Number One – (31 & 21)

My sister Annie is 26 years old. She was born a few days before Halloween, the youngest of the three of us, twenty six years ago this month. She has dark brown hair and hazel eyes, and when I hug her, her head fits right under my chin. Because of this I know that her hair always smells clean, like shampoo. She lives by herself. (Incidentally, this costs my parents upwards of $45,000 a year). At times, this is successful, at other times, less so. It’s hard because it’s very expensive, my sister is very stubborn, and I think she is at the low functioning end of the clients where she lives. Six years ago my mother and I and my brother took my father to court and severed most of his parental rights after he kidnapped my sister and hid her from us. We did not see her for months. My mother and I are now my sister’s legal guardians. To say this was a long and unpleasant fight is to put it mildly and I think we will all bear the scars from this for the rest of our lives, but it is hard to say. Anyway, it’s not what matters, in the end.  I have never known a life without my sister, I have never known a world where I wouldn’t fight for her until I had no fight left in me. Who can say what interrupts your life, who can say what is your life? To me these things are one and the same.

In honor of National Down Syndrome Awareness month and in honor of Anne, who turns 26 this October, I will be blogging every day this month, sometimes about DS, probably mostly not. But I thought it would be nice if this first post was just about Annie, my little sister; about the stubborn mixture of adorableness and toughness and general all around sass I grew up battling with and laughing with and cuddling with. And I know there may be some parents reading this who have young children with Down Syndrome and while Annie should by no means have to be the example of what is the case for every grown person with Down Syndrome, I thought it might be informative and educational and maybe just the best way to let you see how proud I am of her – to tell you what she can do, what she can’t.

There are some cans and cant’s in all of our lives, here are the ones I know about Annie.

So, without further ado.

Things Annie Can Do

1. Take the bus

2. Budget, grocery shop and cook for herself

3. Write – plays, poems, journals. I should hook her up with a blog.

4. Read. She would rather watch tv, but she can read, and she has read most of the Harry Potters.

5. Use a computer, email, surf the web, etc.

6. Vote.

7. Swim the butterfly, run, walk, hike, ride a bike.

8. Walk downtown, go to Starbucks, check out the sales at Ann Taylor, walk home.

9. Use her cellphone.

10. Clean her apartment and do her laundry.

11. Shower, shave her legs, brush her teeth, paint her toenails, put on makeup.

12. Lie convincingly.

13. Have a boyfriend, break up with boyfriend, get back together with boyfriend. Repeat.

14. She loves “drama”. She sings, acts, writes plays.

15. Make change.

16. Navigate.

17. Tell a joke.

18. Take medication, make doctor appointments, meet with a therapist or a personal trainer.

19. She can always make me laugh.

20. Fly alone.

21. Take a cab or a limo.

22. Work.

23. Use sign language.

24. Bowl.

25. Dance. Her dancing at my wedding is legendary.

26. Tell time.

27. Drink (Although she doesn’t really much).

28. Turn anything, anywhere, any day, into a party.

29. Crack an egg with one hand.

30. Tell which one is Mary Kate and which one is Ashley.

31. Keep on learning. We have fought hard against the idea that after a certain point, people with Down Syndrome only need to learn practical skills like making change.  One of the coolest things about the place she is now is that Annie takes classes about things like the Civil War and now she knows more about Susan B. Anthony than I do.

Things Annie Can’t Do (or Can’t Do Very Well)

1. Drive

2. Have children (my father had her sterilized by improperly obtaining her consent).

3. Get up on time.

4. Be someone else. I say this because it is a HUGE issue in our family. We would all prefer if Annie, for example, stopped obsessively watching the Disney Channel and developed some interests more suited to what we think a 26 year old woman should like. But she just can’t become that person because WE would prefer it. She just really likes the Disney Channel, regardless of what we think about it.

5. Use good judgment. Unfortunately Annie really can’t tell when someone has her best interests at heart, at all, and not everyone does. This is one of the reasons she needs a guardian, and one of the reasons it is so frustrating to hold this position in her life. She is often drawn to those who are the worst for her. The people who make her do things that are “good for her”, that she doesn’t want to do, like diet or go on hikes or go to bed early – are the people she fights the hardest.

6. Turn off the TV.

7. Tell you her favorite anything. It’s interesting, she really cannot do this. No one has ever really figured out why. If you ask her, just to make conversation, what her favorite is (flavor, cake, song, whatever) she WILL NOT tell you. She just says “all of them” or “I don’t know.” It’s fascinating.

8. Be cool.

9. Wear regular clothes. I wish someone would start a line of good looking, well made clothes for very short, largerish people. This is a huge problem. Everything that fits is yards too long. There’s a lot of hemming involved.

10. Go with the flow. Annie lives and dies with routine and order. Things can’t be changed up at the last minute without much angst.

11. Wear contacts.

12. Hurry up. My lord, when she wants to be, she is slooooooooooow. I have never seen anyone else with such a talent for extending out a bedtime. It can take her HOURS to get ready for bed.

13. See the bigger picture. There is no A plus B equals C. It just doesn’t happen. I often wonder if she lives without this understanding as an inevitability, or if it’s because we protected her too much and she didn’t suffer the consequences of her actions enough when she was growing up. But deep down I think this is mostly because of her disability.

14. Stop eating. She has a really hard time with this. My mom believes that she is missing something in her brain that tells her when she is full and should stop eating. She can make herself sick and still keep eating, so it’s kind of an ongoing problem. But I know a lot of people who can’t stop eating who don’t have DS, so take this for what you will.

15. Make herself do things she should do, but doesn’t want to do. This ties in with #13 and #14 as well. This is the hardest one for me to deal with, I think because it’s just something I think grown ups have to do. We are nice to people we don’t like. We get up on time and go to work when we don’t want to so we can pay our bills. We eat the right food so we don’t die of heart disease. We save our money so we can buy things we want. We answer the phone when our sister calls, even if we don’t want to talk to her. Except not so much, with Annie and these things. To me, this illustrates why Annie will always lack true independence. Because she can’t make herself do things that she doesn’t want to do, and she can’t understand the reasons for why she has to do certain things, like work or clean or not eat cheeseburgers, she will always need to be parented, always need to be made to do things, because she can’t do that for herself. This is the thing that we will work on and struggle with for the rest of her life, my life, and the life of our family. But it is also her fiery will, her humor, her intelligence, and her stubborness that has gotten us all this far, so it’s always to early to count her out of any fight.

16. Support herself financially.

17. Drink milk. After years of stomach issues, we finally figured out that she’s lactose intolerant, and it has made a big difference.

18. Forgive and forget.

19. Get Over It. My mom visited Annie for parents weekend and made her order oatmeal at breakfast.  This was months ago and every single time I have spoken to her since, she tells me about how my mom made her order oatmeal at breakfast. Sometimes I really wonder – was it worth the calories? I really want to take a day with my sister some time soon and just let her do whatever the hell she wants to do – eat pancakes all day and go to bad movies and mcdonalds. I think it would be a relief for both of us.

20. Have a credit card.

21. Pretend interest for the sake of politeness.  Makes phone conversations a little one sided.

So that’s my list.  I hope it illustrates some of the challenges and some of the rewards of having an adult sibling with Down Syndrome.

Above all else, please know this. My sister Anne is funny as hell, stubborn as all get out, and is a remarkable human being.  Never ever ever, not once, have I regretted having her in my life.  She has changed me for the better since the moment I first held her teeny tiny self in my arms and I am eternally grateful for her – for the way she battles ignorance with grace and charm, the way she holds her head up high in the face of oppression, and the way she refuses to change who she is, even when others would prefer a different, more safe, sanitized, friendly version of the person she is.  I can’t imagine who I would be today without her, I can’t imagine.  I am afraid I would not have learned tolerance without her, and I’m still learning today.

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15 Responses

  1. This post means more to me than I can ever tell you. I appreciate your honesty and your humor. And I hope one day I can meet Annie (and you of course!)

  2. I love, love, love this post. Your love and respect for Anne just shines right through. You painted a very empathic, beautiful, and real picture of your sister. She is lucky to have you as a sister, and you her.

  3. I think your sister is cool. Annie reminds me of Beth in the book, Riding the Bus with My Sister.

  4. Thank you for a peek into Annie’s life. I think it’s very helpful to take a real look at the can and cannot list. I think the can list is darn impressive, too!

  5. You are educating me.

  6. Thanks for such an honest look at your sister. Mine, who just turned 30 last week also has a cognitive development disorder, not DS, but it is similar in many ways in terms of how she uses her mind and body. Her list, were I to write one, would be very similar to your sister’s. So, I know exactly what it’s like to have someone like this in your life.

  7. Thank you SO MUCH for writing and posting this! It is interesting and instructive–and powerful–to find out what Annie is like as an individual.

  8. thanks so much for this. I just sent you an email and forgot to mention that I worry about how my three year old will deal with having a sister with similar issues.
    The way you can describe your sister here really gives me hope for their relationship.

  9. You are a gifted writer, E. Thanks for this very real, very tender portrait of Annie. 🙂

  10. Thank you so much for this post.

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  13. I saw your blog on the list of 31 for 21 blogs and am so glad I checked it out. As a mother of a child with Ds, I often wonder about sibling relationships and adults with Ds. I look foward to reading your blog this month.

  14. A beautiful post. Thanks so much for writing this. It means so much to me. I tend to go down the worst case scenario road when it comes to what it will mean for my youngest, who does not have Ds, in terms of her brother, who does. A beautifully written, honest and poignant post. Thank you. I’m so glad I found your blog.

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