Does anyone have a child with a chromosome deletion?!

Does anyone have a child with a chromosome deletion?

i have a daughter with chromosome deletion 1p36 would love to hear from anyone else whos child has the same condition,she is my oldest child and my other 3 children dont have it neither does myself or my husband they tell me it was just one of these things that happend during conception it still doesnt make it any easier to understand i often think why us,some days she can be hard work especially with her temper tantrums she bangs her head off walls and stuff,but she looks at you as if shes an angel

I don't know about that particular chromosome deletion, but a friend of mine has a delightful little boy with chromosone deletion. He has some pretty severe special needs, he is nine and is only just learning to communicate with sound, he is practically blind and takes all her energy and time day in and day out. Her two younger children do not have it, neither does she nor her husband. He doesn't have temper tantrums though, and smiles all the time, she is lucky. You cannot afford to think why you, and you need to get some support to help you cope. Call your local social services and occupational therapy, call them until you get somewhere with them. They need to help you in practical terms like equipment you may need, schooling, home help and respite care for your child, be it occasional or whatever. They need to help you get the correct forms filled out to get the financial help you need. You do not need to be taking this all on on your own, yes she is your child, but social services are there to help people exactly like you and your family, you deserve to have some help with her, to enable you to get quality time for not only yourself, but with your other children.

I hope you hear from other people who have children with such a deletion, knowing you are not alone will help with some of your feelings. If not, try searching on the net for it or see if your doctor's practice has a nurse who could help you look, maybe even refer you to the right social services department. Good luck, and God bless.