Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar.
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.
Each fall, we pick apples. It doesn’t always go well. To be honest, it goes more wrong than right. It’s usually too hot, too cold, too windy and we’re too tired, too hungry, too sick and our buckets tip over, our wagons careen down mountainsides, someone else grabs our bag of apples we picked, the apple-cider donut line too long, no one wants to walk, carry the bucket, pick the apples, step over the rotten mush on the ground, take a picture, stand in line. Yet. Still we go. And still I take pictures. And mostly, mostly we come home with apples and bake them in pies and cobblers and crisps and sauces. And think about going earlier in the season next year. Or maybe two times. Or maybe not at all.
Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar.
“Quail. We need to talk about drop-off, ok?”
She ducks her head and scuffs her purple shoe back and forth. I’m sitting on the floor in front of her doing my best imitation of placid…
The Quail looks guilty and irritated. Clearly not happy about what I want to talk about. I started dropping her off at school approximately two years ago. I admit- taking a three year old to school, it took something out of me. The staff at the school were beyond kind and accommodating. Each day on the drive there we would sing and talk and practice our A,B,Cs and 1,2,3s. We used that time to connect and practice her approximations and articulations in an environment free from sisters proclamations and involvement. She loved those rides and so did I. When we would pull up to the school we were allowed to park in the lot, avoiding the drop-off line while her teacher came out to meet us. Sometimes walking with her, sometimes carrying her- always greeting her with a hello, how are you and talk of the day to come. For the most part the Quail enjoyed the drop-off. She would have momentary lapses of shyness, but she generally played along nicely. The next year drop-offs weren’t my job. She was spending 5 half-days at school, but they started mid-morning so the public school bus would arrive at her daycare each day at the same time and Ray the driver would greet her and off they would go. I was told the driver and assistant loved their jobs and would sing and count and talk with the children. The Quail loved Ray so much that her teachers told me how one day the district switched the bus without any notice and as the Quail stepped out of the daycare doors and saw a bus that was clearly not hers she stepped back saying, “No bus. Curley’s bus. No Quail bus.” She only agreed to get on at the point that Ray stuck his head out calling her name, at which point she cheered and ran over to him. At the end of the year, I met a mother of another kiddo in her class and she talked about how each day when she met the bus with her own son she would see the Quail peering out the window at her and would wave. The Quail looked at her stoically until one day in the late spring, she waved back. The mother smiled back. This small act made her come up to us at the 4k graduation to tell us about it and how much she looked forward to seeing the Quail each day. That she just looked so capable and independent.
Earlier this fall, a mutual friend asked me to give this same woman a call. She had given birth to a baby girl over the summer. Her fifth- and the sweet little girl was diagnosed quite unexpectedly with Down syndrome. When we spoke she told me that within an hour of her infant being born she looked at her and wondered if she might have Down syndrome and her next thought was of the cautious little girl on the school bus who one day decided to open up to her and wave back. She said she hoped that life would be as good for her daughter as it seems to be for the Quail. This filled my heart and eyes. That the Quail had provided hope for another little one and her mother just by being herself out on her own in her community.
This year the Quail is in school for a full day. Which means she now gets to go to and from school with her sister. Both she and Zuzu have been planning how this would go throughout the summer months. They traded lunch boxes, parceled out who got which dresses from the bi-annual consignment sale, traded seats in the car and talked and practiced endlesslyu about when and how these drop-offs would work. Lovey did the first week of drop-offs and for him there were no issues. They drove up, Zuzu got out, then the Quail did and everyone went off to their days. Then I started the drop off. I pulled up. Zuzu reached over to help undo the five-point harness that we still strap the Quail into and the Quail protested. She wanted my help. Easy enough. I put the car in park and leaned back and undid it. Zuzu got out, the Quail grabbed her backpack and then balked. It was a long step down. So Zuzu stepped in again, took her backpack from her and offered her hand. The Quail squawked at her, but climbed out. I slowly pulled away eyeing them through my rearview mirrors. Ignoring the cars in line behind me that surely wished I would just pull out already. The girls weren’t moving. Zuzu looked irritated as she tried to coax the Quail to come with her. I finally pulled into a parking spot and got out to watch. As it continued I got more anxious and just as I started to walk up to them, the Quail acquiesced and in the building they went. The next day we all repeated this scene. And the next day more of the same. Then I happened to ask about what happened when they went in the school. Zuzu happily informed me that the Quail refused to get up to go when the kindergarteners were called and loved it when she took her to her classroom. As I mentioned earlier– I had laid down the law about this. The Quail needs to learn to get there on her own and follow the expected routine. That didn’t go over well then, and it continues to not go over well now.
We were out the other weekend when a friend came up to me chuckling about how he was initially worried when he pulled up to drop off his kids and saw the Quail standing on the sidewalk but our car gone. He explained that there were about 10 children milling around her trying to convince her to go inside. Sigh. I felt simultaneously annoyed and grateful. Annoyed that this routine is not the routine I think it should be- the routine that safely delivers her from our car into the school building filled with in-charge adults and grateful that she has become so ingrained in her community that others don’t just walk on by. That they stop to talk and lend a convincing hand. And considering we pick her up everyday at the end of the day- all has been well in the end. It still worries me though. She’s never been a runner. Neither at home or out and about. But still. I want her to just get out of the car and go inside. I already gave in to the fact that her sister likes to walk her to class, the teachers think that is fine and the Quail thinks that is fine. After watching her for a few days I realized what was going on. She was looking for her friends. One day Miley got out and they ran off into school together. Another day it was last year’s classmate Hunter. I heard him call her name and as he walked up they joined hands and went in together. Another day as I was squawking at her to get out of the car already- dear Mrs. P- Zuzu’s former teacher popped her head in asking if we needed help. The Quail turned on the charm and reached right out to her. Another day it was her own teacher from last year. People are wonderful- they really are taking care of her. Still though- I find this drop off rough….the roughest part of this entire adjustment from a preschooler to an elementary schooler. The feelings I had watching Zuzu walk off into the school by herself that first year are just amplified by all the what-ifs that I’ve trained my mind to watch for and problemsolve before they actually reach that level. It’s rough to settle my own feathers and watch her spread her wings. And it’s rough to know when to helicopter in for a landing and when to hover further back.
In the meantime while we continue to work this out- I’m grateful for all the feather smoothing our community has been providing for us.
…”So I need you to just go inside when you get out of the car. Ok Quail? If your friends are there you can walk in with them, but if they are not, you are to go in with your sister and not wait for someone else to walk off.- Got it?”
“So what do you do when I pull up to the school?”
“And if you don’t, what will happen?”
“Momma angy. No cake. No TV.”
“Right. But you know to go inside right? No more waiting outside- Go. In.”
“Yeah!!! Go in!” She does a little dance and leans in plumping my cheeks with her hands as she rubs our noses together and I finally grin. She lets go, grabs her backpack and as she swings it on her small shoulders hollers for her sisters.
“Bye Sug! Zuzu come on!”
I was having a moment. Apparently I was being overly affectionate with the Quail. Setting my coffee down on the kitchen counter, I had reached for her as she danced into the room with her backpack in one hand, a baby doll in the other and her favorite owl shaped hat tucked over her freckled forehead. As I pulled her to me, she pushed herself back away.
“Stop kissing you?” I asked with a raised eyebrow, reaching again for my coffee mug.
“Ye-s. Tooooo much wet. No touch, Momma. No cake. Time out”
She doesn’t like to hug me post run or post shower. She’s made that clear in the last year. Certainly she doesn’t mind getting wet and splashing until there is more water passively cleaning our bathroom floor than there is left in the tub most nights. But heaven forbid I should have a drop on me when I come near her. Every morning that I’ve gone for a run this summer, I can typically find her either peeking out the back porch screen door looking for me or hiding behind the kitchen door ready to ask me if I was running. Each month as the heat index rose, I found the will to get myself out of bed before sunrise to run laps in my driveway. An easy enough feat once I realized my phone could still connect to our Netflix from the driveway and the vocal stylings of a Benedict Cumberbatch flick or the rumblings of the Braverman family could spur me on. I grew to love this time of day where I could wake up on my own and get a shot of adrenaline coursing through me before I had anyone asking anything of me. Then the girls began to notice that I was up and not telling them to do anything. The prior months of explicit instructions, threats, warnings and sticker charts instructing them to stay in bed until 6 a.m. came into a state of peril. They knew I was up, and even if I didn’t feel like parenting, they felt like kidding. And besides, I hadn’t cared when they joined me in a yoga or work-out video. Hadn’t I loved it when Zuzu would scream her motivations from behind me as I keeled over to the latest Jillian Michael’s work-out? Zuzu, who, over the summer had developed an affinity for athletic clothes started suddenly popping into my line of sight in neon pink from head to toe full of the day’s questions before I could pause my audio. Then the Quail started noticing that neither her sister nor I were in the house and started investigating. A time or two she even joined me, which as I started yet another lap would devolve into a flurry of complaints for me to stop. Come back. No momma. No run. Eat. Watch TV.
Not exactly the cause for a heart-rate increase I was waking early for. Eventually they started to realize it wasn’t as much fun to watch Mom run and talk at her as it was to attempt to confiscate the remote or My Little Pony dolls before her sister got to it. I tell ya, I’m not on my parenting game at 5:00 in the morning.
Impressed with the Quail’s calm and carefully worded explanation to me as to why I couldn’t kiss her this time I leaned down in front of her careful to not drip; “Ok- Abs- thanks for telling me.” I couldn’t help myself though from making my own pouty face at not having gotten my way or a kiss.
As she scooted around my bended knee she paused, leaned in, kissed me on the cheek and scurried off to begin her day.
“Who are your friends Quail?”
“Miley. Laurel. Brooks. Blair. “
She ticks them off on her fingers without hesitation. These are some of the children she plays with in her kindergarten class at school. Last year when we would ask the same question the answer was Nikaela, Oriana, Miley, Sydney, Kaden and Landon. The year before that Mariah. Such a small thing to be able to list off your friends- and yet in so many ways- this is such a big thing for her to list off her friends- both the literal ability to say their names, to count them on her fingers, to run and play and work with them in her day. The fact that they are friends- and from what I can see- the love-fest seems to be mutual between her and them. Many people worry that when your child has obvious differences they won’t be welcomed into their communities. That the social hurdles will be too much to deal with and your child will suffer so from that. Different friends have come and gone as they’ve moved, changed schools or daycares. The same as they have for her sister. In each instance the thing that struck me as she began to name them as friends in her life was these were children that she made friends with. These were not the children of the family friends whom she only got to see on weekends or special occasions. These were the children of her everyday. Of her community. The ones she sought out in her classroom and on her playgrounds and who seek her out in return. We try to make a point to introduce ourselves to these children’s parents when the opportunity pops up. We’d love to get to know their families- and sometimes the activities we do- they do include those families. But really, for the most part- the children she considers her besties have nothing to do with us. It’s been a couple of years since she would answer Sugarplum and Zuzu as her best friends. Ask her who loves her and that is a different set- that’s Mom, Dad, Sugarplum and Zuzu. But we aren’t her besties. That’s clear now.
The other night we went to a “McTeacher” fundraiser night for her school and from the moment the door to the playroom opened I could hear the chanting- “Quail! Quail! Quail!” I didn’t know who a number of the kids were- but little Miss Rockstar walked in that room like she owned it. Then proceeded to locate her buddies and go play. A while later I heard the chant again and looked up to see her being hugged. Another buddy and the buddy’s sister had found her and they were dancing around together. A few weeks earlier when I was cleaning out her backpack I had found a picture drawn by this buddy that showed the two of them playing in a field with the sun shining and hearts all around. When I shared it on Facebook with the friend’s mom, her teacher commented how,”Laurel worked so hard on this picture today! She kept coming over and telling me that she was making it for the Quail.”
Right now her ability to make friends is at an all time high. She has more ability to talk and include herself in her friends’ conversations and to run after them and play. Fortunately now she’s at an age where the majority of the time spent together is on play. There was a period of time two years ago where she began self-isolating- she was being pulled out of her 3 year old class to go to a lot of therapies- private and public school and spending two full mornings a week in special ed as well as being pulled with the students we pay to work with her. And on top of all of that, most of her buddies were able to talk conversationally now. That growth period from 2-3 is stunning for typical language development. To the extent, that one mother told me her son had hurt feelings that the Quail didn’t talk to him when he talked to her. He thought she didn’t like him. She did though. Very much so.We were able to clear that up because the mother took the time to tell us. At that age- she was really only speaking vowels and relying heavily on gestures and sign language to convey her needs. There was very little actual talking back then. At a school friend’s birthday party this past weekend her little buddy asked me why it was hard for the Quail to talk. Such a simple question, asked so kindly. And so we talked a little bit about Down syndrome in simple terms of what it is, what things the Quail does differently, where she might need help and what she can and does do herself. We talked until the little girl’s attention was diverted, by the Quail. Running at top speed hollering her name to come play with her- and off they went. It made me smile- for Laurel, for the Quail, for inclusion and this next generation. I know the time will come when the differences will be daunting. Peer pressure- it’s no easy road to travel through. But I have hope- hope that because the Quail is and has been with the kids in her community since she came along- that maybe, their acceptance of her among and with them won’t have to be such a big thing.