Part of establishing your identity as a parent of an exceptional (aka special needs) kid is finding the balance between how much the diagnosis sets the course for your life and how you will navigate the sea of fear, pity, ghosting, and denial that you are suddenly weathering. Some will deny anything is different for you, whereas others will act like your life has ended.
Like with any major life change (wedding, divorce, death in the family, international move) during the first few months post diagnosis there’s really little else that will dominate a conversation or more importantly, your own mental real estate. Between the educational planning, home services, the slog of phone calls to insurance providers, medical research AND the calls or emails to close friends or family, there feels like no time for reflection or self care, particularly if you don’t have these as a routine. You can’t control the to-do list, but you can control how and when to interact with others. And if you have a spouse or partner, getting time alone can now be automatically laced with guilt.
In the last few years I’ve been encouraged by the normalizing of setting boundaries with family and friends. This is especially important when we are in the thick of processing a diagnosis. Brené Brown and other researchers have modeled how to take care of ourselves while assuming the best about those we love– through boundaries. I see this with friends who will post on social media or in a text to me about something really hard that they are going through (i.e. depression, illness, body image issues, marriage problems), but they will graciously add, “I’m not looking for a solution or help. I just wanted to share.” The folks who do this love themselves and others a ton. It’s a great communication tool.
In fact, this would have been gold for me in the early years of single parenting Harrison when I’d find myself on the phone with a relative who called “to check on me, ” but then quickly they’d burst into tears over his diagnosis or offer a litany of “I don’t what I’d do if I were in your shoes.” “I couldn’t never handle it.” “You must be devastated.” Or a friend would call to ask why I wasn’t at an event and then go on to tell me how parenting Harrison was in no way different than her neurotypical child. “Uh, okay, thanks?” Instead of redirecting the conversation and reflecting a firm boundary, I’d “politely” listen in fuming silence or I would trot down their lane of misery because it seemed like that’s what they wanted.
Ultimately, I allowed myself to be emotionally tossed about by whatever came my way because I didn’t have a plan or a path forward through diagnosis. I spent so much time worrying more about what Auntie or Cousin were thinking and feeling than taking my own emotional temperature. Because of this, my anger or grief would sneak up on me in very unexpected ways. A small misunderstanding at work would send me on a crusade to prove a colleague at fault. Or I would be resting in pigeon pose on my yoga mat and realize my forehead is in a puddle of my own tears.
Planning for how to care for yourself may seem awkward or selfish at first glance. You might be thinking of how serious your kiddos’ needs are or will be. But this is the proverbial airline instruction of putting on your own oxygen mask first BEFORE trying to put one on your child. And let’s be clear, I’m not defining self care as it appears in a hashtag #selfcaremanicure #selfcareshopping. Though a manicure or time alone in Target might be just the thing you need, the essence of this is making regular time for yourself to attend to your body, mind, and your soul.
When Harrison was seven, I moved as I mentioned in an earlier post, to Half Moon Bay, California. Our place ended up being on the westside of Highway One and a 5 minute walk to the beach. That walk (alone or together), bike rides along the coast, learning to skateboard and boogie board there buoyed us both. Moving our bodies in nature, particularly at the edge of the sea, was life-giving.
Very quickly, I noticed that many parents of special needs kiddos bring them to the ocean. While some can’t tolerate the sand or physically can’t navigate it because of accessibility barriers, many families find their kiddos’ pacing, arm-flapping, or quirky sounds all become part of the panoply of movement and fun –and that in itself offers a physical and emotional respite for parents. And while your kiddos stim on the waves, you might get your toes in the sand or get a walk in the sea air.
If you can find something physical that you can do with your kiddo or that supports your kiddo while you watch, do it. Physical experience is one of the most consistent sources of joy. If you are struggling to find things for your kiddos, one thing that Harrison and later Lazlo both joined was a Challenger baseball team. Instead of tense competitive zones with parents yelling at refs and children crying or sitting in the outfield, there are cheers for both teams and for all players. Everyone practices, plays and will get hits and field balls. Even kiddos in walkers and wheelchairs play. All ages are welcome. Many counties offer some form of special needs supports through local or national organizations like Special Olympics.
Since we are still in the COVID era, Zoom yoga classes are available for free or low cost now. I have continued to have yoga in my quiver of self care as it covers the body and mind through breath, and I’ve recently gotten both kids to join me or at least tolerate me stepping away to practice. I still need to do it alone for the deep relaxation, even if it means sometimes waking up way before or after my kiddos go to bed.
Before Harrison was diagnosed, I decided I wanted to complete an MFA in poetry. I had whipped through a master’s degree in English Literature and Composition in 18 months, so I could get a job teaching. After five years in the college classroom, I realized I wanted something more for myself. Something creative. However, I delayed that goal until I had more of a handle on Harrison’s care and time to attend several poetry writing workshops to build some writing chops before I applied. Did I spend long strings of nights that blurred into mornings grading and then editing poems? Yep. But when I would make that shift from the grading to my own poems, it was like entering a sanctuary or a garden. Time would evaporate, and I would enter my own internal landscape. It didn’t matter if the poems were bad drafts (most were), but the carving out of time to be with my own thoughts, ideas, movement, creative process needed to be a priority. Mihaly Csikszentmihalyi’s book Flow, explores the psychological benefits of this state of mind in depth. I highly recommend his work.
If you are religious or have a regular practice of some sort, you likely have leaned into your house of worship or yogi or meditation circle to find some support. This area became sticky for me and one that I’d like to raise here. Often there is a community or social aspects to any religious or spiritual groups–and they have structures that may or may not be appropriate for your special needs child or be an adequate support beyond what they can offer spiritually.
After Harrison was born, I was attending a local church, and many of the people there I had known for years from college. Nice people and forward thinking and compassionate environment in many respects. Yet, I wasn’t able to leave Harrison in the Sunday School like the other parents were in because of lack of language and behavior differences. So I would either have to have a sitter every week or drop attending. And, like I said before, advocating for help or change was a stretch for me.
Clearly, there is an element to religion and spiritual practices that is also private. So, a house of worship or group may not have the resources or know-how to meet your needs so you need to find ways to meet your spiritual needs rather than just ignore or drop them. It’s important to advocate for yourself or find a place that is a better fit.
Some parents end up spring boarding from diagnosis into advocacy work, writing, teaching or research. They seem to be able to harness the diagnosis into powerful external change. Others divorce, fall into depression, suffer from panic attacks, emotionally disconnect from their kids, or cope with over drinking alcohol or binge eating. I want to suggest that there’s a foundational step no matter what the future holds for you and your family. Pay attention to your body, mind, and soul, giving all of them what they need. Plan how you will care for yourself. You and your kiddo will continue to change, and you have the ability to move forward together —and be like the Roman god Janus—a doorway to transition, a new beginning.