The Isolation I Sometimes Feel As A Special Needs Parent

I am well aware that inclusion is a two-way street.
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I’m outside, looking in.

We are outside. She is happy, in this moment, while I am looking in like a young girl who doesn’t understand why her friends didn’t invite her to their sleepover.

“We” are me and Piper, my young daughter who is on the autism spectrum. I pointedly included her by saying “we” because this is more her journey than it is mine. With that considered, what I’m about to say may seem, to some, as self-indulgent. However, sometimes, I think that as parents to children with special needs, we get so caught up in advocating for our children that we suppress the feelings of loneliness and isolation that are sometimes a side-effect to our existence. Behind a brave facade, we harbor emotions that are raw and very real, emotions that need to be spoken and acknowledged before the smallest of moments leaves us feeling totally alone. Moments like I am experiencing right now.

Tonight should have been a victory to be celebrated, and in many ways, it was. My husband and I had the privilege of accompanying Piper to Kindergarten orientation. A year and a half ago, our daughter was lost, borderline non-verbal, and often aggressive. Her future was very uncertain. The mere fact that in just eighteen months, she has graduated from the full-time autism classroom and is about to enter kindergarten is nothing short of miraculous. I am filled with more joy and pride than I ever knew my heart could hold. Yet, in this moment, I feel deeply lonely.

Tonight made me realize that no matter how proud I am of my little girl, there is a part of me that feels like I am frozen in time, watching the lives of others unfold. In moments like this, I feel completely isolated.

We entered orientation tonight and found seats at an empty table. I looked across the room and saw familiar faces- other parents and children from our neighborhood. One of the moms, a truly lovely woman, waved us over to join them, and my heart soared. The children all left together to acclimate with the teachers in one of the kindergarten classrooms, and we went through the information session. While I don’t know this group particularly well, we made friendly, comfortable conversation throughout. We picked up our children, and I left feeling positive.

Then, a few minutes ago, I logged on to my Facebook account. As expected, I saw pictures of many of the children at orientation. Each one made me smile. Then, an innocuous comment on one of the photos brought my repressed emotions to the surface. One of the moms mentioned that she wished she’d have snapped a photo of the girls walking out of the school, hand-in-hand. I smiled, for it was a beautiful mental image, but at the same time, my heart dropped and I felt like an outsider all over again.

As a rule, I don’t speak negatively about my daughter having autism. Tonight, though, I have to wonder- if autism wasn’t our reality, would Piper have been included in that sweet moment?

These are wonderful mothers who have offered me support time and time again when I’ve needed it. My emotions are my own, and they did nothing wrong. I said it myself, earlier- as a group, I don’t know them particularly well. Would we be part of that close group, though, if things were different?

I am well aware that inclusion is a two-way street. Our schedules are drastically different. Through early intervention, Piper has attended full-day Pre-K. The other girls have been in half-day preschool together, and have created a bond spending time together during and after school, when we simply weren’t available. Still, I long for that kind of bond for myself, almost as much as I do for Piper. I long to fit in somewhere.

It’s hard to create lasting bonds with other parents of the children in my child’s special needs class. They are as busy as we are with therapies and appointments. They all have varying levels of needs, and each year, most of the class turns over as the students are re-assigned based on need. Perhaps knowing that this is the group of girls that Piper will remain in school with for years to come is what makes me want us to belong so badly.

I know the coming year and those thereafter will present opportunities for friendship for Piper and me, alike. Tonight, though, I feel a little lost and empty, and I know I can’t be the only one feeling this way. Acknowledging my feelings is the first step to action. I will continue to put one foot in front of the other until I find my way.

Follow our Journey on my personal blog, Driving the Strugglebus.

Angela Ashton Smith

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