Parenting Blogger, Jackie Davidson, shares her perspective on feeling lonely as a parent of a child with special needs.

Lonely/Never Alone

The media portrays parenthood as a beautiful experience full of joy, excitement, and ease. If you are a parent, you’ll agree that there are moments like this, but other, less enticing moments are not portrayed as often. Being a stay-at-home parent is the loneliest kind of lonely, in which you are always alone yet never by yourself. Add in the added stress of a special needs child, and you most definitely exponentially increase that loneliness day by day.

We Hide it Well

I am an extremely social person. I am the type of person who can make friends with anyone at any time, yet I often feel alone in my life. As a mom, I usually talk with other moms about parenthood and our kids, and every time I have these conversations, I am reminded of how different my life is with an autistic daughter in it. What is odd is that at that moment, I am not alone. For example, I might be at gymnastics with Lydia’s twin, Heidi, and be talking to other parents. I am not physically alone, but I am emotionally isolated. I’m sure someone could take the viewpoint that everyone has a unique experience and might feel this way, and I’m not discounting that in any way. What I am saying is that nobody talks about how lonely it is to survive with an autistic child.

Constantly Explaining

I am not shy to explain our way of life or talk about it, but that gets exhausting and often leaves me feeling like an odd man out. Talking about how different my life is doesn’t always make things better; in fact, it sometimes feels like it’s all I talk about because I can not relate to other parents. We wear a mask to feel like we can pretend to belong, just like many autistic individuals do.

Most parents don’t get a sense of isolation when discussing sports with other parents, but I do. My daughter isn’t able to participate in regular sports activities at this time so her activities look different, such as therapy. Also, I am not physically able to put my other kids in as many sports as some because I can only do so much and Lydia takes a lot of our time.

Isolation

Most parents don’t feel a sense of isolation when people are discussing their spring break plans. They might feel jealous or start to plan their family vacations, but I am not able to take my family on a big trip with my autistic six-year-old in tow yet. So we either split up or don’t go. This leaves me feeling like I am somehow making excuses as to why I am not giving my children these experiences.

Coping Options

During hard stretches, when perhaps Lydia is overstimulated, going through a big change, or even a growth spurt, our life is extremely hard. I can call my friends and family and cry and talk, but after I get off the phone, I don’t feel any better because there is no help anyone can offer me. I can even call friends who also have an autistic child, and that doesn’t even help because everyone is different, and usually, we are both feeling lost, exhausted, and run to the bone trying to make sure the siblings are still living a full life while helping our special needs kid. I fight a lot of battles in silence and no one sees me pick myself up when I fall. 

People often call us strong, like this a compliment, but they don’t see the weight it leaves on our shoulders. People see us as thriving and unstoppable, but they don’t see the nights of zero sleep or the constant research. People see us as heroes, but the thing about survival is that it rarely feels victorious. It just feels lonely.

Sacrifice

With all of this said, I am hoping this article will help those with autistic kids feel seen and also help others understand. As autism parents, we work twice, if not three times, harder to help all of our children have all of the experiences they need. I had someone once tell me that they felt as though Heidi was being held back because she has an autistic twin. That is just not the case. Heidi does all the sports and activities and play dates her heart could dream of, but she has to pick and choose. This is a good lesson in life for Heidi, and she is happy every day.

Our kids don’t pay the price for the extra work it takes to support our autistic kids; we do. We sacrifice extra money for sitters so we can take others to activities. We sacrifice our time for therapy and meetings. We sacrifice friendships because we can’t drive a long way to keep it going. We sacrifice ourselves and our social life to support our kids.

Read this story about Parental Trauma and this post about Keeping Perspective.

Story by Jackie Davidson for BlueWaterParent.com.

All content of BlueWaterParent.com is for informational and entertainment purposes only and does not constitute medical advice.