So it is very unlikely that Luke will be an astronaut when he grows up, but exactly what are the chances any of our typically developing kids will be? But what about our other dreams, our other hopes of things that may never be? But how often do children, typical or not, do as their parents wish? Not often. My parents wanted me to be a lawyer or doctor or marry one, neither of their wishes came true. But whatever those hopes and dreams may be, I think the most common one (and one that we share) is the hope that our children will grow up to be happy, healthy and well adjusted so they can be a positive contribution to society. There are many people with Down syndrome who grow up to get jobs, live independently, go to college, get married, and some have children and become parents. That may not happen for every person, however, I think people tend to put limitations or judge those with Down syndrome a little unfairly. And many may not realize how full and rich their lives are.
Some people may not know that many people with Down syndrome have high social and adaptive skills, leading to what some call the Down syndrome advantage (click here to read more). So they are not just a positive contribution to society, but by virtue of who they are and their attitudes and graciousness, end up lifting up the people around them. And I have heard other people say with the best intentions that if you are to have a child with a disability, then you are fortunate it is Down syndrome. Again, this statement may come across as offensive to some, but I think what they are trying to convey is this “advantage” and the positive effects having a child or sibling has on the family. That because a person with Down syndrome is more likely to have higher social and adaptive skills than what their IQ may imply, it will have a more positive impact on your life. For us, this is definitely true.
So even though a standard IQ test may only range typically between 40-70 for someone with Down syndrome, there are so many factors that these tests do not capture. One, is what I like to call emotional IQ, and that is the ability to read other people’s emotions and have the ability to cheer them up or calm them down (see reference here). The second area is adaptive skills, which is the ability to adapt to your environment especially in daily activities. I like to think of this as “street smarts,” meaning someone with high street smarts know how to live and adapt no matter what environment they are in (like living on the streets).
I can tell you that these social and adaptive skills are just as, if not more important, than a high IQ. A person with a high IQ that cannot relate to society can end up feeling alone, dejected and depressed. A person with a high IQ that has low adaptive skills will have struggles positively contributing to society. Human beings are social creatures so this makes sense. If you have brilliance within you but you can’t relate to others, work with others or have relationships with others, this is a different limitation, a “social disability” of sorts. On the other hand, 99% of people with Down syndrome have reported being happy with their lives, and I think that is a reflection of how they relate to others around them.
Even with IQ ranges, you shouldn’t limit or assume someone with Down syndrome is intellectually disabled. I read about a child with Down syndrome whose parents never gave up on her health issues and never limited her cognitive ability. So they read aloud to her everyday from a little baby, and she grew to love and devour books. By the time she was school age, they had her IQ tested and her IQ was 105. I also met a mother whose child with Down syndrome scored in the top quartile in reading in Maps testing. She also constantly exposed her child to books, and that love for books led to improved reading skills. This child is also fully included in her school district, which I also think helps.
I do caution allowing having your child’s IQ tested if you have any suspicions that the results would end up with you or someone else limiting your child. I have a little understanding of how some of these tests work having gone through them for my older son. Now my older son’s test results came in quite high. I do not share this with you to brag, but I want to tell you that these tests give you a very limited perspective of your child’s strengths and weaknesses. Our child does not act like some brainiac genius. He is very good at testing and he is sharp and loves puzzles, so this kind of testing is well suited to how he thinks and operates. He also has been fortunate to have been tested twice by adults that he has felt comfortable with and that he wanted to impress, which always helps. But he has his weaknesses too. And I know other very bright children who have not tested well because they don’t speak English well or have behavior issues (like fear of strangers or a sense of humor where they will say the wrong answer on purpose) that diminishes their score from their true potential as measured by the iq test. I have no doubt that people with Down syndrome are unfairly tested also because these tests do not tailor to how they learn or communicate or give adequate time to process things as their processing ability is slower than typical children, as well as being conducted by personnel that may not understand them. And they have no connection to the questions being asked, there is no incentive on answering the questions being posed. Instead of asking how to solve a puzzle, maybe ask how they would go about getting their favorite toy off the table because our little guy has impressive problem solving skills when it is for something he wants. Because of this, I think that standard IQ tests are not necessarily a fair reflection of their true intelligence.
I have also heard about mothers being concerned about their baby not being “smart,” and that their baby will have an intellectual disability. That may be the case, but I think you may find your child will surprise you. Our son doesn’t like cooperating “on demand” or being forced to do something he isn’t doing on his own, which makes me believe he wouldn’t perform well in a testing environment even if they asked him to do things I already know he can do. He also doesn’t consistently speak, although he has said a few words a few times but not on a consistent basis, but he communicates with us, even though he doesn’t sign (some children don’t use gestures and are more verbal in nature and we believe Luke falls in this category). But he understands words and communicates to us through his actions. When I ask him if he wants books, he crawls to his books so we can read them together. When he wants to sleep, he crawls to his room or points in that direction. When he wants a piggy back ride (his favorite thing these days), he crawls up behind me and pulls to stand and slaps my back with his hands. When he acts fussy at mealtime, I ask and sign “juice” or “cracker” or “drink” and he calms down knowing that I have gotten it right. Honestly, we saw a similar pattern in our older son who didn’t sign or speak or show any clear cognitive understanding of spoken words until around 14-15 months old. So it doesn’t concern me too much because I believe that Luke will find a way to communicate with us. So don’t under estimate your child and they may surprise you. I also believe each child has their own unique set of gifts and challenges. As their mother, it is up to you to help them hone these gifts and to ease their challenges. It isn’t easy sometimes, but the rewards you reap are so worth the effort.
My mother in law works in a non-profit that assists adults with disabilities, including those with Down syndrome. She told me about one woman with Down syndrome that grew up in a trilingual household, and can understand and speak 3 languages (maybe not fluently but still!), which is more than what I can say for myself! She also said that this woman is a social butterfly who always addressed everyone she meets by name, social skills that would probably put many of our own social abilities to shame.
There is another man with Down syndrome that is not a recipient of their services but works for an armoured car company for Pace tickets that are dropped off at their office. She said that he is equipped with a gun, just like any other armed guard, and drops off the tickets unaccompanied. This is a very big responsibility that I am confident that this person takes very seriously. In fact, many employers report that their employees with Down syndrome are hard working and have a positive impact on the workplace.
I read someone’s blog that suggests that in order to truly be a good example of inclusion, we should have friends with disabilities. I like this idea. I would like to have the woman who did the webinar as a friend, not because she has Down syndrome, but because she is smart, a caring mother and seems like a good person and one I would like to call a friend. There is another man who interned at Gigi’s playhouse who I met when Luke was just born that seemed like he had a good mind for business (which always interests me) and I would enjoy talking to him about his internships and the people he has met through it. Unfortunately, those are the 2 adults so far who I have had more in depth conversations with, so I can see where we have common interests and similarities. But I certainly would love to meet more.
So what does being “smart” mean to you? After reading this, I hope it means more than just someone’s IQ. I hope that one day having a high social IQ and high adaptive skills is just as respected as someone with a high IQ because intelligence comes in many forms.