Single Parenting a Child with Special Needs

* This article was originally written for AUTISM PARENTING MAGAZINE, November 2019, Issue 94.

Being a single parent can be challenging and downright scary. But what happens when you are a single parent with a child (or children) on the autism spectrum? I know this topic doesn’t intimately touch everyone, but perhaps you know someone that is on this journey. Maybe you will relate to much of this article even though not divorced.

Yes, I am a single mom. When my marriage ended, I felt a range of emotions. I had guilt, anger, sadness, and even relief. I felt every single one in a very deep and powerful way, but it was important that I felt all of these emotions because that was part of my healing process. In a sense, I was grieving a death, and entering into a world of unknowns as a mother with sole custody of a child with special needs. I honestly didn’t know if I could do it, but here I am. Still breathing, still loving, still caring, and even enjoying life again. I’ve learned to trust myself, embrace new possibilities, and I’ve put one foot in front of the other. I’ve surrounded myself with friends and family who not only support my decision, but have grown to understand the many reasons why our marriage ended.

Divorce is such a difficult decision to make, because it affects so many people. It not only affected my son, my ex-husband, and myself because we had to redefine what our version of “family” was, but it affected our extended family and friends.

I soon realized that single parenting a child, especially one with special needs, can be isolating at times, but it is doable. It also feels like piloting a single-engine plane in a storm, but you always come out the other side. Single parenting is super tough – I’m not going to sugarcoat it. I’ve been fortunate enough, through many online platforms, publications, and through other intimate conversations that I’ve had with other parents on the same journey, to hear their fears, frustrations, and I thought I might share some of these with you as well. Granted, single parents with children on the spectrum do not experience these fears or frustrations every single day, but I found that at least one time or another, I drew a line to every one…and I know that parents and caregivers who are not divorced have experienced many of these as well.

Exhaustion: When you’re a single parent, you’re doing most everything by yourself. You’re maintaining a job, coordinating therapies, fixing breakfast, lunch and dinners by yourself, supervising everyone in your child’s life, educating others, advocating for your child. This list goes on and on and on. I’ve reached places of loneliness that I didn’t know existed. That’s one of the reasons that I formed the nonprofit My Autism Tribe. You guys just get it. Divorced or not.

Financial stress: This one is a doozy. Not only are you putting food on the table, clothes on everyone’s body, paying the mortgage or rent, putting gas in the car, but also paying for therapies, insurance, child care, assistive technologies if your child needs them, extracurricular activities, books, etc. It’s a lot, but one thing I learned very early on, and this was before marriage, before a child, was to create a budget. I make a list of all our needs, sprinkled in with some wants, and I balance the numbers. Sometimes, a lot of times, it’s in the red…and that is terrifying. A lot of times, I feel like I am failing as a parent…not doing enough or everything that I should be doing to provide for my son. I have certainly been humbled, and perhaps that’s exactly where I needed to be. I’ve experienced growth and have become tougher. It has taught me that it’s ok to ask for help if I need it. Every little bit helps.

Self-care: This one is super frustrating, but I’m learning to understand it a bit more. It’s when people tell me to “take care of myself” that “self-care is important”, but I often have no one else to take my place so I can. And then, when I finally do have time for “self-care”, I’m feeling guilty because I should be with my son. I know my son inside and out, and I can understand him when he is having trouble expressing his wants or his frustrations. I’m trying to learn more, understand, and wrap my mind around this self-care thing. I have even assigned a few people to hold me accountable.

Of course, there are other frustrations and challenges that certainly pop up in this single parenting thing, but these are the big whammies for me. On the flip side of frustrations, there have also been many things I am grateful to have learned and experienced.

Strength and courage: Shew! The Susan 20 years ago would NEVER have thought in a million years that she could pull this off. Sure, I knew I had strength, but this whole journey has allowed me to see pieces of myself that I’m really quite proud of.

Celebrate little successes: I’m learning to be mindful and to set small goals each day. I have been known to write “Take a shower” on my To-Do list, and I make no apologies for this. By golly, it feels so good to just check something off on a list! I used to be one of the most impatient people, but since there have been days of very literally putting one foot in front of the other, it has allowed me to be more in the moment…exactly where my son wants and needs me to be.

Having my tribe: I’ve gotten to know some amazing people! The conversations, the interactions, the experiences that I’ve had with other advocates, other parents and caregivers, who not only have such compassion, but also a sense of humor. This has been a miracle for me.
The strength that I’ve gained through the circle of friends that I’ve met along the way – they have been my life jacket, keeping me afloat on days that I thought I would most definitely drown.

And now, maybe I can share a few tips with you that have helped me. Some of these I’m better with than others, and I truly feel like these most of these tips can work for not only single parents, but all parents or caregivers, in general.

  1. Don’t sweat the small stuff, because so much of everything going on is “small stuff”.
  2. Don’t speak poorly of your ex, because your children can hear everything and they understand more than we sometimes give them credit for.
  3. Our children can feed off our emotions, whether or not they can let us know it or not. My son can feel my tension at times, and those are the times that I feel like his stimming increases.
  4. Don’t be afraid to seek counseling.
  5. This may be silly, but just know that it’s ok to buy disposable plates or cups so you don’t have to do dishes. This can be time saved for doing other more important things.
  6. Sleep when you can, where you can. I remember several times, taking my lunch break in my car in a parking lot where I was able to catch a tiny nap. It helped! I didn’t care what other people thought. Although, one time a very nice gentleman tapped on my window to see if I was alive. We both had a good laugh.
  7. Find a support group or another parent of a child with autism. They will keep you sane.
  8. Get help in navigating health insurance. It’s ok to not know everything. Insurance is a beast, and knowledge is power.
  9. This one may sound kind of harsh, but it has helped me on my journey. Get rid of anyone in your life who causes you additional stress. Real friends are the ones who “get it” without needing an explanation. Family is a little trickier to navigate, but don’t be afraid to let them know that you are setting boundaries, and will not participate in any negative conversations about your child. That’s ok to do.
  10. And lastly, start by realizing that autism is something that is forever. I don’t discourage early intervention (I actually highly encourage it), but you have to pace yourself, while still allowing your child to be a child.

Is this the family life that I dreamed of having as a little girl? Nope. That dream has been revised, and that’s okay. I fully intend on making version two even better.

To view the Autism Parenting Magazine publication, please click below.

Autism Parenting Magazine_Issue_94_Nov