Where do we go from here??

[Hasil72]

It may seem like an odd question for a group of strangers who have never met DS but, often I learn more from all of you than from the doctors and case managers. So here it is...I've posted before about DS who will be 9 next week. He has been dx'd with PDD-NOS since the docs can't agree if he is or isn't an Aspie , as well as the encompassing signs of ADHD, sensory issues and anxiety. He's currently on both Strattera and Daytrana to help the impulsivity issues. He's entering his third year in a mainstream classroom, this year with a FT para for the social aspect not academic. He's in karate class but struggles with low tone. Is socially immature with few friends if any.

My issue is I feel we're at a plateau with his treatment. Most difficulties have been managed with the exception of his verbal impulsivity. We're talking constant interrupting, repeating, one teacher called it "verbal diarhea". We just cannot conquer it. We've tried behavior mods and everything that I've read and all that's been suggested by his CST. The neurologis is pushing for yet another low dose med and I've been refusing for months. How many drugs do they want to pump a 9 year old with before he's comatose? It's trivial compared to what others go through on a daily basis but the impulsivity has really become an issue this year with both school and classmates. Additionally, teachers will tell him something or give directions (i.e. please stop touching Sally or please start your writing, etc. yet two minutes later they have to repeat it, and again, and again. I tried to explain it to his karate teacher last night. DS hears you but it's like the info gets put away in a file cabinet and he can't always access it right away.

It breaks my heart that I can't figure out how to help him and all the docs want to do is add to the meds. Does anyone have any suggestions? Please? I'm hoping for some strategies before our next appt in August.

TIA!

Lisa

PS-We just enrolled him in a social skills support group at the local autism school starting in the fall. Another karate mom suggested it but says she's disappointed that they teach great strategies but not when to apply them.

 

[worm761]

My DS is 12 also and his diagnosis is HFA/Aspergers. I always thought it was one or the other but that is what the paper says. anyway, i read that fish oil can help with concentration. it will also help with the emotions, if your son is anything like mine. It is natural and doesn't interact with his meds. He is on daytrana patches though. his doctor doesn't seem to mind him taking it. They are big pills though. you might want to see if they have a kids pill. I bought it for me originally. it is good for your heart and i refuse to take anti-anxiety meds and these help.

 

[Hasil72]

Thanks. We are in the process of trying the Omega-3 supplements. Unfortunately, the company we were using has just stopped making the children's version so I'm looking for another company. I had my hopes up on that but I don't see a difference yet. I read in one article that it may take up to three months before anything improves.

 

[bookwormde]

Well I would say that if the docs cannot agree on a diagnosis then it is time to move up to the next level of experience as far as clinicians go.

As to your child’s needs, it is becoming better understood that behavior modification is just a bandage (as are medications for the core spectrum issues). The primary needs are to reduce anxiety and to teach skills (and to generalize them). The primary areas of the skills are in the social, EF and TOM areas.

For OT and speech issues I can highly recommend a couple of OT and speech therapists in the Christiana Hospital system (in Wilmington), which have worked wonders for my child. The improvements in his pragmatic language and muscle tone and fine motor skills are so dramatic over the past 24 months that we are considering lowering the frequency of therapies to maintenance levels or possible discontinuing it altogether.

PM me and I will get there names and numbers for you if you can get your insurance to cover it and the trip is not to long.

There are also a lot of good support organizations in NJ like Aspen, which can give you referrals to Highly, qualified and experienced clinicians.

bookwormde

 

[JulieWent]

My son is 13 now and has non-verbal learning disability or NLD. It sounds a lot like what you're describing, in that he is definitely a VERBAL PROCESSOR. If it's non-verbal, i.e. if someone gives him a list of things to do or tells him to remember something without having him repeat it, then poof, it's gone. Now, if he processes it verbally (says it), then it's his forever and he'll NEVER forget it. So, he talks a lot, from sun up to late, late at night. He studies by talking, he talks to himself when he takes tests, he talks to me, he talks to his father, he talks to his friends (who mercifully understand his need to talk). He just talks. But his talking helps him learn. Because he talks through things and about things that are incredibly complex. (The other day, he came running out of the back of the house and said, "MOM! InBev is planning a hostile takeover of Anheuser Busch. Do you think that will be bad for Busch Gardens, or do you think they'll sell the parks off to a non-hostile bidder?" HUH???)

His talking sounds impulsive because he really can't turn it off. It's the way he thinks. We have used a speech pathologist to help him work on appropriate cues in conversation. (It's a work in progress, but he has taken a few steps in the right direction.) She also helps him with noting non-verbal cues like facial expressions, etc., which he has problems reading.

I second Bookworme's thought that taking it to the next level diagnostically might be in order. We have always felt that the neuropsych exam we had done on our son when he was first diagnosed was perhaps the best money we have ever spent. (We still go back to our neuropsychologist every three years for re-testing and advice. It helps us so much in approaching school personnel and planning for the future.)

Julie

 

[gritzel4]

My Autistic son (10) likes to talk all the time about things that interest him but are not on topic. We have been refocusing him to task by telling him if he does his work etc. for X amount of time he can talk to us for X amount of minutes about what he wants to discuss. We started with a small amount of time and have worked up from there. Reinforcing his behavior in a positive way. A win-win situation.

Have you checked out NJCOSAC? They have some great information and put on a two day autism conference every year.

 

[BeckyScott]

Since you're looking for suggestions...

Have you considered going more "natural" with his treatment? Like DAN, naturopath, Feingold diet, that route?

I'm not going to say it will work. I guess I'm saying it wouldn't hurt to try. And over the summer would be the best time.

Our oldest is ADHD and while he is not Feingolded, I am strongly considering it and have been trying to do it on my own, without the Official Materials, as much as I can. I know that there are certain foods that do not "play well" with him, so I do have some reason to believe that some of his symptoms could be food-related, I just don't know yet to what extent.

Of course, if you go that route, most mainstream doctors will not be very supportive. There was an article in the AAP newsletter about diet and ADHD, so they may be aware, but depending on your doctor maybe not put much faith into the idea.

At this point in the game, though, since your child is home anyway, swinging him to an all-natural diet for the rest of the summer, along with supplements, just to see what happens, may be an interesting experiment for you.

Oh, speaking of, I'm not positive, but have you checked the Kirkman website for the Omega 3's? http://www.kirkmanlabs.com/products/fatty_acids/fattyacid_index.html I'm not sure if any of those are exactly what you're searching for, but Kirkman is very good about making supplements available as a powder or liquid. It looks like maybe the Coromega?

 

[disney-super-mom]

Possibly he'll outgrow some of his implusive talking, because afterall, all kids that age are somewhat implusive at times. So some of it may subside as he gets older.

But I would certainly keep working on modifying it as well, and hopefully over time, the therapy and his maturing will help alieviate the problem.

I know that my DS 9 displayed many spectrum behaviors when he was much younger (like when he was 3, 4, and 5 years old, he would line up his toy cars, open and close doors/drawers all the time, etc....) that he just eventually stopped doing as he got older. At that time, we thought those were some of his main issues, and we wondered how we would get him to stop.

Today I look at his hurdles, and they're completely different than they were 4-5 years ago. Today it's about his education, his placement, and his speech/language disability. I'm sure in another 4-5 years, we'll have a whole new set of hurdles/issues. As soon as one is conquered, another pops up. Such is life with everyone I suspect.

I'm just saying that, although it's very difficult and frustrating right now, to not give up, just keep working on it, and just give it time (and him time to grow and mature). It'll eventually work out.

 

[Hasil72]

Thank you all very much! My computer at home is still fried so I had to wait until work this am to reply.

gritzel4, Thansk! I'll have to check out the COSAC resources page. It lists GCSSSD, which is the school where DS will be attending social skills group in the fall. I'll try the timing.

BeckyScott, did you find it difficult to switch to Feingold? It seems more reasonable for DS than the no dairy/no wheat. THAT wouldn't work for DS because milk, organic yogurt, and PB&J are what I can guarantee he'll eat. Texture is our downfall. I'm willing to try. Kirkman didn't have quite the level of Omega-3 I was looking for but thanks anyway. I'll go back to them if I can't find what I'm looking for. The Res-Q Me Too had much higher levels of DHA/EPA than what I'm finding online.

DS's verbal impilsivity is more like the "Are we there yet?" jokes that people tell. He'll ask a question, you'll answer, and a minute later he's back asking again like you never answered him.

I'm thinking of trying something new. Instead of if you earn this many stars you can have this reward, trying to use routine tasks like you earn five minutes of video game time if you brush your teeth and make your bed in the morning but you'll lose five minutes if you have to be asked more than twice.

Another thing has been the difficulty of enforcing "the routine" while I'm at work. Unfortunately, I have to work FT. Just can't make it on DH's salary. AND I carry the health benefits. Needless to say, structure is lacking from 8-4. I'm now trying a schedule on the fridge for the kids to check off their activities so Ihave a better idea of what they're doing with their time.

Thanks again for the suggestions!

Lisa

 

[Luv Bunnies]

Possibly he'll outgrow some of his implusive talking, because afterall, all kids that age are somewhat implusive at times. So some of it may subside as he gets older.

I agree with this. My son with Asperger's just turned 13. He has come a long way since he was 9, although there's still a ways to go. Part of it is gaining maturity and becoming more self-aware. They start getting a better understanding of how they come across to others. All kids go through this process but it takes ours a little longer to figure out how to change their behavior.

It sounds like you're doing a lot of wonderful things for your son. But, it may take some time before it all comes together and starts really clicking for him.

 

[BeckyScott]

Hasil...

My youngest is HFA, and we took him gf/cf, and then had allergy testing and also pulled egg, apple, pineapple, blueberry, cocoa, onion, (um what else) all the nuts, and we try to steer clear of soy.

So we were already shopping at the health food store. And some things I was only stocking stuff that he could eat. So like for example, all the breakfast cereal in the house is good for youngest DS, and just by coincidence happens to be all-natural-organic-blah-blah-blah breakfast cereal because that's pretty much what you end up with when you go shopping for gfcf cereal. Or I would make chicken nuggets for dinner, but I'm not a big fan of making four seperate dinners, so I made organic allergy-friendly chicken nuggets for all of us. Some of the food is seperate, the whole family isn't gfcf etc, but his food is so blended in with the rest of the household that just by default oldest DS is eating a lot of the same food.

So. Taking oldest DS to a more organic diet wasn't a huge obstacle. After you take one kid and knock out all his allergies, shoot, what's one more thing?

Feingold takes it a step further, though, and that part of it I haven't done yet. Besides the all-natural part of it, they also knock out salic-- (salicilydes? salicilites? yikes how do you spell it?) Lots of ADHD kids can't handle tomato, I know you're supposed to knock off the tomato, and we haven't done that. And there are a few other things like that. And while youngest DS went along with the whole gfcf thing all right, he understood the allergy testing, I fear the day I tell my 10-year-old that the ketchup is going away.

 

[Hasil72]

You guys are the best!

I'm not quite sure we're ready for Feingold but I'm going to make an effort to serve more organic than not. Luckily, we haven't run into any food allergies yet and we already try to avoid as many artificial colors/sweeteners, etc. as we can. I'm trying to be more aware on all sorts of levels.

For so long, ALL the clinicians kept telling us that DS was functioning so well that it would be difficult for anyone to tell he was different so don't bring any attention to it. We've always been very open with people about DS, and I'm glad that we were, because now certain aspects are more pronounced. It just seems that every time we think we've cleared a hurdle, another one (or three) is right there waiting. I can't complain about my frustration because I know how frustrated DS must be.

Thanks again for all the suggestions!

Lisa

 

[BeckyScott]

Well the bonus is, going more natural/organic isn't just limited to special needs kids. Really it's quite trendy right now, throw it all right into your re-usable shopping bag and look like a Progressive Eco-Aware Mom. So it's not like he would stand out. And it's much easier to find the food now.

 

[tweedlemom]

Try Coromega. It has fish oil, but it is almost like an orange pudding. You can find it at GNC.

 

[Hasil72]

Thanks, tweedlemom! I'll do that.

BeckyScott, I know what you mean. DS is my little "tree hugger" anyway.

I spoke with the head of the social skills group last night and I am so excited. It really seems like they have their act together and have some really great activities. Then they continue into a summer camp. Best of all (and shocking for NJ) it's totally FREE!

Great timing too. DS had a rough night at karate. Second meltdown in two weeks after none in a few months.

 

[ericafny]

Hi. I just found this thread. I am a special ed teacher here in NY and I thought of something that may help your son. They are called Social Stories and they are stories about different social situations that explain certain things in a way that a child (yes even an ASD child) can understand. Carol Gray is the pioneer in these social strories and her's are the best and original ones that are used. They are very concrete and to the point. Here is a link to her website: http://www.thegraycenter.org/

I have known many professionals in the field that use them and are very successful with them.

Sometimes I find plain old trial and error works best too. You never know what is going to work unless you try it.

Erica

 

[Hasil72]

Thanks! I'll take a look.