Son diagnosed with PDD-NOS, what else should we be doing? - Mothering Forums

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#1 of 3 Old 12-16-2011, 12:27 PM - Thread Starter
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Hi, my 6 year old son recently got a PDD-NOS diagnosis. He's been getting services since the age of 2. We saw delays in his speech

(or lack there of) and motor skills and contacted EI. He's received speech and OT services ever since and as he's gotten older gets his services at the public school. We home school but I bring him in 3 times a week for therapy (speech x 3 and OT x 2, 30 minutes each). After much waiting we finally got him into an evaluation center where he got the PDD diagnosis in addition to speech apraxia and a mixed receptive-expressive language delay. His initial diagnosis up to this point was sensory processing disorder. My question is what is the next step? What else should we be doing for him? How do we address his social issues? Should we seek private therapy for him in addition to the school therapy? I feel a bit lost and could really use someone to point me in the right direction. I just got the official report in the mail and am hoping I can get an appointment to sit down with his pediatrician but until then I'd love to get your guidance. Thanks so much!!

Kate - Mama to Max (13), Noah (11), James (9) and Isabelle (6)
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#2 of 3 Old 12-17-2011, 07:11 PM
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hi :).  i only have a second, but i'd personally recommend looking into both DIR/floortime and RDI.  at this age, especially, i think developmentally-based approaches are really important, and more likely to actively address social deficits than other approaches.  that doesn't mean other approaches don't have value to them in tons of ways- i'm just saying i found these most helpful as a parent who wanted to work on social interaction within the context of a *relationship*.  hope that makes sense.  and, also, please give yourself a second a remember that you don't need to do _____ in x amount of time.  this is not a race, and putting undue pressure on yourself as a parent will only burn you out :(. 

i say this to all parents new to any dx, as well- i found it INCREDIBLY helpful to find a support network of like-minded moms on this path.  i realized quickly that just because another mom and i both had kids the same age didn't mean we spoke the same parenting language.  this forum has been really helpful, but i also really appreciated a few blogs i found.  the ability to read things to which i could really really relate was priceless.  there are a million blogs, but if you ever want any recs, let me know...  lastly, i always found (and find) it helpful to read things by adults on the spectrum.  doctors and therapists can say anything, but reading words of someone similar to my daughter has been incredibly helpful for me.  things i could have never imagined were brought to my attention in the most honest ways.


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#3 of 3 Old 12-20-2011, 10:08 PM
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My advice would be to use the diagnosis as a way of understanding your child, rather than as a preplanned path to therapy. There is so much variety in the needs, strengths, and challenges of kids on the autism spectrum that the question really is what problem(s) you are wanting to address. You mentioned speech and social issues. I guess the speech therapy and OT is going OK (because you are still doing itshy.gif). Are there specific social (or other) problems that you would be looking to solve? What kind of therapeutic interventions is your child likely to respond best to? One-on-one with a professional, you (as a parent) learning specific therapeutic techniques, parenting styles, group skills classes? I don't know what is offered in your area, but I would start by clearly defining want you want to accomplish, then finding services that suit your child's needs, rather than jumping into a program just because it is intended for kids with similar diagnoses. The Autism Spectrum is very broad, and even PDD-NOS really says very little about your family's needs or how to address them.

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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