Sunday, August 16, 2009

T-man

T-man is 4 years old and has been diagnosed with numerous problems. One of them is PDD/NOS, which is on the autism spectrum and Sotos Syndrome, which is an overgrowth syndrome characterized by a large head and developmental delays, among other things.



He has also been diagnosed with moderate mental retardation, which is not really a diagnosis but a symptom or at least that is what I have been told by a few doctors. We went to a very renowned diagnosing children's hospital for that one. My husband and I don't really agree with that particular one and it made us quite disillusioned with the doctor and the hospital. When we received that "diagnosis" we were confused and wondered what would become of our T-man.





I had a pretty good pregnancy with him - had him at full term. But the labor was not so hot. I had a fever and was very dehydrated. I had to be induced with Petocin and he had a lot of trouble coming out (had him naturally). His big head was kind of stuck and they were about to give me a c-section when he finally made his way out. He had aspirated meconium, so he was whisked away to the NICU before I could really even get a good look at him. He remained there for 5 days. During the second day, he had two seizures which they never have been able to explain, so they put him on phenybarbital until we took him home and could see a pediatric neurologist, who immediately upon seeing him took him off of it, as he said, "cold turkey." The medicine made him so sleepy and non-responsive that he had trouble nursing (and I was a new mother, I didn't know how to do it either) so feeding was a disaster for awhile.



When he wasn't rolling over at one of his well-baby visits, our pediatrican suggested getting an evaluation with Early Intervention. I am so grateful to that doctor because he didn't sugarcoat anything and let us know that something seemed off and we needed to do something about it.



So we started EI at about 9 months old and we had therapists coming to the house until he wasn't eligible anymore, which in NJ is 3 years old. He started at one of the special needs schools in NJ (they start special needs kids at age 3). We are so fortunate to live in a state that provides such amazing schools for kids like our son. He is in the autistic class and has a one on one aide and is doing well. I am so very grateful for the teachers and aides in his class. I know he is loved and cared for there and they have his best interests at heart. He can go there until he is 21 if he needs to and at this point, I feel that he will be going there until then.

2 comments:

  1. Hi, and nice to "meet" you! I came across your blog via Ellen/To The Max. I'm also the mother of a little boy who just turned five. He has left - sided hemiparesis (muscle weakness) due to a stroke. I enjoyed reading about your T - Man and look forward to learning more about him. Take care!

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  2. thanks for commenting - sorry i didn't comment back earlier - i have been deciding whether or not I want to continue the blog. and the fact that someone actually read it makes me think i should.
    Thanks for reading!

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