Just diagnosed with PPDNOS

[Once Again]

I've lurked on the welltrained mind boards off and on for years, but this is the first time I've posted in a long time. My three year old daughter was just diagnosed with PDDNOS. I've been frantically reading all I can on the subject and came across something called the ABA program. I live in a place where it is not possible to get the school system to pay for professionals to do it and we cannot afford to hire our own professionals. So, I want to give it a try myself. Has anyone here tried or heard of someone trying this on their own? Any suggestions, hints, advice etc???

 

Laura

[JFSinIL]

One of my twins was thus diagnosed, too at that age. We did set up an ABA program, and found teenage homeschool girls made great therapists! One book you must get is: Teach Me Language: A Language Manual for children with autism, Asperger's syndrome and related developmental disorders. (Spiral-bound)

by Sabrina, Ph.D. Freeman (Author), Lorelei Dake (Author), Sabrina K. Freeman (Author)

 

It has the material you need to start, on your own, a basic 1:1 therapy program.

 

I will post more later - got to pick a kid up from band practice!

[JFSinIL]

and I've found three books here I no longer need. They are:

 

From Emotions to Advocacy - The Special Education Survival Guide

(the authors. Pam and Pete Wright, have a great website http://www.wrightslaw.com )

 

Behavioral Interventions for Young Children with Autism

 

and Teach Me Langauge

 

My son is now 16, so am not using these anymore. Send me a private message if you want me to send these to you.

 

Also - One difficulty is that not only do you need to learn about many different therapies, treatments, and potential support services all at once, but also have to decide what help to seek first - set up an ABA program or do floortime? Try a special diet, or do an overnight EEG? Arrange for private speech and OT, or accept as sufficient what your local school offers? It helps to reach out to other parents, both on the phone and in person, and the best place to find them is through a support group. Try to contact your state Autism Society of America http://www.autism-society.org/site/PageServer

for more info on finding a local group.

 

now I am being booted off the 'puter so a kid can do schoolwork!

[JFSinIL]

1. if you do ABA, beware of the pitfall of helping the child

respond to the discrete trail task. Keeping a calm demeanor and only providing reinforcement for a correct response is vital. I never could get this right - and my son refused to "let" me do therapy, anyway (he seemed to have me pegged as Mom - that was my job, not being a therapist. So I ended up running the program, getting supplies, zeroxing trial sheets, etc.)

 

2. make your own cards for many beginning programs using 3"x5" note cards and lots of cut-up magazines. There are places that will sell you more costly photo cards of letters, animals, shapes, objects, verbs (yes, even verbs - i made so many cards illustrating "running" "jumping" etc!) but it is cheaper to make your own.

 

3. Do not put all your eggs in one basket. Many kids (not all - but many) also respond and show some improvement on changes in diet, speech therapy, occupational therapy, etc. etc. My own son is one of a subset that needed anti-seizure meds to stop abnormal behavior in deep sleep cycles in the language part of the brain. When he is on meds his auditory processing is vastly improved and he can learn and retain language. He also used to have the "staring spell" absence seizures. Not all doctors will look for or treat this underlying stuff (yet). Have your local library order this book (or get it yourself):

 

Autism and its Medical Management

A Guide for Parents and Professionals

 

Michael G. Chez MD

 

Hardback, ISBN: 978-1-84310-834-4, 224pp, April 2008

 

Dr. Chez was our son's pediatric neurologist. He told me about this book two years ago and I am so glad to see it is FINALLY coming out - THIS MONTH!!!!

get it get it get it get it get it

[Laurie]

I just sent you a Private Message.

[JFSinIL]

I just sent you a Private Message.

As of 9:10 pm it hasn't shown up in my box :-(

[JamBerry]

We did ABA for 3 years, both at home and in school, when our ds was dx'd just before he was 3yo.

I HIGHLY recommend that rather than doing ABA you instead look into RDI. http://www.rdiconnect.com

ABA is wonderful for teaching your child skills and words, or for getting you through a particular situtation. After three years of very good ABA, we had a child with more skills and more words, but who was JUST as autistic as when we started. It wasn't until we ditched ABA and started RDI that we began to help him to become less autistic. And yes, he was (and is) still learning skills and words/language too. In addition, he is no longer viewed as a project, a burden, or even a family pet. RDI turned him back into our son, and turned us back into his parents instead of therapists. Feel free to email me if you want more info on RDI. There are some great blogs out there, yahoo groups, and plenty of info on "Guided Participation" (the underpinnings of RDI).

Likewise, I also recommend looking into some of the biomed interventions. Autism is not a psychological disorder, but a bio-neurological disorder. Some of the biomed stuff (like special diets, supplements, etc) can help a lot with certain biological aspects of the disorder (and the resulting impact on the autistic behaviors and learning). RDI works on the neural underconnectivity issues inherent in autism (unlike ABA).

Mostly, though, remember that your child is still a real person, a real child, and the same person that she was before she received an official dx. She's not a project. She's your daughter, and just as human as you. If you can keep that in mind, it'll help you both along the way!

Pam

<><

[Claire]

As of 9:10 pm it hasn't shown up in my box :-(

 

Are you checking your "private messages" in the upper righthand corner of the forum screen? Or your email messages? (I ask because someone I PM'd didn't find the message because she thought it would be an email.)

[Holly IN]

I HIGHLY recommend that rather than doing ABA you instead look into RDI. http://www.rdiconnect.com

ABA is wonderful for teaching your child skills and words, or for getting you through a particular situtation. After three years of very good ABA, we had a child with more skills and more words, but who was JUST as autistic as when we started. It wasn't until we ditched ABA and started RDI that we began to help him to become less autistic. And yes, he was (and is) still learning skills and words/language too. <><

 

I ditto everything Pam says!! We did ABA at home with me doing it all for 2 years. It did help her get her language going but nothing else. She was still autistic as she was in the beginning except had more language. We decided to let her be her. We did everything very naturally. Then we found RDI. We are not doing this formally yet as we are still in the learning stages and in the process of deciding whether to get a consultant or not. Anyway we are finding that we have been doing RDI without knowing about it. Our dd is getting better each day. She still has language and anxiety problems. She is becoming our dd again. The point of RDI is to give the child the highest level of quality of life they can get. Not necessarily a cure per se but an improvement over quailty of life. RDI hits the jackpot for us and it is a keeper!

 

Holly

[Once Again]

Thanks everyone for the advice. I will look into RDI. Is RDI the same thing as DIR/Floortime?

[JamBerry]

No, RDI is very different from DIR. The letters do get confusing, don't they?

DIR/Floortime is more child-led, whereas RDI is parent-led through Guided Participation. There are other differences as well, but that's the most obvious one off the bat.

Pam

<><

[JFSinIL]

RDI, DIR, ABA...I am so glad there are folks with younger kids than mine (17 in Sept.) who can chime in on the newer stuff that is out there. Gives one more options to find something that is both a good "fit" for the family AND effective for the child. :-)

[Guest tclosser]

my son has recently been diag'd with ppdnos A typical, does well in school(above grade level) but his mind will not allow him to see things in the grey areas, its black or white with him, he gets in big trouble due to

not being able to see the views of others and will not cooperate and often has meltdowns during school trying to get teachers and staff to understand his point. needless to say they find him disobediant and a behavior problem. His symptoms are so mild he does not qualify for an IEP and so far the school has no trained staff member to serve as a intervention person for my son, last year he had after school detention and Saturday school for being "disrespectful".

 

Keep fighting for what you need for your child,I work at an Elementary school who has three full time ebd aids because it is a title 1 school and they receive special funding, we also have alot of students with behavior needs and special care during the day. My son's school does not have 1 person I can turn to as an advocate for my son. Currently I am working with his doc's, therapists and quidance counselor to provide him with some kind of protection.

 

 

 

 

 

 

 

 

 

 

 

I've lurked on the welltrained mind boards off and on for years, but this is the first time I've posted in a long time. My three year old daughter was just diagnosed with PDDNOS. I've been frantically reading all I can on the subject and came across something called the ABA program. I live in a place where it is not possible to get the school system to pay for professionals to do it and we cannot afford to hire our own professionals. So, I want to give it a try myself. Has anyone here tried or heard of someone trying this on their own? Any suggestions, hints, advice etc???

 

Laura