sara............

iVillage Member
Registered: 03-27-2003
sara............
6
Fri, 06-30-2006 - 10:20am

can you share your RDI experience, anything would
be appreciated.

thanks,
kris

iVillage Member
Registered: 10-03-2004
Fri, 06-30-2006 - 12:12pm

Dear Kris,

Well, we have had a rather unusual RDI experience because the way Malcolm started doing RDI was in school. He spent over a year and a fourth at a relatively new small private elementary school designed for ASD kids here in NYC. The school is lovely and the school psychologist is also an RDI provider. This lovely man has trained the teachers in RDI techniques of communication and interaction, and has also taken the design of RDI -- the steps and progressions -- and adapted them to exercises and games practised within the school, usually done in groups of 7 or 8.

Because we had Malcolm in private special needs school NOT for ASD kids for the 2 years previous, which DID include the many OTHER types of interventions recommended, OT, SLP, behavioral counseling, social skills -- which were continued in equal portion while at ASD school -- we were in the unique position to see how immediately effective the RDI work was for Malcolm. He began to really open up socially and emotionally as he attended and practised the RDI, both at school and with us at home.

DH and I went to the preliminary workshop held by Drs. Gutstein and Sheely, interesting, but overwhelming. But we also had the added benefit of working with Dr. Scott for free, and he really helped us look over the 2 main big books, assess Malcolm's needs and (very loosely) adapt the exercises to what we could be doing with Malcolm at home to augment the RDI exercises. As you know if you have read about RDI, what you are doing is "recreating" the developmental stages missed by a person with autism --- shared attention, emotion sharing, building tolerance for suspense, building memory around appropriate responses, etc. Malcolm has and always had splinter skills in many of there areas already, so we started at the beginning and played games to help him in all these areas.

Of course, he was getting lots of RDI exercises all day long in school, so we didn't have to work too hard at this at home. But I would say that Malcolm has really developed lots of the beginning - middle stages now and they are with him all the time, which means the further-on steps are also developing --- which gives him alot more skills on which to build his own independent friendships --- which if you have followed my posts, you will know that Malcolm has been building strong friendships since he was little. The RDI skills have in part helped those friendships grow even more, and this is very cool.

The other sides of this also come into play... Malcolm has arguments and disagreements with his friends and struggles more now than he did when he wasn't as developed. Sometimes this is VERY tough. But thinking of how to help him in RDI terms, shared attention, emotion sharing, then applying role-playing to memory building, etc. has provided us with ways to help him and we are seeing him step up to the plate more and more, becoming more independent and self-confident in his friendships.

We never did the parent training 4 day workshop. We never followed the full big program rigidly step-by-step, no videotaping to send to practitioner, etc. At this rate we might never do it, as our "RDI" process has been a mix and match of school adaptation and parent adaptation. We did buy the 2 big books and the DVD, parts of which were useful in continuing to think about our home program. Now that Malcolm isn't at ASD school, we are still able to use Dr. Scott as a resource for suggestions and advice as to what we can work on next.

Hope that helps. Ask anything more you would like to know

Sara
ilovemalcolm

iVillage Member
Registered: 03-27-2003
Fri, 06-30-2006 - 2:41pm

Wow. thanks for sharing, glad to hear he did so
well!!

why did he change schools?

i'm having a hard time focusing my mush brain
on activities, i was supposed to have my first
video to my consultant today.....

i think i would enjoy your experience much more.

kris

iVillage Member
Registered: 10-03-2004
Fri, 06-30-2006 - 8:12pm

We have always struggled with where and how to educate Malcolm. He is very super smart and excels at academics, is way ahead of grade level in all subjects, has great study habits, schoolwork is a piece of cake for him. He is very social and yet struggles with emotional regulation. Public school inclusion, etc. is not even a remote possibility here in NYC due to complete failing system. We wish for a small private school for gifted and talented kids that does inclusion for ASD kids, but there is no such thing. Malcolm was needing both more social challenge than he was getting at ASD school and much more academic challenge, by the middle of second year at ASD school he was really getting bored. And he had made SO much progress socially and emotionally.

When there was a sudden opening at small private academic special needs school where he had been for first 2 years of grade school, we took it, as they know him and are completely understanding. And the kids in his class are both more at his level academically and actually VERY challenging for him socially... The level of schoolwork is harder -- but still relatively easy for him -- which is fine, because we need him focusing on surviving and learning appropriate behavior and regulation when in challenging social situations.

I worried that we were making a mistake, even now occasionally I worry (WHAT?!? WORRY??) He was so HAPPY at ASD school. He has kept many friends and sees them all often -- but now as he acclimates and is making new friends and such huge progress on self-regulation, with a lot of support but with kids who are much more socially capable -- I SEE his pride in being more independent, taking on bigger challenges. And well, I do believe deep in my gut that we made the right move, again. Now, 2 more years until ...gulp ... middle school. AUGH!!

Did you want to know all that? I have a hard time with short answers. And really struggle with making these kinds of decisions every other minute, ask my poor friends and family.

I understand about the mush brain. Start small... Make a short video?

Sara

iVillage Member
Registered: 03-27-2003
Fri, 06-30-2006 - 9:14pm

wow again, are these schools in NJ??

and yes, i did want to hear all that.
can you pinpoint what has been the biggest
help with his success?

do you know of any reports out there that show
improvements with rdi in schools?

sorry, so many questions.

thanks again,
kris

iVillage Member
Registered: 10-03-2004
Fri, 06-30-2006 - 10:29pm

Kris,

Nope, both these schools are in NYC proper. When we look for middle schools, we COULD be in the position of having to send him to NJ or CT or other boroughs like Brooklyn or Queens. So far we have been lucky to send him to good schools in City limits, paid for by our BOE due to lack of appropriate programming in public schools.

LearningSpring (ASD school) is the first school to adapt RDI to school, I think there are some practitioners working with individual students in school settings, but I believe LearningSpring is the first to apply the program exercises school wide. Of course they are working on documentation, which is rather hard to do exactly and scientifically, certainly not in as little time as the school has actually been open (5 years). My "documentation" is anecdoctal, but not only based on my son. As I mentioned, he has lots of friends from that school, and we are close with their parents, so I can see progress across the boards.

But again, as every child is different, and each story and set of needs is different -- well, when you've met a child with autism, you've met a child with autism.

I would love to be able to exactly pinpoint success. I have always said that getting VERY good, thorough evaluations by top experts has been the biggest basis of our work with ds, because then we are making decisions based on HIM, not his dx.. We have tried so many things with him and I feel almost all of them contributed to his learning and development. We have been working this boy hard for 6 years steady now. We have gotten tons of advice from many experts and then we followed our guts in making decisions. He has had hours and hours of Speech, OT, counseling, floortime, play therapy, sports therapy, The Listening Program, RDI, now psychotherapy. When he was younger (like 3 - 4) I really thought hours of extra OT and OT-like activities made the biggest difference because his SID was so high, we've done dietary interventions like wheat free dairy free that helped immediately, now we've added enzymes but backed off on strictness of diet. His social skills have been practised with constant playdates since age 3, sometimes 4 -5 different playdates a weekend and a few afterschool as well!!!

Our latest intervention now that he is (almost) 9 -- is adding a mild dose of Zoloft, it's been a few months and so far so great. But I do see the Zoloft only assists all the other work, and now that his challenges are higher, the anti-depressant is just helping him be more present when he is in throes of HUGE emotional reaction -- he doesn't get quite as lost in it, so then all those great coping skills can step forward faster...

And here's the thing, with every success ... comes more challenge. Parenting this boy is hard, slogging work, all the time.

But he is the joy of my life, funny and honest and loving and loyal, curious and perceptive, a poet and a scholar of life. He is worth every second. Raising him has made me the best person I have ever managed to be.

Sara
ilovemalcolm

iVillage Member
Registered: 03-27-2003
Sat, 07-01-2006 - 10:34am

Sara,

i knew Malcolm's schools were in NYC, i thought
maybe in your travels you heard of others in the
area. my wishful thinking. getting my district
to pay for it would require a lawsuit.

i really appreciate the time you took to respond
to me.

i enjoy your posts, i envy people who can write,
something i lack, can you tell :)

thanks,
kris