What do we do now?

[Robin H in VA]

Since ds has a diagnosis of sorts of Asperger Syndrome (still waiting on the ADD/ADHD test stuff and one other thing), should have that by the end of next week.

So what do we do now? I have been waiting for the OT to call me to set up an oppointment, so instead I finally called them. They didn't answer, so I left a message. The receptionist called me back on Thursday, but we were out, so now I have to call back on Monday.

Will ds go back to the psychologist at any point?

What should I be doing at home? The psychologist wants ds to begin ps, but that is not going to happen. Should we just wait until we start with the OT, ST, and PT to see what we need to be doing at home? Apparently there is going to be a wait list that ds will have to go on for these, so I am affraid that we are going to get 'further behind' in school.

[Chalane (FL)]

:group:

Look into ABA (applied behavior analysis) it is the only behavior therapy proven to work for children in the autism spectrum.

When you have the OT,PT, ST evals ask them what you should be working on at home while your on the waiting list.

"gettin behind in school"--you may need to adjust your expectations or at least how/when you get to the desired resluts (this depends on your ds).
As special needs parents we walk a fine line between pushing them to the next level and being realistic in our expectations. Your ds' time frame for learning new skills/ concepts may be different from his peers. Sometimes the destination is the same our kids just take a different or scenic route. Making sure that he is progressing is the important thing.

:group:

[Robin H in VA]

Thanks Chalane

I wasn't sure if we needed to go back to the neuro clinic or what and I hate the waiting.

I will look into the ABA.

I would like to focus on more of a schedule for ds, but not sure if that would be a good thing at this point? I know that children are suppose to do better if they have a regular schedule, but ds is not one for them. Do schedules work better for kids on the spectrum? Or should we go another route?

[Alice R]

They suggest schedules for children on the spectrum because children often have a hard time transitioning from task to task. Unexpected, sudden changes cause behavior/sensory meltdowns. Children on the spectrum usually do better when they know "at 10am I will stop doing math and we are leaving for the YMCA" so there are no surprises and they are emotionally prepared for the change. I don't know if this fits your child or not.


The ST, OT etc will just evaluate your son and then give you areas of strengths and areas of weaknesses. The OT will (hopefully) put you on a sensory diet (not a food diet but a scheduled sensory activity and I have no idea why they use the word diet!). The ST will give you goals to work on.

I think the rest is really up to you.

I'm NOT suggesting you put your child in school but this is why they suggested that you do. The therapies are not going to help you with schoolwork and that sort of stuff. They will help you with sensory needs (which will, of course, help with school work indirectly) and the ST will help with pragmatic language skills etc. Schoolwork? :no: Both my husband and I are therapists and neither one of us get involved at all in anything academic. That is completely not my domain. You can look into having further consults with a psychologist (to help with behavioral issues) or hire a teacher who specializes in whatever subject you are having troubles with.

I hope my post doesn't sound snippy, I am certainly not writing it that way in my head but writing and what it sounds like in my head are different. ;) I just don't want you to wait for the therapies and be disappointed. :group:

Robin, your child is 8, right? I know in NYC, ABA services are very much complete by about 3 years of age. Some programs go until 5 years of age but they are far and few between. Your son has aspergers and is high functioning? At this age, I don't know if they even do ABA. I personally have not have heard of an 8 year old with aspergers getting ABA but I'm certainly no expert. Maybe with a child who is much lower functioning? I'm just tossing that out for you to google up. ;)

[Lisalyn]

I agree that ABA is a great, great therapy. But, I have not tried any ABA with my 8 yr old w/Asperger's. Maybe I should?? I just look at it for my 4 yr old because we've used it to teach him many very basic skills.

My 8 yr old is in PS and has not been offered ABA at all. He gets OT and counseling right now (to deal w/anxiety). He was pulled from the classroom for help w/reading, language arts and spelling, but he is now at or above grade level in all subjects so he is in the regular classroom. This move brought on added anxiety, hence the counseling sessions.

We are also looking at a speech/language reevaluation to see about help for the social/language stuff (can't remember what it's called!).

We struggled so much at home with the academics. He would do really well with something only to come back in review and not remember any of it. :unsure: His big turnaround came after the anti-seizure med was started, though.

As far as schedules, ds uses a picture schedule at school and we used it over the summer. Once he gets established in a routine, he doesn't need a schedule. However, since things tend to change more at home than they do at school, I like to keep him informed to prevent those struggles.

I would definitely use a schedule with ds if he was schooling at home!

[shonda in ca]

Robin, my ds was dx'd at a later age as well. I'll tell you what we did.
We went to a pysch. for the eval. We spent $1400 for him to tell us to buy Playground Politics by Greenspan and to watch Friends on t.v. I'm not kidding. My ds was 7 at the time. I did get the name of an awesome OT from him, so all was not lost.
I called the OT and set up the initial eval. I don't think the therapists are going to call you for private therapy. You are going to have to call them. We had an OT eval and started on over 1 1/2 years of OT treatment which dealt with ds's sensory needs and auditory therapy for auditory processing. Best thing we did because without addressing the sensory needs, the other therapies didn't have a chance.
We did speech therapy for pragmatics, but the ST was not a good match for ds and we dropped it.
We did Vision therapy for 6 months and that was really good. Not just for visual processing but also for behavior.
We did 3 (or 4?) years of ABA group therapy called Friends Club with a center that specializes in that sort of thing. He also went to a couple of week long summer day camps for aspie kids.

Other "things" we did that I think helped:
*Suzuki violin lessons with a teacher that is trained with Education Through Music. She is very well versed with brain development and regulation issues and it's been an awesome "therapy" for ds in so many ways.
*Feingold diet. It's been a big piece in our lives but unfortunately not the magic asperger bullet I wanted it to be. We still live it, though, and ds chooses not to eat artificial colors etc. on his own.
*Chiropractic allergy treatment. We did a therapy called NMT that worked a miracle for ds to be able to eat Feingold stage 2 foods.

Best wishes to you and your son as you continue on this journey. :group:

[Chalane (FL)]

Robin,

Neuro clinic will prob. be something you have to go to periodically. Pediatricians usually prefer to send the kids on the spectrum to them for eval periodically esp. if you need/choose to use any meds to assist your ds.

I have Leighton (who is low functioning) on the GFCF diet and it has been great for him (I don't allow any cheating). Some people like myself swear by it; others say it didn't help at all. It may just be something to look into. I also use probiotics for him--again we have noticed improvements. I always let the doctors know what I'm trying & only try one thing at a time (that way you know what does & doesn't work). We never start anything new if there are new therapies or enviromental changes as these can upset him for a time. For instance the neurologist & I discussed adding omega-3, but I wont start it for awhile because we are adding on to the house & I need to have clear data on everything we try.

As far as schedules I agree with Alice & Lisalyn .

I have a great team of therapist that discuss what my life skills and academic goals for the boys are and then we all try to what we need to each focus on to meet those goals. OT works on strengthening Leighton's r-hand (the one effected by the stroke), but also on his writing (BTW she uses HWoT:)). The ABA and ST work on the same lang. goals. PT uses the ABA approaches to assist her in getting him motivated. The ABA implamentor focuses on both social and academic goals (ie learning the days of the week--so we can use a more elaborate schedule). Make sure you are a part of the team and that you are comfortable with where the therapy is going. Just wanted to share this because sometime we hear such horror stories about therapist (I have some myself--I've had to go through a few ST), but there are also good therapist that accept that you are a part of the team and even love homeschoolers.

Sorry, if this rambled a bit. I know this is such an anxious time and your in my prayers.:group:

[Robin H in VA]

Thanks to everyone for all your suggestions and input.

I have a quick question about homeschooling and these 'professionals'. Do you tell them up front that you homeshool or do wait for them to ask you where your dc go to school? So far the OT and PT know that we homeschool, but they may have forgotten since we only seen them one time for their initial evaluations. But the ST does not know, so should I go ahead and tell him/her?

[Chalane (FL)]

I usually wait to be asked or if it comes naturally into the converstation. If they ask about their teachers for example.

[Alice R]

I think I would say it because it is a different schedule and different approach and the more info they have, the better.