Down syndrome

Some things I have not said.

So here’s the thing. I’m going to share some stuff that is probably going to rub some of you the wrong way. In this case, I don’t mean to offend. I’m aiming at honesty. And sometimes the way we feel doesn’t so much jive with the way we know we should feel.

I’m a member of the Down syndrome community. My daughter is two. She’s adorable and everyone loves her. I didn’t have a hard time with her diagnosis because 1. I already had a special needs child and knew of the joys that come with the trials and 2. I felt like I had been prepared for her. I just had a feeling she had Down syndrome.

But there’s a new reason why I think I didn’t have a tough time in the beginning: Denial.

I’ve been fine with Abby having Down syndrome as an infant and as a toddler. I have not been fine with her having Down syndrome as a ten, twenty or thirty year old. In fact, the thought scared me so much that when it intruded into my conscience, it was immediately buried with thoughts of The Now.

And when I was faced with the reality, when I saw older people with Down syndrome, the experiences have not been good. The parents looked very tired or in one instance, were not kind to me at all. I felt my insides scream out “NO NO NO NO NO NO…” I did not want that reality. So again, I buried it.  Please know this doesn’t mean that I don’t love adults with Down syndrome. It’s just been a hard reality to face that Abby will be older. That the differences that aren’t so apparent in her now, will become VERY apparent as she ages.

This week I’ve had the opportunity to go to Advocacy Day on the Hill with the National Down Syndrome Society, the Global Down Syndrome Foundation and the National Down Syndrome Congress.  On Wednesday night I had training with 162 other families from 36 states and Peurto Rico. There were a lot of self-advocates in attendance, meaning a lot of adults with Down syndrome. I felt my heart sink as I thought about Abby getting old. About her living with us forever. What kind of life would she have? Would she be happy? I didn’t talk to the adults much, because I was afraid. I was afraid it would only make me sadder.

I left the meeting and several forces worked on me at once. My sadness bubbled up as I was forced to acknowledge the fact that Abby would become an adult one day. But still very dependent on me. Deep down I think I was really afraid that as Abby aged, the joy in Down syndrome would slowly disappear. I got stuck on the Metro because of power outtages, and I HATE being underground. I also hadn’t eaten since morning.  By the time I was 4 stops from home, I was shaking, sweating, sick and in the throws of a full-scale panic attack. I sent my husband a string of texts telling him to be waiting for me at the door of the Metro because I thought I was going to pass out. I just barely made it to his car when I lost it. I’m embarrassed to say all of this, but I think it speaks to the kind of turn around that was to come.

I told Lance that I couldn’t do it. That I couldn’t deal with even getting to DC (driving there is the worst and with my new found hatred of being underground, the metro isn’t a friendly place, either). And I knew that I was paired with other families that had older kids with Down syndrome. I told him I wasn’t able to face it. It was too much all at once. Then Dr. Seuss came to mind with, “…and you’ll  face up to your problems, whatever they are.”  And I can’t fight with Seuss, he’s dead.  So the next day, I went.

I’m so glad I went. I feel like we did a lot of good with the members of congress we were able to meet with. But by far for me, the best part of the day was getting to hang out with the most amazing people I’ve ever met. I went with two other families who have children with Down syndrome. Katie is 10, and Todd is 33.  Their parents were the kind of people I could only dream to become. They were honest. They were patient. They were REAL. They didn’t sugarcoat things which made me know that they weren’t putting on some sort of show to keep me comfortable with my future. Todd and Katie showed me so much more that there will ALWAYS be joy in the extra chromosome my daughter carries.

The both loved and accepted me from the beginning. They didn’t see my pit-stains and think I was gross. At least they didn’t mention it. They just were happy to meet a new friend. And it wasn’t what I thought at all. I’ve been wrong. I knew very well that the best way to get over any sort of prejudice is to immerse yourself in the community you fear. I have not done that. I’ve never really even spoken to an adult with Down syndrome.  My fears were unfounded. Sure, these two will always need some support from the community and their families, but not to the extent that I had imagined for Abby.
Katie was like any other 10 year old girl I’ve ever met. She loved Abby and wanted to hold her. She was cute and super easy to be around. She even said she’d come home with me and live with me forever. I would have taken her up on that in a heartbeat.

 Todd led the meetings. He spoke of his desire to gain independence from his parents. To live on his own. He was polite, funny, and SO CHARMING. He cared about the issues, and he cared about the people that he was with. He loved Abby. He wanted to just hold her and carry her and probably would have the entire time.

I had the best conversations with Todd. I asked him about all of the monuments  he went to and which was his favorite. He said, “My favorite was the Samuel Adams Monument.” I told him that I wasn’t sure I had ever been to that one and asked him why he liked that one over the grandeur of others, like the Lincoln or the Jefferson. He came back with, “Because Sam Adams is my favorite beer. I’m a beer drinker!” I just about fell over. Of course he is! He’s 33! Most 33 year olds I know who aren’t of my faith drink beer. Why wouldn’t Todd?

I spoke with his mom a while as I was laughing at his ability to charm the people around him. As we wandered through the halls of the Senate office buildings, Todd would greet the people as they walked by in the halls with a “gentlemen” and a very smoooooth, “laaaaaydeees”…to the pretty girls that walked by. I told his mom how charming I thought he was and she came back with, “Oh yes, and completely full of himself…” with a bright smile on her face.

He’s the same as any other 33 year old. Katie is the same as any other 10 year old. I guess in my mind I thought that people with Down syndrome stayed young in their behavior forever. I was so glad to be wrong. Things will change for Abby. She’ll grow up, she’ll love babies, she’ll have boyfriends, she’ll want to drink beer. We’ll deal with that when we get there. It’s going to be different, but the good parts will be better. They have been so far.

Today I get to go hang out with Todd and the other self-advocates and people attending the part of the NDSC conference that is just for people with Down syndrome. In fact, I get to spend the next three days with this fantastic group of people. A group that I could not be more thrilled that Abby will be a part of when she grows up. 

24 thoughts on “Some things I have not said.

  1. Ya know what made me happy? This: He came back with, "Because Sam Adams is my favorite beer. I'm a beer drinker!" I just about fell over. Of course he is! He's 33! Most 33 year olds I know who aren't of my faith drink beer. Why wouldn't Todd? That's a response that any of my male friends would give. Bring it, Todd, bring it.

  2. I love this post and I love that you had such a positive experience. The unknown is scary. Sometimes it helps to get to know it better.

  3. Oh Lex. I know what you mean. I felt that way about the Autism community. My cousin has lived on her own since her early twenties. She has a job, her own apartment in a group home, and lots of friends and a boyfriend. Living in the right now is okay. Sometimes we have to do it to cope. See you did this when you were ready. (((HUGS))) Have a great time!

  4. Yeah, what Stimey said. I loved the pictures! And I'm really glad you were totally able to turn that experience around into something positive and uplifting. The Dr Seuss quote really made me laugh. You're right, you just can't argue with the dead.

  5. Love this! One of the most charming men I ever met had DS. He kept telling me how pretty I was and that I reminded him of Cleopatra. I would laugh and tell him I had a boyfriend. He would wink and say we won't tell him. And we both would laugh! Honestly he lit up a room. 😉 His name was Steve and he lived in an apartment with others with special needs. He had friends everywhere. I think of him often when I need a smile.

  6. How could it ever be possible to look at those pictures and not feel how special those kids are? I love that picture of Todd with her. She can come stay with us when she's forty and you need a break:).

  7. This is a really great post, Lexi. Thanks for being so honest about something a lot of us worry about and deny. But hearing about the reality of your plunge is wonderful. I've only had short conversations with adults with Ds, here in our community. But I look forward to more.

  8. YES! I have a 17 year old daughter with Asperger's and reality is here – the adult world isn't as soft or tolerant of someone who is different, who points out when you aren't following the rules, who makes inappropriate remarks at inappropriate times. My family and friends see my daughter for who she is, smart, funny and perceptive, and that's how I want the WHOLE world to see her. It's like a 4th dimension. We just filled out her college application. I want to go back to when she was 4! Great post! Thank you for sharing! And I love that Todd drinks beer…made me chuckle! didmybrainfallout.blogspot.comSuzanne

  9. We hear so often, "more alike than different" and it's so true! I really think that this generation represents a huge change in the special needs community, especially regarding people with DS. We are seeing how much people with Down syndrome are capable of. This is the first generation that is receiving therapy and inclusion and opportunities, from birth. It really makes me wonder what things will be like in 20 or 30 years. As today's infants reach adulthood we might find that the gap between the abilities of the "average" and those with DS is unnoticeable.

  10. You have addressed something we all fear—the long range future. Not the "now" but the "then." And it's a hard one to come to terms with…but we do, we will. You are doing great, you know that? You are.

  11. Every time I read your posts I think, "This is her best post yet!" You've done it again, this is definitely your best post yet!!

  12. LOVE this. You faced your fear straight on, and you came out on top. Next year, maybe I'll consider volunteering for that group – I bet it was a BLAST!!

  13. I’m so glad I stumbled upon this post today. As the mom of an amazing two year old little guy – Tommy – with DS, I have the exact same fears. Just the other day I said to my husband, “I’m so glad that Tommy is getting bigger and finally walking and doing more… but at the same time, I hate it b/c I know it means he’s getting older and I’m scared of what that life looks like.” Thank you for being so honest so I know its OK to feel the same way. Thank you for encouraging me to emerse myself in what I’m afraid of.
    Someone just send me the link to your blog and I love every post. Thank you for sharing your stories.

    1. Thank you for saying that. It’s still hard for me to think about the future. But the more I’m around what could be her future, the more comfortable I am with it. With everything else with Down syndrome, it’s different, but still so good.

  14. My little is 5 and I VERY much avoid the thought of her being an adult, I really needed this post! Thank you ❤ I TOO am involved in the DS association here, and I find myself avoiding conversations with the adults and older children, like you did. . . Now I'm excited to jump in and ask them some questions, thank you so much 🙂

  15. Your daughter is beautiful. I too, have a daughter with Down Syndrome. She is 10. She is already going through puberty. She is in love with her daddy (my husband) calls him “her husband” and does not like it when he kisses me (especially on the lips) although she does apologize later. She is full of herself and is the celebrity at her school. Outgoing, full of life, singing all the time (solo, of course, so don’t try to sing along). I like the essence of what you said in the 5 things no one should say, but can’t “share” it because of how “bluntly” you speak and some of your words. But I get it. I hope it gets better for you and that you can get some sleep. Our daughter would consistently wake us up in the night, until we explained to her that night is for sleeping and that we wouldn’t be coming to open her door anymore, that she should not turn on her light and play, but just go back to sleep. She eventually learned this and now it’s all good. As for her immune system, we have always used Shaklee Nutriferon to build the immune system. I started taking double doses when I was nursing her, then crushing it up in applesauce along with the Mental Acuity and other Shaklee vitamins, until she actually started taking it whole, herself, about a year ago. She was my healthiest infant (of 4 children), often going to the Dr. only for her yearly checkup. She almost NEVER gets sick. You can order from anyone who sells Shaklee or call their 1-800 number. My site is and if I can help in any other way or answer any of your concerns or questions about Down Syndrome or anything, feel free to email me or befriend me on FB Karen Tackett Listi to see ALL of my gifts from God (but especially, Rebekah).

  16. Thank you so much for your honesty here. I felt like this was something I had written myself as I also just attended the advocate day in DC. I often have those same fears and had them going to DC. Funny how it alleviated so many of them for me. DS . at 2 looks so much different than DS at 22.

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