Each week I have the opportunity to step outside of my bubble and go into different households. My bubble is my own life with kids. The typical chaos, crazy activity schedules, referee-ing fights between siblings and monitoring homework.
As an Early Intervention teacher, I work with babies and toddlers with special needs. I fall in love with these kiddos and begin a bond with their families in the two to three years I am usually with them. These families have their own bubble of chaos, sibling fights and schedules. But it expands and just keeps going and going.
This can only be observed when I am invited into their bubble each week.
A typical teaching session of playing peek a boo with a child can turn serious in an instant. A mom noticed a twitch on the left side of of her child’s mouth from a few feet away. Next thing I know she is administering life saving seizure medicine to him all while her other child clung tightly to her leg.
That day I watched a super hero. But this is a typical day for her.
A few months later I was trying to make a doctor appointment and was frustrated that they couldn’t get me in for a few weeks. Later that day, a mother was on the phone pleading with a doctor’s office to get her daughter in for an appointment. She was noticing that she was tripping over her feet all of a sudden. The neurologist could not see her for several months. I witnessed the fear in her eyes. The fact that she will have to worry every single day and spend sleepless nights thinking about what is happening with her little girl.
That day my own doctor appointment seemed frivolous.
I have witnessed moms longingly gazing outside of their windows and seeing the neighbor kids running in their yards and hoping that their child can do that someday. The embarrassed apology that her house is a mess because she was up all night with the screaming baby that couldn’t be calmed down. The bookshelves are full of binders of medical records instead of paperbacks to read in her down time. What is down time?
The tears expressed after coming home from the grocery store when she was met with stares and questions like “what is wrong with him?” The questions “Will she ever talk?”, “Will he ever eat a real bite of food?” or “what if she gets made fun of?” are constantly being asked to doctors, therapists,...in her own mind.
The stress in her eyes while waiting for her child to sign “more” before giving him one piece of a snack when it would be so much easier to just give her the whole cookie. Hospital stays are way more frequent then staying at hotels on a vacation. Then there is the challenge of finding a changing table to hold an almost five year old when they are out and about with their families.
I have seen their schedule books when penciling in our next appointment. A schedule jammed with doctor appointments, out patient therapy and equipment adjustments. This doesn’t even include activities her other children are doing. There is no circled Wine Night with neighbors to be seen (or to fit in).
I have witnessed the multiple runs to the car to load oxygen tanks, a regular diaper bag, communication devices, feed pump, a wheel chair and then carrying a 28 pound two and a half year old to the car. All this for one trip to grandmas.
There is the fear of the common cold bringing on pneumonia to their immune compromised children. This brings in more isolation due to the anxiety of going anywhere and exposing their child to germs. So plans are broken. Maybe next time. But will there be? Will they be asked to come along next time? Are some friendships fading away because she can’t drop everything and meet up at Starbucks? And date nights? When was the last time that could happen?
Advocating for services and education adds a whole new level of exhaustion. I see it in their faces. What preschool will give them the best opportunity for success? Will a nurse be able to travel on the bus with them? What is they have a seizure on the way to school? Will their needs be met? What if the teacher doesn’t know what they need because they can’t communicate? The questions just go on and on.
There are the great moments I am so grateful to witness. The first time a child looked at his mom and said the word “ma ma” after two years of working on it. Mom had tears in her eyes as she hugged him tightly. He just gave her the most precious gift.
The little girl that looked and reached for a toy a year after the parents were told she was blind. Their faces lit up with so much hope after that happened. Those moments are so precious. The happy tears were worth the wait.
And the moment that touched me the most. A mom that had a mother/son dance. A “just in case” dance if their time to dance at his wedding or preschool valentine dance does not come. I watched her video in tears. Mom dressed up in her own living room holding tightly to her precious baby boy decked out in a little suit. They danced to Coco. Mom holding her baby tight as they swayed to the emotional song. His little had reaching out for her arm and held it there.
This is a glimpse into the lives of moms with special needs children. I have so many other stories but this is a glimpse into their own bubbles. If you know one of these mothers, please offer encouragement. Understand what their days might be like. Maybe offer to help with a task, babysit a sibling or send a note that you “see them”.
Because they just don’t know how amazing they are.
And I whole-heartedly believe they deserve to know it for all they do each day.
Written by Kristie Reitz (Early Intervention teacher)