I hope this letter finds you well, but I’m writing now knowing that you might not be. If the past few years have shown me anything, it’s that parenting on the autism spectrum is like treading water on a white-capped lake. Sometimes the swells bring me up, and I can stretch my neck to survey the fascinating, tumultuous terrain. There, I marvel at my son’s precise, analytical mind, treasure the special connection we have and his many amazing gains and am confident in my ability to be his most powerful advocate. These are usually the times when my son is flexible, talkative, creative and funny. He responds well to the strategies I use to help with transitions during the day and he interacts sweetly with his little sister. These are the days when autism fades into the background and when it feels like we know what we need and are able to meet those needs.
At other times, I can’t catch my breath between the crashing waves. My brain is starved for oxygen. My chest squeezes. I can’t make decisions. My attention is scattered. I ache with fatigue. My son’s rigid, controlling behavior, constant and disorganized movement, violent outbursts, inability to shift his attention, and difficulty sleeping wear me down. My fight-or-flight response is triggered throughout the day as I struggle to keep him and his sister safe and maintain our daily structure and commitments that, in better times, seem bright and manageable. These are the days, or, sometimes, weeks when the waves of grief and stress wash over me. Once helpful strategies are useless. I am confused, disoriented, and don’t know where to begin asking for help or teasing out a specific need or problem from the tangled mess our lives have become.
Somehow, after those frightening and desperate lows, I come up for air. My lungs swell, my soul fills with hope, and my mind functions again. I’ve learned not to take these seasons for granted, so I’m writing now to throw a life preserver out, to help you recognize what to reach for when waves crash over you.
- Reach out for and, when possible, cultivate, your village. Hold on to the close friends and family who are listeners and who want to be there for you even if they don’t fully understand your struggle. Trust those educators and professionals who delight in your child and are patient and hopeful as they help him. Foster peer relationships with the children who connect well with yours; that assertive little girl who grabs his hand and uses his first and middle name to pull him away from a toy fixation, or that rowdy neighbor boy who makes him laugh and shares his intense need for roughhousing. Nothing brings hope like full confidence in a network of people who can support you and your child.
- Journal, pray, draw, or find an experienced therapist. Find a way to process the intense emotions – joy, grief, anger, hope, fear – that make up your days (and, sometimes, a single minute). This habit may also help you recognize and name your needs and those of your family members. Be authentic and straightforward with your partner and your village about those needs.
- Trust your gut. Recognize and use your intimate understanding of your son to help get what he needs. Your appetite for information can lead you down a winding road of fear and confusion and make you lose sight of what you know, in your gut. Over time, you’ll find that some information or strategies may resonate with your experience and what you know about your child. If you have the time and energy, try those strategies. It’s okay (in fact, necessary) to disregard information that just doesn’t connect to your current needs or concerns.
- Breathe and exercise. This is an area I still struggle with. I’ve been struck by how the strategies teachers and specialists suggest to help my son – yoga, belly breathing, stopping and naming how you feel – would do me a world of good too. I know practicing these behaviors myself is the best way to teach them to my children. This is an ongoing goal.
A big part of surviving in choppy waters, is freeing yourself from dead weight. When you’re parenting with autism, there’s a lot that can pull you under if you don’t learn to let go.
- Let go of the need to be fully understood. Just as autism behaviors change with seasons, growth spurts, the sensory environment, and who-knows-what, parenting with autism changes too. Recognizing the shifting currents in your child and adjusting strategies or reaching out for help is more than enough to handle. Trying to explain this to too many people isn’t the best use of your energy. Operate on a need-to-know basis as you consider how much to share.
- Learn from meltdowns and move on. Parents living with autism learn to “scan” the day or situation for challenging moments, lulls in energy levels, numerous transitions or other factors that can lead to meltdowns. This “radar” is critical but never perfect. Meltdowns happen. Don’t rehash the incident over and over, fretting about how you should have seen it coming or could have prevented it. Don’t draw from the meltdown to project your fears far into the future. Process the meltdown enough to learn from it and then move on.
Altogether, I’m urging you to practice just being – as opposed to, say, worrying or striving – in this moment and with these beautiful, whole people you live with and love. I know these reflections will be helpful as you navigate this journey.
Warmest regards and blessings,
Discover how Mindfulness can reduce the stress in your daily life and positively impact your entire family at Mindful Parenting: An Engaging Autism Course in Stress Reduction. Starts October 12!