TIP of the WEEK: What About the Rest of the Family

Parents of children diagnosed with PWS have an extraordinary challenge that takes never ending patience, an understanding of medical issues that rivals the best doctors knowledge and fearless advocacy. But what about the rest of the family? Siblings and spouses need you just as much and sadly they often take a back seat to the needs of the child with PWS. Here are some ways to create balance in your and their lives:

• 1. Have consistent expectations. If your typical children have chores and standards of behavior then so should your child with PWS. If you want your child with PWS to be an active and valued family member then they too should have chores and consequences just as your typical child does. Without this you will create an unnecessary environment of resentment and hostility towards your special needs child. Just remember that fair does not mean equal. Expectations may not be the same but they must exist. A well made bed or a set table may look different and that's ok as long as similar tasks are being asked of both children.

• 2. Give your non PWS children a safe place to talk about their feelings. Online support groups or sibling groups in person exist although they may be difficult to find. Start your own or at least encourage your children to connect to other siblings at conferences or local chapter meetings.

• 3.  Let your kids come up with their own strategies to cope with behavioral issues with your approval. They will be more apt to become involved with a solution if they were part of its creation.

• 4. Make time for them. So much of your time goes to your child with PWS. Be sure that at least a few minutes a day goes to being alone with your other children. This is hard, I know, but so important.

• 5. Watch for splitting or in fighting after behavioral outbursts. It is so easy to feel out of control and blaming everyone else is often easier than feeling helpless to the syndrome. People make mistakes but more often than not it was the anxiety or inflexibility of the syndrome that caused the outburst, not your spouse, their teacher, the lady at the grocery store, etc...

• 6. If you have a spouse then date nights are probably ancient history. You may not have time or the resources to leave your kids for a night but don't forget to validate their feelings. If you're a mom then you probably do the majority of the work and attending to the needs of anyone aside from your kids seems impossible. Try to make an hour in your week to connect with your spouse even if it's sitting in the backyard after the kids go to sleep. It is important for you as a team to regroup and remain a united front.

You have a remarkably hard job that can be made easier if the whole family works together. Don't forget to ask for help and take every chance you get to take a deep breathe and think great thoughts!

Submitted by:
Patrice Carroll,
Manager of PWS Services


Related Posts:
Support for Siblings
We Do Not Walk Alone
Caring for Yourself

“Alone we can do so little; together we can do so much”  

 ~Helen Keller

TIP of the WEEK: Support for Siblings

How do we support brothers and sisters of kids with PWS while keeping food secure, routines on track and resentment from brewing?

Siblings of kids with special needs have unique challenges. Some kids may feel angry at their sibling with special needs because they may feel that they are not as important, or that all the attention goes to their sibling. They may feel that many family plans get ruined or postponed because of their sibling's behaviors. These are natural and expected feelings. As your children get older it will be easier to explain more complex concepts and with age often comes greater empathy and understanding. Some tips that may help:

• Schedule time to spend with your children alone, away from their sibling with PWS.

• Give them a space where they can keep their belongings safe. If something is broken or taken, ask your child with PWS to do something nice for their sibling to make up for their loss.

• If an event may be too stressful for your child with PWS, don't bring them. Every member of the family does not need to attend every event.

• Allow your children to have their feelings. Let them know that it is ok to feel angry, embarrassed or afraid at times. Letting your children express these feelings will allow them to experience the good feelings too.

Ultimately the siblings of our kids with PWS will be the people responsible for their care and support in the later years. Studies have shown that siblings of children with special needs grow up to be adults who show greater flexibility, tolerance, compassion, sensitivity, and problem solving skills than those with typical siblings.

Submitted by:
Patrice Carroll