Staying on Top of Things
My little boy was born in 2004 and is now 3. He has no delays and he is delightful and energetic and smart and funny and irritating and loving and thin and muscular. So, is it over? Do I now get to breathe???
You know, I don’t really know when we get to breathe. Right now, I think that the fact that we believe that we can breathe with our “normal” children is just an illusion that we invest in to stay sane. Therefore, deciding to breathe or not is more about you and your processing than it is about your external reality. Hah! I like these fancy words, but I can’t say that I am there yet.
The other way to say it is that there will always be something and because you know your child is missing genes you will most always have more to worry about than you do for other children.
Kian qualified for services through age 3 because of his genetic diagnosis and I was so happy I continued, because we really shored up his skills. I believe it is great to continue services, even if only on a monthly, consultative level.
What we notice with Kian is that the quality of his movements isn’t always the best. For example, we are working really hard on fine motor skills. This is tough because he does well on a fine motor assessment. But, his finger strength and dexterity still isn’t typical. It really doesn’t matter at age 3, but I am worried that when he starts writing at age 5, the weakness will get in the way of his learning to read and write. So, we are working hard to normalize his hand strength and dexterity. Many kids with PWS have graphomotor problems that get in the way of their education.
I also belive that Kian is at risk for learning disabilities and I am staying vigilent looking for.
Plus, I believe that I will always have to be vigilant about Kian’s diet. This means that I spend a certain amount of time and energy planning meals. It also means that with time, I need to give him a good foundation for making those choices himself.
And, I believe that our kids need more exercise. So, I go out of the way to plan a lot of movement for Kian in a day. His body is responding remarkably to gymnastics. He does gymnastics with “normal” kids 5 days a week. And he doesn’t have any delays relative to them. Now, I believe that is because he has many more reps to build muscles and muscle memories than most of the kids have. Nonetheless, the results are amazing.
Finally, I believe that kids with PWS are at high risk for autism and every effort should be made to provide them with social opportunities and social feedback: preschool, playdates with peers, etc. See http://www.HealingThresholds.com for more ideas.
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.
Some people hesitate to use the "c" word because the only meaning it has been given is one that seems unrealistic. I'm neither a scientist or a doctor, just a mom, but I'll tell you what it means to me. For the record, when I use the word "child," I am referring to one of any age. Poor Erin! When she is 90 and I am 130, she'll still be my "child."
In a perfect world, a cure for PWS would immediately banish it to the medical history books along with the black plague and leprosy. Since our children already have it hard-wired into their systems, it seems that dream will be one that can more likely be realized by the yet unborn. I believe with all my heart that that day will come and for the sakes of all the children and families who will be spared the struggle and heartbreak that so many of us have gone through, that day can't come soon enough. I would love to live long enough to see that, but I'll settle for living long enough to take care of Erin as long as she needs me. :)
For those of us who have children with PWS already, the "cure" is much more likely to look like a package of effective treatments that come as close as possible to making PWS irrelevant in the life of the person with that diagnosis. This package will most likely be different for each person as the way PWS presents in individuals differs widely. Most of us long for the day when our children's futures will not be threatened by drives that they struggle to control, so the hunger issue is so very important. Many people feel that the discomfort brought on by the hunger is a very significant factor in so many of the other symptoms of PWS--irritability, inflexibility, learning issues, sensory dysfunction, OCD-type issues, etc.--and by diluting the hunger, by making it irrelevant, we can go a long way toward reducing/removing the effect of some/many of the other symptoms. We can artificially keep our children slender on our 700-800 calorie diets, but finding a way to release them from the forces within PWS that drive them to eat would be so much better for them. With all of our good training, we have much reason to hope that they would carry these incredible nutritional guidelines into adulthood, and why not? I would just like to know that Erin is free to make reasonable choices without having to panic about every single bite for the rest of her life. That's a goal of mine and one I think is realistic. In time, we'll know. Could there be more out there than this package of treatments for this current generation? Without hesitation, I can say YES! There well may be fantastic solutions to our issues just waiting to be identified. Medical advances we would never have dreamed of may be closer than we can imagine. But friends, even if not, even if a package of treatments that make PWS irrelevant is the worst case, I can live with that. :) It's worth everything we all put into it to know that we are doing everything we can to work toward that.
Isn't there a risk that we will fail, that we won't find anything to help our children with PWS, that we will have wasted our time? Yes, there's a risk that we could fail to find the answers we so desperately seek (Although from what we've see so far, that's unlikely!), but is it a waste of time? Not on your life! I can think of nothing, no higher goal that my life could have, than to find ways to smooth the path for children as precious as all of ours are. Erin has turned my life inside out and opened my eyes to the world around me that I would have been way too busy to see without her. She has taught me to love in a way I had not known before and changed the way I think, the commitments I make, and the priorities of my life. Anything I do for her pales by comparison to what she has done for me. I thank God for every minute of every day that she has been given to me, and pray for many, many more. Friends, this is not about supporting one organization over another. This is not about favoring the young over the old. This is about doing whatever we can to find freedom for those we love, for the children who have come straight from our hearts and have changed our lives forever. Do whatever you can, big or little. Do whatever you can, now or later. Do whatever you can with whichever group floats your boat, be it your local support group, FPWR, National or whoever. Join one or join all. Just make up your mind now, here at the beginning of an exciting new year, to include the support of research in your life's plan. If you need/want specific ideas, contact any of those organizations. :)
Whether you're actively supporting research or not, know that our efforts are as much for your children as they are for our own. We all started out with one child in mind--our own, but we soon fell in love with a population of children who have stolen our hearts. We struggle because they struggle. We hurt because they hurt. And we will keep working, as long as it takes, because they need for us to. They cannot do this themselves and they are depending on us to speak for them, to fight for them, to find answers for them. We can't wait for some else to do this for us, so, those of us who feel called to work in this way, are doing just that.
Join with us, pray for us, send us positive energy, and keep your spirits high. Our days require much of us, sometimes more than we think we can bear, but there is much reason to have hope--strengthening, energizing, transforming HOPE! Together, always together......