Our daughter is not different but exceptional.....
Hello, I am Audrey's mother, who is almost 9. We are French and live in the countryside with my brother and my husband.
At the age of 6 months, I felt that something was wrong with Audrey. After several exams, it is only at the age of 5 that we learned that Audrey had Pitt Hopkins syndrome.
I think it is harder to deal with for me, it's not that she doesn't speak or walk, but the constipation that made my daughter SCREAM of pain during her early years, I felt powerless and I found it unfair that a natural need should be so painful....
So we had some information when we left the geneticist's office who gave us the news: with this syndrome: Audrey might never walk, will never speak, will have great learning difficulties, will use diapers, will certainly have hyperventilation crises, and will never be able to take care of herself.
"it's the learning gene that is affected" she told us.
I was a little depressed "so she will never be able to do anything, bad luck, but we have to deal with it"...for Audrey...
In spite of that, Audrey learns at her own pace of course ...but each small step forward is for us a great victory,
Audrey is a smiling little girl, who likes to be pretty, she is adorable, touching, nervous, and gets tired quickly.
She whines and screams a lot, she has a lot of erratic movements with her hands, she knows how to communicate her emotions with us (joy, excitement, fatigue, anger) She is able to walk with help, we have to help her under the armpits and she moves a bit by sitting forward, she wears her diapers, she can say "no" with head if she doesn't want a certain food for instance.
I don't know if she understands everything but she understands certain things, I think. She can be smiling and calm, but Audrey can also be hard in her movements and get very angry, and it's hard for us to know why, sometimes she bites herself and hits her head, she can also hurt us by pinching, biting, or pulling hair !!!! She has an anti psychotic treatment (I had to let myself be convinced, after much struggling) for her uncontrolled movements and this "auto mutilation" as they call it...
She goes to a special institute during the day. The specialists say that she has abilities that need to be explored and reinforced but because of her agitation, it takes time before seeing real results.
There are so many questions in my head, I am happy to have found this site.
So our daughter is our little princess,
"she's not different ... she is exceptional ..... "
Written by Angelik, published 19 days ago.