What It's Like to Have A 12-Year-Old Daughter With Down syndrome

As February 6th approaches every year, Timehop rubs all kinds of pictures in my face. Addison, the adorable toddler with her “bass mouth” laugh/smile that lights up the world. Addison has a new kindergartener with a cute haircut and new shoes. Addison, fashionista 8-year-old, navigating school and sibling life like a boss. And the one that kills me every time I see it….Addison, baby in the NICU, hooked up to all kinds of machines, unconscious, while I bend over her in my white robe and gently kiss her hand.

12-years of life with Addison represents a lot of emotion. A lot of color. A lot of happy living.

I wrote a lot about what it was like to have a baby with a new diagnosis….a toddler with Down syndrome…what it was like to send her to kindergarten….how first grade went. But I’ve gotten noticeably quieter as she’s gotten older. I’m forcing myself to write out some thoughts today because I think that today’s thoughts deserve to be published alongside with my toddler thoughts. We have all grown up alongside Addison, and that deserves a space on the blog.

I think the biggest concept that sticks in my mind as I blithely wrote about her diagnosis as a baby and toddler was “This won’t hold her back! She will still do GREAT THINGS! She will ROCK HER EXTRA CHROMOSOME. Addison will show the WORLD that a diagnosis doesn’t matter! She is more alike than different! Extra chromosome, what? She will still achieve great things! Don’t put limits on HER! She will SHOW YOU how AMAZING SHE IS.”

12 years in….I agree. She is amazing. But I’ve also realized that she doesn’t have to show you, or the world, one darn blessed thing. She doesn’t owe society or social media any sort of statement about disability through her life. She doesn’t have to achieve anything she doesn’t want to achieve. And— I don’t care if she does great things or not.

She “rocks her chromosome” just by being.

I think that as a baby and toddler, still desperately clinging to broken expectations and not sure what her future would hold, I tended to put a lot of these new expectations on her. Expectations that she would still ACHIEVE. In her own way, sure. But somehow PROVE that she still MATTERED.

Looking back, I literally roll my eyes at this. Addison matters because she is Addison. She doesn’t need to prove this in any way. She doesn’t need to break records or stereotypes or SHOW UP IN A BIG WAY to life. She exists….therefore….she matters.

And “She’s more alike than different”. Hmmm. I think the sentiment there was, “She is a human person just like you and me.” Which is true. But what is also true is….she’s not more alike than different. She is firmly in the “different” category. But that is okay. I wish the saying was “She’s different. But that’s okay. Different is okay.”

Don’t get me wrong….she is extremely capable. It’s easy to underestimate her (but don’t make that mistake!). She has this fighting spirit in her that can literally accomplish all the things. I just feel like it’s important for the narrative to change to “what she wants to accomplish” instead of “she will PROVE what she can accomplish to THE WORLD.”

No. Not being in every headline because of how inspirational her life is does not make her matter any less.

She is Addison. That’s what makes her matter.

She is different, and that is okay.

It’s impossible to sum up where she’s at in life right now….but let’s give this a try….

She is dramatically behind her peers in 6th grade. First year of middle school, and class material goes straight over her head. Her team and district have both have leaned heavy on full inclusion, which I have super appreciated all through elementary school. But at her last IEP, I asked them to reconsider this. She gets more now out of her pull out time with her one-on-ones that she does sitting in a 6th grade algebra class. It’s time for a change.

For her entire school career, we have prioritized social life over academic life. She was never held back a grade to redo any material as we all felt it important that she stay with her peers. Was this the right choice? Oh man, books could be written on this. I don’t know. But Addison has an incredible friend network and her social game is very very strong. I choose to think that we made the right choice for Addison. It’s exactly the education she was meant to have. As we go through middle school and high school. some tweaking is in order. She is a good reader….but at a 1st grade level. I want to see this develop more, and I don’t know how that will happen if she spends an hour every day in advanced history classes instead of focusing on her reading level specifically so we can get to the next one.

The other thing we have prioritized is her own independence in everyday tasks. As the oldest of 5 kiddos, and most of her life being overtaken by adding new baby after new baby…she has had to fend for herself a lot. She is an expert in dressing herself. She picks out all outfits and makes it a fashion situation. In fact, if I try to pick out her clothes, she will refuse to wear them. Must be HER outfit choice. Now….we need to work on picking up the clothes off the floor of her room! But….don’t we all? lol She is very good and taking care of herself through daily needs. She’s even getting better at wiping her face after she’s had too much chocolate— she will remind me to get her a wipe because in her mind, that’s the next step. She’s on it.

There are times that I get incredibly frustrated with her. She’s a different person than I am. Different likes, schedules preferences, weaknesses and strengths….so ya know. It’s a parent/child relationship. But with this added intensity of that might be in this phase for a long, long time. Possibly life? There’s an acute awareness that she and I will never advance to the usual parent/adult child relationship. It’s different than my relationship with my other kids.

But, 12 years in, I’ve realized not only that this is okay, but I’m on a level kind of excited about this.

Knowing Addison is to love her. She just has this zest and confidence for life that is so refreshing.

Her latest thing is to repeat over and over again, “I beautiful.” And I say, “Yes, yes you are. Very beautiful.” And then she beams.

The other day at dinnertime, I posted about how my boys had a bit of a cooking disaster. It was incredibly chaotic as I was trying to sort through the mess, calm them down, and fix a new dinner at the same time. I remember saying, “Can someone please get me some frozen vegetables from the freezer downstairs!” once and then forgetting about it. A few minutes later, I saw Addison shut the basement door— bag of her favorite frozen veggies in hand, and she walked over and wordlessly handed them to me.

She is no dummy. She gets things and shows up to life in her own way. To underestimate Addison is a fool’s errand.

A few weeks back, Morgan (5) asked me (in front of Addison) why Addison was so weird. “What?” I asked. This came completely out of the blue. Turns out, Morgan was asking why, when given free time, Morgan liked to play with all her toys and Barbies, but Addison just liked to sit still and talk to herself while hitting her book with her Lincoln Log.

I realized that I had never had a sit down conversation with Morgan about Down syndrome. So we took this opportunity to discuss how everyone is different. Some people like to play with toys and some people like to just sit and talk to themselves and it’s okay. It’s not right and wrong or weird. It’s just different. Different is okay.

And then we talked about Down syndrome— Addison has an extra chromosome and how this makes her extra special. And how much we love her.

It was a good talk. Addison was sitting right there, looking like she didn’t understand what was going on. Just quietly sitting and taking it in.

A few days later, Addison had me alone and she asked super quietly, “Mom, am I weird?”

Broke my heart.

“No! Not at all!” I assured her as I gave her a hug. Addison isn’t one for mom affection, but she let me hug her and kiss her forehead. “You are the farthest thing from weird. You are amazing and beautiful and uniquely you. I love you so much.”

She beamed

“I beautiful.”

“Yes, yes you are so incredibly beautiful.”

She let me kiss her forehead again. “I special.”

“Yes, yes you are.”

She was happy and content with this conversation. But the fact that she picked up on Morgan’s quickly asked question and hung onto this for a few days before asking me about it…..nothing misses Addison’s attention.

Addison does very well with a specific order to her days. As long as she can stay exactly on her schedule, she knows what to do next and will do it quite well. For instance, after dinner, she takes her vitamins, goes to the bathroom, gets in the bath, washes her hair (I help her with this part), gets out, gets dressed for bed, brushes her teeth, gets herself a cup of ice water, and gets herself in bed. Every part of her day has a set order, and she is happiest within each set of ordered events.

Addison has this really fun sense of humor. She makes me laugh a lot. She also gets grumpy. She gets frustrated— with herself, with us. She gets bored. She gets mad (mostly at her brothers). She gets annoyed (mostly with me). She gets sad. She also gets happy. Excited. Thrilled. Encouraged. Curious. Thankful (her latest is— I am thankful for my family! She says this a lot). She gets nervous. She gets hangry. She gets amused. She gets relieved. She gets calm. She gets determined. Basically, she is a normal human child and runs the gauntlet of emotions. She is also entering that pre-teen angst. Which means… I am pretty much chopped spinach to her. (No worries, I can always use more chopped spinach to add to her smoothies!)

We continue to struggle with her OCD, but after getting back on her regular school schedule, it has definitely lowered itself from the crazy situation that summer of 2020 set off in her. But. This is currently our biggest battle. I’m not going to share a lot on this, as we are still working through it.

She wants to watch her favorite show all of the time. She also wants to eat chocolate all of the time. We work hard to limit both of these things. So I purposefully do things like: have her walk a mile on the treadmill while watching her show on the phone. She can watch as long as she’s walking. My goal is to keep her moving and as active as possible. She also does ballet once a week. We are working on diet balance. She drinks really well her daily kefir smoothie packed full of good stuff (this has really helped her poop situation) and loves taking her vitamins. But when I make cookies, she struggles to just eat a normal amount of cookies. This impulse control has gotten better than it used to be. (She used to wake up in the middle of the night to eat ice cream or all of the leftover cake or cookies. She no longer does this). Baby step progress. She also eats really well normal, balanced meals. She’s not terribly picky and will eat whatever dinner I set in front of her. Usually. lol

Speaking of sleep— she is such a great sleeper now! She used to get up every morning at 3-4AM, but once she hit 9-10, this started to adjust. Most mornings I have to wake her up at 6:40 to get ready for school. And I mean…she is NOT happy with me and lots of mornings will just dig deeper under the covers. lol

To protect her friend’s privacy, I’m not going to post anything specific about her bff. But. she does have a best friend. And they are super cute together. As they grow older (they’ve been friends since early elementary school), the difference in the ability between them grows wider and wider. BFF has been incredible navigating this with so much skill and grace for a 6th grader. She is incredible and I joke a lot about kidnapping/adopting her lol.

Addison still hates to wear her glasses. 11 years in to glasses, 1 surgery later, 5 different eye specialists consulted, 1 sedated exam…she will only wear her glasses when forced to. Her last exam they finally said that she uses her eyes separately and has just figured out which eye to use when, and so Addison sees no need for the glasses, working her eyes together.

She still receives PT, OT, and speech therapy at school. She has an appointment tomorrow to get measured for new orthotics because her feet finally grew a little. (-:

She is completely healthy. We follow up with her heart doctor (she had two surgeries as a baby) every two years. But the devices in her heart have been staying put beautifully even as she grows. Other than that—she has zero doctors appointments other than her yearly physical, dentist appointments, and eye exams.

She does have a one-on-one aide at school, but she does lots of time without. As well as she does full day camp in the summer without a full one-on-one. (Also…she LOVES to swim! Another goal is to get her in some year round swim lessons.)

When anticipating Addison’s life beyond “the cute toddler stage”, I was very worried that life would be incredibly difficult.

12-years in….it’s not difficult. It’s just different. And different isn’t bad. It just is. Different is okay.

When I get frustrated or sad when I look at Addison’s BFF helping with Morgan and the baby and think— my 12-year-old should be able to help like that!….Addison does something or says something that just reminds me that she….she is my person.

She isn’t what I expected. But she’s delightfully….her.

No, she isn’t in a “mother’s helper” stage of life. But she helps in her own way. Hello….frozen vegetable gatherer!!!!

I am just so incredibly proud of Addison.

She works so hard and thrives right within the place where she was meant to be. She stands in her spot in the world and shines just by being her.

Just like every other human on this planet, she develops and learns things at her own pace. She has her own strengths and weaknesses. She wants to just be accepted for being “Addison” and not because she has to do or say anything that the rest of the world can be inspired by.

It is not her job to inspire anyone. It is only her job to be….her.

She has taught me this….along with lots of other life lessons.

I tend to speed through things. She forces me to slow down. I tend to gloss over details. She gets stuck in the details. I tend to get very concerned with opinions outside of my own. She could not care LESS what anyone thinks about what she’s doing or wearing or saying or where she’s going. I love to make cookies. She loves to eat them. (-: I love to run on my treadmill. She suffers a walk on the treadmill in order to watch more show. I wear boring black leggings every day. She wears brightly colored dresses.

Our mother/daughter relationship is one of opposites. But….don’t all great relationships start there? She helps me see the world in a different way. I pray every day that I can help her be her healthiest, best self, living her best life, achieving whatever it is that she wants to achieve.

I no longer pick a point in the future and try to push her achievement-wise there. She is going to pick her own point and walk herself there when she darn well wants to. My job is just to give her the tools and support to get herself there.

So what’s it like having a 12-year-old daughter with Down syndrome?

It’s complicated.

But it’s not bad. Or difficult.

It’s an amazing life. With complicated edges. With a pure joy center. Covered in beauty and a wild outfit worn with confidence.

Every year I feel like I can see the adulthood road ahead a little more clearly. Sometimes it scares me when I think of life without the support of school. But I also know, that she will continue to surprise us, just as she has to this point. Not by doing GREAT THINGS and ACHIEVING and showing the WORLD. But by figuring out the next step in her own way…and delightfully existing right there.

It definitely motivates to make certain choices for her right now, with adulthood independence/good health as the goal.

I will continue to keep her active as possible. I’ve talked to the track team about having her join this spring just to walk laps after school every day. I finally….after 10 months of trying….drumroll please…got her an appointment at the Boston Down Syndrome Clinic to discuss her development and how can we help to set her up for success. (This is the day before her sister’s big cast removal!)

I also tackle certain issues of hers (the OCD) with the mindset of….I don’t want my other adult children and their spouses to have to deal with this someday in their homes. How can I raise her now so that they enjoy caregiving for her in the future? So this doesn’t feel like an unfair burden on anyone? What habits can we build? Which habits should we break?

Life today feels like an investment in everyone’s future. I don’t know if I’m doing it right. Or even close to right.

But every day, we get up and try again. We’re trying to figure out how to navigate this life together. Whatever is coming our way in adulthood, we will continue to choose joy and the mindset of “we will continue to have an awesome life even within limits.”

We have high expectations for Addison. Not for Addison to ACHIEVE GREAT THINGS. But for Addison to do what she knows to do. We hold her to it and do not let her slack off. Even when she is VERY GOOD at pretending like she isn’t capable. She is completely capable. Our lives are a balancing act of— pushing her as far as she needs to be pushed, but giving her grace where she needs it. (And no, we do not do this perfectly!)

As we fail, we pick ourselves up and just keep trying. Letting Addison guide us to where that balance point needs to be….one day at a time.

Meanwhile, we get to enjoy each of those days with our person by our side.

Miss Addison. Shaggy Green Roberts. (She changes her name frequently. Right now she will only respond to Shaggy.)

Perfectly created by a loving Heavenly Father.

I love her. And I’m so grateful that she chose us to be her family.

Happy 12th birthday, baby girl. Thank you for being exactly you.