Siblings

Growing up in a family where one of your brothers or sisters has a disability can be really difficult, stressful and unfair. At the same time, it can also be rewarding, fun, and a huge source of inspiration.

It's natural to have a love-hate relationship just as it's natural to have a whole heap of other emotions all jumbled up at the same time. On top of this, you have all the other problems of life-school, growing up, parents, responsibilities, peer pressure and acceptance, plus a bucket-full of hormones that need stabilizing!

The problem is, how can you learn to integrate all this when it just seems impossible? Not only is it a huge ask from the sibling as he or she tries to make their own way in the world, it is also a huge task for parents to oversee and make sure that each child gets the kind of loving support that they need to become the individual they can.

In the case of a sib with a brother or sister with PWS, how much do you tell them, what do you tell them, and how do you support them? Often siblings have very conflicting and confusing feelings about their brother or sister. As they grow older and have more understanding, they may be embarrassed by the abnormal eating behaviours and resent the need for controlled access to food. They may find it difficult or impossible to ask their friends home to play and this may generate resentment towards their brother or sister.

Although each family will tackle this subject in the way that they feel will work best for them, parents may still need to be taught to help their other children to express their feelings in the knowledge that it isn't wrong to feel embarrassed, awkward, resentful, or even guilty towards their sister/brother.

We know that children absorb information at different levels-too much at one time and they selectively retain some and ditch some. The pre-school child doesn't need as much information as the schoolchild, who doesn't need as much as the teenager and so on. Children ask questions, when they feel the time is right, and it is up to us as parents to help them understand the unique needs of PWS. The important thing is that you give them time to question and answers they can understand.

The second important thing is by the time the child with PWS is two or three and starts to be more interested in looking for food, that you do discuss it with your other children and stress the importance of their brother or sister's special needs. If siblings understand about the syndrome, they may be more willing to put up with, and help with, all the limitations on treats, food accessibility etc. that it takes to manage the special dietary needs.

It is normal to expect your other children to be jealous of the time you spend with their brother or sister, and is important that you are able to make them feel special too-outings and visits to grandparents, or with just Mum or just Dad, visits and treats (but not too many treats as to make them feel superior to their sibling and have them use this against them).

As the brother or sister grows older, the changes and development in their sib with PWS will become more obvious and your parenting skills will be called on more and more to settle arguments ("it's not fair-you always let Susie get away with everything"), and pour oil on troubled waters. Often you will do something to avoid further outbursts that may seem unfair to the sibling and find you are confronting a completely different outburst of their own. Or maybe the child with PWS uses an unfair amount of physical force to get their own way in the (now learned) expectation that Mum or Dad will make their brother/sister "give in".

All this happening at the same time will make the situation seem impossible and the simplest solution may end up as "because I say so!" result. Which reinforces the unfairness for the other sib. It's a good strategy for the parent to go to their child at bedtime, sit on the bed and allow them time to talk about what happened during the day and why it wasn't fair. Often you can ask the sibling what he or she thinks you should have done, or what they might have done if they'd been the parent. You may be surprised at the answers and encouraged by the child's actual understanding of the situation. Making the brother or sister feel special because they are taken into your confidence and asked to help with their sib with PWS can often be the key. It may not work the next time the same situation arises, but continued talking about it will help reinforce the message that both of you are learning to help Susie to grow up in a world that is often strange and uncertain.

It is sensible to treat your child with PWS as much as a normal member of your family as possible. Sure they get tired, more irritable, more hungry etc, but they can still help around the place with the chores. Make allowances, but don't make a rod for your own back.

For older siblings there is more help in the form of Sibling Workshops offered by Parent to Parent around the countryside. Search with Google to find Parent to Parent sites or log onto: www.parent2parent.org.nz to join the New Zealand support group. Sibling workshops are great times away for sibs in the company of others who also have brothers or sisters with special needs. It helps build relationships, let out feelings in a safe environment, and put things into perspective. These are professionally run and workshops are based on years of research from Don Meyer who designed the American "Sibshops" for siblings of children with special needs.

For siblings wanting to talk to someone at the end of the phone, there is the "What's Up" professional telephone counselling service for 5 to 18 year olds in NZ. The service was launched in September 2001 and is free to call from any telephone including mobiles, from between noon and midnight, seven days a week. For more information on this, their website is: www.whatsup.co.nz 

Finally, and just as importantly, don't forget to take care of yourself. Whether it's Mum or Dad doing the primary childcare, solo or partnered, it is really important that you take time out for yourselves. Don't hesitate to use Alternative Child Care, or to ask for help. http://newzealand.govt.nz/browse/social-welfare-support Use all the services that are on offer-find out what exactly is on offer from each one, build your own networks of support. Make time for special dates-write them up large on your calendar even if it's just going to the movies, or a coffee with a friend, it is important for your own sense of wellbeing that you do something for yourself. Try to set goals for yourself that are purely your own.

Join an internet group of age-related parents with kids who have PWS (there are plenty on the net), most of them have been through what you are going through and can give great support and advice.

No one said parenting is easy-it's not. It's hard yakker for anyone and has extra challenges for those caring for a child with special needs. We all know the feeling of being the constant meat in the sandwich, or ‘someone's mum, wife, partner' rather than the person we may have otherwise have been.

Finally, don't forget our freephone number, 0800 4 PWS HELP (0800 4 79743) if you want to ask questions, talk to someone else, be put in touch with another parent, or just to chat.

PWS Association (NZ) Inc