Please Make Room For Us

Last Tuesday started like every other day.

I woke up way too early, tried to coax my son Ben back to sleep for an hour and lost that battle.

Then, I gave in, got up and got ready while trying to keep him entertained.

I woke up Caleb and shuffled both boys off to daycare.

It’s the story most working moms could tell every single day.

It was my usual stress, the usual morning hustle, but then someone stopped me in my tracks, both figuratively and literally.

The boys’ daycare director stopped to ask me about their schedule and what followed was something I swore would never happen to me, not my kids. 

A lot of us in the special needs community go through a phase of “not me” and “not my kids” while we’re waiting for a diagnosis or while our kids are still little and their behaviors are less noticeable.

But we also go through it while we’re dreading the inevitable…the act of being excluded. 

I’ve been following other special needs parents on social media and blogs and learning about the annoyance, disturbance, and the downright ugly that is out there surrounding our kids and how other people feel about them. But I never thought it would happen to us.

My boys are too sweet, too loved, too joyful. I was in denial.

But I got a reality check on this particular day when I dropped my boys off.

I got stopped and asked about Caleb needing to attend for two days over a school break since he is usually only there before and after school for a couple of hours.

I asked if this was a problem, he typically goes before and after a full day of school.

The director responded that they had a lot of kids coming that week and that Caleb needs a lot of one on one assistance, and she didn’t have anyone free to do that due to the high numbers.  

Now, I know what she’s saying is not off base. Caleb’s school has basically given him a one-on-one aide even though it’s n

ot in his IEP because he cannot follow a school routine without someone redirecting his attention over and over again. But I didn’t think about this for daycare.

Caleb seems so happy to be there before and after school and his daycare providers seem at ease accommodating him.

So, when I heard this concern, I immediately retreated to fight or flight. I said we’d try to find someone to watch him for those days then went to my car and cried.

I cried because I love this daycare and was under the impression there were no concerns about my boys, that they were getting inclusion and not causing a hassle.

I cried because I feel like this is just the beginning, that I need to remember that not everyone is vested in my children like I am and some people are going to see their constant movement, inability to sit still, unawareness of how loud they are, and their overwhelming anxiety as extremely challenging.

I called my husband and told him what had happened. He told me what I needed to hear:

• “Carol, we need to say something.” 
• “They need to include Caleb.”
• “They need to make room for us.”

I knew he was right.

I knew I needed to have that uncomfortable conversation where I speak up about our feelings of being singled out, about the unfairness, about how we know Caleb is a handful, but that we can’t ask relatives to watch him every time he has time off from school.

And how we can’t keep him from his place of comfort on a day he is already losing his typical routine, and we can’t exclude him from his peers.

So, the next day, I had the conversation.

It was a little uncomfortable. But I learned two things.

Number one, that people may come off rude sometimes when talking about our kids, but the intent to make us feel like outcasts is not always there.

A lot of this comes from a lack of knowledge on how to work with kids with fragile x syndrome, autism, or other special needs. Kids who can’t communicate, kids who have the inability to have calm bodies, and have anxiety that consumes their everyday lives.

The second thing I learned is that these people will not learn how to adapt to accommodating our children unless we push them to do so.

That push doesn’t have to come from a place of anger or hurt, it can come from a place of educating, informing, and provoking empathy. But without some uncomfortable conversations, the needle won’t move, and the world won’t make room for kids who are different.

Written by, Carol Williams

My name is Carol Williams, and I am a mom to two beautiful boys with fragile x syndrome. I am also a wife and a teacher. I am hoping to express some of the overwhelming emotions of this special needs journey we’re on through my writing. I also want to raise awareness about fragile x syndrome in order to help make the world more accepting of kids like mine. You can follow our story at discoveringfx.com.

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