A few weeks ago, I wrote a post offering advice on navigating the special-needs parenting journey, which seemed to resonate with a bunch of people. It didn’t feel entirely finished, so I’m going to write a bit more. As always, these anecdotes may not apply to you or your situation. But they are what I have sincerely learned for myself in the hinterlands of disabilities parenting. Cheers, darlings.
Don’t Go Too Far Into the Future
It’s easy to panic about the future when you have a child who is different. Perhaps the outcome of the child’s condition isn’t well known. Maybe there are a lot of unknown factors. People have asked us all through our son Jack’s life what his prognosis looks like: would he ever speak, when would he begin reading (cue the eye-roll), when would he stop acting out, how big would he get?
After diagnosing Jack, our geneticist told us to consult the internet and see what we could find from other parents, because there were so few research studies at the time about M-CM Syndrome. He didn’t have much concrete information about the future. At every appointment, he asked us how we could educate him about the syndrome. (Note: going to a doctor who wants you to teach him about your kid’s rare condition is the actual worst and I hated it so much I can’t even #flamesonthesidesofmyface). Basically, the answer to everyone’s questions about Jack’s future, was “We have no idea.”
Roughly 88% of all my existential meltdowns over the years have happened when my mind has gone all worst-case-scenario over our family situation. Let me repeat, I was not necessarily falling apart because things were actually catastrophic; I was falling apart because I could foresee things getting much much worse, and my imagination turned toxic.
And so, when Jack was barely a kindergartner, I made a pact with myself that I wouldn’t think about the future. I allowed myself to think a week ahead, a month ahead, six months ahead. But that was it. I could only stew about and make plans for and contemplate things in the foreseeable future: Early Intervention, specialist’s appointments, Structured Playgroup, visits to grandma’s, and trips to the gardens or a museum or the zoo.
I DID NOT LET MYSELF THINK ABOUT WHAT JACK’S LIFE WOULD BE LIKE BEYOND THAT.
I couldn’t. It was terrifying. And yet, when I wasn’t trying to fill in the specifics with my own limited understanding, I retained an unformed but palpable sense that things would be better someday. This leads me to my next point.
Hold Onto Hope
Yes, it’s a cliche, I KNOW.
But it’s vital to your own health and your family’s ability to weather their challenges. Hoping for better days is what compels us to engage with the painful things. We face them with a sword of belief–that we can improve some things, and that we can find a place of peace and acceptance.
I didn’t know how things would ever get better. They were simply so bad for so long. But on a spiritual level, I knew somehow they would improve. In my mind’s eye, I could SEE us in later years. I could see us happy and calm, with Jack in a good place where we would visit him, and where he got the care he needed.
This is what I held onto for a long time as we worked through years of therapy and ear infections and Code Browns and behavior problems.
My Take on Inclusion
Someone asked me for my thoughts on the concept of inclusion when I wrote that other post, so let me speak to this idea.
I used to fear too much intermingling of neurotypical kids with neurodiverse kids (meaning MY kids!) It just seemed so fraught with difficulty. Jack would knock down kids at the playground who were in his way. Preschooler Charlie would say weird things and have tantrums over something as small as a fire truck’s siren somewhere in the neighborhood. I just got so tired of always explaining my kids’ differences to everyone.
At one point, I wanted to fashion a sandwich board to wear around in public that said something like: My kids have autism. They are overwhelmed. But they want to do fun things in public, too. We don’t need advice. We are doing our best. Have a nice day.
Over the years, I’ve become more relaxed about plopping my family with our incumbent issues in the midst of gatherings of “typicals” everywhere. I don’t bother explaining the hyper-focused comments about World War II history that Charlie throws into literally every conversation. I don’t worry about what people may think about my kids’ rigidity with routines. I’m unconcerned with anyone who may be inclined to be annoyed or confused at my sons’ delays with reading, toileting, socializing, etc.
It just doesn’t even bother me, anymore. My kids are the ones with special needs. I don’t need to protect everyone else from exposure to people with differences. Those people are perfectly capable of observing and learning and accepting, which they generally do.
Charlie is now mainstreamed at school for much of the day, and has made good friends. He’s quirky, but he’s also super charming, so people like him.
Truman doesn’t qualify for an IEP. He’s academically ahead. And yet, he had to be literally dragged into his first grade classroom every day for six month of this school year (by me, in my pajamas, HOO BOY). His classmates saw a fellow student who was having a harder time adjusting to the sensory input of a new grade level and, remarkably, they didn’t judge him for it. They just looked at him, said hi, and carried on with their day. His teacher is an ally when it comes to giving Truman time to go jump around or play with a fidget toy in the cubby room when his internal engine is revving way too fast. She also lets him sneak the crackers in his backpack to keep his tummy full, which solves 94% of his behavior problems.
At the same time, I am unwilling to expose Jack to the general population, for everyone’s safety. Jack has always been an outlier, in terms of disability. He requires the MOST restrictive environment, which is the opposite of what people strive for. But it’s what he needs, and when his needs are met, he’s a peach. The behaviors fall away, and Jack lives a happy, peaceful life.
Accept That Everyone is Doing Their Best
This includes you. And your child. And the woman in the grocery check-out line who asks, “What’s wrong with him?” while peering into your toddler’s stroller. And the school administrators who have a different vision of what your kid’s education should look like. And the parents in the children’s hospital waiting room who keep staring during your nonverbal preteen son’s outbursts. And that one church leader who told you if you just tried a little harder, you could fix all your family’s problems. And the kid who saw Jack tantruming and said to your neurotypical son, “I’m glad my brother isn’t crazy.” And the people who send you “inspirational” articles about people with autism being “cured” (hello, red flag) or even just living independently or going to college (things that surely are inspiring, but which will never happen in this life for many people with disabilities).
When I started to see the people around me as flawed, but intrinsically good, I managed my expectations better. While many comments still hurt, I began to stop holding onto them. I kind of just watched them fly past me like weakly-launched arrows, falling benignly to the earth a short distance away.
I don’t know how I got to this point. I think it happened when someone said and did something very hurtful to me. I wanted to tell this person off and give them a taste of their own medicine. I ranted in my mind, practicing my verbal jabs for when I saw them and told them what I thought of their behavior. But here’s what actually happened. I saw this person, and while I felt so angry, God audibly said in my mind, “I love them as much as I love you.”
This is what did it. It quelled my fury. Seeing people as God sees us diffused my anger as I deeply considered that we are all beloved.
It’s what I wanted for Jack and my other boys, too. They could be really difficult, too, but I wanted people to be forgiving and loving to them anyway. I began to see that we all need understanding and patience. It’s the human condition.
Avoid Thinking too Generally
When I think about all the families struggling with autism or seizures or bipolar disorder or complex medical conditions, I feel overwhelmed and depressed. How can the world handle so many people who face so much hardship? How will all the aging kids with autism find care as adults? How can so many beleaguered parents face impossible situations into perpetuity? How, how, how, how, how.
And when I get like this, nothing good comes of it. It’s really simple to go down the rabbit hole of worry and defeatism when you think in global terms. My solution has been to think locally.
I’m not smart enough or powerful enough to solve everyone’s challenges. But I am able to look at the ways God has directed me to always find the right solutions for my children’s needs. We have always found our way through, even it if took time and tears and effort and lots of detours.
I’ve been rather overwhelmed at times by the suggestions from Truman’s Occupational Therapist, who has urged me to create tactile bins, establish a reward/incentive jar with pom poms, create a visual schedule of moving or calming activities, establish a supply closet of sensory activities, expose Truman to organized sports, spend time building forts/ropes courses/obstacle courses, and implement a system when Truman learns to take responsibility for assessing his own inner engine.
You guys, pom poms and rice bins and ropes courses are way way way outside my wheelhouse. My entire being bristles at the idea of crafting visual schedules and forcing Truman, the biggest homebody who ever lived, into sports. These ideas make me want to retreat to the woods and never emerge.
But I’m a grown up, so at some point I took a deep breath, ate a Sodalicious fudge cookie (or a pink sugar cookie, I can’t remember), and decided to OT the heck out of Truman’s life in my own way, which looks like this:
- My version of tactile bins is asking Jeff to pick up some bags of sand to spruce up the sandbox in the backyard.
- My version of pom poms in a jar is reminding Truman that if he does his jobs as soon as he’s asked, he can earn more time playing with friends or electronics.
- My version of sports is going for a walk with Truman blazing a trail ahead of me on his scooter. It’s also inviting the neighbor kids over and shooing them all outside to swing and jump on the trampoline.
- My version of a sensory supply closet looks like a few tubs of playdoh, a couple games I ordered from Amazon, all the living room throw pillows and blankets, and the bathtub. It’s enough and it works.
- My version of an evolving schedule for Truman is having a list of ideas on my phone, and asking him to occasionally assess his inner engine and make choices about how to either calm it or redirect its excess energy.
I should write a (very short) book titled, Occupational Therapy for Dummies.
This is all to say that thinking broadly and idealistically gets me down. But thinking in manageable, incremental pieces, which happen to also be simple and convenient, makes handling Sensory Processing Disorder do-able.
Another vignette about thinking locally, not globally is something I did last summer. I felt inadequate at the scope of suffering among my special-needs parent friends. At the same time, I had a sense of survivor’s guilt at not facing the same level of struggle I once had and which they were still battling every day.
My “local” effort was to pick someone close by who I could help in a meaningful way–in a way that would have meant so much to me when Jack was little and living at home. My husband’s cousin lives near us and, last summer, was quite pregnant while coping with the vicissitudes of summer (no school or respite care) for her special needs son. Also, she was working part time and also had a tiny yet opinionated toddler and an older daughter who wanted to get out and do all the things all the time.
So I watched her kids one morning a week, which was extremely fun for my little boys and no biggie for me whatsoever. I mean seriously, there were no Code Browns and no one was throwing the remote at anyone else’s head. Easy peasy. We played in the sprinklers, we drew with chalk, we watched The Muppets, and we went nuts with stickers, markers, and Oreos (not all at the same time. It was honestly super easy and enjoyable for me. But for these kiddo’s mom, it was the day she told me she looked forward to all week. She could get things done and catch her breath and she knew she would survive.
I guess the moral of this story is, Jack taught me how to see someone in need and how to offer exactly what they needed. He’s the real MVP. Thanks, Jacky boy.
Focus on Sleep
I’m a big believer in the ability of sleep to heal. All of us do better, think better, act better, and feel better when we are deeply rested. And while sleep can be elusive when you have a special-needs child, it is possible to find it in various iterations. But it has to be a priority.
Nap times and bedtimes were sacrosanct during my kids’ early years. Part of this was for them. Mostly, it was for my sanity.
Forgive People When They Say Stupid Things
People often said irritating things to me when they learned of our parenting struggles. They’d hear about the Code Browns and tell me how one time their kid had a diaper blowout that stunned and horrified them. Or when my kids were irrationally picky or having meltdowns, they might tell me that their child did that sort of thing, as well.
And while it felt like they were invalidating all my pain by comparing their typical child’s one-time poop event or age-appropriate occasional tantrum with our daily pathological struggle to simply exist, I could see that they didn’t mean to hurt me. They were actually trying to connect with me and empathize, even though their efforts were ineffective and misguided.
Sometimes people don’t know what to say, and so they say something wrong. I try to forgive these gaffes by focusing on the person’s intent, rather than their actual words. Are they trying to understand and care about us? Then that’s what I hold onto.
There inevitably will be people who say ridiculous things that make you want to turn and walk away and keep going until you get to the airport and then board a plane for anywhere that isn’t where that person is. But for my own sanity, I don’t let myself hold onto those comments. Clueless comments are just that–clueless, meaningless, not worth fretting over. Those folks don’t know the reality of your life, so go ahead and let their uninformed opinions go. You know what your life is actually like, and so does God. This is enough.
Do the Needful
My husband says this phrase when he’s trying to get our boys to man up, be responsible, and follow through. When things get hard, when you don’t know how to proceed, when you’re really weary–do the needful.
To me, this means choosing to a) prioritize, facing the most pressing thing first, and b) power through the ugly things because life be like that sometimes, and because then you can move onto something nicer.
Just do what needs doing. Don’t do everything. Do the important thing. Do the pressing thing. Do the difficult thing. But do it one piece at a time. It’s the opposite of doing everything right now, and perfectly.
It’s a patient, neutral, unemotional approach to facing chaos and difficulty.
This is a lot of advice that nobody asked for. So. Much. Advice. Yikes.
Now that you’ve read this giant post, you really deserve a crisp Diet Coke. You’ve earned it, baby. Go on, treat yourself.