New Generation

From Jason's Mom

I have a wonderful perspective because I have a 6 year old son with PWS and I volunteer with a lot of activities with teens and adults with PWS and I am the PWSA of OH chapter's parent mentor of families with infants to school age. Oh my word - have times changed, supports changed and the outlook for the future of the newer generation in no way mirrors what families had to go through even 10 years ago. We as newer parents know so much more of what is going on with our children medically, physically and mentally than older parents and really have an "edge" to get help with strategies and supports. I have to give tons of credit to the parents of older children that answered countless questionnaires and volunteered for research to help our generation - which is one reason we get growth hormone covered by insurance instead of fighting for it or going bankrupt trying to pay on our own.

There are certainly some behavior characterisitics of PWS that are more intense then a typical child; yes they can be more stubborn, more routine oriented, and have more intense temper tantrums - but as others have said this is in varying degrees and depends on a lot of other factors as to how your family chooses to handle it.

My Jason is an endearing, loving and absolutely too hugging (he will go up and hug strangers) child, but as he is getting older we did notice more intense temper tantrums (more than typical) when his routine is changed and we transition him from one activity to another too quickly. We had heard about this, I have seen this in teens and adults that have not had interventions with behavior strategies and because we were ready and informed we immediately got a professional to help us help him. We are teaching him how to deal with frustrations appropriately, we are teaching him the social skills needed. We are pro-active in helping him so even if he is prone to be on the more severe side of the behaviors for PWS - he has so many supports in place to reduce the behaviors to a more acceptable level. Every thing has changed for the better the past 4-6 years just since Jason was born. Yes there are complications to PWS, but we are so very fortunate to have more tools and understanding to help our children. I like to compare Jason's future to a child born 20 years ago without a leg and was destined to be in a wheelchair for life. A child born now without a leg can be fitted for a prosthesis when a toddler and is capable of a full and active life because of the technology and supports received now at a young age. I think it is good to know and accept the "possibilities of complications of PWS," there are still things that cannot be changed. I also think it is better to be prepared and change those complications into successful strategies for the best life possible for Jason. He will succeed, as all my kids will, to the best of their ability.