If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears however measured or far away. ~Henry David Thoreau
Her disappointment rose in a wail that pierced the sleeping sounds of the family. I felt the momentary panic rise in me, knowing that I had gotten it all wrong. Hesitating while holding her over her pack and play, I tried again as she uttered a quick syllable sounding like “mo”. “Here is your lovey- mo-mo- is it a mo-mo you want? Or more nursing?” The cry rose a second time. I looked at the angry slash of time in front of me- 4 hours till I had to be up. 4 hours to rest if only, she would give in to sleep…
17 months and already something was this important. One last quick scan on the darkness in front of me and Lovey’s voice echoed alongside her cry, “Sugarplum wants the gauze blanket.” There in the middle of our crumpled bed sheets was the Aden & Anais that she had fisted along with her as I lifted her into our bed for a quick nurse a mere 15 minutes earlier. Only I hadn’t seen her do it in my own sleep haze, responding more on instinct and ancient teachings of what mothers do rather than the latest Ferberized suggestions of my generation. Behavior is communication.
No matter how old you are. Whether the behavior is good or bad. What looks like non-compliance for someone who isn’t articulate is often their way of connecting and telling us what they mean. Through any means necessary.
This has been the lesson surrounding our growth into a family. Zuzu was twelve months old when she had her first tantrum. I still can picture her sweet toddling self. She delicately laid herself prone on the floor in response to my denial of her request, careful not to scrape herself up adding injury to insult, looked back at us and commenced into a full-bore wail, fist and foot pounding session. It lasted mere minutes and she was still at the age where you could tip her upside down and her frown would become a grin and she would giggle and run off. As she grew and as the others came along though that trick became ineffective very quickly. Distraction in response to their requests has become less and less of a viable parenting option.
The Quail, she has had to rely on a physical means of communication for the longest of the three. From early on, even though she didn’t have the ability to take the language in her brain and translate it to spoken words, she has always been so very expressive – both in her pleasure and displeasure. It’s this passion without articulation that has been our main worry as to how she would function in a typical classroom. Her ability to say what she knows and be heard as a child with something to say and not just a as a behavior problem. Even with our thorough knowledge of her preferences and exposure to her dialect, we get it wrong. And boy do we know it when we do. That she can articulate.
Even still, we had so many things going for us heading into this kindergarten year. Over the summer, we made the decision to pursue an augmentative and alternative communication device (AAC) for her use in the classroom. She had done so well in 4k, really the only issues that stood out academically were her inability to articulate a full sentence. When we first met with Sharon; the district’s AAC specialist, she felt confident that the Quail could make good use of a device. She explained it like this: “It’s like going through life with something to say and duct tape covering your mouth. I think we share these values and understandings of the importance of communication. The Quail has things to say and we should give her the means to say it.” The first time we met with Sharon, the Quail spent the first few minutes happily playing by herself while we talked. As I leaned in closer to concentrate on what Sharon was saying, she suddenly interrupted herself and pointed at the Quail who had been tugging at my arm. “That right there is what I mean- she needs the words, “Look Momma.” She wants to show you something. Turning to her I questioned, “Look?” The Quail clapped her hands and showed me the picture she was coloring.
Something as simple as “Look” we hadn’t thought to put in her vocabulary. And that is the difference between her and the other children. She would learn to say look, just as soon as we thought to teach her it. But she had to be taught it. And we can’t always see so easily what it is that she is asking us for a word for. Beyond the basic, everyday words, we absolutely can’t predict what words she may need in the classroom when those of us that know her best aren’t there to even attempt to translate for her. Once she has the words- she uses them with her own intent and pacing. But to get her to that point it takes oral placement and practice before she can own a given word and pull it with ease from her brain to her lips.
That first meeting was in January of 2013. When we brought our plan to our IEP team, it was met with resistance. The Quail was making progress in her actual speech and had a glossary of signs to accompany it. The SLP at that time thought that really it would act more as a crutch than bridge to get her where she needed to be. We found ourselves in a triangle of opinions on which means of communication to approach most aggressively for the Quail- a PECS, an AAC, sign, speech? There were only so many hours in the day and most of the Quail’s day at that point was around people who knew her fairly well. So a decision was put off until we could more fully commit to it. Even during her 4k year, her teacher told us that while she had been so nervous about not being able to understand the Quail, she found by the end of the year that somehow she knew what the Quail was saying, however she was best able to say it. We are so thankful that it has worked out that way. And that she has managed to survive, even thrive in an environment separate from us. But as the lessons get progressively more complex it is hard to know how long it will take for frustration at not being understood will overtake patience and repeated attempts to articulate. Time will tell if a device will be the bridge to get her to where she wants to be speechwise. It will be up to her and our team to make it a viable option that is both useful and user friendly. We’ve made the decision though to go forward with it and now we wait for insurance approval.
In the meantime, she’s managed to make a place for herself in her class. She has a gaggle of besties that she plays with and talks about and asks to see. I get glimpses inside her head when she starts to share with me what she wants for her birthday this year and starts to tick off the friends she wants to celebrate with. Her teacher tells us how she has honed in on the difference in her body language when she is honestly confused. How she looks you in the eye, shrugs her shoulders and asks for help versus when she chooses to look down and away. Crossing her arms and very much acting out the part of an obstinate five year old- which to hear her teacher tell it, is really not so very different from anyone else.
A couple of years ago I joined a blogger friend- Erin, in sharing a mindful approach to our days- she called it Sunday Still Life- and it was just that- capturing a still of your life and appreciating it. Shortly after she stopped posting them I did as well. Last year after my 31 for 21 project was done I lost my ability to manage regular posts as well. Writing started to feel like it was for others, not just me sharing about and documenting our days. And while I was flattered to realize others were reading along, well…let’s just say I don’t respond well to even perceived pressure. That coupled with a lack of freetime made for one neglected blog. One thing that has kept me coming back to writing and picture taking when I fall out of the habit is having a routine or habit to rely on until it became more natural again. And I loved Sunday Still life- so I’m going to start again- here:
A moment of kindness between the Sistred caught and stilled.
- For having a lot to be grateful for these days and wanting to start documenting it again.
- Lovey joining the Down syndrome Family Alliance Board of Directors.
- Zuzu’s loving her Jumprope Team.
- A Daisy/Brownie leader being willing to step in and pick up Zuzu so she can join in.
- The way Sugarplum narrates her way around her day.
- The Quail’s teacher noticing the difference between when she is being obstinate and when she truly just needs help.
- The way the Quail says gua-nana for Iguana.
- Listening to the Quail read her weekly alphabet books to her Grandma over the phone.
- Zuzu riding up front in the car.
- Sugarplum announcing that she needs to do her homework too and then following along on Starfall as we click through the color red.
- Offers of cake, donuts, egg biscuits, pumpkin chili and candy.
- New friends to run with.
- Running for 30 minutes straight at a 12 minute mile pace.
- A compromise reached with Zuzu of leggings under shorts for the fall clothes.
- The Quail’s teacher deciding to do a fundraiser and awareness campaign around Down syndrome in the month of October in honor of the Quail and another student.
- The Quail being invited to birthday parties by classmates.
- Zuzu’s continued exuberance over being 8.
- 110 crunches in a day.
- Three little girls sleeping in beds and all the cribs taken down.
- Eeking semi-regular writing time into my day and how glad I am after I’ve done it.