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Is it even possible to provide the amount of therapy the diagnosis advises?

Posted by on Feb. 14, 2013 at 2:50 AM
  • 15 Replies

Hello Moms,

My 4.5 year old was "officially" diagnosed last week and when I read the psychological assessment and a  recommendation of a minimum of 25 hours a week of ABA, OT and Speech I panic.. I've spent a week calling clinics, therapy places and have gotten no where near even getting him an appointment for an evaluation. The thought of not being able to give him what he needs kills me but how long does it take!!! I just started the process with the school district and have many meetings setup and an IEP fo rmid April but that could mean no therapy till May! My son at 18 months did Speech and OT for delays untl 3 and then he tested "normal"   I had mentioned autism concerns but was told over and over again that " they didn't see that for him" and I didn't want to see it in him either. Well it's obvious now so I'm in full focus of trying to get him help but it is a maze! Everyone is nice as can be but too booked. I never knew how prevalent autism is until now. I'm hoping I can read and learn about ABA and if I have to try to do it myself as long as there is no way I could harm him?




by on Feb. 14, 2013 at 2:50 AM
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Replies (1-10):
johnns
by Johnna on Feb. 14, 2013 at 8:14 AM
Feeling a little overwhelmed? We had our diadnoses back in Nov. My daughter is 4 1/2 yrs old, we had already had her in speech. It wasn't obvious with her, hoping it was just speech delayed. Got her in speech at 3. After about 6 months, the therapist recommended we see a developmental pediatrician. That's when we got the news! We were able to get most of the therapy provided from the public school- special ed for 3-5 yr olds. After all the meetings, she finally starts next week! So excited for her! Anyways, that was what the doc had recommended. I had a friend at the school, so I didn't go to the school board, just made an appt with special ed teacher. Good luck to you. Hang in there, lots of appts ahead of you, one day at a time!
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LaurieMomof4
by on Feb. 14, 2013 at 8:52 AM

Hi there. My 5 year old son just got a similar diagnosis. What state are you in? There are various avenues for therapy. My son is in special education kindergarten where he receives speech and OT. He was also recommended 20+ hours of ABA. Most people in California receive behavioral therapy through the regional center system (state service). These are all backlogged, long wait lists, and you won't get the number of hours required for ABA to really be successful. Last year here in California there was a law passed the private insurance must cover ABA. We were able to get his treatment preapproved, our doctor at UCLA referred us to a Behaviorist, they've been observing and evaluating our son and ABA will be starting within the next few weeks. Our schedule will likely be 3-6 Monday through Friday while school is in session, plus Saturday and Sunday mornings. Obviously this will be a big lifestyle change for our family. We have 4 busy children all in sports and activities but all of us are committed to making it work. From everything I've read it sounds like intensive ABA is our best shot. Our son is very high functioning, very bright with a great vocabulary, but all of the bevahiors are really impacting his ability to function, maintain friendships, and learn.

JTMOM422
by Brenda on Feb. 14, 2013 at 9:10 AM

Ds only gets 10 hours of ABA a week. Plus 1hour early intervention services. 1 hour speech and 1/2 hour OT. I really wish we could get more ABA. We are looking into a ABA based school. We don't have one around here but rumor is 2 companies are talking about one. He is being evaluated for preschool through the district. 

N.Carter2001
by Bronze Member on Feb. 14, 2013 at 9:35 AM

I knew my 4 year old son not getting much therapy. And he has autism. He goes to preschool 2 nd year now. Speech 20 minutes on Tuesday. Thursday it was 30 minutes for pt. but ot she don't know what she doing so she has to come and have pt girl help her. So he gets ot and pt at same time.  We don't get aba therapy. We trying to get him more therapy at autism clinic. He get ot starting next week. We had to stop because clinic in bigger town. We did not want to drive in ice or snow 45 minutes away. And speech same problem so we had to go back on waiting list.

VioletsMomTown
by Robyn on Feb. 14, 2013 at 10:03 AM
3 moms liked this

We do floortime therapy, and its recommended to do 40 hours a week of that!!! Its a full time job, somehow squeezed into our lives when both myself and her dad are working. But, the thing is, you kind of work it into your daily routine, if you can make every interaction a learning experience, and come at things with the fundamentals of the therapy in mind, then its not so hard to work in those many hours. As for ABA, we have been waiting almost a year to start, and even when we do, its only 2 hours a week, so sometimes its best to find a therapy that can work for you at home, that's why I like floortime. Also, once they are in school they will likely get hours there too.

hwifeandmom
by on Feb. 14, 2013 at 10:15 AM
1 mom liked this

Although those recommendations may be for the ideal amount of therapy, I discovered with my kids, there was no way I could provide them the amount of therapy recommended.  The school wouldn't provide any of the therapies, and my private insurance would only cover a small portion.  Insurance would have covered a little more speech therapy than what we actually did with my son but I had to limit the amount of speech therapy because it was taking too much time away from his school classes.  I couldn't do therapy after school because of obligations with my other kids.  I think as parents we often suffer guilt from our inability to be the absolute perfect parent and provide every last possible positive support for our children, but I think you need to find balance between what's ideal and what's possible and do the best you can.

I've also discovered that the amount of therapies recommended is a good guess, but there are no guarantees that all of that therapy will provide the outcome you hope for.  Because of my son's unique speech patterns, the therapist referred us to a specialist for testing.  After testing, the specialist said that it was a newer speech pattern they were just beginning to see more of among autistic kids.  Because it was a newer speech pattern, there was no specifically developed method of speech therapy to improve it.  The best the professionals could recommend was some therapies to try that might help, but there were no guarantees.  I think that's the same with all the therapies.  Every child is different.  The professionals make their best recommendations for what will probably benefit the child, but there are no guarantees even if you do every last thing they recommend.

Do your best, and don't forget to enjoy your child and allow him to enjoy living in the process.


Telephus44
by Member on Feb. 14, 2013 at 11:22 AM
1 mom liked this

I wouldn't freak out about not being able to provide the recommended amount right away. 

My son qualifies for 28 hours a week.  Given that he also goes to school full-time (first grade) he'd never get a chance to be a kid if we had him in ABA for 28 hours on top of school.  We are doing between 8 and 16 hours now and it's definitely helping.  I also want him to have time to be himself - be a kid, play a sport, go to church - and not spend every moment in school or therapy.

 

kajira
by Emma on Feb. 14, 2013 at 1:00 PM
2 moms liked this

Okay, deep breathes. First, It's going to be okay... Second, while early intervention is helpful, it's not the end of the world if your child doesn't get X amount of hours per week by a trained specialist.

What you CAN do - is get books on different things you can do and start working with him yourself, then you can relax a little, you ARE actively doing therapy with him, even if it's YOU doing it.

Second - Go through the school district, If you work with him and continue doing the things you've already learned, you will/should continue to see progress.

I'm an autistic adult and i've NEVER done the recommended therapies... even as an adult I was recommended for speech therapy.

I've managed to go to college for a couple years, get my drivers license, and get married and work from home all with out ever doing half the recommendated things in my life - I worked on it on my own, and my spouse supported me and did things with me instead of paying someone else to do them.

(Example, he's the one who helped me learn to write as well as I do, how to answer a phone and what responses to give, and other skills that didn't come naturally to me when we first met.)

Caring about someone and being patient and willing to teach, sometimes can do a lot of good too. 

Alot of the "therapy" they are talking about isn't sitting in a clinic for 25 hours a week, that 25 hours a week they are often talking about is teaching the parent how to do those tasks/skills at home... so what you can do is start figuring out what KIND of therapies they are recommending and go about learning how to start implementing them on your own at home.

Every time you work with your child or an autistic person,you are doing some good.... if you want to call it parenting, or being a good friend or partner, or a loving mother, whatever - but you ARE working with them when you are spending time with them and they are learning.

MomOfOneCoolKid
by Gold Member on Feb. 14, 2013 at 5:02 PM

I have started my son in ABA, ST, and OT. I try to do it at home too.

At ABA, they do a curriculum called ABLS-R. http://www.difflearn.com/product/Revised_ABLLS_Set/Early-intervention-autism-teaching-tools

There is a very specific way to document. I asked to be trained by the ABA therapists so they showed me. It's kinda hard for me to show you over these little messages. Its been about 3 months and my son has made good progress.

But even if you don't document "perfectly" spending time with him and using suggestioned curriculums should help. Though it is still daunting.

I'm right there with you.

Basherte
by Silver Member on Feb. 15, 2013 at 7:44 AM

You can harm him, but it pretty much takes something like abuse to do so. I know you won't do that.

Use 'hand over hand'. When you ask him to get his cup. take his hand and have your hand over his hand while you help him to pick it up. Then praise him. I don't know where you are with what he does do and doesn't do already. 

Google a lot. Read it all. Slowly. Don't be afraid to take a break. 

I had it kinda easy. My son was diagnosed while he was still having early intervention come over. 

They helped me a lot with my son. He's 4 now and is in preschool for kids with special needs. They are going to be helping both my son and I with the transition from preschool to kindergarten with a full classroom full of kids. 

He will have an active IEP when he goes. So, I'm really lucky. 

Good luck finding what your son needs. I'm sure it is possible. It will probably just be frustrating as all hell to get it all.

Autism isn't all of a sudden prevalent, I think that it's just that it's more recognizable.  People know a lot more about it now, than they did even a few years ago.


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