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So…what’s it like having a child with Down syndrome?

 I got asked this the other day. All I could say is, “it’s different.” I thought I’d expound a little:

It’s different. It’s not bad. It’s hard, but it’s worth it. So worth it.

But it’s different. I do everything just a little differently than I did with my boys.

I wake to the sound of Abby laying in her crib. She’s sucking on her toes and jabbering. She smiles when I get near her crib and sits up and puts her arms up for me to pick her up. At 18 months, two of my boys were already climbing out of their own cribs. I’d wake to them yelling for me. If they hadn’t yet made it out of their cribs, none of them were happy to find themselves alone in their crib in the morning. Peyton would look up at me with this face that said, “The hell, woman?” I’d pick them up and put them down, where they’d quickly run away from me.

I pick Abby up and she puts her arms around my neck, her head on my shoulder and squeezes as hard as her hypotonic muscles will let her. One of her hands plays with my hair. She pulls back from her hug, looks at me, smiles and pats my face. I put her down to fix her a bottle. All of my other kids were rid of their bottles by the day they turned 1. We can’t get rid of Abby’s just yet. We have to see a specialist before taking such a step. I fill her bottle with 6 ounces of milk and about 3 ounces of thickener. Her bottles are about the consistency of pudding so that she doesn’t aspirate the fluid into her lungs.

I fill her breathing machine (nebulizer) with equal parts albuterol and steroids. I sit with her until the little machine stops puffing little clouds of vapor into her face. She hasn’t finished her bottle yet- that takes about 20 minutes or more. By 18 months, my boys started the day out eating what we did at the table. Abby can do some of that, but the only way to get her to sit for the 15-minute breathing treatment is to feed her at the same time.  Abby will get three more albuterol-only treatments throughout the day and then another treatment with both medicines before bed.   I pat her back with the heel of my hand for a while hoping it’ll loosen whatever is making that gurgling sound in her lungs. She’s chronically congested and each cold threatens another hospital stay.

I change her tiny diaper (she’s wearing the same size Carter did when he was 4 months old) and get her a new outfit. Under her jeans I put on her “hip huggers” which are designed to keep her floppy legs together so the muscles work the right way. She HATES them. I put on her tiny orthotic inserts under her shoes. I dress the other boys (getting Casey ready for school and how different things are for him is another post for another day) and we walk to school. When we arrive, we walk Casey all the way to his class. As we do, Abby is greeted by students and staff alike. Abby’s a rockstar at the school. The special education teacher who teaches the preschool stops to pick Abby up. Abby hugs her as she did me this morning. She also plays a little with her hair.  Some of the children who are in that preschool class stop to say
‘hi’ to Abby and give her a hug. It seems as though children with Down syndrome share a special bond I don’t think those of us who aren’t chromosomally enhanced can understand. We walk home just the two of us from school and Abby smiles and waves at the birds as they fly by.

When we get home I put her down to do some cleaning to make the house look like I actually give a damn when her therapists arrive. We have a snack just as our Occupational Therapist arrives. She works Abby to the point where she can’t take any more and lays down, face planted in the carpet. She’s done.  I thank the therapist, sign the form and get Abby to bed. She sleeps for a couple of hours. In the meantime, I contact her case manager about upping her Physical Therapy, contact the other case manager about respite care (AGAIN) and fill out forms for two of the specialists Abby needs to see in the coming month (I also may or may not spend a stupid amount of time on Facebook, Pinterest and this blog.).

She wakes up from her nap much the same way she did in the morning- smiling and ready to be held. I take her in my room and we cuddle for a couple of minutes. By this age, none of my boys would cuddle with me. I LOVE these sweet moments with Abby. I sing to her (and I have a horrific voice) and Abby giggles and claps.  We’re forced to get up and get some food into Abby before therapist #2 arrives. Our developmental therapist. I think. I wasn’t quite sure. She wasn’t our speech therapist. Or our physical therapist. Or our educator. I swear at this point, someone could knock on my door with a big notebook, say they’re a therapist and I’d let them in.

Mystery therapist #2 stays for an hour and plays a lot of the same games with Abby as therapist #1. Abby is bored. She takes the ball the therapist was using as a reward in one hand and scoots across the room with her other until she’s made it under the table. She’s unwilling to come out and play. I don’t blame her. I’m bored, too. Therapy is fine. It’s good. It’s necessary. It’s terribly boring. #2 hands me another form to sign, and leaves, taking her brightly colored balls with her. Abby gives her a look of “good riddance” and tears off into the bathroom to destroy stuff. I let her.

In both therapy appointments I’m forced to say over and over again all of the things that Abby can’t do. I hate that. I understand why we have to go over it, but it makes denying reality tough. Abby is behind. Even further behind than the other kids her age with Down syndrome. I had mistakenly thought when Abby was born that there wouldn’t be the sort of comparing her to other kids her age that went on with my “typically developing” kids. Parents compare. A few take it too far (just kidding, A LOT take it too far. It’s one thing to be proud of your child’s accomplishments, it’s another thing completely to do so in a way that makes other parents feel small). Doctors compare. Therapists compare. That form of mommy guilty is not absent in kids with special needs. Instead, it’s multiplied. It’s been surprising to see how parents of children with Down syndrome compare their kids to their peers with Down syndrome. Again, some to a fault. (That’s fantastic that your Ds can crawl 8 months before Abby did! But even though they have the same chromosomal abnormality, it doesn’t mean that they are the same kid!). The therapist mentions another “little guy” she has that is doing x y and z that Abby is not doing. I know it’s in an effort to show me that Abby can do things she’s not doing yet, but it still stings a little.

After therapy is over I lay next to Abby as she plays on the bathroom floor. This is a poor choice in that I have 3 boys with terrible aim. I change my clothes and Abby’s out of precaution (and because dressing her up is one of my favorite things…).

I’m exhausted from the late night scream fest Abby had the night before. She was gassy because she doesn’t have an “off” switch that tells her when she’s full. I think both Lance and I took turns feeding her an entire dinner the night before. We should coordinate that better. We can’t let her cry it out (a method we employed with her brothers) because it could throw her into an asthma-like attack. But we try. Mostly out of laziness. I laid next to her door and listened to her breathe as she cried. I was hoping she’d get the hint and go to sleep before her breathing got out of hand, but she didn’t. I reinforced her use of screaming by picking her up and taking her for a breathing treatment, saline nasal wash and a lot of sucking by the bulb syringe.  Her screaming had woken up Casey, who decided that at 4 am, he was up for the day. There really is no rest for the weary.

I put a Baby Einstein on for Abby and tried to close my eyes for a couple of minutes before we had to leave to get the boys. Abby, just like my boys at this age, wants to play instead of letting me rest. I lay on the floor next to her and let her pull my hair until I realize that any effort to relax is wasted. We play, she giggles, and I’m glad that sleep didn’t come. Again, as it has several times today, the feeling comes over me of how extremely blessed I am to have Abby. She loves without hesitation (unless you have a beard…again, another post for another day).

What’s different about her can be tough, but certainly not anything that’s harder than it is rewarding. I’m grateful for Abby. I’m grateful for this chance I get to have my baby be a baby for a while longer. I’m grateful for the love she’s shown me. She’s only 18 months and I learn from her every day. I’m learning that the things that I get so hung up on aren’t that big of deal. My whole perspective on life, on beauty, and even on what it means to be truly exhausted, has changed. It’s not bad.

It’s just different.

12 thoughts on “So…what’s it like having a child with Down syndrome?

  1. I love this! Okay – not all of the not sleeping, but how you describe sweet Abby. I love it!Note to self….show up with a large binder and make Lexi sign a paper that gives me rights to…everything. Muahahaha!

  2. Hi! You don't know me ,but I'm Sara B's Mom. I was on campus the other day and ran into Travis (conversationally–not with my car), so of course we talked about you and this blog! I just want to let you know that reading this saves my life some days–not in that trite "I'm so thankful for my blessings–life could be so much worse" way, but because I get a glimpse of love, Abby's sweetness, bravery, the goodness of your boys, the devotion of your husband, all of it. I can see the hand of God in your life and it gives me hope for my life. You make me laugh and cry and remind me that I'm human, and being so has it's perks! Here's to recognizing tender mercies and to being alive. Thank-you

  3. We don't have 'those' kind of days any more. We're at the Eva doens't understand cause and effect part and it's distructive. If she wants to do something she just does. At Thanksgiving dinner she sprayed water on Gma's antique dresser. Gmpa discovered in and came unglued. He doesn't understand Eva. She didn't understand why she was getting yelled at , by Gmpa no less. You;re totally right. It's just different. And I too, hate those frequent reminders of just how different it/she, really is.

  4. Hi. You don't know me either…but I LOVE your blog and enjoy reading about you and Abby and your boys. I work in the school district as a Speech/Language Pathologist. I thought this post was great to see it from the parent's perspective. Thanks for being so honest…and funny. You make me laugh and think about deeper stuff everytime I read. Katie Bailey-Utah

  5. Hi! I love this post 🙂 I love your header photo as well :)My Cal is not to the lung point your Abby is, but I agree – the different is good. Challenging and exhausting, but good and rewarding. He is about 16 months and does not sleep all night because I hate doing the 'cry it out' method 😦 Mommy guilt and therapy? Check. This is all easy to relate to.

  6. My son is only 7 weeks so I don't see the DS yet. Right now he is just a normal sweet baby boy. I do wonder how our future will be though…I hear ya on the bragging of other parents. Some bragging is necessary but some are just neurotic about it. I also hear ya on the feelings of Mommy guilt when talking about milestones. After Riley's physical therapist left I not only felt bad about this delay but they also pointed out delays in my 18 month old without DS…so it must be in their job description. I wonder if that is why Riley eats so much?? Is it typical of them to not know when to stop eating? He sometimes will drink 8 ounces which is CRAZY. I have to say he is the best baby I've ever had though.

  7. My son, now 6 with DS, has lagged behind as well. But now that he is 6, I see him with other kids with his age with DS, and realize the things he was lagging behind on are catching up. He played yesterday with another 6yo with DS who babbled a lot as a baby and his parents were told that was such a good sign, for sure he’d be a good talker. My son was silent until age 4 and has been slowly, very slowly, much slower than other kids with DS gaining speech. But at this point, my son is talking more than the other boy.

    I hate it when they say each child with DS is so different, you just don’t know how they are going to do later on, but I’m seeing how true it is. My kiddo has none of the behavior issues I’m seeing with other kids with DS – I have to wonder if it’s a side effect of being slower? Or maybe a side effect of being brighter? It’s just so hard to know.

    Deep breaths, one day at a time. I know this is an old post, but for me, this issue perseveres through my little guy’s life.

    Blessings,
    Alyson

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