It was a shock when we received I*'s diagnosis, and as it's such a rare condition there is a lot unknown and many unanswered questions...
I* has had a hearing loss from birth and wears hearing aids , it was not until he was 2 that we found out he has a rare chromosome disorder (17q23.1q23.2 micro-deletion).
I* is nearly 4 and lives at home with mum , dad and big sister . I* is learning SSE to help him communicate . His speech delay has been especially frustrating for him during lockdown as he can’t express his thoughts and feelings .He is missing his routine and can’t understand why everything has changed so much and so quickly. Despite this, he is still one of the funniest ,happy and loving little boys I know, he always faces all his challenges with a big smile on his face and lockdown hasn’t changed that.
Not much is known about I*'s chromosome disorder but we know it is the cause of his hearing loss, global development delay ( for I* this means he is significantly delayed in all areas of his development) , and small stature.
It was a shock when we received I*'s diagnosis, and as it's such a rare condition there is a lot unknown and many unanswered questions, I felt alone for a long time. It is groups like Jolly Josh that have helped me gain in confidence and meet other mums and dads in similar situations to mine, the group doesn’t just provide inclusive play sessions, they also foster friendships and support networks that are invaluable when you have a child with a disability or SEND.
#SSE #HearingImpaired #chromosomedisorder #SEND #hearingaids #globaldevelopmentdelay