just when i thought i had this duchenne thing under control things seem to have gotten crazy again almost over night. austin is 10 ( almost 11) and in our school district they begin middle school in 5th grade. school has been a nightmare, austin has been left out, socially and academically. the adults at the school seem to see him as a burden ( although, they dont really seem happy teachers in general) and bottom line is he is so miserable that i took him home friday and we will not bring him back. where we go from here is unclear, there is another school that is in our town that is very good, but only goes to 5th grade, and just south of us a decent k-6th school, and there is always homeschool but i worry about the social aspect of that...plus, i am a stay at home mom of 3 boys, two step kids, a puppy, and we just took on a new company that i will be answering phones for and scheduling. im not sure i have the patience or time to raise all this kids, work and be a teacher to austin. this school thing is just the tip of the iceberg, i am so consumed with the exon skipping trials that i cant seem to focus much on other stuff. i will be going to the london conference next month, and austin wanted to know why... long story short i feel like we may have given him too much hope in this drug. he has been saying things like " will i be able to do stuff by myself WHEN i take this drug?" " how many needles will it be?" " will i still need steroids?" "will my face still be puffy?" and i walked in on a conversation this morning where austin was telling little brother max ( also with dmd) " dont use your make a wish on a handicap accessible play structure, we wont need wheelchairs soon" yikes! i am so afraid to burst his bubble of hope, i find myself having those hopeful thoughts too sometimes, but i just want us all to be realistic. i guess i never even knew how sad he is and how much he understands about his disease, until now when i hear him willing to do anything, go anywhere, to get better. it is heartbreaking, a kid should not have to go through this crap, and i am just sick of it!

Views: 44

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service