Don’t Look at the Whole Staircase

I like to think I have some natural gifts that lend themselves to good parenting. I believe I am empathetic, creative, logical and kind, which helps me connect to people in general and my kids in particular. That’s not to say these qualities are always activated when I’m parenting. Perhaps I’m using one or another, or perhaps they’ve all flown out the window in a moment of frustration or exhaustion.

I also happen to have two of the least fickle kids on the planet. Once they decide, They Have Decided. On whatever it is. Maddie’s way of expressing her decisiveness is the simple act of refusing to bend. She has decided not go to to Thanksgiving at Grandma’s, for example, so there is nothing you can say or do, no threat of punishment or offer of reward, that will alter her decision. The answer is no, and that’s that. We can make our whole family insane trying to change her mind, and the likely outcome involves not even a glimmer of hope. There are exceptions, of course. Like when I was trying to potty train a nearly four-year old kid who just wasn’t interested in the process, so I started challenging her to race me to the bathroom. I think it worked twice, and then that was the end of that. Still, I was thrilled with my double victory.

My son’s way is different. He can argue you into a rabid, frenzied froth of frustration. You will never win that argument. You might not lose it either, but as a parent not winning is pretty much the same as losing. I had an early indication of his logic skills when he was a five-year old preschooler. He had shut the door to his room, which was unusual, so I thought I’d better investigate. I soon discovered he was in his closet, door closed. He had to be up to something. “What do you have in there?” I queried. Out stretched a hand holding a box of goldfish crackers. “Why are you hiding those?” I asked. “If you had asked me I would have said yes.” And then something dawned on me. “What else do you have in there?” Out stretched his hand with what turned out to be decoy number two: a box of Teddy Grahams. I repeated my response. I was detecting a pattern. “What ELSE do you have in there?” And there it was, a bag of chocolate chips. And that was NOT okay with me. That evil genius had rolled out his decoys in hopes of avoiding the final discovery. “We’re screwed,” I told my husband. Some years later – maybe he was eight – he effectively asked me a series questions, knowing how I would answer, so that I would actually lead myself to his desired conclusion. I don’t remember the topic, but I do remember realizing what was happening just before he succeeded.

I am reminded of our friend’s mom who early on recognized our challenge with Maddie. “Her stubbornness will serve her well when she’s grown. The hard part is getting from here to there.” Amen, Joan, amen. Same for our son, I’m sure.

So anytime I can talk my kids into anything, I’m surprised and delighted and pretty darn proud of myself.

A couple weeks ago my niece M turned 18. Maddie and M are only nine months apart and truly the best of friends. Our families live about 45 minutes away from each other. M is incredibly busy, so the girls don’t see each other as much as they’d like. So you would think, wouldn’t you, that the upcoming party and sleepover would be unmissable.

As I try to do with Maddie, I had reminded her each day for a few days to prepare her for the event. Late morning the day of the party I sat down on Maddie’s bed and said, “We should leave around three o’clock today.”

And to my surprise she responded, “I have been trying to motivate myself all week, and I just haven’t been able to do it.”

All the months since she graduated high school, I have been avoiding, as much as possible, any situation that involved making Maddie go somewhere. After all those years of morning turmoil, I realized not only did I no longer have the energy to take on that fight, but that the fight was futile anyway. So much wasted effort, so much heart-attack inducing frustration that ultimately had no positive effect—I just couldn’t go back to that. And yet here I was.  I could feel the tightness in my chest forming almost immediately. We couldn’t let our sweet M down on her big day. And I really wanted Maddie to enjoy what I was certain would be a good night. What was I going to do?

I pulled myself together enough to say, “I think it’s been about two weeks since you went anywhere. That happens to me too, like when I’m sick for a week and I’ve been at home, it’s just easier to stay home than go anywhere. Eventually I just make myself go somewhere and then it gets easier. It happens to everyone,” I assured her.

She was still unmoved.

“OK,” I said. “Forget about going all the way up to M’s house. Let’s just think of something small to do first. Like maybe we could go to the coffee shop for lunch.” Originally I had required she take a shower, but I realized that was a serious obstacle, so I let that go.

“Is How to Train Your Dragon playing anywhere?“ she asked. A glimmer of hope!

“I’m sure it is!”

So we picked a movie time that allowed us a quick lunch out and would also get us to the party in time. I said, “Just throw your toothbrush and toothpaste in your bag in case we get up to M’s.”

Don’t look at the whole staircase. Just look at the first step.

I’m sure I’d heard that before but it wasn’t until a week or two later that a motivational speaker I was watching used that phrase. I had put it into practice without naming it, and to my amazement and delight, it worked. Just like all the times I folded Maddie’s writing assignment page in half so it didn’t look so scary. “Just do a Maddie-sized essay,” I’d say. Just one small step at a time.

We had our quick lunch (delicious and fun!), drove north to the movie (love those Dragon movies!) and it was an easy and welcome third step to drive further north to see her cousin. She was happy to be there and, as expected, she had a wonderful time.

I patted myself on the back or a job well done. But not because I won a battle. It was because I used one or two of my gifts at the right time to look at my daughter and see what she needed. Just a peek at the first step!

Nailed it.

The Brave Speak for Those Who Can’t

A friend recently asked me for advice. She has a family member whose toddler shows signs of autism. Knowing the importance and impact of early intervention, she  wants desperately to say something to the parents and suggest their child be assessed. She also has experience as an educator and parent that helps inform her suspicions. So, let’s say she brings up this tough issue and the parents take offense.  Based on what she told me, that’s not an unlikely response.

Does she risk upsetting her relationship with the parents to advocate for the child? That’s a tough choice to make, but I think that answer is yes.

Here was my reassurance to her, which I hope she can pass on to her relative:

  1. Getting a diagnosis doesn’t make autism (or whatever it may be) any truer than it is without the diagnosis.  In that moment that word is uttered in reference to a child (or adult), the person hasn’t changed. She is exactly who she was the moment before.
  2. One gift of the diagnosis is a life-changing light suddenly shone on your child. Many of the questions you may have had are quite suddenly answered. Not all of the questions, of course, because each child (on the spectrum or not) is a unique individual. But you can begin the process of understanding your child in a new way, enabling you to parent them with newfound empathy and patience.
  3. Another gift – and I cannot stress this enough – is that services become more readily available to you. Since Maddie was not diagnosed until around age 10, she struggled through elementary school as the teachers and staff struggled to understand her. And then, magically, we had the word “Asperger’s” to throw around and suddenly Maddie was less of an enigma despite having not changed a bit. Was everything magically solved at that point? Certainly not, but instead of just being the smart, stubborn kid who refused to perform, or the weird kid who repeated the word “paperclip” over and over until she was eventually sent outside the classroom, or the kid who would hide during school hours, throwing the staff into a frenzy, she became a more sympathetic person who deserved compassion and help. It makes me so sad to think about the years she was misunderstood and therefore mistreated.

I was recently talking with a friend in her 40s who has chosen not to have children. If she ever changed her mind, she said, she would want to go right into the teenage years, skipping right past all the noise and messiness that comes with babies and young children. We agreed adopting an older child is fraught with uncertainty, but then I pointed out that even when you have a baby, it’s still a roll of the dice. Your child might become an Oscar-winning actress, or a homeless addict, or a high school valedictorian who goes on to solve world poverty or goes to jail for insider training. Or she might have autism. Or some combination of those things.

Certainly the dreams of an expectant couple do not include addiction or a prison sentence. Or autism (to be clear, I’m not equating autism to either of those things). And yet a diagnosis of autism is an increasingly likely outcome of an assessment. Awareness and the ability to diagnose autism have improved dramatically over the last decade or two, but depending upon the trajectory of a child’s development, and depending upon their gender (boys are more likely than girls to get an early diagnosis), a chid may still go for years without getting a diagnosis and therefore the appropriate help. I know because that’s what happened to us. So many years of pain and frustration and confusion could have been avoided. There are so many things I would have approached differently if only I had better understood the daughter I so desperately wanted to know.

For my entire life deep in my soul I have believed in speaking up for those who cannot speak for themselves. If anybody qualifies for that, it’s a young child with autism. It might take some real courage to speak the words, “Have you thought about having Reilly assessed?” Or “I’ve heard of some services that might benefit Sophia.” But remember, you might be the only person to utter the magic words that eventually open the door to early intervention, a deeper understanding of that child, and continued services throughout that child’s educational experience and beyond.

If you know a family who needs help navigating this special realm of parenting, or who hasn’t dared consider autism or a learning difference a possibility, look into yourself and see if you can find the courage to speak up as an advocate for that child. A gentle observation or suggestion, or a connection to a free assessment, could change the lives of the whole family forever.

Be brave. Speak up with love and compassion. And know in your heart you’re doing the right thing.

And even if you can’t, I still love you.