Autistic Son, Regional Centre and ABA Therapy

Do some research for UCLA (or other big hopsitals). They have a lot of studies going on for Autistic children. My daughter is taking part in a study at UCLA and it is free-exams, therapy, tests, everything. I see signs for Autism studies up there all the time.

Hi K.,

Run, don't walk, to www.tacanow.org. This is a not-for profit support group for families of autism run by families of autism. They have all 'been there, done that' and have the means to help you in this area. There is even an attorney on hand to assist. Most of what you ask now is information that will be found on the website.

Hi K.,

I feel very strongly on this issue. I am a SLP and have worked with kids on the spectrum in California for many years. As you know, every child in the world is different, and kids on the spectrum- although having some similar manifestations, are very different. You need to be careful when you read research. Research does support more intensive therapy, but ABA is not the "golden bullet" that "cures" autism. ABA is a good therapeutic approach, and also has a lot of people pushing it. There are other valid approaches as well- such as floor-time, RDI, social stories, etc. There are also some things that are promoted that have not found to be effective. Kids with autism do need early intervention, and tend not to learn incidentally -like neuro-typical developing kids are more able to do, so do need more hours of intervention. How that intervention looks though can and should vary per child. Kids with ASD really benefit from the parents being involved in a team approach with the specialists working with the family. So some of the "25-40" hours can be with the child involved as much as possible in age appropriate toddler activities with the parent and other support as needed. It doesn't need ( shouldn't be) hours in a sterile room at a table with an interventionist of some type.

OK- I'll get off my band wagon. No, there isn't a law on how many hours of any therapy is offered. It's natural as a parent that you want the best and most for your son. If I were in your shoes, I would express my concerns to Regional Center and say how you want to be a big part of the team. Concerned and interested families are important. Are you comfortable with your case-worker? If you have a strong worker, they can be helpful in making sure whatever is available in your area will be offered for your boy. There also is a limit financially to what can be offered for people with disabilities. Your son is entitled to a "free and appropriate education"- but so are all the other kids with needs. As a SLP in the schools I can honestly say that yes, my kids progress on their IEP's, and yes I would like to provide even more service, but can not because I already have a full work-load. When parents and I can work together, and families don't expect the schools to "fix the problem", the kids reach their maximum potential. I believe that is true for all kids, whether typically developing or not. I am sure that the majority of special educators feel the same way, and experience similar situations.

Congratulations on your beautiful little boy and my sincerest hopes for a good journey together learning about your son's strengths and weaknesses as he grows and develops.

25-40 hours a week is way too much for his age. I work with preschoolers that have Autism, and the most any of our kids got was 10 hours a week. ABA is very intense. Also, your son may not be as severe so he may not need that many hours. Personally I think 6 hours is good for his age. I've been doing ABA for almost three years now. Hope this helps.

K.,

I work with Regional Center clients and know that you can always ask for more of what you think your child needs. The IPP must be approved and signed by you before the Regional Center can begin providing services. If you believe these hours are inadequate to meet his needs then let them know and do not approve the IPP. If you already have and you're currently receiving the services, ask for a re-evaluation and an addendum IPP to reflect any changes that are made. YOU are the consumer and you have the right to get what your son needs to lead a normal and healthy life. Remember that you are in the position of power and not the Regional Center. If you don't approve the IPP they cannot provide services (and won't get paid by the State). Their "offer" of services can be negotiated so don't just agree to whatever they tell you if you believe it's inadequate.

Good luck,

B. D.

Hi K.,
I'm a service Coordinator for a REgional Center.As far as I know, there is no law that states a limit on those hours. I can only imagine that because of the budget, you'll get some run around. Put a good case in for the reason the services are being requested. If you request the services and they deny them, you can always appeal then they'll have a mediation meeting where you'll make your case. They'll probably take into consideration how long he has been receiving the services, what progress, or lack there of, there has been. Has there been a sufficient amount of time for him to show progress? Lots of luck, but don't stand down. Keep up and push hard if need be. The parents that do usually are the ones that get the services.

Hi K...my name is Penny and I am the CEO of Special Beginnings Inc.; An Early Intervention Network. I am vendored with Westside Regional Center in Los Angeles. Let me try to answer your questions, and please feel free to email me back if you have other questions or concerns.
Most regional centers usually give 1 hour 1-2x's per week so you pretty much got the max for ABA; however, I would ask if they have early intervention and maybe you can get both but if you have an option; unless he has some behavior problems I would strongly suggest early intervention at the rate of 1 hr. 3x's per week instead of ABA. Remember all interventionists are there to help and support the family when they are not there so lets start with what you got. Now, after the first report is written you can reassess his needs and then see if he still needs additional hours, have the professionals write that in their report and see what happens. In my experience if you overload a small child at his age they sometimes become so overwhelmed that there is very little progress. I know that you are concerned and confused right now but give the professionals a chance and see what happens. Look for support groups, the regional center usually has one and it will really help. I just go finished working with a three y/o whom everyone told me that her behavior was just out of control. In a very short time, and keeping the boundaries consistant and strong she improved greatly to where the teacher was extremely thankful.
Again, please feel free to email me with questions and/or concerns.

My son just turned three and has had ABA for five months. I think that you'll find that what your young son is getting is going to be plenty for right now. Please don't feel that you have to beat the clock and add the hours right away. Wait and see how it goes. In the meantime two books that I highly recommend are Engaging Autism by Stanley Greenspan, and Communicating Partners by James McDonald. These will give you excellent ideas for working with your son that I feel really complement the ABA. I have seen progress with my son using their ideas in addition to the ABA, and it's a lot easier to use throughout the course of everyday life.

The most we ended up with was 19 hours total including speech and ABA together. I would sit in on ABA sessions so I could learn how they do it. I also recommend attending any parent trainings offered through Department of Education or Regional Center or your ABA provider. Since you are with your son the most, you can have the most impact if you are using the same ABA techniques with him. Also talk to your ABA provider (either the director or supervisor) and ask them to push for more hours for you. As the reviews come up to evaluate progress, always have them ask Regional Center for more hours when they are writing their reports. You are your child's advocate and you need to fight for what you think he needs. It may be unrealistic to try for 25-40 hours but getting as close to 20 hours as you can is not unrealistic. I am not sure how things are now with the State budget crisis compared to 3 years ago when I was in your shoes, so things might be harder since I am guessing funding is tighter. Everything you do for your child now will make a big difference later. I am amazed when I look back and see how far we have come. Hang in there and Good luck.

www.autismtreatmentcenter.org
it's a website for Son-Rise program,created by parents of an autistic boy diagnosed same age as yours.After 4months of working with him intensly/by themselves/ he had no signs of autism and no delays.
M..

I can not answer your question, but I wanted to lend some advise. My nephew has PDD, another form of autism, and they stopped feading him wheat and they saw a difference (remember, wheat is in almost everything). I would also stop vaccinating going forward. Look into alternative remedies as well that could help him.

Good luck

Be there during the therapy so you can continue it at home. If you learn what to do, you can keep it up. Also, you probably qualify for Healthy Families or Medi-Cal for your child. You should look into it. You are very lucky to even get the hours that you do get, for FREE.

You have the right to appeal during your services. Just call your main RC office.I recommend you be timely about it because services come to an end once the children turn 3.

wow i am with you my son is 3 and we recently received the Autism diagnoses. he has aged out of regional center so now we use the local school districts services. my son has only received 1hr one day a week in a group speech class! that is it. needless to say i will be having an IEP very soon with the district. i am very interested in answers to this question thanks for asking and hopefully we can both learn something.
good luck with your darling baby! please feel free to send me a message if you would like to connect.

PLEASE email a friend of mine who is an EXPERT in this field and also lives in SD. ____@____.com

Can't hurt to ask for more. The amount of services offered may be linked to the severity of his issues. But if you don't get it -- everyone is facing budget cuts -- besides fighting for more w/ a lawyer is expensive., what I suggest since you are a SAHM is to continue the therapy on your own at home. It really isn't that hard to do when you know what to do. Also I think this is better since your son is young and may not have attention span for 2 hrs at a time -- you can break it up at home into 15 -20 minute sessions (or what ever works best for you and your son). My daughter started w/ 4 hrs of OT/PT, but my insurance ran out after a few years. Her OT was great about suggesting what to do at home. There are books on activities to provide a strong sensory diet as well. -- The key is to make home therapy into playtime. There are also social network sites dedicated to those dealing w/ autism. For example: http://autismspeaksnetwork.ning.com There are other resources on line as well. Things do get better.

Hi, I used to work for the regional center. First of all, Great job getting your son the services he needs. You need to contact your service coordinator and inform him/her of your concerns. How long has he been receiving therapy? It appears only two months??? Give it some time, typically every six months you should have a meeting with your coordinator to update their file for progress. If your son is not progressing then it would be a great time to request additional services. Please keep in mind California was hit with tremendous budget cuts and unfortunately important things like education and social services get cut first. You have to be an advocate for your son, but please stay in touch with your coordinator. It is their job to help you get the services you need. You should also connect with other families experiencing the same thing you are for support.Good luck to you and your son!

Hi K.,

I wanted to let you know of my husbands organization and
affiliation to the treatment of Austism. He is currently
working with USC Northridge and will be conducting offical studies to validate the success of massage therapy with children and Austim. His protocls are based on scientific reasearch used in Russia. He will be offering training to both parents and caregivers.
If this is of interest to you, you may contact him through his websites www.OwellnessGlobal.com or www.GWI
research.org.

Regards,
N.

One of the bad side effects of the California budget deal is that the regional center and Early Start budgets were hacked. For kids on the spectrum under 3 (Early Start), the criteria for getting services were lowered -- so your child will need to be more severely impacted than in the past to get services. For kids over 3, they are moving toward more parent training and less direct services from ABA providers. In short, it will be very difficult to get the hours you are talking about funded through Early Start/Regional Center. The one (sort of) positive about the changes is that you will be better trained to do ABA therapy on your own. Personally, I think that's a huge burden to place on already stressed out parents and that not all parents make great ABA therapists, but that's the way the laws changing the Lanterman Act were written. (Grrrrrrrrr)

Try the UCSD Autism Lab to see if they have any studies going on. Also try Alliant University and San Diego State's Autism program to see if they have studies going on that will increase the hours of therapy you son get.

The TACA newsletters and Valerie's List (www.valerieslist.com) have great info about local programs.

Good luck.

OBSERVE your child. Since you are a SAHM, you have the advantage of being able to watch your son, try to see things from his point of view and enter his world.

I echo that you attend the ABA sessions and see how the therapists BREAK DOWN all the stuff they are trying to teach. At home, continue to do this and break down all things for your son with your words and actions into SMALL steps that your child can SUCCESSFULLY accomplish. Depending on the severity of autism in your son, you may see tremendous progress here.

Also, spend time PLAYING with your child. Get on the FLOOR and INTERACT with your child as much as you can.

Lastly, READ ALOUD and play BOOKS ON TAPE/CD so your child begins to understand the "social stories," appropriate behavior and response in the society.

Above all, ADVOCATE for your son and don't stop asking for what he needs. Best!

by all means shake up the government for all that is rightfully yours. Also find and read a book by Amy Lansky called "Impossible Cure" about her struggle with autistic son treatment. she is a rocket scientists (i'm serious, something very close to that) and a PhD who had access to all conventional therapies and had used them in conjunctions with alternatives not generally offered by official channels. i think reading this book will serve you well. http://www.impossiblecure.com/consumer-flyer.pdf
many libraries may have it too.
Good Luck
V.

My son was diagnosed right at 3 and I immediately placed him into the local Early Childhood Special Education School District. In addition, I contacted cdca.org? which is a day care association and found a center that was trained and welcoming to children with special needs. He was able to thrive there for 3 years being bused after his half day ecse classes. He is now 11 yrs old and has enjoyed years of inclusive education. He has even dealt with the transitions well from preschool, elementary, home school (not as successful), back to elementary. We are now in a new state and he starts middle school here next month. Fingers crossed it works out.

He was eventually switched to an educational only diagnsis of autism. I believe that catching it early can reverse some of the effects. I also will tell you that extreme socialization will benefit your child as that is one of the only things my son is still lacking when compared to his peers.

came across ur quest a lil late but better late then never ...u need to fight for more services he needs all the intensive therapy he can get now and it is much easier to get thru E.I. don't settle for less also the therapist who work with ur child can make a justification notice saying the services need to b increased have the aba the st and the ot write u the letter..i fought for services for my son and got 20 hours of aba,4 hr of ot,5 hours of st...it was pretty hard to get bc i live in manhattan,ny but if u don;t fight for ur son then who will..call ur coordinator speak up talk to the director @ the regional office..b prepared this battlefield doesn't end here wait till the child enters the cpse now that is a long battlefield and time consuming and the thing is this kids can't wait till something getz settled in the court this kids need all the help now!!!!!i hvae no idea how stuff works out in cali but herre in ny u sure have to advocate for ur son and ur not getting a veryy good amount of services also call ur direction center they are somewhat helpful and ask for what he NEEDS demand for it his future depends on what is done now and it is better to have sooner then later..best of luck 2 u

K.,
You sure have your work cut out for you, raising a child with ASD is not easy, but it must be a lifestyle for you. Intervention techniques NEED to be translated to your home environment. If the therapists can learn, so can you, this is your child. As a special ed. teacher, I can attest to the fact that all day we use ABA, speech therapy, OT and much of our progress goes away after the child goes home, especially after a weekend. If you TRULY want progress, make the intervention a lifestyle, because the evidence of autistic characteristics will be with your son for life, it just matters how severe. The severity is up to you and your support of the interventions.
Good luck, Wendy