It has been a while since the last post. We have been busy setting up the house, unpacking boxes and trying to schedule therapies. What a mess! Most of the mess (boxes) were sold to a guy in town for fifty dollars. We are really enjoying the house. It is so nice to have people over and have room for them to sit down and talk. After crying three days from being disoriented Andrew is now enjoying it too. He loves going in and out of rooms and attacking our Maddie dog. Too bad we sold the bubble wrap because he really loved swinging that around and knocking things over.
Today was not the best of days. Andrew had an appointment with a nuerologist here in town to talk about developmental problems. Dr. Rotenberg was very nice but very frank and after going over case history and observing him he listed or coded Andrew as PDD (Pervasive Developmental Disorder) otherwise known as Autism. This was really hard for me to take. My dad came along to help with the aptmt and didn't seem quite as upset as I was. We all knew that things were leading up to this diagnosis but it is still so heartbreaking and seems so permanent. It's not like he is dying but I am really grieving the loss of a normal childhood for him. For a long time I was holding out hope that this was just Sensory Integration Disorder, or Developmental Delay and not truly Autism. I can remember back to my first couple of years of working with students with Autism and saying to my self 'God please don't ever let that be me, and please don't give me a child with this'. And he has, and I am angry about it. I'm past the denial stage and definitely in the anger stage. Why me, Why us? What did we do to deserve this? And why is it that 1 child in every 150 children has Autism, an epidemic but yet we have no real answers as to what is causing this.??? Any way, we have follow up appointments for an EEG and sleep study, and after that he will go back for Autsim rating scale to look at severity and other issues.
Yesterday I had to go the obgyn doctor for an annual visit. It made me soo sick to my stomach to see all the expecting moms and dads sit in the waiting area. I remember how special a time it was for us as we waited too and dreamed about our baby's life. I sat looking at these expecting parents feeling jealous that we were not somehow stagnate in that stage. I hope and pray that none of those people have to go through what we are going through. Things just feel shattered.
I am very worried about next week. Andrew will be fulltime in day care again and I know he will stick out and defninitely be the high maintenance kid. What am I going to do? I can't really tell them 'he is PDD' but then again they can't discriminate can they?
After seeing the doctor today the nurse looked at me and said 'have a nice day.' I thought to myself a nice day? - this a bad day.
Please pray for us.
Rett Syndrome. One year Post Surgery
4 months ago