When You Can’t Fall Back on Down Syndrome

I think it is pretty clear that I have a somewhat zen approach to Rowenna and her disability. And I really do feel it – Ro will get where she’s going in her own time. She’s shown me that on so many occasions and I know my job as her mom is to support her and love her and let her blossom.

But I didn’t realize how much I had banking on Down syndrome itself to reach that zen point.

See, Afton isn’t talking. She chatters. Oh, does she chatter. Orates. Opines. Scolds. But she doesn’t say any actual words beyond “dada” which is sort of her universal label for “person I like.” And she doesn’t mimic. And she isn’t showing a huge interest in signing, though she does sign “dog,” and the occasional “more” and “cat.”

After a typical pregnancy and delivery and negative prenatal testing, we settled in for the “typical” parenting experience. Afton had something else in mind and we spent her entire first year trying to figure out what she simply screamed all day and all night. She didn’t sleep. She wouldn’t settle. She barely tolerated our attempts at comfort.

And little red flags started tentatively waving back and forth in my brain.

She throws epic tantrums that are starting to look more like meltdowns. She refuses to be in the car for more than a few minutes. We are hearing things like “oh wow, we have never met a toddler like that before” coupled with hesitant chuckles.

And the little red flags started to wave a little more.

She has always been a babbler and her intent has always been clear. We have always thought words must be just around the corner with the way she fixes her gaze on you and lets out a stream of chatter that is surely meant to explain exactly what she is thinking. But there are no words.

She doesn’t even say “mama.”

I have to be honest: that hurts. It hurts badly. As zen as I can be about “they will talk when they talk,” my heart longs to hear my girls call me mama, to hear a sweet voice call from another room.

So I finally picked up the phone and called Birth to 3, wanting help but nervous to start this process all over again. We have felt so exceptionally trapped by Rowenna’s recent intensive therapy schedule that the idea of volunteering to tie up my schedule yet again is daunting. And the idea of yet another child not following a typical developmental trajectory is a bit…I don’t even know. Unexpected. And worrisome.

Because Down syndrome at least gives us a trajectory. While she is unique in her development, we have an idea of where Rowenna is headed. We have averages and examples and a broad spectrum to look to, parents to speak with. We have the peace of knowing that no matter what, we can find people on a similar journey. There is comfort and safety in all that certainty.

With Afton? We don’t know. I can’t shrug it off as merely “oh, it’s just that extra chromosome – she will get there.” I don’t have a diagnosis and a network of moms and a stack of books to read. There is no certainty in this unknown. She may eventually receive a formal diagnosis of some kind, or she might start talking up a storm and we will move on, but for now we are going forward on just the speech front to see what happens.

Afton has had her battery of assessments and she meets the criteria for services in our county. She will receive weekly speech therapy for both receptive and expressive language with a re-assessment of her need in April.

I feel like I failed both my girls. In general, most people with Down syndrome speak. In general, most girls with typical chromosomes speak. And here I have two sweet girls who don’t say a word and I don’t know what to do to help them. We read and I talk and we go shopping and out for dinner and watch Signing Times and visit family. We do the things speech therapy has recommended over all these years. And yet they don’t speak.

So it’s time, yet again, for me to inventory what I believe about disability and developmental delay. Why is it so easy to accept when accompanied by a definitive diagnosis, but hitting me so hard without one? What deeply held hopes and beliefs did I hold about Afton throughout my pregnancy and over the last year and a half that are now being challenged by her changing needs?

I’m sure I will get to my zen place with Afton’s needs, too. Just going to take some time and some soul searching.

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3 Responses to When You Can’t Fall Back on Down Syndrome

  1. Beth October 22, 2015 at 9:51 pm #

    Wish I could provide words of comfort, or just be near enough to give you hugs. Please know that your family is in my prayers, and I’m trying to send you virtual hugs and positive vibes. xxoo

  2. Celebrating Phoenix October 23, 2015 at 9:48 am #

    If there is anyone out there who has not failed, it is you my dear. You didn’t cause this. But you are responding and doing the best job you can. Your girls are very fortunate to have you as a mother.

  3. Rhonda March 4, 2016 at 7:58 am #

    You and your beautiful family have been in my thoughts and heart! I’ve missed Rowenna’s beautiful smile and hearing that Afton is struggling to communicate is really heart-wrenching. I am with a very family friendly provider now, so if you have questions or are looking for support…send me an email and I can provide you with some guidance.

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