It’s been a while since I’ve written and I’ve got a few things that have been on my mind. The first one pertains to what I refer to as the “widening of the gap” and the second has to do with Kendall turning 5 (7/18/12). I’ll address Kendall and her accomplishments to date in my next post, but first about the gap.
When Kendall was under the age of 2, things seem to crawl to a screeching halt due to the ongoing care and questions we had about her condition and well-being. Because we were so entrenched in her day to day, it seems as though each day was a vivid memory that slowed time down. And during this time, the gap in skills and comprehension compared to those of non-WHS children were slightly recognized. Kendall at 12 months was a little behind (so it appeared) those in her age group who were not born with WHS. At 24 months, a gap still existed, but to the common public, there was little acknowledgement regarding her capabilities, physically or mentally.
However, as children move into the phase of walking, talking and socializing among their peers, they become little people that think on their own. We see this in our other children and we talk to them about things they can reason about and have opinions on. Even Cailen, our 3 year old, is absorbing humor and recreating it in her own ways. We see the development of other children all around us. We also see how our WHS kids develop, but at a much slower rate. At Kendall’s current age, we see this gap widening and it is very apparent that our child is different.
It’s not so much that she gets looks or that people point and ask. It’s not that she is so different that stares and comments are thrown our way. It is more about what the other kids start noticing and what they are recognizing as a true difference as they now compare themselves against what they perceive Kendall to be. For instance, in a group of 5 children (3 of ours and 2 neighbor boys), Kendall was the second oldest. We joked around about who was the boss of who based on age. Of course the oldest was the boss of everyone, while the youngest was the boss of only themselves. Kendall happened to be the 2nd oldest and it came as a surprise to the 3rd in line (neighbor boy) that Kendall was older than he was. Most kids just see her as a little girl or play doll that is much younger than themselves. Ironically on the flip side, Kendall quite often points to kids that may be older than her and refers to them as “baby”.
The point is this- as Kendall reaches the grand age of 5 and approaches the day of being in school with all the kids in the neighborhood, the gap which once didn’t exist (or appear to exist), has widened significantly. There is a drastic gap between her and the other kids her age. It’s not a bad thing, but something that I have become more conscious of over the past 12 months. And although she is trailing in a number of areas, she continues to receive positive attention from anyone she comes across. She says “hi” to everyone she sees, and most people smile and return the gesture. The other day at Walmart, I counted her saying “hi” to 28 people, of which 4 engaged in much deeper conversation about her day. She’s a tremendous ice breaker for anyone wanting to engage in conversation with strangers!
So, as this gap widens and the awareness of the fact becomes more prevalent in our lives, we face the challenge of her integration at a peer level: mainstreaming. The effect of this gap on her ability to mainstream is something we think a lot about. Will she have friends? Will her sibling’s friends want to play with her? How will she communicate with other kids and can they really understand her? It’s something we will all face, or have already faced.
Kendall is a kid that wants to be with other people. (She is also a lone ranger at times who wanders off on her own when she feels like it!). On the contrary, not many people her age chose to be with her except one really neat girl named Hannah. Hannah lives down the street, is a few years older than Kendall, and on occasion goes out of her way to come play with Kendall. It’s not all the time, but she makes it known that she sees Kendall as this baby figure that she can hang out with and carry around. It’s almost like Kendall is a real life doll to Hannah! Kendall loves Hannah and asks about her often. As parents, we embrace the attention that another child has for Kendall and love to see them interact. Even though this gap is widening, we see glimmers of joy that keep our hopes high about her ability to mainstream into a social setting that not only makes her happy, but also makes others happy to be with her.
A few weeks ago, a bunch of the neighborhood kids were running around playing together and Kendall wandered off to join the fun. Normally I would’ve grabbed her to bring her back, but this time I didn’t. I wanted to see what would happen if she just blended in; if she would join in the fun, or just do her own thing. I don’t recall what exactly the other kids were up to, but as I looked across the street, I saw them all gathering by the sidewalk with Kendall (accompanied by Hannah) as part of the group. She was just being herself among the clan- and the clan was accepting her as just being Kendall.
In the grand scheme of things, Kendall really doesn’t quite understand what it means to be included at this level. However, it means so much to me to see her accepted like this in a social setting. It’s a small win for her but an unbelievable achievement in our eyes. It made me so happy, I had to take a picture to share with people like me.
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Really insightful and thought provoking post, Kevin.
Thanks for sharing.
I completely understand this post and your thoughts. My daughter is 12 yrs old and its funny because when she was younger (1-5yrs old) her “differences” didnt seem to stand out, no one noticed or cared and she just blended in to the everyday. The older she gets its a little different, there is a noticeable difference in her and her demeanor and other children. Thankfully, because of the good job the public school system does in my town, most kids know her and say hi to her on the street or whenever they see her. Mari is a little standoffish and would rather engage with adults but its nice to know people acknowledge her and thats to say everywhere we go. She does not have any friends or any children that will come to the house to see how shes doing but if she happens to be outside other children will generally accept her to be in their group. The thing is Mari doesnt really play with things (ie bikes, balls, running and such).
One nice thing is that my family is so huge with so many children, step children and cousins coming and going all the time that there is always someone to play with if we need to get some kid time in.
There is one other thing that bothers me. I moved from one town to another when Mari was about 5yrs old and I was a nervous wreck because, again, everyone knew my daugher in that town where ever we went and I was really scared about children and people in our new town “accepting” her but they did. Now that she is 12yrs old, I again am contemplating moving in the near future to a new town and because of her age i wonder will they accept her, welcome her, poke fun or what. I hate the fact that my child may be bothered or targeted because she is a little different but I know that it can happen and possibly will. Especially at this age. So what is a parent to do. My answer is to move forward, as always and accept challenges as they come.
Thank you for your story.
I remember last spring when Mark and I took the kids to the park, and my older daughter went to sit on the swings where some slightly older girls were already hanging out. Amanda at 13 behaves more like a typical 7 or 8 year old due to her cognitive impairment and Autistic tendencies. I had always been so nervous that she would be rejected by her peers when put in unplanned social situations, but I knew that I had to begin to give her…and them…a chance. What happened was not only unexpected, but it warmed my heart in a way it hadn’t been in, well, 13 years. Where in the past, other children would just quietly walk away from her, this time the girls engaged in conversation with her. They asked her her name, and they patiently repeated their names when Amanda repeated her inquiry to the same for the third time. When Amanda decided she wanted to see what her brother was up to across the playground, I took the opportunity to approach the girls myself. I thanked them for being so kind and patient to Amanda. I let them know that their friendliness towards my child meant so much to me and that it takes a special individual to treat everyone the same, regardless of their apparent differences. Maybe it was because I made them feel good about themselves, but when their classmates arrived, those same girls sought out my daughter and introduced her as their “friend Amanda.” Each and every child was as warm and accepting as the next, and it reassured me that there really are some good kids in this world– it is just important that parents teach them early about acceptance and we, as a society, continue to encourage this kind of “mainstreaming” between our children with disabilities and those without.
This came at a perfect time for me to read. Made me realize everything will be okay! I have not had much time to log on and read but it seems whenever I have a question and may need to seek advise I can log on and someone’s post almost always speaks to me. This was the first post I read today and It spoke to me.