I was wondering how children with AHO/PHP 1A cope with school. Are your children in regular classrooms? Receving Special Education? Any tips?

Both my son and daughter have been diagnosed, but have very different symptoms. As far as school goes, for us, my son is in mainstream first grade. He has B/L hearing aides so he goes in every morning for about 5 minutes and gets his equipment checked, but overall he is doing very well in a mainstream classroom. He was very delayed his first 5 years of life, but he is making really good strides right now. My daughter is in third grade, and also has B/L hearing aides. She spends the first half of the day in a hearing impaired classroom for language arts, and is in a mainstream classroom the second half of the day. We did some academic testing outside of the school this past summer and she is roughtly 1 to 2 years behind depending what was tested. My daughter had a lot of sensory issues which she is slowly outgrowing which has been good. Her biggest issue by far is her attention span and memory issues. I think we are lucky because the fact that she has hearing issues allows her to have a parapro in the mainstream classroom at all times. So far third grade has gone very well, she is considered special ed, but things are going well. This has been the year the teasing has kicked in - weight issues, hands and feet looking different....she is also social "different." She doesn't "get things" really well like friendships and girly stuff, and believe me girls can be really mean. This is just our experence, and I know everyone is different, and I think every child with AHO can be different. We stay in really good contact with our kids teachers, and spend lots of time with kids and their homework. The other thing is that my daughter is very artistic, and we try to use that to help her learn other things. I hope this helps!

Madison is in a Life Skills classroom, but school is great for her because it provides the structure she needs. She is lost when she is not in school....lol. She dont know what to do with herself....haha. Anyway she is definitely progressing since she started school. She is in 4th grade and at a 4-5 year old level but she is very good socially. Any other questions please ask!

Went today for an eligibility hearing to reivew my daughter's IEP and need for services. Shared her suspected diagnosis of AHO with the school. They have now deemed her ineligible for IEP services. They believe that a genetic disease will not impact her academic ability in any way. They don't think a 4th & 5th metacarpal deformity in her dominant right hand will effect her ability to write and complete graded class assignments. It did 6 weeks ago when they called ME in to get MY approval for increased resources for writing in math, social studies, and science. After the shock wears off, I will be appealing their decsion. Any one have any suggestions for what services I should request or how to approach this situation?

Has your daughter been involved with services such as speech /language pathology, physiotherapy and occupational therapy? If so, the therapists can be helpful. Is she delayed? Have you had any testing done on her pertaining to developmental delays? All this information would go into getting support. AHO/PHP 1A most certainly is a diagnosis that influences a child's development in language, fine and gross motor, social and cognitive skills. The problem is most people have never heard of it so they dismiss it. You need to provide them with information that describes the symptoms as they pertain to developmental skills.

I have neuropshycological evaluation reports from 2 private providers who say she needs educational resources because she is delayed in pragmatic language processing and long term social relationships. Children's Hospital is recommending OT for writing support. I have the school's own eligibility committee ffrom 6 weeks ago recommending increased support services in the classroom. That didn't seem to have an impact on today's committee. All they heard was that there was a medical issue they can't address that is impacting her academic performance. That seems to give them the OK to cut off services completely. We are still in the early stage of diagnosing the AHO. So, I don't have the support needed for the eligibility commitee yet. But, what you have suggested will help keep me on track as to what I should be providing them as I move throught the appeal process and genetic testing. Thanks for the response!