Previous month:
August 2013
Next month:
October 2013

Splashing In The Rain

Puddle

 

It is bedtime, and my daughter Zoe, fresh from her bath, is heading to the kitchen table for her nightly medicine and dessert. She is tired, I can see in the way her legs move together, in a clumsy and uneven gait.

Step by step she makes her way, pulling her walker behind her. She moves forward to the promise of cookies and milk, humming her way down the hall.

Maybe it is the break in the hot Arizona weather, or the beauty of our backyard desert sky.. but something is calling to me. So I go to Zoe and take her hand, carefully leaning into her. She is shaky and tired and with tiny steps, I lead her.

I grab her covered cup of milk and a small bowl of cookies with my other hand and we make our way out the back door and to our bench on the patio. We sit facing the desert and just watch.   above the shrubs the quail visit, the baby birds circling and tip-toeing the line of a nearby fence. The sky is a darkened, shadowed canvas with fading streaks of color left behind from the setting sun. I look up at my tiny twinkling white lights hanging above us. I strung them here recently, determined to take a moment in simple celebration each night, a reminder, to sit and breathe and just be.

Zoe’s bowl of cookies rests in my lap as she leans against me. Zoe chatters contentedly, .. but I have lost my place in the steady stream of her words. I am thinking again about the beauty of this moment and how lucky we are.


The other day, I found myself within earshot of a Mom with a young child. Near a field of grass, the child took off running. The Mom tagged behind, on the sidewalk along the field and after a moment, yelled to the child;
“ Stop running. Stop. Running. ” She yelled again, and again until finally, I wanted to yell too.
To this Mom... I wanted to yell ... let him run. LET HIM RUN.

Let him run for my little girl, who never has. Let him run, and smile, and run faster and faster until he falls and rolls in the soft green mounds until he is covered with grass, and sweat and laughter, because there are little girls like mine who will never run, who will never know what that feels like.

This perspective, this point of view, is a gift that mothers with special needs children live with.

We mother each day with our eyes wide open, not just marking the fatigue and the fevers and the falls that happen without warning, not just for these things, no. Our wide, open eyes also savor the sweetness in a smile and the simple joy that comes with laughter, we mother with a wisdom that simple actions and movement can take great effort, and therefore are a gift, not to be taken for granted.

Like any other Mom, I rush sometimes too. It was raining last week when I arrived at Zoe’s school, and as I helped her out of her wheelchair she placed one foot squarely in the closest puddle and followed with the other splashing in the rainwater. As I continued to lift her into the car, very softly she exclaimed “ that was fun..” and so instead of reaching for her seat belt as I had planned, in reverse I helped her back out of the car, until we stood to face each other, our feet planted in the same puddle, and with my hands on her shoulders steadying her balance, I told my girl to splash.

Splash, as long as you want.

Get as wet as you want, and as I watched her eyes shine and her smile spread, I was soon smiling and splashing too.

This patience, this perspective, even my point of view didn’t come naturally. It has grown with time, with each new diagnosis, with setbacks, and with each new achievement.

Yesterday, on our way to school I chatted casually with Zoe’s big sister Olivia, as we sat in the car waiting at the neighborhood light. There is a school bus stop at that corner, and the car in front of us was lingering, holding up the cars behind. “ Ughhh,” Olivia complained grumpily. “ Why can’t the kid just jump out and go already” . Slowly, the passenger car door opened and a teen emerged, as he warily eased out of the car, finally standing so we could see he was wearing over-sized glasses and carrying a long, white-tipped cane. Olivia looked at me, slumping in her seat, as the harsh, powerful meaning of her words sunk in.

I watched Olivia in that moment, her eyes closed as she murmured an apology to herself. I thought about the life Olivia lives as Zoe’s big sister. How she helps to care for Zoe, this big sister, who every day sees muscle weakness, physical challenges,... and who lives it too. and for a moment in her rush to hurry, hurry, hurry forgot that sometimes things are not as they seem.
I reached for Olivia’s hand then. “ It has taken me over ten years, ten years of mothering Zoe, to open my eyes and understand there is more to every person than what we can see, to learn to slow down and be patient”.

Together, Olivia and I watched the teen slowly step up onto the last curb and walk over to a group of teens. I looked at Olivia and she looked at me, and I know we were both thinking about Zoe. She saw her sister, in that teen, in that moment. She thought about how her own words, just spoken, betrayed what she thought she already understood.

And like that young child running fast on the grass, I thought of Zoe, and how I stopped rushing that afternoon in the rain, how my hands steadied her shoulders and the way Zoe stood, splashing, up and down in the puddles and how in the end, we were wet and muddy. And I am grateful that we took the time.. because she could.
 


Back To School.. 6 Tips For Your Sensory Child

Zoesensory
I know I’m not alone. I get smiles in solidarity, hear the groans at the local Starbucks, and share the frazzled Mom look of yoga pants, messy hair and tired eyes.  It’s called back to school shock. While some Moms are dancing in their driveways, Mom’s like me are charting lists, emailing teachers, staying up late to prep and rising early, just to guzzle down some coffee before the stressful start of the school morning begins.

 Our kids struggle with back to school-from getting out the door in the morning to falling asleep at night - and often every school oriented transition that falls in between. 

“ Sensory” kids see the world through a different lens, and even small things can be stress points. Sensory kids are sometimes rigid, anxious or distracted kids, characteristics that are not exclusive to the diagnoses of Sensory Processing Disorder, ADHD, Austism Spectrum, Anxiety Disorder or a host of other diagnoses that often have  a sensory component. 

When my daughter Zoe was in Kindergarten, I could see the physical exhaustion in her face as I helped her in the house each day after school. Guiding her to the cool, quiet and calming environment of her bedroom, straight from the car, instinctively seemed the best thing to do. First thing after school Zoe lays down to watch a quiet dvd. Only in the last year, when she started fifth grade, was Zoe able to describe the rush and noisy end to her school day that contributes to her fatigue and after school headaches.

The commonly chaotic, family school morning rush can cause my middle school age daughter Olivia, problematic increased anxiety.  Through trial and error I have found that the more quiet and less rushed school mornings are, the less anxiety she experiences, and the more confident she feels.  

Before mothering a special needs child, I gave little thought to sensory input and how it affects each of us. We all have sensory triggers-  factors that influence our mood, ability to be productive, even our ability to relax. One example , is the mood lifting transformation that comes over me when I enter a Starbucks. It’s the colors on the wall, the piped in music, the smell of coffee, the stacks of newspapers .. it’s oddly soothing and invigorating at the same time. When Zoe was little , her pediatrician came in to greet us by explaining he had a headache from the newly painted walls in the exam room. It was the bright colors, he explained. There were 4 different primary colors competing for and stimulating his vision simultaneously. He was miserable, and a week later, the offices were repainted in a bright, cheerful toned down color scheme. 

When our kids are older, it may be easier to put the pieces of this puzzle together. We have time spent in trial and error, verbal cues, the help of professionals, but what happens if it’s all new to you? What happens if the back to school transitions just aren’t working? If you are desperate to find new solutions and systems that work? 

As Mom’s we understand the concept that different children thrive in different school environments-but what about at home? Have you considered how your child will succeed best in the home environment? Carolyn Dalgliesh has written an extensive how-to guide tackling this tough subject; “ The Sensory Child Gets Organized” Proven Systems for Rigid, Anxious, or Distracted Kids “ is a top-to- bottom, complete life guide on living successfully with your sensory child that features these 6 tips you can use to start your school year off right: 

  6 Back To School Tips For A Smooth Start 

  1. Learn to Speak Your Children’s Language. Consider your child’s strengths, social and emotional development and triggers. Create a sensory profile determining how your child learns best so you can create an approach for an organized environment that will be unique and successful for your child. 
  2. Make Troubled Times Easy: A school schedule gives us less flexibility for some of the basics moms manage in every day life. Try using the support strategy of  power of choice, letting your child choose-shower or bath. Another support strategy would be using letting your child engage in their “fascination” to help them accomplish a task. In our house, Zoe often brings a small toy to the dinner table. It doesn’t prevent her from eating her meal, just allows her to engage in a different way-sharing it with us, or even talking about it during the dinner conversation. 
  3. Manage The Morning Rush a) Break Down Tasks - by sequence and time  b) Eliminate External and Internal Stimuli and c) Create A Visual Aid For Support- ie, list
  4. Keep It Together And Make It Portable: Create a homework bin for kids, holding all their homework stuff for a portable station. 
  5. Create A Place For After-School Activity Schedules. Have your kids highlight their own activities to make a visual pattern that makes sense to them. 
  6. Savor The Sweetness of Bedtime: OK, this is my Mom tip, not one from Carolyn’s awesome, empowering how-to rock at mothering sensory style book. My tip is to take the time at bedtime to compliment your kids ( and yourself) on what went right that day, reinforcing that tomorrow is a new day. Hug your kids, love your kids and then ready what you can the night before the morning madness comes again! 

 




  1. Book

Vist Carolyn's website to learn more about purchasing this book. It is a must read to add to your library. I have a couple of extra copies, thanks to the author- so if you work with special needs families and think this would be an asset to your library and make a difference please email me.