT and ST, they are experienced with autism and have him doing PECS already. I have to drive 1.5 hours for the ABA (each way) which is just ridiculous, although they tell me they are waiting for a new person to be certified and she might be able to come here. The ABA people are ok, the directors are very experienced, my sons therapist is young and not as but is certified. I have had to do battle for everything he is getting now, and my caseworker lied to my face and told me they didnt give any ABA at all. Good thing I went over her head!
In LI and autism diagnosis gets you 20-40 hrs per week ABA in the home. I hate to leave where I live but I don't think theres any way I can duplicate that here. Thanks again for your imput.

 

[tran92]

hi there,

i am on LI, and we have been receiving services for my son since he was 9 months old. he is not on the spectrum although we did have him evaled since he mimiced alot of the symptoms when he was younger. (severe speech delay)

i know plenty of kids right now who are on the spectrum, as he attends a special ed preschool through EI and alot of the kids in his class are diagnosed. plus i have friends with kids on the spectrum.

anyway, seevices on long island are very good if you do have a diagnosis. my friends son got 21 hours of ABA per week (that's about as high as you can get) along with OYT, PT and speech.

i have another friend who's son gets 15 hours of ABA now, as well as the OT, PT and speech, plus he is in the preschool class with my son, which is another 12.5 hours per week. (5 days, 2.5 hours per day)

we on the other hand, without a formal diagnosis, had to fight tooth and nail for everything we got. (he had issues at birth, where the doctor's told us he could have brain damage, and if we saw any delays to get him help asap, hence getting him approved for speech at 9 months)

most kids on LI for speech only issues are told to wait until 18 months, sometimes as long as 2 years. you can get them earlier ( as we did) but it can take a bit of fighting. with a solid diagnosis though you will get anything you need with very little arguing if any at all.

is there a reason you would choose LI over any other place, and are you considering moving solely for the special ed services up here? it seems like a huge transition for that (and keep in mind, prices on LI are absolutely crazy)

i'm still here because i have family up here and wasn't quite ready to move away from them.

Amy and Jason (age 3, speech delays, asthma, Hyperinsulinism)