When your child is not welcomed

by Cynthia Carr Falardeau – Autism Support Network

It still makes my blood boil. It’s been two years since we were asked to leave a tumbling class at a local “family fitness center.” I will change the names to protect the not-so-sensitive.

Heart break is not new to me or other parents of special needs. I embrace the fact that I am part of a club I never intended to join. I have accepted a different path that has opened my mind and taught me to embrace beauty in expected places.

It is hurtful when you run into a person who runs a children’s program that is not welcoming to your own.

The most heartbreaking part is explaining to your child why you can’t return to a program they enjoyed.

Having never been a fan of Judge Judy, I almost wanted to “out” these folks who plaster their family values around town and in print.

As a regular contributor for Parenting Special Needs Magazine, I have to say this is one of the hardest pieces I have ever had to write. Rage and anger still fester when I tell other parents and professionals about what happened. It’s hard to temper those feelings. Even harder is trying to make sense of it.

I am just a parent who writes from her heart about raising my son who has special needs. My sincere prayer is that other parents might identify with what I have experienced. I also hope that it brings awareness to people who do not have children with challenges.

So let me briefly start with the facts:

We received a message from the gymnastics director of our son’s program on our home answering machine.
Honestly, I don’t know why we have a home phone, as we always give our cell phone numbers out, but that’s beside the point. The director asked us to call before we returned to class. As it turned out, class was to start within the hour.

Panic immediately set in. My husband verbalized my thoughts, “We were being ‘booted’ from a program our son had grown to love.”

We called and the director was not available. However, we were told she would speak with us when we arrived.

Filled with fear and anger I arrived at the center. I repeated to myself, “Be calm. Speak from your head not your heart. Curb the ‘Mama Bear Syndrome’ until you get the facts.”

As I stood next to my son while the little group of tumblers stretched, I watch the director move about the gym. I tried to make eye contact and even waved. I felt more like flashing something else less friendly.

Finally, I saw the instructor call for the class leader to come over to her. The young girl, who we will call Lisa, appeared to be receiving some message or directions. Lisa approached me in a very gentle manner and explained that the previous instructor, an adult with a heart for children with special needs, had left the facility to stay home with her children. Lisa was her replacement, a 15 year, old high school student.

Lisa explained that in order for our son to continue in the program I had to be present, at his side the entire time. The family facility has an adjoining workout area for the parents that I had been using while he was in class.

My Issue and the Gymnastics Director’s Reply:

I was not upset about the request, although, I thought it was unfair. My “beef” was that my expectation was that the gymnastics director would speak to me to explain the issue and not send a child over to do her work.

Eventually the director did walk past me. I stopped her and said, “Excuse me; I am waiting to speak to you.” This was her reply, she erupted: “I am very busy!” As her perfectly manicured fake nails flashed in front of my line of sight, I felt my blood pressure rise. “Busy?” I wanted to scream! I held back from dissecting a woman who obviously had more time than I did for pampering herself. Like many other parents of special needs children, we have little time for ourselves. I refrained from flattening her for her for her shameless and insensitive approach. It was clear that she had no intention of speaking with me and had hoped she would avoid me.

As she chomped her gum with great vigor between sentences, it became clear I had only one choice. I withdrew my child from the program.

Unmatched Expectations:

It was a classic case of unmatched expectations. I had believed in the “brand” of the center’s advertising and promotion of a place of caring and inclusion. She did not demonstrate the qualities of a product I had invested in.

What I learned:

1. I cannot change their behavior. However, emotionally we want to “fix their wagon.” The thought of sending them on a bullet train to the Wild West for a whopping (or at least a good cattle prod!) Gives us great comfort.

2. I have a choice in redirecting situations that involve how my child is treated. I also need to remember that my child is different and that not every situation or setting may be able to accommodate that their needs.

3. I may need to step-out of or remove my child when I cannot give the time to meet those requests.

4. I need to do more research before enrolling my child. I had spent time talking to the original instructor. I should have started at the top with the gymnastics director. I would have saved myself and my son from this situation as I would have learned what her expectation was and if it were a fit for us.

5. There are other programs available. I found a program that combines his occupational therapy goals with tumbling in a sensory gym.

What I want others to know:

1. Many of us work long hours to finance extra therapy and services for our child. We are not martyrs. We do it because believe with all of our heart that it will make a difference and that we have been called to raise this child to be successful.

2. Inclusion is the goal – We want our children with special needs to have the opportunity to participate with typically developing peers.

3. We are more sensitive than most parents – We have battle scars. We have been thrown out of other programs, theaters, doctor’s offices and restaurants. Therefore when we get a call 30 minutes before the gymnastics class is about to start regarding our child’s behavior, fear kicks in. We panic that we are once again about to be “fired” for lack of understanding or compliance.

4. As much as our children are different, they are the same as other children – Our children’s differences are often deceiving. They have challenges that mask their intelligence and their comprehension of what is going on around them. They are often more acute to the leadership abilities of a teacher than most typically developed children. You may not think they “get it” but they do and they know how to “play” a hand that will get them the most attention. It’s that the goal of all kids?

5. Our children’s differences make you uncomfortable: I have a theory that those who are the least balanced are often rocked by the presence of my son. By that I mean, the person with the most insecurities is often the least comfortable with our children. Their demon my not have a neat and tidy title like Autism but dig deeper and they have their own issues. The only difference is that they have not been formally diagnosed.

6. The goal and hope is for understanding: Today, I watched a director send a 15 year old to explain the situation regarding a kid’s gymnastics group. The best part of a disappointing situation was watching a young girl display compassion and understanding for a young Autistic boy. Her director lacked the professionalism to talk with me. Just as she, the director, made her own assessments of us, I did the same as she; I watched her chew gum like a nicotine craved smoker.

We all have our challenges. Our differences have the potential to unite us if we only give it a chance. I can’t make jerks into kind people but I can keep reminding others of the role children and adults with special needs have in our society.

Courtesy of Parenting Special Needs Magazine

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