My son, Jack, couldn't lift his arms above his shoulders until he was about 5. Even then he struggled to guide his little limbs into his shirt each morning, so my husband and I would just move his arms for him. It probably wasn't until a year later and the birth of his sister, Katie, that we realized we couldn't gloss over this missed milestone. Jack needed to learn to maneuver his arms on his own. This wasn't just about making our job as parents easier. His future depended on it.
Jack is autistic with ataxic cerebral palsy, a motor movement disorder. Every new skill puts him closer to leading a life where he becomes better able to care for himself independently. But how I help him gain those abilities has required me to shed a lot of my preconceived notions of what it means to be a mom. I suppose parenting is never what any of us expects it to be. There are more joys, more fears, more everything than we can ever imagine. I've stumbled upon some surprising lessons that keep shining true with each candle we put on Jack's birthday cakes. I think they make me a better mom and the world a more tolerant place for all our kids — whether they have special needs or not.
Lesson 1: Know Patience Is Power
Which shoes did you prefer putting on your kids when they were younger: ones with laces or ones with Velcro straps? Or should I say, ones that set our kids up for success or ones that got you out the door faster? I readily admit patience is an acquired skill for me. Yet I realize it's a skill worth honing to make headway with Jack. When we're seated at a restaurant booth, for example, it will be quicker if I physically scoot Jack over. But this isn't the only time he'll need to scoot over, and learning motor movements is part of his gaining independence. He should be able to maneuver in multiple places, with different caretakers and, most important, when I'm not there. Not to be too dramatic, but I'm not always going to be around.
Of course, all that teaching requires slowing down and building in time for trial and the inevitable errors. I still get frustrated, sigh heavily and pray swiftly in moments when I want everyone to pick up the pace. Then I realize that taking a deep breath and allowing my son to learn something is much more productive. In a world of helicopter parenting, giving a child of any age the space to grow can be difficult. But it helps if you raise an adult who can confidently find his or her own way.
Lesson 2: Find Your Tribe
Being a parent can feel lonely — which sounds crazy when you consider how many of us there are — so surround yourself with people who understand your life. It's exhausting to spend time with adults who don't get what it means to have a special-needs child, those who won't change their expectations (no, the kids can't play unsupervised while we chat) or accept Jack's limitations (it's not that we don't like you, but houseboating will not be an enjoyable vacation). Just figuring out who was still willing to have us over to their house took some effort.
Along the way we've lost some friendships. We also gained some lifesaving connections when I took my first steps into the special-needs world in search of "my people." I became friends with a small group of parents, and together we established one of the first Special Education PTAs in the country. We've raised money to buy iPads for special education classes, connected parents and provided training for classroom aides. But I'm most grateful that the PTA became a safe place to talk about some of the fears I had. I was not as alone and I was not as different as I had thought.
Friends who don't have special-needs children still give balance to our life and help take some of the focus off Jack. He shouldn't always be the sole point of discussion — no kid should. Our best moments are when Jack is just one of a gaggle of children playing in the yard. It's important that he be part of that mix, because that's what a community should look like: diverse, with people leaning on and learning from one another.
Lesson 3: Presume Competence
When you meet my nonverbal son — or any disabled person — please assume that he understands you and what's happening around him. Nonverbal doesn't mean not intelligent. Say hello to him; don't just speak to me or his aide. He may not answer, but his hearing is perfectly fine. If you think he doesn't understand anything, that's all you will see. But if you pay attention, you will witness so much more of how Jack does hold up his end of "conversations." He squints his eyes to say yes, uses a hand gesture to signal that he would like some more, and smirks when his little sister is being funny.
The kids he hangs out with always naturally assume he understands them. Even though he doesn't say so, they think he wants to play, eat a second piece of cake, and go to the park, because it's what we taught them: Jack communicates in a different way. It's not a person "hidden behind the autism." It's who Jack is and how he interacts with the world. The more we treat people with that kind of respect, the more likely we are to consider them our equals who have the same rights to learn, grow and love.
Lesson 4: Advocate the Moment
We have a rule at our house that you may want to adopt in yours as well: "You can smile, say hello or mind your own business, but you don't just stare at someone." Standing up for what's right within my own family is easy. Doing so outside our intimate circle is more complex. Still, no matter how difficult it is or how awkward I feel, I speak up whenever someone unwittingly puts my family down. I explain that nothing is "wrong" with Jack and there's no need to feel "so sorry" for us. Or I set the record straight that nonverbal doesn't mean not intelligent. But I wasn't always so vocal.
Last year, a mom from school used the R-word (retarded) in a conversation with me and I silently let it go. But it gnawed at me for days. What if my children heard her say that? What if someone overheard that conversation and made an assumption about me based on her language? When she repeated the word a few weeks later, I took a deep breath and spoke up. I knew it might end the friendship with her child or make me seem overly politically correct; however, I couldn't let it slide. "I didn't mean it that way," she said. But when pressed, she agreed that there wasn't really an appropriate way to use the word, period.
The trick to advocating for my son was to learn to do it without being condescending or angry, because then I wouldn't be heard. Once I got better at it, I realized I made things easier for everyone in my family. The other day a stranger was staring at Jack. My daughter immediately said, "He's just autistic. You can say hi." For her, it wasn't difficult or awkward. Stepping up for her brother was effortless.
Lesson 5: Accept Your Limits
Several years ago, I found myself in a dark place. Every afternoon I was exhausted and frustrated, trying to care for Jack while I prepared dinner. He uses his hands to explore his environment, so Jack's sleuthing skills combined with any raw meat or onions out on the counter made creating even a simple meal problematic. Just being in the kitchen puts him in peril, whether or not I was cooking. Only two minutes on his own was once long enough for Jack to climb onto our electric stovetop and turn it on. (Thankfully, he wasn't directly over the burner.)
I had to get over a self-imposed roadblock: I, like many other mothers, set unrealistic expectations for myself. I believe I should be able to serve elaborate meals, do all the laundry, and still be a writer and editor while parenting. Now, maybe I can do all those things, but I also need to make sure my son is safe and cared for without my feeling stretched too thin.
Jack needed more help than I could provide, even with an awesome husband who parents actively. So we made it a financial priority to be able to have an aide come in each afternoon for a few hours. I don't ever want to be frustrated with my son because of the level of care he needs. All it took was one small change, and the flustered, tired old me was long gone. Sometimes I still feel that having that help is a luxury I don't deserve. At the same time, I know it's a gift to my family that I have more patience. And I know it's okay to acknowledge that I can't do it all.
I'll never learn all the things it takes to be a perfect mom, but thankfully I have enough grace to forgive myself for that. What I am doing is trying my best to be respectful of my son, encouraging him to develop new skills and providing him with opportunities.
I think many parents with special-needs kids simply don't imagine their children as adults. When you're sitting in a therapy room, a doctor's office or an Individualized Education Program meeting, it might seem as if childhood lasts forever. But it doesn't. My son is now closer to being a man than he is to being my baby, so I need to work fast in order to learn what I can to help him transition into adulthood.
I'll try to keep the beauty of the long road in mind when I think a shortcut might be tempting. I'll talk with autistic adults to gain their insights. And I'll hold Jack's hand while I can, because I truly believe there is a day ahead when those long, lanky arms just won't need me quite as much. With a little encouragement and the right opportunities, I can see my tween growing into a tall, confident, independent and happy young man.
Jennifer Byde Myers is an editor at The Thinking Person's Guide to Autism (thinkingautismguide.com) and blogs at Jennyalice.com.
Originally published in the April 2013 issue of Family Circle magazine.