Help Needed

My son has had Aspergers for almost two years now. I have gotten an IEP for school and he is on medication. I feel like there is something else I need to do. I have been looking for help but everyone tells me that he doesn't qualify. I feel like I am getting the run-around. Any suggestions?

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Permalink Reply by Celeste on August 18, 2008 at 7:39pm: hey janet - have you had an assessment done on whether or not your son needs ot? also consider how i he doing on meds and with his iep? i have realized the last little while that there is nobody out there gonna fill in the holes for us - we gotta be up on all of it. if i were you i would pick your top three issues and start there. there isno way you can tackle it all at once. and with ot and school both when they learn something or overcome something celebrate it but dont put it on the back burner. also you can make picture schedules and social stories yourself for your son since you know his needs better than anyone else. there is an awesome website: do2learn.com with tonnes of pictures you can use - and you can either order stuff from there if you want or download the freebies there is lotsa good stuff.... best wishes for your new adventures!; ▶ Reply to This

Permalink Reply by Janet on August 18, 2008 at 9:31pm: ben does have ot....and we are working on the medication and the iep thing. i know there are other programs out there that will help me but they keep telling me that he is not "disabled" enough or that his scores are not "low" enough. you would think that with a diagnosis of aspergers that they would be willing to help; ▶ Reply to This

Permalink Reply by Celeste on August 18, 2008 at 10:07pm: hey janet are you referring to ABA? as far as other programs? some of the things we have tried are RDI (relationship development intervention) and there is a "newer" program out called DRI could they make it any more confusing... its for devlopmental relationship intervention or something to that effect. anyway the two are similar but different. no doubt about it that getting funding for aspies is hard and not everyone takes it as seriously as a low functioning autism dx. which is unfortunate since these kids have such HUGE potential...i totally understand your frustration. you can look these programs up on the net just to take the bull by the horns. get educated on the differences on these programs and then decide on your own what would be best for him. then you just have to be a really pushy one with your doc to get what you want for service. thats what i had to do its a total pain in the ass but its the only way to make things happen. i hope it goes really well and that you find stuff that will help. dont back down either just because someone says no just push until you get what you need. not fun but very effective. i found by research that aba is not the best therapy for MOST aspies. but good for some. its used more in low functioning or non verbal autism. i hope this helps.; ▶ Reply to This

Permalink Reply by Janet on August 19, 2008 at 8:54am: see...i didn't find out about ABA or RDI or any of that till yesterday.....so needless to say that is on my list of stuff to talk to the doc about. LOL...he loves it when we come in. I have a book of questions to ask him. however....our doc is still kindda new at this too. living in a small town with not many options is kindda hard. not everyone knows what the hell they are doing. so we are all learning as we go. any questions that i have for him he answers to the best of his knowledge. if he can't answer he tells me and then we learn together. he does the same thing i do....look crap up on the internet. it's kindda like a game to see who can find it first. LOL! and with gas prices as high as they are i can't really afford to take him anywhere else.
so to get back to the ABA and RDI....how do i go about finding one?; ▶ Reply to This

Permalink Reply by Celeste on August 19, 2008 at 12:11pm: here are a few websites...
this one explains the different therapies:
http://autism-therapy.suite101.com/article.cfm/autism_therapy_choices
this one has a few seminars coming up and is all about RDI - i think (but i dont know for sure) this is most common treatment for as:
http://www.rdiconnect.com/
anyway rdi has been the best choice for ayrek. we had kind of "put it on a shelf" for awile but are "dusting it off" for the new school year. aba is more about cognitive training i think so it doesnt usually apply to most as kids as they are pretty quick learners in many areas. i hope this helps janet!; ▶ Reply to This

Permalink Reply by Janet on August 19, 2008 at 2:54pm: thanks a bunch...i am gonna meet up with his OT and his new Spec. Ed teacher today...i will ask them about that.; ▶ Reply to This

Permalink Reply by Vickie on August 20, 2008 at 10:06am: Hey Janet
It feels like that doesn't it...we work so hard on getting a DX for out kids and then we get it...and go now what? We have been working with Behavior intervention. Mainly...getting Cale into safe situations...then correcting his behavior as we go. Anything to riding bikes with other kids...to playing board games. We have found a couple of kids who don't mind when we interrupt to point out how Cale is not correctly interacting. I used to be worried about embarrassing him...but not anymore...The more he learns now...the easier it will be later. We then spend time talking about what he can do to change that.
He said to me the other day that he was tired of talking about everything...I have to be careful not to overdo it I guess.
Hope it helps
Vickie; ▶ Reply to This

Permalink Reply by Janet on August 20, 2008 at 2:50pm: that is very interesting...how do i go about getting the behavior intervention?; ▶ Reply to This

Permalink Reply by Celeste on August 20, 2008 at 6:13pm: Janet said:
that is very interesting...how do i go about getting the behavior intervention?; ▶ Reply to This

Permalink Reply by Celeste on August 20, 2008 at 7:58pm: geesh i dont know what happened there but vickie and i are both in canada and behaviour intervention therapy is something that is provided by the manitoba provincial govt children special services. i would assume that b.c where vickie is would be similar. there are behaviour therapists that work with ot's, slp's and pt's so you should ask your ot about seeing a behaviour therapist. we use behaviour intervention plans too and they work really well.; ▶ Reply to This

Permalink Reply by Missy on August 21, 2008 at 11:29pm: I don't know your son, but my son's OT has been my angel. He also has a speech therapist that I love. I asked her if she could put together a group to help with pragmatics and social skills and she found two others also affected by developmental problems. It is so wonderful. Her whole approach with them has been about embracing differences, but also that there is a time and place for things. She uses alot of social story type things. It has been such a positive step in his acceptance of his wonderful unique self. I don't want to go on forever, but I will say that last week they talked about smells and what to do if something smells bad. She explained why you don't yell out "EWWW something stinks!" Most kids grow into these realizations, mine needs to be taught these things as if he is being taught reading or math. When he knows the rules he follows them (as well as any other 5 year old) but there are so many unwritten rules that we don't think about. Luckily, he has a ST who does! The results of these two therapies has been amazing!; ▶ Reply to This

Permalink Reply by Vickie on August 26, 2008 at 6:44pm: Hey Janet

We had Cale observed and then a plan was put together to address his problems. We now work on getting him into group situations where we can control and guide him. We slowly are changing how he responds to different situations. We get him involved in board games...street hockey...bike riding...anything that involves a group of kids..then we correct...and correct...the neighbourhood kids are cool with it...I used to feel awkward interrupting their play...but now its normal..the other kids are trying to help him also|(they point out things to Cale and are usually very patient)... They say it takes a community to raise a kid...and I can honestly say that our community is helping.
Hope this helps...basically we got a professional to make out a plan..then we put it into motion.
Have a great rest of summer
Vickie; ▶ Reply to This