EPISODE 22: THE REAL, THE RAW, AND THE UNCOMFORTABLE

“Autism and Single Parenting”

 

 Hi, everyone! This is Susan Scott, the founder and executive director of the nonprofit My Autism Tribe, and host of the My Autism Tribe podcast. This is the first podcast where I am flying completely solo, and I must admit…I’m a little nervous (laugh). I’m nervous for several reasons: 1. I’m doing this all alone, so I have no one else to help me carry today’s topic, 2. I want to make sure that I represent this topic fairly and truthfully, and 3. This topic places me in a really vulnerable position. It’s real, still very raw, and most definitely uncomfortable. BUT this is where we find growth, right? I mean, my son is placed is uncomfortable situations every day, so why shouldn’t I place myself in uncomfortable situations?

Today’s topic is single parenting with children or loved ones on the autism spectrum. I know this topic doesn’t intimately touch everyone, but perhaps you know someone that is on this journey, and perhaps you still (even though not divorced) will relate to many of the points that I discuss today. I get asked (A LOT ACTUALLY) if I believe autism, in some way, lead to my divorce. I’ll go ahead and answer this question now, so we can move on. No. No, it didn’t. Not at all. Did it add stress to our relationship? Sure, but all marriage has stress. It’s how you choose to deal or not deal with it. I’m not going into details that lead to my divorce, out of respect for my ex-husband, but if I had to summarize our extremely long story into a very small nutshell, I would just say that we had different priorities…and I’ll leave it that.

When my marriage ended, I felt so many different emotions. I had guilt, anger, depression, and (just being honest here) 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. I was grieving a relationship 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 dare I say, even enjoying life again. I’ve learned to trust myself, embrace new possibilities (just like this!), 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 that I did what I did.

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, is, and will be in the future, 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 this platform 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. Let’s get started.

Exhaustion: Where do I even start with this? Maybe with the word coffee? When you’re a single parent, you’re doing (most likely) 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…foreign lands that I had only read about in books. That’s one of the reasons that I formed My Autism Tribe. You guys just get it. Divorced or not.

Another one is 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 (in the case that the stars align and you are actually able to go out and do something for yourself), 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. Last September, the company I was working for as Vice President of Client Services, decided they were closing their doors. I’ve never let fear rule my life, I’m a risk taker by nature, but I don’t think that I’ve ever been more scared or uncertain about anything before. I couldn’t find work…literally applied to thousands of positions and was either told I was over-qualified or the position had already been filled. (This is the part that is really, really uncomfortable). I was not only feeling like a failure as a professional, but I felt like I was failing as a parent…not doing enough or everything that I should be doing to provide for my son. We were living on my savings, and thank God we had them. I’ve been doing some consulting work, but we’re not back to where we were. And I’m trying to find peace with that. The school that my son attends found a grant that helped us pay for some of his speech therapies until I could get back on my feet, and that helped a ton. Every little bit helped. Several family members also pitched in to help pay for a few things. Anyone that knows me, knows how much I hate this…I hate asking for help, taking when I can’t give, but I was literally left with no choice. I was humbled, and maybe that’s exactly where I needed to be.

This next one is super frustrating, but I’m learning to understand 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 (rarely) have time for that quote/unquote “self-care”, I’m feeling guilty because I should be with my son, because I know him inside and out, because I can understand him when he is having trouble expressing his wants or his frustrations. I, by nature, am (what people like to call) a “mover-and-a-shaker”. I am never quite “still”, always going, always thinking, so the notion of actually relaxing can be somewhat foreign to me (laugh). I’m trying to learn more, understand, and wrap my mind around this self-care thing. Right now, most of the time, my self-care is indulging myself in Netflix and eating popcorn in bed after my son is asleep. Exciting, I know. Don’t be jealous. I’m not the best at prioritizing, I admit, because everything in my mind is the most important all of the time. BUT, I’m going to try my best to becoming better at this, and I want you guys to hold me accountable. Perhaps send me some suggestions on this. How do you DO “self-care”?

So, 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.

I have strength and courage I didn’t know I had. 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 really…I’m quite proud of.

I’m also learning to be mindful and to celebrate little successes, and this has in turn increased my patience. 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.

I’ve also gotten to know some AMAZING people, like yourselves! 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, to me, has been a miracle. I may not have emphasized enough, or even mentioned at all, but the strength that I’ve gained through the circle of friends that I’ve met along the way – you have been my life jacket, keeping me afloat on days that I thought I would most definitely drown. So thank you.

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. (laugh) Bless his heart.
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 next 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.

I hope this helps at least one person out there, and I sure hope that I didn’t say anything that offended anyone in any way. It certainly wasn’t my intention. I always want to make sure that I am not only sharing your stories, but also letting you hear my story as well. Sometimes it has a good ending, and sometimes it has a not-so-good ending – but regardless, I feel like it’s a story still worth sharing.

Thank you for supporting My Autism Tribe, and thank you for allowing us to support you. You never know just how important support is, until it’s the only thing that you feel like you have. For you, I am grateful.

Keep up the great work, and I’ll see you next week!