Hello To All!
My daughter Holly is 12 (13 this July) and has ACC. She was diagnosed in utero. We had her in early intervention from 6 months of age and she currently attends public school and is mainstreamed in the 7th grade. Holly is very high functioning and seems not to have any of the multitude of other issue I see so often with this diagnosis. We are truly blessed to have Holly in our lives.
On the other hand as Holly is getting older we are facing new issues. There is that "There is something a little off but-I-can't-put-my-finger-on-it" feeling when it comes to Holly. The other children are starting to pick up on it. Her intelligence is not affected but her social skills are lagging behind the other kids her age. I would put her emotional age at around 8 or 9. We are having issue with her having " bathroom accidents" during school and this is a concern as Holly doesn't seem affected by it. We currently have her enrolled in a social skills group and she has a 504 in place which allows her extra time for tests etc. The school has been very supportive.
The reason I am reaching out is two fold at this time. As Holly gets older I am becoming more frustrated with the lack of nformation available from doctors, therapists, specialist etc. etc. I would be very grateful to hear from other parents of children Holly's age and older to gain from your experience in facing the teenage years ahead.
I am also having a bit of difficulty with Holly's older sister, Paige (age 14). Paige is very aware of Holly's special needs and is finding it frustrating to deal with the issues Holly has. Her friends really can't relate to her issues with her sister. The support groups that I have found have not been specific to ACC and they seem to cut off sibling support groups at 12. I'd like to find someone who is Paige's age that is going through the same issues. I think that she just needs to be in contact with some one in the same situation that gets it.
I appreciate any and all, advise, support, information, help that anyone can offer at this point. It has been helpful just reading these posts and knowing that I'm not alone. Thank you all for your honesty in sharing your stories on these boards. I keep you all in my prayers!