PWS, siblings, brothers, sisters, Prader-Willi Syndrome, management, questions, about
Support » Siblings
(by Linda Thornton)
Siblings often find their role in a family where their brother or sister has a disability, the hardest of all. Somehow their parents seem to have to spend more time with the sister or brother, and they are left to fend for themselves. Their parents seem to know how to handle things, but they don't. And often what their parents do, in order to keep the peace, seems to be giving in to the affected sib when, after all, they never got away with things!
What you tell brothers and sisters of your child with PW will depend on their age. The 2year old won't question; the 3 to 4 year old will observe and may wonder why it is so hard to feed baby, or why baby is maybe different from a friend's baby. The 5 year old is likely to be aware that there is a problem and, of course, 6year olds and up, know for sure something is wrong.
If the 3 or 4 year old asks why baby has to go to a physical therapist, you can tell him that the baby was born with weak muscles that make it hard to left her head and that the therapist can help her get stronger.
The older child may go further and ask why baby's muscles are weak and you can tell her that you don't know exactly why, but something went wrong while the baby was growing in mummy before he was born.
Siblings will hear adults talking about Prader-Willi syndrome and when they are ready, will ask about it. Tell them truthfully and on a level that they can understand. There may be a lot of questions, or just a few, but the first important thing is to give a message to your other children that this is something that they can ask about, even gripe about at times, and that you are willing to discuss with, and listen to, them.
The second important thing is that by the time the child with PWS is two or three and starts to look for food, that you do discuss it with your other children. If siblings understand about the syndrome, they may be more willing to put up, and help with, all the limitations on treats, food accessibility etc that it takes to control food intake.
Expect your other child(ren) to be jealous of the extra time and attention your child with PWS requires. And don't expect them to always understand these needs - see to it that the siblings have their fair share of parents' time too. Make sure they have their own special treats; perhaps time alone with grandparents, parents, or other outings. Use your Respite Care for weekends so that you can all have a break.