Kind of new here..long

iVillage Member
Registered: 09-22-2004
Kind of new here..long
3
Wed, 04-28-2010 - 10:41pm

Hello everyone. I came here a while back asking for advice about my nephew with as. Everyone here was very helpful, thanks.

Well my 5 year old daughter has been diagnosed PDD-NOS. She was diagnosed by her ped (who is also a developmental ped). She was also assessed (when she was 3) by the school board who said that she is typically developing, just really bright (scoring in the genius range in pattern recognition but high-average in everything else). So I am a bit confused on where to go next???

My daughter is hyper-verbal and started speaking at 8 months, in sentences by 1 year however she didn't say mama until almost 2. She has also not stopped talking since, even in her sleep. She has a vocabulary far beyond her years and has a near perfect speech pattern (no misuse of pronouns, ever, and is able to use newly learned more difficult words in context immediately).

She was very anti-touch and unemotional. We have seen a lot of growth in these areas in the past few years as we have been trying to make her a bit more comfortable with touch and emotion (taking time out to explain why we are feeling an emotion etc.). She will now hug and cuddle (however it is not natural, but it is what she can give so there are no better hugs in the world!) and can mimic emotion close to the situation, however is not able to correctly express remorse even when you can tell that she really feels bad about something by what she is saying (this was a major issue in her old school).

Now our biggest issues are with socialization and behavior. She is a great kid. However, she can go from happy to unbelievable tantrum in no time over what most people would take as nothing big. She also requires constant attention and has never engaged in independent play. She requires attention 20 hours of the day (she will sleep in her own bed for about 4 hours and then moves next to either me or daddy). When awake she is inertia. Unlike a child with ADHD, she is constantly moving, acts as though she is not paying attention but has knowledge of everything that is going on around her and absorbs it all, including both ends of a phone conversation (she has really good hearing, so she is also really bothered by loud noises). We have found a preschool that will work with us. They didn't think that she would last a week there, but luckily they saw that we were willing to share strategies and her teacher is a very sweet and patient woman, so that is working.

I could go to a neurologist next, however I don't know what exactly that will do for her. My other option was to wait until she starts kindergarten in the fall and see if any concerns are brought up.

So if anyone has any advice or ideas I would love to hear it.

Thank you so very much,

Kerri

iVillage Member
Registered: 03-27-2003
Thu, 04-29-2010 - 8:56pm

Kerri, you can see the neuro if you choose, and if you think there are issues beyound the autism spectrum disorder (ASD).

                                

iVillage Member
Registered: 09-22-2004
Thu, 04-29-2010 - 11:51pm

Thank you very much for your response. I am very worried about school. I am also very worried about the school eventually misdiagnosing her with ADHD or ODD. I can try again to get in with the preschool team, but it usually takes 4 - 6 months for an appointment. It is a very large district with major financial problems. Luckily the school that she will go to next year has an amazing ese department, so that is what I am holding out hope for. When she first started in this preschool, they thought that she would end up in an inclusive kindergarten setting, however she has progressed so well that they feel she can enter right into a typical setting with minimal interventions. They are not well versed in asd's, so I don't know how accurate their assessment is.

The problem with the formal evaluations has been that she knows that she is being evaluated. Testing is something logical that she understands well and she acts almost too perfect. The first evaluation we took her to, my husband and I sat there with our jaws on the floor, thinking that we were crazy because she was so perfect. We felt like total idiots when we went to that meeting and all they could do was rave about her. So when we went again, we were expecting the excellent behavior and she didn't disappoint. Luckily the peds office has too many variables for her and our pediatrician picked up on it before she was 2 and confirmed her belief and brought it up to us just before she turned 3.

If we can't make progress with the preschool team prior to August is there anything we can do prior to kindergarten. I just switched ins so hopefully OT is covered by this one. I will definitely check on that. I have not been able to find any social skills type groups. The only one that I had found was part of a Behavior Analysis group and we placed off their sliding scales and there is no way we can afford their services :(. I do have a BCBA that will help us when we run into problems (I am an administrator for group homes for adults with severe to profound developmental disabilities, so luckily have access to some resources through work).

Thanks so much!

Kerri

iVillage Member
Registered: 06-26-2008
Sun, 05-02-2010 - 11:57pm

Hi Kerri,


My daughter was dx'ed with pdd-nos when she was about that same age. She also learned to speak early and

Katy   Blessed mom of 6 girls, youngest Sarah born May '07 with hypotonia, vertical nystagmus, developmental delays