Explaining to Friends
Some people notice that our children are different and may ask about the perceived difference. Even though their question likely stems from kind concern, the result is an awkward moment. I know these people have never heard of PWS and some of their eyes would glaze over if I started to tell them any details. While close friends and relatives are likely anxious to learn about PWS, others are less interested about the details.
- I typically respond by saying: He's gotten off to a slow start, but we are working him hard and giving him a lot of love and are amazed with his progress.
- The next level of answer: He has a metabolic problem, somewhat like diabetes and he has difficulty absorbing the energy from food and using it to grow, remain alert, and move his muscles.
- If they are still interested, then have them buy you a cup of coffee and tell them the whole story! :)Or, you can send them here!!
Our children are at risk for Asperger's Syndrome. From the beginning we need compensate by modeling ideal social interaction even though they may not be able to reciprocate our smiles or laugh at our jokes because of their low tone. They should be included in the family activities and stimulated just like any other infant even though they are not able to cry to demand attention or squeal to demonstrate delight.
J Autism Dev Disord. 2004 Oct;34(5):573-82
Deficits in social attribution ability in Prader-Willi syndrome.
Koenig K, Klin A, Schultz R.
Yale Child Study Center, Yale University School of Medicine, New Haven, CT 06520, USA. firstname.lastname@example.org
Prader-Willi syndrome (PWS), a genetic form of mental retardation, involves a myriad of physical and behavioral problems. Poor social adjustment has been reported, but the origin of this difficulty is unknown. The Social Attribution Task, a measure of one's ability to make appropriate social attributions from an ambiguous visual display [Klin (2000) Journal of Child Psychology and Psychiatry, 33(5) [861-876] was administered to study participants with PWS, participants with pervasive developmental disorder and an IQ matched comparison group with no known syndrome. The participants with PWS performed significantly more poorly than participants with comparable intellectual ability, and not significantly differently from the group of participants with a pervasive developmental disorder. Poor performance on this task by the PWS participants suggests an underlying difficulty interpreting social information that is presented visually, which may be a critical factor in the impairment in social functioning in this population.
Visit Healing Thresholds for more detailed discussions on therapies related to autism and Asperger's.
Following is the text to the article one family placed in their church newsletter. You'll see that it is a very "dumbed down" version of our understanding of PWS, but we figured that if people really wanted to know, then they would either ask questions or do their own research. Please feel free to use this in any way you might wish- it's not copyrighted, so if you want to copy portions and make substitutions- feel free! I hope it will be useful!!!
12/04 Every so often, one of our church family will ask, "Did you ever get any answers about what was going on with N--?" For those of you who might not have known N-- when she was first born, she resembled a ragdoll. Everyone who sees her now comments on how far she has come and on how entertaining she is. I sat down to write this, first of all, because I wanted to thank everyone who has prayed for Noelle and our family. Words cannot express how blessed we have been by the support, concern, and love. We also feel blessed by the obvious joy that Noelle seems to bring to so many people. And second, I wanted to answer that question I started with. We learned over the summer that N-- has Prader-Willi Syndrome, which is a genetic disorder that results from a lack of genetic material associated with chromosome 15. The hypothalamus does not work properly and PWS kids do not have the normal feeling of being full. Their metabolism is about 60% of a normal person's. There are a variety of other symptoms that can be associated with PWS such as cognitive impairments, speech/ language difficulties, scoliosis, sleep disturbances, and behavioral difficulties. There is currently no cure for PWS. If you decide to do any research on your own, I want to stress that anything you read should be tempered by the awareness that every child falls somewhere on a spectrum- not everyone is as severe as some of the cases described on the web.
Right now, we suspect that N-- is at the mild end of the spectrum. N-- is doing very well. She is 30 months old now and has maintained the same weight since we started her diet last winter. She is climbing, running, and loves to swim. She learns something new every day and though she has her "days" like any other two year old, she is usually a little bit of sunshine in anyone's day. N-- is our "princess"- in every sense of the word! We also count our sons as such blessings to our family. After N-- was born, S-- kept asking when we were going to have another baby and my response was always, "Mom and Dad don't plan to have any more". To which S-- would respond, "But what if it's God's plan?" Talk about the faith of a child! L-- may be one of the biggest gifts Noelle has ever gotten, as his activity level (and mischevious nature) is often the catalyst that gets N-- talking and moving.
This is the brief synopsis. Each member of our family will admit that at first this was difficult news for us. It was tough at first sharing the news with family and friends because she seems to be doing so well- she has made such gains (her development is not all that delayed) and is such a happy kid. Yet we now know that there is a genetic predisposition for certain behaviors. I think we have all come to an acceptance of her diagnosis, but there are occasionally days when it is still hard- because there are plans that we had made in our own minds for her future. However, we are clinging to the fact that God has a plan specifically for her. We ask that you keep N-- and the rest of us in your thoughts and prayers. We are so grateful for the love and support we have already received from day one with N--. And hopefully you will also be on the receiving end of the joy she gives us, as she runs around church, flashing that smile of hers and finding someone that she believes needs to join her in her explorations.
Keeping It All in Perspective
It's difficult to have a child who is different from others. No matter what the diagnosis, there is a cycle of grieving that takes a different course from, say, the grief of a death. The grief of a parent for the loss of a child is of utter devastation, emptiness and despair. The grief of a parent whose child was born differently abled, is to grieve for the child that might have been, to suffer alongside the child who now is, and to walk the miles with that child. Grieving is also cyclic and will occur over and over again, particularly when your child hasn't reached the milestones of other children, or seems to fall behind all the time.
Your tears are there only because you care so much, love so hard, and are at one with your child so much, that you mourn for what you see as his loss.
But, oddly enough, our children are happy, are content, they delight in the world around them; they learn at their own pace; are not rushed, or hurried. They literally take time to smell the roses and are not trapped into the "must haves" "got to do's" nor are they competitive, jealous, or ambitious. They live almost in a parallel universe. They don't seem to care if people look at them; in fact, they often go out of their way to engage others in conversation, and are happy to share.
It's other people who don't know this.
Their loss, I say.