Hi Megan,

 

Looking at the response you recieved it is clear that you are not alone in your struggles.  I know how frustrating it is not knowing what the future holds for your child and where to find resources. 

 

My daughter, Sophie is almost 5.  She has an addition to the long arm of chromosome 9 (9q+).  I have yet to find anyone who has what she has, but it has been helpful to get in contact with other parents in my area whose children have other special needs.  The needs may be different, but the process is usually the same.  We all need special doctors with lots of visits and therapys.  We have learned how to find resources to help financially and with respite care.  We fight for our children in school and struggle socially.  No, you are not alone.

 

Sophie is a beautiful girl.  She has a laugh that will melt your heart.  You can't help but smile when you are with her.  But everything comes hard for her.  She has severe developmental delays - she is about the age of a 10 month old developmentally.  She has delayed mylenation which I believe causes her slow reaction time and her high pain tolerence, and has very low muscle tone - very much like a rag doll.  She has yet to say her first word.  She is learning to cruise furniture standing and is starting to walk with a walker.  She is not potty  trained and needs help feeding herself. 

 

If you are looking for a  group to get involved in check out the resource guide in EP magazine.  You might be able to find a current one in your local library.  They usually list a contact person for  different conditions.  I believe they have one for chromosome 9 deletions.  Since my daughter has an addition we would not fit in the group, but it might be worth your time to check it out.

 

Good Luck!

Lois

 

 

Coles Mom <shyygrl411@...> wrote: