PDD-NOS new diagnosis for my 10yr old mentally handicapped Josie

[MomofJosie]

Hi all
I am desperate. For so long I have suspected that my daughter has a number of autistic behaviours. I have never been able to convince any Paed or professional to confirm my suspicions and they have often made me feel like I am making everything up, as Jo will at first be rather delightful when she meets someone . She has no real functional speech, but seems to have a lot of receptive language understanding. She has been assessed as being about 4 yrs cognitively. She is a twin( her brother being healthy and very bright) and had health issues early on(metabolic disorder that was transient thank goodness!!) but is really healthy now.
After doing ABA therapy with her for about 18 months, and putting her in a mainstream pre-school, our next step was to move to the other side of the country where there are schools for cognitively impaired kids.
The speech therapist she now sees ( degree from Columbia univ) who mostly sees ASD children, assessed her and then after 2 months of therapy informed me that Josie has PDD-NOS and that she needs to go to a shool in our area that is Autism specific.

My desperation is that she is not optimistic they will accept her as they are most likely to say that her primary problem is cognitive and not behavioural.
This little girl of mine is becoming more and more of a behavioural problem and resists trying to learn anything new, so how will we ever uncover her potential if her behaviours aren't dealt with!!
I have recently discovered that I have two first cousins(whom I don't know that well as my Mom was one of 8 children!!) who have one autistic child each! We have a appointment with the team at this school on 16 July and I need to convince them that she can benefit from their school and is a worthy candidate. How do I do this?!

[milivica]

I am sorry I have no answers about getting her in. I can tell you only that our answer has been www.rdiconnect.com . I don't know your girl of course, but would believe it is worth checking out with a dx of PDD-NOS.

Both my son and I are on the spectrum, and RDI is the real deal, though there are so many unscrupulous programs and people, it gets harder and harder to believe any of them.

Now, ABA will teach memorized behaviors, yes. The problem is, when you are behaving in a forced way, that does not feel natural, it can in the long run increase behaviors...and depression. Or in my case, that would be true. I have become a stranger to myself, I know what I should 'do' but don't feel they 'why' of my actions, the function. I can look at you when I speak and when you speak - but - it is with RDI I am first now at 43 learning to see body language, so first now have a reason to look at eyes, a function - not just a memorized skill.

It would be a huge and illogical leap of faith to start RDI, you don't know me at all, but I hope you will go to that site, and see a certified consultant asap. If you are able. That is my opinion, that does not mean I'm right, does not mean your daughter must have this or else...you are her mommy, you know way better than anyone...and you were asking about getting her into that school anyhow. My hope was, with RDI, she can go to any school so your desperation about this would be fixed. I'm trying not to be too push, it's just been a miracle for us, seeing our boy finally develop milestones he had not yet, that typical kids did effortlessly. I fear I'll stick my foot in it with you, saying the wrong thing is kind of a little 'gift' of being on the spectrum (heh :o )

The biggest thing I want to say to you, is that I feel alarmed that you used the word 'desperate' about how you feel. I think every one of us here, knows that feeling. I hope even if you get nothing more that support and companionship from fellow parents and moms, you will post back here soon and often.

(((HUGS))) to you,
Mili

[MomofJosie]

Thank you so much for your advice and info. In South Africa, there is little in the way of subsidised and government supported intervention. As a result, we are a bit behind in catching on to the latest therapies available. to be quite honest, I had never heard of RDI therapy before. I have now found out that there are people here who offer this kind of therapy and if Jo is rejected by this school, I shall certainly go it alone. Prepare to be inundated with questions!!

Thank you too for your empathy and support. Sometimes I feel so overwhelmed by the thought of the future. Mostly I try not to look beyond the moment.

[peglem]

I have never heard of a speech therapist dxing autism. At any rate, I don't see how they can separate out cognitive and behavioral issues so easily. Behaviors often interfere with my child demonstrating what she knows or working on learning. My chief frustration is that I, and many people who have worked with my daughter, know she is a great deal more intelligent than they are able to ascertain with their evaluations. The challenge is getting her to cooperate with their evaluations. She tests mentally retarded- but I know she isn't.

[milivica]

A good 'test' for knowing your child is smart, is when they know how to avoid taking those darn tests! ;)

[milivica]

Well, there sure are none near you, you're right about that. Here are the consultants not in the States:

AUSTRALIA

Rochelle Appleby, B.Ed.
Autism Intervention Services
Hornsby, NSW 2082
Phone: 02.8402.0996
Email: Rochelle.Appleby@autismintervention.com.au
Website: http://www.autismintervention.com.au

Jo Fokkes, L.A.C.S.T. (Speech Pathology)
1st floor
148 Burns Bay Road
Lane Cove, NSW 2066
Phone: 04.1977.5558
Email: jofokkes@email.com

Libby Maher, B.A., Dip E.D., M.A., Special Ed.
Sydney, NSW
Phone: 04.1478.2908
Email: libbymaher@bigpond.com

Libby Scherrer, B.A., Dip T (Early childhood), G.D.E. (Special Education)
P.O. Box 297
Northbridge, NSW 1560
Email: admin@arconnect.com.au

Prue Watson, B. Occ. Thy. (UQ), Grad Dip Ed UNE
Connecting Autism - Relationship Development
192 Schmidt Street
North Rockhampton, QLD 4701
Phone: 07.4928.9831 or 04.0446.1739
Email: info@pruewatson-ot.com.au
Website: http://www.pruewatson-ot.com.au

_______________________________________

CANADA

Kevin Berman, M.D.
Vancouver, British Columbia
Email: kgberman@telus.net

Rosanne Brezden Papadopoulos, O.T.
Emotions: Therapy for Kids and Teens
Winnipeg, Manitoba
Phone: 204.254.3146
Fax: 204.253.6105
Email: kidsandteens@mts.net

Jean Brighouse, M.Sc., SLP(C)
Email: jbrighouse@jetstream.net

Wendy Groiss, M.Ed., Counseling Psychology (R.C.C.)
Family Autism Clinic: Consulting and Education Services
Kelowna, British Columbia
Email: groisswendy@yahoo.ca

Lesley N. Gurney, S-LP(C)
2870-60th Avenue, N.E.
Salmon Arm, British Columbia V1E 2A9
Phone: 250.832.0162
Email: lgurney@sunlite.ca

Stephannie Motuz, M.S., CCC-SLP
633 Wellington Crescent
Winnipeg, Manitoba R3M 0A8
Phone: 204.453.9855
Fax: 204.452.7152
Email: stephanniem@rccinc.ca

Lisa Palasti
Kitchener, Ontario N2B 3T7
Phone: 519.895.0228
Email: lisapal@sympatico.ca

Vic Stone, B.A.
Other language spoken: Spanish
Relationship Connections
220 Oak Street
Winnipeg, Manitoba R3M 3R4
Email: VicStone@shaw.ca
Website: http://relationship-connections.com/

Sharlene Wright, E.C.E.C.
Nanaimo, British Columbia
Email: bridgesrdi@shaw.ca

_______________________________________

JAPAN

Koji Shiraki, B.A., Clinical Psychologist
Other language spoken: Japanese
Nagoya Child Welfare Center
Nagoya, Aichi
Email: kshiraki@dance.plala.or.jp

_______________________________________

SINGAPORE

Genevieve Chua, M.A. (Educational Psychologist)
Other language spoken: Mandarin
Children's Partnership Pte Ltd.
43 Watten Drive
Singapore 287678
Phone: +65.6468.8364
Email: genevieve@childrenspartnership.com.sg
Website: http://www.childrenspartnership.com.sg

Bimal Rai, M.A. (Educational Psychologist)
Other language spoken: Malay
Thomson Medical Centre
339 Thomson Road, #03-06
Singapore (307677)
Phone: +65.6253.6257 or +65.9858.7160
Fax: +65.6252.2261
Email: brrai@pacific.net.sg

_______________________________________

UNITED KINGDOM

Martina Gavalierova, B.Sc., AdvDipEd.
Other language spoken: German
Unit 4 Oslo House
Felstead St.
London E9 5LT
Email: martina.gavalier@gmail.com

You have to actually see them in person about once per year, the rest is all sending video either through the computer or like me with vhs tapes, for the consultant to see what you're doing, how your doing it...basically YOU become your child's 'therapist'...however I can tell you doing RDI for me, feels like the first time I really got to be his MOTHER. Not teacher, not aide, etc... Took me about a year to get comfortable with the concepts of RDI, they were so 'simple' and automatic, it's just not something a person thinks about. Though now, I'm doing better at it than my husband, it's as though my son and I are developing together, in areas that have been 'sleeping' instead of growing. Should you ever be able to to this route, should you decide it is right for you and your girl, make sure you are comfortable with the consultant - the program is only as good as the consultant, know what I mean?

My best to you!
Mili

[peglem]

I just bought the books, Relationship Development Intervention for Young Children and Relationship Development Intervention for Adolescents and Adults. The thing that strikes me on reading the introduction and first few excercises, is that it focusses on just the kind of games you'd normally play with an infant- just having fun with your child. The thing is, my autistic child taught me early on, not to play those games, because she did not reinforce them, was not interactive with me when I tried. It also led me to notice that I seldom have times when I just have fun with my kid, for the sake of a good time together. But, other than swimming together, I can't think of a single other thing we could do that would not result in her freaking out and us having a very bad time together. I'm starting out slowly, just working on getting and holding her attention for longer periods of time.

But, my point is (or was intended to be) that just getting the book can help you get started and see if you think the program is a fit for your child. I may be looking at getting a consultant- there are two available in my area. I'm just a bit "therapist shy". It seems so invasive to our family and over the years I've just become sick of therapists. Also, I don't see anyway for me to get the parent training that the website says you need (2 days away from my child? that's craziness!) AND I won't spend $150.00 for a DVD. I think I "get" the program and don't see what magic could possibly be contained in the training that the therapist could not explain to me as we go along. I suspect its just selling the program.

[milivica]

The RDI program is typical child development packaged so you and your child can enjoy going through those developmental milestones together. Until this year, there was not a single thing I can think of that Vince and I enjoyed together...the closest we came to that, is me doing what he wanted and me telling myself it was fun, and really really trying to feel like it was fun, cause I wanted so desperately to have fun with my kid.

And sometimes, I thought it was fun - but looking back I was making the best out of my limited options with him.

The last thing we did that was crazy fun was probably taking that huge load of crap to the dump, though the activity was awful, I can't explain it, we just had FUN. Even cleaning the pool today - Peg - when you can share emotion, when he can borrow my perspective, I mean anything and everything is fun. With AUTISM, it's always about the precise activity you are doing, never the abstract 'emotion sharing'. See? And I mean, what parent in the world thinks to specifically teach their child to emotion share, or borrow your perspective - heck a baby of a month old can do those things, make faces at them and you'll see, right? So how the heck would you or I or any mother be able to 'instinctively' do this - we try, but we can't. Though I'm sure there is the rare gifted parent that could, I ain't one.

I completely hear you on being therapist-shy and therapy-shy. I'm both. What I'm doing with Vince now, is what Carmen has initiated doing with me all her life. I keep waiting for something complicated or whatnot, and it's not - yet without a consultant I'd be totally lost. Remember, all Dr. Gutstein did, was read a bunch of books from people that write about typical development, and make it so you can introduce it to your child, whooo, doesn't have the neurology to do so without your guiding it. YOU are the 'therapist' per say, and the RDI Consultant is your reference to make sure you are doing the program as intended, that your child is getting what she should from it. My consultant constantly catches things I do not.

Here's a great example of what RDI is doing for us. This morning, Vince was asking me to go in the pool when I was busy in the kitchen. He was about to launch into his argument for going in the pool now now now, then HE said "Vince, I'm really busy here, geez let me finish then ask me I only have one head" and I about sh!t! I was so pleased, he was able to borrow my perspective! In a million years, he would never have been able to do this before. I take it as the result of us doing so much together, like everything. And not in a parallel way, but in a way so he can remember the things we do as a single collaborative event. Example....when we take in the groceries, it used to be he unloaded, I put away - parallel. Now, he carries up the stairs, I take and put in kitchen, WE put away randomly, I try to hand him things from the table for him to put away, and he does the same but he does so automatically - we are a bit like the folks you see that need to hand each other buckets of water from a well to pour for the whole village to drink that day. You don't see them each with a bucket, that would be parallel, they do it as a single collaborative event. I dunno where you girl is, but, when I started this with Vince, he changed in about 3 days - I mean, all he could say constantly was 'we' 'we' 'we' cause he talks lots, but doesn't 'communicate' necessarily. Like me, he knows what each word means, but put them all together and the 'meaning' is very hard to get. Naturally, with no body language reading going on we're missing lots of them invisible signals.

Oh, and about the pool...of course, I stopped what I was doing and let him know he could go now - natural consequence of borrowing my perspective, hee hee.

Hey Peg, here is one part of the Stage 1 stuff below...

Stage 1
Type: Discovery
Process: Episodic Memory
Tool: Reflection
Lesson Reminiscing 1: Remembering joint role enactments as a single collaborative event

Description: Remembers the unity of synchronized role enactments. The child expects that when his or her partners initiate one of the roles of a familiar complementary role enactment (e.g. sweeper, dustpan holder), in the setting and with the materials that are customary, it is a signal for him or her to initiate the second complementary role, without the need for any prompts. Expects that brief pauses in partner's actions during regulatory activities do not constitute a deviation and will be followed by a continuation of both their expected role actions

Mastery Partners: Father, mother, familiar consultant/therapist, other familiar caregiver. Settings: Home controlled setting, enclosed household room, familiar professional's offices

[MomofJosie]

Thank you so much for all your help. I can't tell you what a relief it is to speak to others who know what this is about and who have something to suggest that makes sense!! So far my Speech therapist has been the only one to really give me some practical advice. By the way, the diagnosed Josie as most of the children in her practise are ASD and she was the therapist at at an ASD school in Cape Town. An absolute tonic in our lives.