9 yr old DD just dx w/PDD-NOS-Now What?

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Registered: 07-22-2004
9 yr old DD just dx w/PDD-NOS-Now What?
1
Sat, 03-04-2006 - 5:07pm

Hi Friends,

Yesterday, Rachel was offically diagnosed as PDD-NOS. The psychologist who saw her could not believe that in all these years, no one had ever mentioned the term "Autism" to us. Since yesterday, I have been on a rollercoaster of emotions. From angry that no one listened to me when she was younger and exhibiting "autistic like" behaviors to validation, that I'm not crazy or neurotic to scared, that we missed the "window" for getting Rachel intense ABA. My only saving grace is that from 9 months of age, I fought to get Rachel every single EI service and then followed those with services through CPSE. Rachel is now in a regular 3rd grade class (our district did away with many of the self-contained classes under the push for inclusion). She has a 1:1 aide, and gets pulled out in a small group once a day for math with the special ed. teacher. The spec. ed. teacher "pushes in" ONLY 2 hours a week. Rachel gets tons of related services (sp, p/t/ o/t vision and psych. services). She has an IQ of just 70 and a Vineland of 66. She is delayed in almost all areas of development except reading and comprehension which are about a 2nd grade level. Right now, what I need to know is the following...
1. The "big" indep. reports won't be ready for awhile but we have a dx of PDD-NOS. Clearly, she will need a change in program for next year but should I go to the district now and share what I have and ask for ABA (at least until June) and then go back to the table to fine-tune a program for September when I get the "official" indep. packet. Or, should I wait until I get all the reports in order and then go to the district. One doctor tells me to go now and explain to the district that this is what I have so far, and they should provide the ABA and then when the other reports are completed, agree to come back for another, more intense meeting. Rachel's private psychologist who lives in our district and knows the spec. ed. supervisor said I should wait. He is afraid the district will turn us down without those reports. He feels another 3 months won't really matter because while he feels Rachel has traits of Autism, he feels that those traits are really due to brain damage and not true Autism.
2. Second question, is it too late to start ABA? If not, how many hours should I ask for, what is the likelyhood that I will even get ABA approved since she is now 9 years old and is ABA what I should be asking for, at least for now (because I don't think I would change her program so late in the school year).
3. Is there anything else I should be asking for?
4. Is there any hope that giving Rachel ABA now will work?
5. If you were me, what would you do?

I am literally beating myself up because of all the time we lost. I "knew" she was autistic like when she was 2 years old but two prominent psychologists both told me that Rachel was NOT autistic. In fact, her current devel.Ped who she has been seeing for the past two years, NEVER mentioned Autism to us. When we asked about her "flapping" his reply was that she had "central nervus system discharge". PLEASE., PLEASE, PLEASE tell me what you think I should do. I feel like I'm drowning.

TIA,

Robin

iVillage Member
Registered: 03-26-2003
Sat, 03-04-2006 - 10:15pm

Take a deep breath first and foremost.

Yes you have an appropriate diagnosis now but since you have been getting her a variety of intensive services since 2, I don't believe you missed the magic window at all. As a former ABA therapist (and I still do appreciate the field but I am quite eclectic) I can tell you it isn't a miracle cure it just speaks to the learning profile of some kids. If you are asking for intense 1:1 ABA discrete trials (which most people think of as ABA) I think your daughter is likely more able than that at this point and discrete trials would be to easy for her and boring. However, there are a good number of ABA approaches that will definitely help her at this stage. In particular what they call "task Analysis" and "Activity Schedules".

Here is an example of a task analysis

http://tinyurl.com/gpyw6

And an activity schedule (I can't get the pic to rotate. Sorry it is sideways. My yahoo is giving me a hard time.

http://tinyurl.com/ggs5f

A task analysis is basically breaking one task down into tiny steps and teaching them the steps in order. An Activity schedule is a schedule of a bunch of tasks together.

You don't have to use the pictures like this. You can even draw your own stick figures. Or you can write a list. I have a task analysis on my washing machine about how to do laundry. My son is a high level reader (and daughter too) but they still respond well to the picture schedules. I use those too because all 4 kids use them and my youngest (kindie) doesn't read proficiently yet.

They also have chalk boards in thier rooms and I write any lists I need to for certain things. For instance, today they had to clean their room. So I wrote out a list of the steps I wanted them to do and in what order. This works loads better for my son.

Another thing that helps us is organizing the environment. Setting up thier environment so they are more successful helps alot. So for doing thier morning and evening routine each child has a bucket with what they need in it. Thier own brush, toothbrush, toothpaste, deodorant, acne cream, what ever the particualr child needs as part of thier routine. That way it is right there. By seeing it, it is another visual cue to do that.

We have sensory things set out in places where they are helpful. I just rearranged again a bit tonight and put the boys weighted blankets in a basket in the family room since they can use it most when they are sitting watching tv.

I would find out about wrap around type services from the state. Home services to help teach her, or teach you how to teacher her the independent living skills she is likely behind in. You may also be able to access respite services and perhaps even some social skills training for her through that.

If she has psyche services I would ask that they provide social skills training specifically geared toward children with autism.

Does she get OT? Does she get sensory integration therapy through the OT? Most kids with autism have sensory differences.

I would recomend picking up the new book by Chantal Cecile-kira (sp?) I think the name is Adolescents and Autism Spectrum Disorders (or something like that) She talks about tweens (that 9-12 year old range) and teens with ASD. She hits on about all of the issues that affect kids this age with ASDs. She also has alot of information in there for parents of kids just diagnosed older. I just started reading it and I would highly recomend it for you.

Don't beat yourself up. My son should have been diagnosed ASD when he was 3 and it was due in large part to our denial that he was not. I felt like we lost valuable time too. In fact he had minimal services and only medication intervention for quite some time and wasn't diagnosed until 7.

But you did have interventions. In fact the National Academy of Sciences published not long ago a big book with lots of research reviewed. What they found was no so much which methods where used, but that kids with ASD HAD early intervention was key. So whether she got ABA or other services as long as she had services related to her needs and the way she learned it helped. There is just no way of knowing how much something would have or could have. You have been doing great for years. You are feeling badly now but know that you have always done the best possible you could for her.

Renee

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