New neurogist, new opinion

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isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220
New neurogist, new opinion

I took Josh to his appointment with the other neurologist. I was very matter of fact with.me, but overall seemed like he is a good fit. He thinks Josh has PDD, SPD, and that he is showing signs of ADHD. I dont know how I feel about the last one though. He said yes there are issues there and yes he can grow out of them, but I also need to step back and take a look at how I am responding to him. I get what hi is saying. I tend to let Josh get away with acting certain ways and that isnt helping. He wants us to do at 24 hour vidio study but dh is adamently against that because Josh reacted so badly to the EEG. Now I am not sure what the next step is. I am going ro check out the ABA therapy on thursday. This is another thing dh is not sure about because it would consist of 10 to 4 hours a week of therapy and he thinks this is too much. I am sure we will be doing atleast the OT. I just wonder if he would benefit more from the ABA therapy more. Hmmm. Decisions, decisions.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I'm glad you went. One thing about the therapy is that the sooner you get started and the more you do the better chance for helping DS. It would probably be better to dive into it and after some considerable time if it's not going according to plan then reevaluate. Dakota was in therapy starting at about 16 months old and I really believe it helped a TON and I really credit it to where he is at today.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I agree with Angela. The earlier the better and re-evaluating over time makes good sense!
It's always easier to hesitate and delay, but not always smartest.
Glad you feel this neurologist is a good fit!

Joined: 05/05/04
Posts: 435

Good luck!! It's possible that by diving into a ton of therapy now he'd outgrow some. I know my friend's son had lots of sensory therapy and then didn't need it anymore once he started school.

isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220

So I found out today that my company doesnt cover therapy for an autism diagnosis. That is horrible. If he had an accompanying diagnosis besides SPD then they would cover therapy except ABA. So since ABA therapy is far more than I can afford I guess we will be going with OT when he gets off their wait list. Hope it doesnt take to long..

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

We had to fight with ours to cover stuff. And it's even in their policy to cover the therapies until he turned 7. My DH's union finally got involved and then they started paying 100% and they even went back a bit to pay stuff. It really is quite sad. I know that a LOT of people try to do some of the ABA on their own. In our school district our Special Education PTSA actually has a support group once a month for parents with children on the spectrum. They even have some classes. I'm not sure but maybe you could contact your local school district to see if you have something like that. Or try to find another support group even if it's not through the district. I say that because they may know of local resources to help you.

Joined: 05/05/04
Posts: 435

Oh man. I'm sorry. That's horrible. I have to fight to get some of Tom's dental stuff covered (related to his teeth around the cleft). I didn't know that insurance could say no autism. That's messed up.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"NatalieL" wrote:

Oh man. I'm sorry. That's horrible. I have to fight to get some of Tom's dental stuff covered (related to his teeth around the cleft). I didn't know that insurance could say no autism. That's messed up.

Yes insurance coverage in this country is messed up with the things they are allowed to deny. It's why I've always wanted insurance reform. It's one thing to say no to someone who wants to get breast implants just because (not part of reconstructive surgery that's completely different), but it's a whole other thing to deny a child or person treatment to help them live a somewhat "normal" life. Makes me angry.

isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220

Well I now found out that the All Children's hostipal occupational therapy office I was going to take Josh to just lost 3 OTs and has frozen the waitlist. The next closest office has a waitlist of 13 kids. We are looking at December being the earlist they can get him in. Ugh. I guess I am off to research sensory diets and sensory therapy to try and put something together myself for now.

Joined: 05/05/04
Posts: 435

good luck!! Do you have any friends who are OTs? Or who have kids who've been to OT? I know my friend's son had paint brushes rubbed on his arm. I don't know what else they did though.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I'd get on one of the waiting lists now. You can always cancel later on if you find other solutions.

isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220

I put him.on both the wait lists. Lol

I dont have very many friends and none that are OTs or who have taken their children to one. I am kind of running blind..

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Some of the things we do at home with Dakota are:

swinging (we have a swing system we installed in our family room so he can do this year round)
jumping on the trampoline (also have a mini one for inside as well)
bear hugs
crab walk
wheel barrow walking
squishing him between 2 beanbags
playing in whipped cream with his hands or shaving cream (if he doesn't like the texture he can wear gloves and use a brush to start and then work up to doing it without)

I'll let you know if I can think of anything else.

Joined: 11/28/06
Posts: 848

I didn't realize you were so close! We live in Lakeland and use All Children's and St. Joseph's (doctors, no experience with therapists).

I'm sorry that there is such a wait list for therapists. Have you called Child Find to have him tested through them? If not, that's what I'd recommend and he could possibly receive services through the school system as soon as August. You could also contact CARD or CFAI and they may be able to link you with some other therapists.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"Alana*sMommy" wrote:

Have you called Child Find to have him tested through them? If not, that's what I'd recommend and he could possibly receive services through the school system as soon as August. You could also contact CARD or CFAI and they may be able to link you with some other therapists.

That's a good idea. We went through our school district and they helped Dakota a ton.

Joined: 12/01/05
Posts: 1000

I just looked it up, and Florida has an Autism anti-discrimination law. Insurance companies are required to cover ABA services. Here's the article on CNN:
http://www.cnn.com/2010/HEALTH/09/17/autism.aba.legislation/index.html

Joined: 12/01/05
Posts: 1000

ABA is perfect for any kid on the Autism spectrum, and in fact for any kid. It is based on the premise that every behavior serves a purpose. If a child engages in a behavior that you do not want them to engage in, you just figure out what purpose the behavior is serving (what they get out of it), and change your own behavior so that either they don't get that reward from the behavior or they are able to get that reward in a more acceptable way. For instance, if your child engages in a behavior to gain attention, you would be rewarding him by giving him any attention. So you would engage in "planned ignoring" to extinct that behavior and would teach him to ask for help as a more socially acceptable means of gaining your attention. Does that make sense?

Even if you can't get ABA therapy for your child, you can learn some of the principles and apply them at home. Even if you do get therapy, you can make it 100x more effective if you learn the principles and apply them at home.

Here's a great resource for learning how to engage your ASD child socially. The games are based on your child's current level of functioning. There's also a lot of great tips for parents of ASD children to engage their children throughout the day.
http://sites.google.com/site/autismgames/

Joined: 12/01/05
Posts: 1000

Also, you may be able to get him medical assistance based on his diagnosis and get access to more services that way. You should look into it.

isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220

For tjevins

"Alana*sMommy" wrote:

I didn't realize you were so close! We live in Lakeland and use All Children's and St. Joseph's (doctors, no experience with therapists).

I'm sorry that there is such a wait list for therapists. Have you called Child Find to have him tested through them? If not, that's what I'd recommend and he could possibly receive services through the school system as soon as August. You could also contact CARD or CFAI and they may be able to link you with some other therapists.

Oh wow you are close. My parents live in Lakeland and I go visit them once a week.

he is actually in school.through Child Find. They dont do anything for the sensory issues though. So he is basically not reponding well in class and there is not much they can do about it.

Asfor the insurance, I am not sure if the company is getting away with it because their headquarters is based in Texas. Thanks for the info and links though.

Joined: 12/01/05
Posts: 1000

It doesn't matter where the insurance company is based. If they are providing insurance in Florida, they have to comply with Florida law.

Joined: 11/28/06
Posts: 848

Is he in an ESE Pre-K class? If so he could possibly qualify for therapy through the school. And even if he doesn't the OT should be able to provide the classroom teacher with suggestions to deal with the sensory and attention issues. Don't let them tell you there's nothing they can do about it. If he isn't progressing in class and meeting his goals then they HAVE to do something about it.