This Little Square World –

October is National Down Syndrome Month. The goal for many parents who blog and have a kid with DS is to blog everyday about DS. I haven’t had time to blog about anything in a while so I will cut myself some slack and blog when I can.

Some things I learned this first week of National Down Syndrome Month:

1.   My sister told me to watch this new show called The New Normal – episode three in particular. In this episode there is an adult man with Down syndrome who is a high-maintenance juice bar customer, sort of angry, totally homophobic and he belongs to a gym. Yay! for a character with DS who isn’t happy all the time and who makes other characters in the show appreciate the good things in life because of their simple, simple ways.

What I want to see – a show with a menacing, coke-snorting, pimp who happens to have DS. People with DS are not all the same – just like the rest of us.

Ryan Murphy one of the creators of the show also does Glee and American Horror Story – all three shows employ actors with Down syndrome who play not your typical person with Down syndrome. Thank you, Mr. Murphy for helping to take my kid out of the “Happy Meal Box”.  Check out this story about actors with DS who are making a difference

Lauren Potter and Jane Lynch – Glee

2.   I was in the Target checkout line with my sister, Betty, and Thorin when I saw a young man with Down syndrome and his girlfriend who was A Typical. Like in “Normal”.  (Or “looks normal” but really “has something”?) This blows my mind. Really, did I just see that? Ryan Murphy, are you reading this because it might be the next big thing.

It took me a while to see he was a big, good-looking guy and she was this petite, cute girl. And – that’s all they were. Or is it? Ward is convinced I’ve mistaken their relationship. Did I? Does it matter? It’s like Guess Who’s Coming To Dinner? Or it isn’t. Maybe he is her pimp.

Here’s the thing – Thorin will date. I don’t have a clue who he will date but he will be a better dater than me. Most of the world is a better dater than I was. I would say at least 12% of what I like about being married is I don’t have to date.

3.   At a restaurant we noticed a girl who looked to be six or seven with Down syndrome. When Thorin and I went to the bathroom the mother was there with one of her other children. She said, “Oh, Hi!, my daughter noticed you!” pointing to Thorin.  “She said there was a little boy here with Down syndrome and here you are!”

I was thinking,” Why are you pointing at him and saying the words, ‘Down syndrome’?” I wanted to say, “Don’t say that – he doesn’t know that – yet. “

My belief  (rightly or wrongly) is Thorin doesn’t know he is different because we haven’t told him.

My response took me by surprise. It shook me. It still shakes me.

Thorin’s first day of kindergarten

The thing is – I don’t know how to tell him. I don’t know when to tell him.

I wanted to ask this mother how her daughter knows that is part of who she is. Did her daughter ask? Did they decide to tell her? Worse did someone say something?

How will I tell our son about this little square world we live in?

This entry was posted in By Notatypicalmom, Down syndrome, education, Inclusion, Parenting, Special Needs by Kari Wagner-Peck. Bookmark the permalink.

About Kari Wagner-Peck

Kari Wagner-Peck lives with her husband and son in Maine. She is a writer & storyteller who home schools with her son. She has a M.S.W. and has been at various times a practicing social worker, documentary videographer, film festival director and retail clerk. She is the author of Not Always Happy: An Unusual Parenting Journey, May, 2017, Central Recovery Press. She has been published at The New York Times Well Family blog, The Huffington Post, The The Good Men Project, The Sydney Morning Herald Daily Life blog, BLOOM and Love That Max among others. Author page: kariwagnerpeck.com Twitter @KariWagnerPeck and Facebook: www.facebook.com/NotAlwaysHappyLive/ Email: kariwagnerpeck@gmail.com

9 thoughts on “This Little Square World –

  1. A good film I watched recently (also a real tear-jerker) was called “Me Too”. It’s in Spanish, so you may have to watch it with subtitles, but I would say it’s well worth the effort. When it comes to telling them, I’m sure we’ll find the right time but it worries me too. At the moment my typical 6 year old is sad because she DOESN’T have Down syndrome… :P

  2. My son is now 14 and has Ds. We always talked about Down syndrome around the house like it was just a fact of life, no value placed on it one way or the other. When he was 10, I asked how it felt to have Ds, and was floored by how FURIOUS he was. He told me he hated that it made him “slow, like a sloth.” On one hand, it was awful to have him feel so bad; on the other hand though, he understood that Ds is a part of him, but not all of him. He wasn’t mad that he was just a loser who struggled at things others found easy he was mad about having Ds. At the moment, he seems to be embracing Ds as a challenge and something to be proud of. I don’t know if what we did was right, and I imagine his feelings will shift back and forth as he gets older, but they are his feelings to deal with now, rather than something I have to find a way to explain.

    • Thanks for taking the time. I think I am afraid of what his feelings will be but that’s my problem. OK, talk about it like it’s a fact of life.

  3. My husband and I made a pact when my boy was still in utero: We will never mention Down Syndrome. We will only celebrate his growth and development and joys as they occur. Well and good. However, there are the scads of medical appointments, and he is in the room with me when we are discussing … well … it generally isn’t mentioned then, either, as it’s in the records. And most of the conversations with family and friends, with me in the room, never include that info because everyone already knows. But then I noticed that my husband would say it, he has a son with Down Syndrome. I was furious. I felt he was saying it to garner some sort of favorably sympathetic response. Maybe it was just pride … he does seem to be proud of the boy. And then I found myself declaring it, in the process of applications. School, financial aid, children’s activity groups, on and on.
    Now my boy is ten. Last year, he started having playground spats and otherwise showing signs of sullen or depressed feelings. The school caregivers ended up monitoring social exchanges and intervening by separating or redirecting, and then I stopped hearing about it in the school journal that goes back and forth to share comments about his days. Last spring, he enjoyed a children’s chorus group, so I was worried when I saw at the first few chorus meetings this fall, he avoided participating and even burst into tears. I think he enjoys the activities, but I think he is now aware of his inability to keep up with the conversations, so he prefers to check out by playing alone, or to break into his ‘hamming it up’ character — I am just in this wait and see mode with him. The last rehearsal went smoothly and happily. I am reading again about the ‘nine year change’ that occurs (Waldorf perspective on child development). I am looking for a new school setting for him … but now I’m blathering. Thank you for sharing your life with us.

    • Not blathering! Thanks for taking the time. It changes – which is what I thought might be the case.

      I still don’t know what to do. I trust I will know when I know.

      Good luck with the school. And please keep reading.

  4. When my son, who has Down’s Syndrome, was seven, he got leukemia. Soon after beginning treatment, he lost all his hair. One day, we were on the oncology ward and a young, newly diagnosed DS patient arrived. “Look mummy! He is like me!” Sharif said. He had never said that about any of the other little bald patients. He knew, just as he knew he was a boy, and I never told him that either!
    Thorin probably knows already. He may not have told you yet he has conceptualised the whole thing, Quit worrying! Having an extra chromosome is pretty cool!

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