This is not the sort of topic I typically discuss on this blog. But I felt compelled to write about this and since this is my blog…
I read Sarah Palin’s article titled “My Life with Trig” in the February 13 issue of Newsweek Magazine with quite a bit of interest. I have a daughter with Down syndrome. (She is now 22.) Additionally I’ve an active coach in the Special Olympics for 14 years. During those years I’m certain that I’ve worked with more than 100 athletes with mental disabilities, many of those with Down syndrome. Most relevantly, I’ve spent quite a bit of time talking with and sharing experiences with their parents and families. Ms. Palin says that she has met many others who have children with disabilities. I don’t doubt that. But I’m not sure that she has spent an hour or more at, for example, an athletic banquet, talking to those people what it is like to have such a child. So I believe that I have a better idea than most, possibly including Sarah Palin, regarding what it is like to raise a child with Down syndrome
My experiences are somewhat different from how Ms. Palin describes hers.
Note that children with disabilities vary from each other much as people without disabilities differ from each other. So I can’t possibly say that Ms. Palin’s description of life with her son is invalid in any way. All I can say is that it is different in a number of ways from my own experiences and those of the many other families that I have come into contact with.
First of all, however, I can acknowledge that she’s right when she says that it is frightening when you discover that you have a child with Down syndrome. While Sarah Palin found out that her child had Down syndrome when she was still pregnant, my wife and I didn’t find out that our child had Down syndrome until shortly after she was born. It’s difficult to describe your emotions.
When you first discover that you are going to have a child, you don’t expect it to have disabilities and you’re happy and excited. Nearly everyone who has ever had a child is familiar with this feeling. You might initially consider the possibility that this child will be President of the United States. Or the person who finds a cure for cancer.
But more realistically you fully expect that this new child will grow up, get married and have grandchildren that you get to spoil. So you have hopes, wishes and desires but also real expectations for this child.
Then, when you discover that the child has a serious disability, the hopes, wishes and desires vanish but even of those reasonable expectations also vanish.
It’s very much like thinking that your child - the one that you expected to have - died. You grieve for the child that you are not going to have.
Then, when the grieving is done, you deal with the child that you actually do have.
If the child has Down syndrome, what’s that child like and what is life like with that child? This is something that isn’t talked about much outside of the families that have members with Down syndrome and, in my view; people seem to lack accurate conceptions about what it is like. Sarah Palin’s article seems to reinforce the clichés of life with such children rather than matching the real world. Maybe I can help with that. It turns out to be MUCH better than people expect it to be.
There are often health issues, some serious. That needs to be mentioned. My wife and I were lucky in that our daughter didn’t have any.
One of the things that Ms. Palin says that I disagree with is this:
“My family knows that Trig will face struggles that few of us will ever have to endure, including people who can be so cruel to those not deemed ‘perfect’ by society.”
Children and adults with disabilities are, indeed, subject to ridicule. But so are people without disabilities. We all hear stories of bullying, especially during teenage years. But things like Facebook bullying is not something that children with disabilities are likely to experience.
People with disabilities tend to go to school and work around other people with disabilities. People with disabilities don’t pick on others, whether or not they have disabilities. Instead they genuinely like each other and genuinely root for each other. They really do. One of the most refreshing things about coaching in the Special Olympics is that you see all of the athletes genuinely wanting the others to do well. They want to do well themselves. But if their nearest competitor does well it makes just about all of them happy!
My favorite story about the Special Olympics comes from Sports Illustrated rather than my own experiences. I recall the article quite well.
A 100 yard dash was about to take place in a Special Olympics track event. For no apparent reason, one of athletes participating in the race looked up to the sky. The other athletes noticed and they looked up as well. Then the gun went off to start the race. The athlete who was first to look up, started to run. After he had gone about 20 yards he noticed that the others weren’t running. He stopped, yelled back at the other athletes to say, “Hey guys, the race started!” The other athletes heard that and started to run. The first athlete didn’t continue his race until the other athletes caught up to him.
I think that story illustrates how well people with disabilities work together.
In that same context, one of the advantages of Down syndrome – and this will surprise many people – is that the syndrome is fairly common and is accompanied by physical characteristics that most people can recognize.
How is this a good thing?
When people recognize Down syndrome in your child, they will lower expectations of your child’s capabilities. In fact they tend to lower the expectations below what your child is probably capable of. In the case of our daughter, and others with Down syndrome, people tend to be impressed with how much they can do rather than on things on which they fall short. As just one example, people are impressed when they see that our daughter can tie her own shoes. She’s capable of a lot more than that, but it gives you an idea of the sorts of things that will impress people who can recognize Down syndrome – which is most people – but have very low expectations. One woman was surprised to see our daughter simply take off her own shoes when we visited her house. The expectations can be that low.
In contrast, I know a number of children my daughter’s age who are equally disabled but have no outward signs of their disability. The parents of these children have told me on more than one occasion that they are constantly reminded of their child’s disability when they see the reaction of other people when the child does something consistent with their disability but inconsistent with their appearance.
Another thing that Ms. Palin talks about that is not really a part of my experience, nor the other parents that I have talked to, is when she explains how her “husband …spends many sleepless nights with this restless little one”. My experience is quite the contrary. I have never known a child who goes to sleep faster, and sleeps more soundly and longer than our daughter.
Here’s a true story: when our daughter was about ten I could tell that our daughter was in a talkative mood, so I laid down with her to help her get to sleep – much as Todd Palin apparently does. I sang these words from the well-known children’s song, “Rockabye baby on the tree top. When the wind blows, the cradle will rock. When the bow breaks the cradle will fall. Down will come baby, cradle and all…”
When I started the song, my daughter was talking.
After I got that far into the song – probably no more than ten seconds later – she was not just sleeping, she was snoring.
I often envy how quickly my daughter is able to fall asleep and how soundly she is able to sleep. I’m probably like most adults in that there are some nights that I lie in bed thinking of what happened that day or what will be happening the next day or the day after that. My daughter doesn’t have such worries, thoughts or concerns. So she sleeps like a log every night. Unless my wife or I have a reason to wake her up in the morning (for example, to get her ready for school) it is rare for her not to sleep soundly for ten consecutive hours. Many times have I wished that I could do that.
Another very positive characteristic of our daughter and, from my conversations those of others with disabilities, is that they never lie. That would be never. That’s no exaggeration. She might tell me something that is wrong because she is mistaken – she may think that it is Wednesday when it’s actually Thursday, for example. (Even that sort of thing is rarer than most people might expect.) But I can literally not think of a single time that she has told me a deliberate untruth.
But the single most refreshing thing about our daughter – and most people with Down syndrome – is how happy they are. Our daughter isn’t happy 100% of the time. But 95% of the time is a good, reasonable estimate. On those rare occasions that she has difficultly falling asleep, I can hear her laughing through the bedroom door as she lies in bed.
She also likes everyone. She doesn’t just say that she likes them. She genuinely does. There are many reasons for that. People like her. They don’t feel that they have to compete with her. While there is occasionally a bit of awkwardness in the relationship in the beginning – and our daughter is genuinely shy when she first meets someone – people quickly recognize that it is almost impossible for our daughter to feel any malice towards them so they respond in the same way.
Finally you find yourself changing in ways that match your child’s example. If you spend enough time around someone who is nearly always happy, you find yourself being happier more often. If you spend enough time around someone who never tells a deliberate lie, you find yourself lying less often. If you spend enough time around someone who genuinely likes everyone else, you find yourself liking a higher percentage of people. If you spend enough time around someone who doesn’t experience stress, you find yourself experiencing stress somewhat less.
Obviously I don’t think that everyone should have mental disabilities. But I genuinely feel that every family that has a member with mental disabilities is a better family because of that.
I think that Ms. Palin would agree with this. But I got the feeling she felt her family was better off because of the sacrifices they found themselves willing to make. I think that the rewards are different. I think that the family is better off because of the lessons that you learn from your child with disabilities.
One of the hypothetical questions that parents with children who have Down syndrome occasionally ask themselves is: “if there was some magical pill that your child could take that would remove their extra chromosome thereby making them ‘normal’, would you have them take it?”
Initially, soon after our daughter was born, the answer would have been undoubtedly ‘Yes’. But now, quite honestly, the answer is ‘No’. We’re very happy with her exactly the way she is and would feel that there was be a hole in our lives if she was any different.
To emphasize that point, I can point to two people who have changed professions – one more than the other – simply because they enjoyed being around our daughter so much.
One of them was a high school classmate of my wife. This classmate had a degree in education and was teaching in Junior High School. She didn’t find it very fulfilling. It was difficult and frustrating to battle the raging hormones in her adolescent students. But after spending time with our daughter at various outings, etc. she decided to go back to college and got a Master’s degree in Special Education. She’s now teaching children with special needs and finds that to be much more rewarding and, frankly, more fun than teaching children without disabilities.
One of our sons is doing the same thing. The difference is that he has a degree in finance, not education, and is actually working as the CFO for a small company. He grew up with his sister and obviously knows her very well and has spent many, many hours with her. Like my wife’s classmate, he’s decided it would be more rewarding and more fun to teach children with disabilities – people like his sister – than to continue to work with Excel spreadsheets. Like my wife’s classmate, he is getting his Master’s Degree in Special Education and is scheduled to graduate this coming May. He is making a more significant career change than my wife’s classmate. But he is looking forward to it very much.
So why would we want our daughter to be any different since her personality has inspired two different people to change professions to be around people like her?
I can’t think of any reason at all…
