Thursday, March 19, 2015

What I wish others understood about my son with Down syndrome


This guest post is by Kari Wagner-Peck, author of the blog A Typical Son. She is mom to Thorin, an 8-year-old with Down syndrome. You might know her as the blogger who got the New York Times' Ethicist columnist Chuck Klosterman to apologize for his use of the word "retard."

This post is in support of World Down Syndrome Day on March 21, which is a day of global awareness of people with Down syndrome. While I believe awareness is necessary, I think acceptance and inclusion are vital. What gets in the way of that happening is often true ignorance about children with disabilities, along with misplaced pity and fear. This is my wish list of understanding that would make a difference in my son's life.

My Son is a Multi-faceted Child

The two most common descriptors of children with Down syndrome I hear are "happy" and "stubborn." Sure, my son can be both of these as I can and really every human being on earth. I don’t find him to be more of those things over anything else.

If anything his humor—albeit child-like and boy-centric—is the hallmark of his personality. He’s eight so I will cut him some slack. He likes to walk around the house strumming his ukulele and composing songs organically. His most recent composition was titled "Everybody Farts." The lyrics were an enumeration of everyone by name or title who farted: Mommy farts, daddy farts, Coco farts, etc. Did I wish he would have stopped singing it when the landlord came over to check on a leak? Yes, I did desperately wish that to no avail. Was I eternally grateful he did not incorporate the line "The landlord farts"? Yes, I was.

He is curious and bright. This year we began homeschool. He has surpassed even my elevated assumptions about what he was capable of. My son is reading, learning math, handwriting, spelling and all the things other children learn.

He is a gifted photographer but like all artists he doesn’t want to hear about any of his mother’s "ideas" of what to take photos of.

Thorin is probably a lot like your son. He loves baseball, The Avengers, playing UNO, talking about farting, taking pictures, learning and having friends.

Photo by Thorin
My Son Needs More Time

When most people see Thorin they think he is slow, dependent and not capable of complexity. We are a society that values doing everything fast. That world is a hard place for my son who needs more time to process almost everything. He takes in the information but registering it and integrating it takes time. If he is nervous or upset it takes even longer. If people could be a little more patient they would get to see who Thorin really is.

Thorin has speech apraxia which means he has fully formed thoughts in his head but has difficulty communicating them. If he wants to see his best friend Ella he will say to me: "Ella!" I'll ask, "Give me the sentence—what about Ella?" He'll respond, "I want Ella play."

If I try to encourage him to elongate a thought with others often I hear: "Oh, that’s okay he doesn’t have to" or "What did he say?" My son invariably crumples.

We could all benefit form just taking things a little less fast and making sure everyone is part of the conversation.

My Son Does Not Enjoy Mascot Status

I was terrified about him being bullied when he started kindergarten a couple years ago. I was happy to discover he was literally embraced—as in, hugged by his classmates. One day he was late to class. When I walked in with him we were actually mobbed by the entire class so thrill to see him. I thought that was endearing and sweet. What I came to understand from my son is that he found it frightening, overwhelming and babyish. As his mother I was so happy he was not being bullied that I was negligent to the fact he was being killed by kindness.

My son is constantly reminding me he is a "Big boy." He is quite aware of when he is being treated as less than his chronical age and doesn’t like it.

I cannot afford to have a mascot around the house, anyway; I need help. So he is expected to clean his room, put his clothes away, do dishes (not just his), walk the dog, make his breakfast, help with all other meals and basically whatever he can to help this household.

There Will Be No Extra Credit for Helping My Son

Aside from being picked up and hugged, the thing my son likes least is being helped when he doesn’t want it or when he didn’t ask for it. I was with Thorin on the playground convincing him it was time to go into the school. Three children took it upon themselves to help: one grabbed Thorin by the arm dragging him, while one yelled, "You have to go now!" and the third was trying to put his backpack on him. I stepped in: "Stop, please! I’m the mother. This is not your job."

Two different parents reached out to my husband and I at the school to let us know their children wanted to help Thorin. This extending of "friendship" felt more like outreach and it was accompanied by a lot of smiling and exuberance—"Isn’t great! They really like him!" I got this feeling I was going to be asked to write college references for these kids someday.

Thorin and I did a class presentation together where he told his classmates how he felt about everything: the hugging and the helping.

Inclusion Means Everywhere

I often see my child ignored in group settings. Whether we are at the park, beach, library, a party or anyplace there are other children who may or may not know each other. He constantly tries to reach out by saying: "Hi!" or "Hey boy!" He is mostly not reciprocated to. I have had parents not meet my eyes when I beseech them with mine to do something. This is different than "mascot status" or the "helping friend." This wish is about the social contract all of us benefit from being included as an equal.

When I was kid if we were somewhere and a kid was on the sidelines one of my parents would inevitably come over to say this: "Hey, see that kid? Go include him (or her)."

"But, he’s weird!" I would exclaim.

"You’re weird, too, to somebody. Go. Now." Or "How do you know what he is? Go. Now."

And, I did. And, it was fine.

Including everyone is an important ideal. It is one I work to instill in our son.

On the whole the most profound limitations people with Down syndrome have faced have come from others. In the not too distant past people like my son were institutionalized, refused adequate health care and not allowed in school. Changing those conditions has more than doubled people with Down syndrome’s life expectancy and has resulted in individuals who not only finish school but may go on to a post-secondary education, independent living and even marriage.

My plea—because that’s what mothers are want to do is "plea"—is that you take to heart my wish list and help the next generation understand that my son has the same need to belong as your child.

Selfie by Thorin
You can follow Kari Wagner-Peck on Twitter @atypicalson

15 comments:

  1. Thank you for sharing this wonderful and informative post. I feel so much of this relates not to just her son and other people with Down Syndrome, but children in general that are different than what society thinks is the norm. I have yet to understand why or how some people view children/people with Down Syndrome as secondary/lower class. We have a friend, K, from church who happens to have Down Syndrome. I honestly forget sometimes that she has Down Syndrome, because I see her as a human being and a friend, not a person with a disability. I wish more people could be like that, instead of like another church member who once tried to play peek-a-boo/one person tag with a then 28 year old K (who latched on to me and hid behind me). I wanted to scream at the lady that K was NOT a child but I don't think it would have mattered to her. *sigh* I just don't understand how or why some people look at or treat people with Down Syndrome like second class citizens (or children when they're grown, or what have you), but then I don't understand why people do a lot of things. :\

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  2. I have a friend with Down Syndrome. She is in the school choir, likes biology, is popular with the other students, and uses her mind well.

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  3. Ah -- I just tried to post but it didn't come through. Do you moderate comments Ellen? If not, I will retype. Thanks!

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    1. I do not moderate--not sure why it didn't post, Louise!

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  4. My first real experience with a person with Down Syndrome was Jacob. We were in 4th grade and although he was in special education classes, he was in my gym class where only I included him. He is a very funny young man who wants to work at Moe's. We are in high school now but I still see him in the halls and he always greets me by name. Where most people shied away from what's different, I embraced it and found a great person.

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  5. wonderful article! Always love to read these. Thank you!

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  6. Great article. I'm a para-educator and I see a lot what you see. This kid in my class is A mascot. Its enduring but it can be hard to stay on schedule. I often tell the general ed kids please don't baby talk him he's 11. The kids are good about following my request. Your son is a great photographer.

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    1. I think you must be very good at your job. No para at his school could wrap their brain around that concept. Thank you:)

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  7. You are so on-point about what the world needs to know about your son, my daughter, and so many others. Many people, including special educators, don’t understand apraxia. I can count 3 teachers in all of my daughter's years in school who knew how to teach a student with apraxia. The others demanded answers on the spot. When she didn’t comply, they said she was uneducable. Thank you for this enlightening piece.

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    1. I can tell you this-- what I learned about apraxia was not from any school speech therapist.Explaining it to Thorin made a difference because he knows I believe he has big thoughts:)

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    2. My son's school speech therapist mentioned the possibility of Apraxia at his end of the year IEP meeting last year. It still hasn't been confirmed, but the more I read, the more it sounds like our son. It gets so frustrating waiting for him to spit out his thoughts, but considering that he did not really speak until he was closer to three years old (he was 2.5 when he began saying multi-syllable words), I'm glad he at least talks. We are lucky, in that the teacher recommended for him this year (he is in Kindergarten, Round Two) has worked with kids like him before, his school ST came highly recommended by his private speech therapist (whom we had to let go when we lost insurance), and that all the teachers whom I have talked to or have seen talk to my son don't make him hurry up when he talks. They are patient and kind towards him. Now kids, they aren't as understanding (no pun intended, since my son is hard to understand in addition to his slow speech), and it sucks.

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  8. Thank you for sharing Thorin and yourself with us, Kari! Please tell Thorin that his photo of the flowers is beyond fantastic! He definitely has "the knack" of photography!

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    1. He said: "I know!" So much for humble:)

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  9. My favorite part of this post is your pointing out that Thorin doesn't like being a mascot. There is a difference between true friendship, and being nice to someone just because the person is different and that is sort of a novelty. I used to work in a 3rd grade class that included one girl who had CP and used a wheelchair. Her social skills were a little behind, probably because she spent so much time with adults, but she was intelligent and aware and in most ways a very typical 8-year-old. The kids in her class would clamor for a turn to push her wheelchair to "specials," or to have her in their group for an activity, but I noticed they rarely actually talked to her... and when they did, they talked to her as if she were about 2 years old! I think maybe teachers go into it with the approach of, "We have a very special friend joining us, and we must all work very hard to include him." It would probably be better to be more like, "We are all unique in some ways and similar in some ways, and we're a class and we need to be kind to and include everyone."

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  10. I love this post! I loved reading about the "Everybody Farts" song-- a reminder to all of us that children with disabilities are, in so many ways, just like children without disabilities, and there are plenty of things (whether "appropriate" or not) that can bond them. Just like Angel the Alien, above, I really appreciated the section that spoke to Thorin being treated like a mascot. So many parents want their children to accept people with differences, but they don't realize that praising them for playing with kids who are different from them perpetuates this idea that people with disabilities are lesser and that we are completing some form of inappropriate community service just by spending time with them. Let's push our children to genuinely accept ALL kids, including those with disabilities, instead of telling them they are so wonderful just by singling out one kid with a difference and spending time with him.

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Thanks for sharing!



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