Chaos and Calm
I’m sitting in my cluttered kitchen surrounded by piles of art supplies and books about shapes. Most people would say that it’s a mess. It’s just a fairly typical, if slightly chaotic, day in our household. My oldest son is perched on top of an upturned laundry basket because the base forms an oval which has piqued his interest. He gushes enthusiastically about how ovals are just like stretched circles. It’s great to see his brain connecting similarities and differences between his favorite shapes. His favorite perch pose is the Spiderman crouch where he can feel the tension in his legs while peering over the edge of the laundry basket. The feeling of perching on a height gives him a sense of calm and relief. He’s got a light red sucker in one hand and a dark red sucker in the other. It’s been a great day of potty training here and he enjoys alternating between the colors to dye his tongue a custom color. It doesn’t matter that the cherry and fruit punch flavors clash as long as the colors work together. Between his oval perch and the custom colors on his tongue, his passions and sensory needs are satisfied for the moment. My younger son is sleeping peacefully with his beloved stuffed monkey tucked under his right arm. It’s his last month in the crib even though he doesn’t know it yet. He will be testing the boundaries soon enough as he gains a new level of independence and responsibility. For a little boy who lives to jump, run, and climb, it’s going to be a challenge to build a routine that balances freedom and rules. We will find that sweet spot. It’s just a matter of trial and error.
We revel in the neurological differences within our household. Our family represents a wide range of neurodiversity as well as a few examples of rare chronic illnesses. It’s been quite a journey to learn how to live happily while meeting everyone’s varied needs and limits. Our lifestyle has to take a different form than most families. I struggle in hot temperatures, but love to cook over a hot stove. My oldest son is terrified of animals, but adores picking out animal habitats in his geography book. The youngest of the family will tackle any climbing challenge, but prefers nonverbal communication. We all have to manage this complex set of needs and respect each other to make this family work together smoothly. Many times this means that we need to take a few days off after a vacation or a stressful hospital visit to give everyone adequate time to decompress and emotionally process the events. It’s not fair to anyone if the emotional trauma and stress aren’t processed before we dive back into the hectic pace of life. If we cancel out on an event at the last minute, it’s a sign that someone needed more space and downtime than we had originally budgeted for when we built our schedule. Everywhere we go, we have an exit strategy planned out for times when one of the kids has a meltdown or becomes overwhelmed by the sensory input of a store or playground. Sometimes it’s as simple as having a stranger out for a jog with their friendly dog who comes too close to us. When the anxiety and fear kick in, a simple trip to the playground becomes emotionally charged. At that point, we have learned to toss our plans out the window and start over with a calming, relaxing, and regulating activity like a stroller ride through a quiet section of the park or taking a quiet drive through town to find interesting house colors.
Society and media would have you believe that autism, anxiety, depression, OCD, chronic illness, and other variations of the human norm are terrifying and pitiable. The focus is on fear, uncertainty, and differences. People dance around ‘sensitive’ issues and never ask the hard questions about disability that would lead to a more balanced understanding. I’m here today to point out that there are hidden depths of joy and wonder in being different neurologically or physically. It’s a perspective-changing gift to see life through different eyes and to walk through this world with different feet. It’s certainly not an easy path, but it’s quite rewarding. Erythromelalgia has given me a deeper sense of compassion and grace for all human suffering. Feeling near-constant pain and swelling forces me to be less judgmental to other people because they may be struggling with something hidden that affects their decision making. If I feel tempted to judge others, I am reminded that my disabilities might be judged as well. My oldest son deals with anxiety in most aspects of life. It’s given him a wonderful sensitivity to the feelings of others. When I am having a tough day, there’s nobody quicker to come to give me a hug and a cuddle than him. He will continue that hug until the tears are gone and the smiles are back. When it’s his turn to have a tough day, I am there to be his rock of support while we work through his anxieties and stress. Disability is not a dirty word. We should be talking about these things to broaden the horizons of what typical human life can be. Be brave enough to ask the tough questions and answer them with grace. Be open to education and validate the life experiences of others. If you see someone struggling, just simply ask if they need help and respect their response one way or the other. Put the time in to reach out to the disabled community. Read their writings. Talk to them in person. Believe their experiences. Make new connections. There’s a whole new world out there waiting to be explored!