Newly diagnosed with pdd-nos/sensory modality/generalized anxiety

by Kiri
(suffolk county, ny)

My 5 year old daughter started early intervention because she walked on her knees until 19 months of age (at which point she walked - clumsily). After receiving 6 months of PT in my home it was evident there was more going on. The PT then recommended OT services for weak fine motor skills as well as sensory and hyperactivity problems. She continued with both services until the Summer of her 3rd birthday when we decided to put her in a pre-school which offered a PT, OT, social worker, nurse, aids and teacher dual certified in pre-school/special ED,

There were ups and downs, speculations, discussions of family history (which include dyslexia with both my brothers and my father; Hypothyroid for my Father, his Mom, and the antibody for me; and the very recent suicide of my 44 year old brother). I also have a clear cut panic disorder and suspect as much from some family members.

In all, the gross motor skills have come along well, the fine motor skills are a huge problem as my daughter has a benign familial tremor and the sensory issues are all too obvious. Trying to get basics such as a weighted lap lizard added to her IEP took enormous effort and here we are, about to enter kindergarten with so many opinions on where she should be that are minds are awhirl.

Finally, we opted to have a neuropychological evaluation done and after 4 sessions of about 4 hours of testing we received a diagnosis of PDD-NOS. As far away from what we expected as we could imagine.

My daughter is one of the most social children I've seen in any group environment. She is funny, headstrong, creative. On the negative she cries/tantrums if something isn't her way, she perseverates, and seems to outsiders to be a "spoiled" child. We joke together about "Varuka" (Willy Wonka) and she'll give me that manipulative smile. Discipline is a problem as time-outs, taking away treats or toys, or spanks on the hand just do not work. I have been consistent, but even though she knows the outcome for her will be negative does not stop her from doing something naughty or dangerous. Safety is a huge concern as she has huge impulse control issues. All her reports and tests are the same across the board stating "easily distracted but easily redirected".

We had good success with brushing, but as the school was not willing to put this into effect I felt it became to inconsistent to be effective. As she can go for 12 hours straight we bought a trampoline, a 4 ft. pool,a swing set, and her 1st 2 wheel bike which occupy her when she is at home. She also rides horses 1x week and has become nothing short of obsessed with anything horse. These are but a few of our activities and the deeper the physical input the better. She also loves to be read to and will asks for books throughout the day. All are pretty well advanced and she becomes absorbed in the stories. Her pretend play, making up songs, and creating games with the kids are all quite creative. There is so much more....

My main concern is that the Psychologist never observed my daughter in a social setting. I have always believed she was a SPD kid as I carry many of the traits myself, but am quite aware a parent can have tunnel vision. Can this lovely but difficult child be part of the spectrum?

Help!

Concerned Mom