We all know how putting the stress on one word, as opposed to another, can change the whole meaning of a sentence. I was reminded of this lately when I drove by a billboard showing a picture of a pretty, smiling child with some kind of motor issues using a walker. The tagline on the billboard said, â€œHelp children like me.â€ [It was undoubtedly posted by one of those non-profit organizations trying to raise money to cure something. Imagine that! 🙂 ]
At second reading, I saw that they were talking about helping children who needed assistance with mobility. â€œHelp children like ME.â€ The first time I saw it, the stress landed differently and I read â€œHelp children LIKE me.â€ I was confused seeing this kind of request on a public billboard, and then I realized that it was my take on the sentence that was altering the meaning. My experiences with Erin and my concern for helping her build a strong social life were causing me to interpret the sign in a way that reflected my current priorities, and not the intention of the sponsoring organization.
â€œHelp children LIKE me.â€ No matter what the billboard was supposed to say, the meaning that I took from it was the one I was supposed to take. Whatever cosmic force was active in me that day apparently was strong enough to cause me to change the intended stress pattern of the sentence. As our children get older, their issues change and our priorities follow those changes. As early developmental challenges pass, we go into school-related tasks. After we get our school placement issues settled (and resettled and resettledâ€¦), we find ourselves more and more aware of the need to help our children be appropriately included in social experiences. Though seemingly a natural part of life and growth, having PWS takes this effort to a new level.
Itâ€™s amazing how even the smallest differences can push a child slowly toward the edges of social circles so early in life. Whether itâ€™s having a special diet, speech challenges, OCD-type struggles, anxiety, or whatever part of PWS that plagues a specific child, those â€œquirksâ€ are enough to give the â€œin crowdâ€ reason to edge them toward the outside of the group, or worse. Many of us with older children have watched with broken hearts as our children have been marginalized, sometimes subtly, other times directly and heartlessly. The pain involved in this is something that we all have experienced in various ways at various times in our lives, and something that none of us want to see added to the already loaded lives of our children with PWS.
So, how do we up the odds that our children, even with their challenges and issues, will have friends that really LIKE them? One thing for sure is that this, like almost everything else in PWS, canâ€™t be left to chance. We canâ€™t just â€œhopeâ€ that things work out socially for our children. We need to develop a plan and implement it so that weâ€™re more likely to see that success. What that social plan looks like depends on the interests and habits of the individual families. Whether itâ€™s involvement in school, church, sports, special interest groups, neighborhood activities, or something else, the important thing is to have our children involved in things where they make a visible and valuable contribution. Being a â€œvaluedâ€ member of a group builds a sense of importance in anyone, and how much more in a person who has so much to deal with because of the various components of PWS. When everyone knows that the group is weakened because of the absence of one of its members, then itâ€™s clear that everyone has an important role to play and everyone is valued. Knowing that you are one of those people of obvious worth goes a long way toward building self-esteem in our children.
Another important part is helping our children create a circle of friends. I first heard this concept at a national convention several years ago and have a book by the same title that came from that meeting. These are friends who know our children, know their strengths and challenges, and consciously help create an environment of inclusion. Creating a circle of friends for our children goes a long way not only to help them be included in activities, but also to help protect them from some of the trickier parts of having PWS. I remember talking to Robin MacGillivray, an adult with PWS, about this at one of the Kentucky walk-a-thons and she said that having this circle of friends was critical to her being able to enjoy and participate in social events. She said that her friends would go so far as to walk through a buffet line with her at a party, one in front of her and one behind. They agreed to eat like she does and she knew that they were there to support her in making healthy choices. How I treasure that conversation and all the great ideas like this that Robin shared.
As adults, being â€œlikedâ€ has more or less value, depending on our personalities and needs, but as a child, being liked and included is an important part of developing a healthy level of self-esteem that will allow us to become confident adults. Itâ€™s good for all of us to take inventory of the goals we have for our children. Physical health and education take up a great deal of our time, but letâ€™s be sure that we are being very intentional about the development of our children’s interpersonal/social skills in order to help them find their place in the communities in which they are a part.