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.