Down Syndrome and Parenting: The Cold Current of Doubt

LP did his first sign many, many months ago.  “More.”   Sometime soon after that, he started using a fork independently.  The kid loves eating, so no surprise there.  Life was much, much easier being able to sit LP down with a plate of cut up food and a fork.  Very civilized, right?  He was starting to use a spoon as well.  Good.

Then it stopped.  Forks got hurled across the room.  No signing.  Just smeared food and yelling.  A lot of yelling.  For weeks.  And weeks.  I can’t lie—it sucked.  We’d sign and sometimes it seemed like he understood, and sometimes he just looked at us like we were aliens.  Mealtimes became a nightmare of throwing, cajoling and yelling.  I’d wonder, was I babying him?  Was I insisting on too much?  The way he’d moan and whine, it really seemed like he was suddenly incapable of communicating or self-feeding.

Around this time, he really started getting confident with his standing. He was cruising around furniture with a lot of ease and standing on his own for many seconds at a time.  One day, Mouse taught him to use a little tricycle as a walker.  Great!  So I figured, he’s working on the walking, just be patient.

I was patient, or so I thought.  But the days turned into weeks, and I started to wonder.  Is something wrong?  How could a skill have just disappeared like that?  Was it his thyroid (we have been trying to adjust his dosage and that is a whole ‘nother post)?  Maybe this was a sign of something else, for a skill to have just vanished?  Was there another diagnosis in his future?  Why wouldn’t he just go back to doing it???  I admit during these moments, I’d try to size LP up among his peers with T21.  Each time I was a kid who was around his age doing something that he didn’t do, I’d feel a pang of anxiety.  Was he ok?

It is hard sometimes when it feels like the world is telling you that your kid is more wrong than right, not to let some of it seep in.  In the media, most of what I see are awful stereotypes and misinformation, or hideous debates about prenatal testing and abortion.  The positive is largely sickly sweet stuff that leaves me feeling more sad than anything else.

As much as our friends and family have been supportive, it isn’t a walk in the park there, either.  I can’t shake that raw feeling when it seems like the only questions I get asked about LP are about his development.  Does he walk, talk, do this, do that?  I feel a real twinge of pain when someone goes out of their way to praise the girls only, because the next thought I have is, What about LP? 

I don’t know how fair it is for me to feel this way.  There’s nothing wrong with the girls being talented in some way that their brother isn’t.   By and large, when people discuss babies, it is about development, Down syndrome or not.  For the most part, people truly care about LP, and I imagine it is easy to get caught up in trying to figure out what the “right” or “wrong” thing to say is.

Yet, I can’t help but notice that the tenor surrounding LP is different.  There’s so little faith in him.

It isn’t about an inevitable when for him, it is a big if.  I’m guilty of it too—without constant change to reassure me, it is all too easy to let myself slip into a strange place in my mind in which he might never hold a fork again until he is five years old.  Despite that I know this thinking makes no sense, I have to fight it back; that cold doubt still tries to seep through.  People are shocked to see that he is a social, developing kid, delays and all.  I’ve had people be very honest with me about this disconnect between what they expect and what really is.  When they see him begging for grapes or giggling with his sisters, it strikes people that he is so very “normal” after all, i.e. not the vague blob of sadness that they’d imagined.  I have to admit then, that I imagined the same vague blob when we first realized LP had T21.  How wrong I was.

This week, LP started signing again.  In fact, he is now sometimes stringing two signs together.  He’s imitating words.  He even used a fork twice yesterday during lunch.  (We will therefore forgive him for throwing said fork after the second usage.)  I’m the first to admit that I heaved a sigh of relief.  And then some guilt for having doubted him at all.

What is the effect of having a world around you, even your own parent, that doubts your future on such a fundamental level?

I am reminded nearly every day that Down syndrome is supposedly a very bad thing.  No one has used the word “retard” around me in quite some time, but I’m still witness to the same jokes, simply with the word omitted, in which lack of intelligence or ability becomes the pinnacle of hilarity.  I still hear comments at the park about the dangers of having babies too late, with “old eggs”, knowing that the one very feared outcome is a child like my son.  I am still squeezed under the constant pressure to raise my kids to be achieve, be smart, above all else, it seems.  Because, unless LP grows up to be independent and have a job, he will be nothing but a drain on the rest of us, apparently (yes, sarcasm there).

All of that seeps into my unconsciousness, whether I like it or not, it seems.  It is a crappy place to be, needing to be your child’s soft place to land, yet finding yourself dragged under by a black current of doubt.  It feels like I’m constantly swimming against the tide, saying, He’s enough just as he is, I want him just as he is, over and over again, in different ways, yet feeling like my words get washed away in that cold, ableist current.  It isn’t hard to let my mind wander, lose my compass and doubt more than I believe.

One of the worst things about being marginalized in any way is that eventually, some of it starts to blend into our identities.  I don’t want that.  I don’t want LP to be mostly about what isn’t, what can’t be, what might not.

Right now, he’s doing exactly what he is supposed to be doing, and I’m trying hard not to forget that fact.

24 Comments on “Down Syndrome and Parenting: The Cold Current of Doubt”

  1. Galit says:

    Isn’t that the balance we seek with all our children? To appreciate the unique spark in each of them, without measuring them against anyone else? Oh, if only it were so easy!

    • jisun says:

      Yes, absolutely. The difference being, no one asked me after seeing my other two children whether I’d done prenatal testing, or told me I was brave for raising them, or went out of their way to discuss their potential negatives of their future. You’re right, balancing it with any child is hard, but I’ve got to be honest, it is harder for me with LP. Maybe over time that will change.

      • Galit says:

        Of course it is harder. I did not mean to take away from your experience. Although, I HAVE been told I am “brave” for having 5, and asked whether I “know what causes that”, and so on….

  2. BecQ says:

    My little guy is only 4mths, but I find myself fearing all of the same things already! When will he roll? WILL he roll? He was putting his left hand to his mouth last week, why isn’t he doing it thus week? Why isn’t he reaching for things?
    It’s so hard to tell myself to step back and just let thing happen. Getting tied up in his therapies doesn’t help either…
    Thanks for articulating what I hadn’t yet identified I was doing!

    • jisun says:

      Man, I totally remember that. For me it was smiling. I couldn’t shake the strange irrational fear that he must somehow be incapable of smiling. And yes, therapy doesn’t help! We actually cut back on therapy recently, in part because of this, I’ve been meaning to write about it too. Not that therapy is inherently bad, it is just hard if you’re constantly assessing where your kid is! Messes with your head.

  3. momshieb says:

    Oh, my dear friend, I am so sorry!
    I don’t know when we all somehow decided that every child has to develop at the same moment, in the same way, and that each must demonstrate mastery of the same skills at the same time.
    What a crock of bullshit.
    I am an old Mom, and an old teacher. I remember kids who talked ten months behind my children of the same age. Now said kids are PhD’s with big money jobs who smile at my Starbucks barista sons. Who could have predicted?
    I remember kids who’s parents were told that they would never speak. I have gone to their high school graduations.
    Every single being on earth is born with an internal set of potential skills. Those skills include all of the usual linguistic, motor, intellectual achievements, but they also include an entire set of emotional skills that are rarely acknowledged.
    We will each each become what we are destined to become.
    Your beautiful boy is growing at his own pace, and in his own time. He will grow up to be uniquely himself. Your girls will do the same.
    Sending you love and hugs and all good wishes. And a very thick skin to handle the scary words and looks and thoughts.

    • Maggie says:

      I know this was meant for the blog, but these are just the words I needed to hear too. So glad you responded and I read!

    • jisun says:

      Yes, the rarely acknowledged things… I wish we as a society could talk more about these things! I think what we value is really so narrow in the scope of what we, humankind, can actually do. :)

  4. Academic Pointillism says:

    What’s interesting to me about this is that most parents experience this with their kids to some extent, but when their child doesn’t have a DD at some point (most of them) let go and start to see their kids as adults, and ‘whole’ human beings who don’t need to be constantly observed and monitored to step in as a parent and compensate for what they’re lacking and not give them space to grow…

    One of my very best friends happens to have Down Syndrome. She has an AMAZINGLY progressive family who walk the walk and talk the talk of inclusion more so than some of the families I used to work for when I was “in the field” (even though those families still had strong values of inclusion in their lives!). But still, this woman in her 30s gets super policed on basic decisions in her life about when to go to bed, what to wear, and isn’t able to walk around her neighbourhood alone… because her family still has this underlying belief that if she makes the “wrong” choice about any of the above it’s because of her disability. When I call them out on it they can see it… but it’s super challenging for them to break those life-long habits and start to see her as an adult.

    So, so much respect for you for being so conscious of this, vigilant & able to make the invisible visible to yourself! May that way of seeing/thinking last for the rest of LP’s life, and he be surrounded by those who have the ability to do the same :).

  5. Stephanie says:

    I’ve doubted and compared for some time now. It is really hard not to do that! But one thing that I have learned is that when Owen was working on something–a particular skill, he would simply let go of things he already knew and often stop doing them for a period of time until he could master that one big thing he was working on. Once he got to where he wanted to be, everything came back in a flood. It was almost like he could only concentrate on one thing at a time. So that’s what we did and for him, it worked out well. I don’t know if that helps!

    • jisun says:

      You know, the husband and I were talking about this, and I’m starting to think that my other kids did this as well, I just never really recognized it. Maybe because the time frame was spread out, so it was days instead of weeks, I’m not sure. But Mouse especially learns like this too. Stuff appears, then “disappears” while she’s organizing it all in her brain. Not that I never had any moments of doubt with the girls, but interesting to note what a different effect it is having on me this time. Anyways. I’m glad to know I’m not the only one!

  6. Katie says:

    Yes. The back&forth of skills seems to be a pretty common pattern with kids with Down syndrome, and still it worries me. I’ve seen it with my son’s movement (army crawling one week and not the next) and his speech (copying an array of signs, but losing them just as he seems to be catching on to what they mean). With my older son, my husband and I often used the phrase “I am not your monkey” when he wouldn’t display some new skill or cute trick on demand–and I find myself using that phrase again to defuse some of the tension with others (even therapists) and within myself.

    • jisun says:

      Poor kids, I do feel like they are treated like monkeys sometimes! I can’t count the number of times a stranger has come up to my kids and “tested” them on what they know. Oy.

  7. Miriam says:

    This post made me sad- to think that you have to struggle with this all the time :( Parenting is hard enough without having to constantly second guess yourself. You’re such an inspiration to me, I love the way you write about disability and your son. Remember that the problem is with society, and it’s overwhelming to think about changing society. All you can do is effect change in yourself and your family- just keep trusting your mama instinct and doing what you know is right. Follow your heart. I know it’s easier said than done, but it’s the only thing we can do sometimes. Change begins at home, but the ripples can be huge.

  8. Lisa says:

    “I am reminded nearly every day that Down syndrome is supposedly a very bad thing. No one has used the word “retard” around me in quite some time, but I’m still witness to the same jokes, simply with the word omitted, in which lack of intelligence or ability becomes the pinnacle of hilarity. I still hear comments at the park about the dangers of having babies too late, with “old eggs”, knowing that the one very feared outcome is a child like my son. I am still squeezed under the constant pressure to raise my kids to be achieve, be smart, above all else, it seems. Because, unless LP grows up to be independent and have a job, he will be nothing but a drain on the rest of us, apparently (yes, sarcasm there).” Yes, this exactly.

    One of the things, too, that I’ve had to work through is just accepting that there ARE things that Finn will never do. (In that sense, I feel like the term “delayed” is misleading, because the truth is that some things are just never going to come.) I don’t know what those things are, exactly, but I feel like part of accepting and embracing who he is means accepting that there are things he will never do, and that that doesn’t have to be a sad thing.

    I think we all get so caught up as parents in imagining what a full, rich life for our kids should look like – it should include these accomplishments, and these abilities, etc. etc. – and we mostly do it without really being conscious of doing it, it’s almost like we’re just programmed that way. And I think a huge task as a parent is just stepping back and being aware of this penchant, and being deliberate in accepting that our kids will find their own meaning and fulfillment in their lives, and it may look very different from what we imagined it would. I’m dealing with this currently with my oldest son – who does not have Ds – who is a senior in high school and on the cusp of adulthood, and I’m having all these fears about his future – will he go to college? will he stop dying his hair and grow out of this pseudo-punk phase? will he someday have a “normal,” respectable job? Blah blah blah. But I have to consciously take a few steps back and imagine something broader for him – there are so many possibilities, so many paths he might choose, and none of them might look like what I have always imagined for him, but that doesn’t mean that he won’t make his own way in the world on his own terms.

    • jisun says:

      Yeah I think this is a struggle when it comes to being a parent, balancing the acceptance part with it all. I’ve had the same thing, working on accepting the fact that some things will never be, even if I don’t know what they are exactly.

      But like you said about us imagining lives for our kids, that’s one of the biggest parenting fallacies out there, isn’t it? That there’s some end game, or that we even have much say in it all. I can’t really grasp any of my kids as old as K, I am living vicariously through you. ;)

  9. Mardra says:

    Oh Momma – Have I been there.
    I thought Marcus and I would *Never Live Through* the throwing food from the high chair phase. No. We were going to die there. Together. All I could see some days. Then…we didn’t.
    And the next phase that I thought would go on *Forever* took hold, and I pretty much forgot the trials (or lessons) of the previous phase. And then, he moved on, next phase.
    Even now, he surprises me with learning, doing, or saying something new that I had all but given up on. That said, there are many specifics from Marcus’ learning and childhood I don’t remember – but the high chair thing still stirs in me. Glad we’re through it. You will be too. :)

    • jisun says:

      It’s funny, I think feeding stuff sticks in people’s memories, because you’re not the first one to say something similar to this! xo

  10. starrlife says:

    It all shifts when you get through the “developmental years” , I hated even with one child that constant creeping measuring. I saw by about 2 that she did everything she was supposed to do at her own pace. I never pushed her to do anything, not even potty training and she is just fine!
    I noticed when I did try to introduce skills too early she would “mimic” them but the lost interest in doing that and this can look like regression.
    I am so not goal oriented in life, this has saved me a lot of the pain I read about from other parents re:disappointed expectations. From my view NONE of us can do most of what we would wish for and all of us can’t be lots of things so why would I expect differently from my child with DS. I see ableism all around and within us -hate it. That ridiculous Puritan ethic….
    Love this post ….

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