Five Beautiful Words

The first time Maddie said anything (okay, the second, after the “light” incident), she said “Mama.” It was a long time coming, so even though all moms cherish the moment their child says that magic word, it was especially sweet for me. Twenty-five months of waiting and working finally paid off.

And today, Maddie is incredibly articulate. She’s not a huge talker necessarily, but she’s always on point; when she says something, it’s worth your attention.

But today she said something so magical, it was almost as exciting as when she said her first word.

Today’s memorable quote? “I’m gonna take a shower.”

If you’ve been following my blog, you know that personal care has been a huge issue for her. To be more accurate, her lack of personal hygiene has been a problem for me. We’ve had some terrible conflicts over her refusal to bathe herself. I can’t stand the teenage B.O., for one thing. But more than my own sensory torture, I’m concerned with how her failure to keep clean will affect her socially. NOBODY likes a stinky person. Well, maybe other stinky individuals, but we live in a society of good-smelling people who bathe regularly, so greasy hair and smelly pits just don’t do a person who’s already struggling socially any good.

So when she appeared in the kitchen with a towel, her phone, and her bluetooth speaker in hand, I couldn’t even fathom what she was up to. “Whatcha doing?” I asked.

And then she said those beautiful five words, “I’m gonna take a shower.”

When you have a child with delayed development, each minute achievement feels huge. I remember the entire year that followed “Mama.” Each sound was so slow to come. She would try and try to figure out what her lips and tongue were supposed to do to make a new sounds. “Nnnnn,” she would finally say, and it was cause for great celebration. A new sound! Woohoo!

It wasn’t like typical language development, which we often take for granted. Somehow babies absorb everything they hear, and their brains are able to make sense of it all. For Maddie, the words made sense; she just couldn’t move her mouth properly to make the sounds that form the words.

So, “mama” was first. She was 25 months and 2 days old. “Dada” came a little later. And that’s when we started calling her Maddie instead of Madeline. Making sounds was so difficult, and putting them together into a word was nearly impossible, so we thought the least we could do put her own name within reach. At first she referred to herself as “Ma-Da.” I separated those syllables because that’s how it sounded. “Ma. Da.” It wasn’t long before she could say that. What a relief that must have been for her! Instead of pointing to herself, she could actually say her own name!

The way I helped her learn words was really teaching her to read. We spent a lot of time with foam letters in the bath tub. I would stick them on the side of the tub, and we would sound out words. For a long time she said “wot” for water. Adding another syllable was too much. She said “c-at,” and just “hh” for her brother’s name.

By the time she was two and a half, she could read a few words. I would write the names of our two cats on a white board, plus “mom,” “dad,” and her brother’s name. She could identify them with ease. Whether or not she could actually say them was a different story, but by that time she knew the sounds associated with all the letters purely out of necessity. I didn’t set out to teach her to read; it was just a way to practice speaking, and especially combining sounds.

When you have a typical kid, you just can’t fathom the miracle that speech acquisition is. But when you have a kid whose every tiny forward movement is the result of hard work, it suddenly becomes miraculous.

And so it continues. I would bet that if you don’t have a special needs kid, you don’t remember your kid announcing they’re going to take a shower. Big deal. People take showers.

This isn’t the first time she’s ever said that, but it’s such a challenging issue here at our house that even one crisis averted is momentous. Those words might not be magical necessarily, but I feel like a million bucks. I’ve had a hard day. That one moment just made it all better.

And then something else happened. I had put a pot of water on the stove, intending to make pasta for my son. I then went to my room and started to write. Sometimes I lose track of time when I write. I get on a roll and everything else fades into the background. And so it was tonight. About 15 minutes into my session, I remembered the pasta. My son was waiting for it, and he’d been in kind of a bad mood all day. I knew I was going to hear about the delay.

I raced to the kitchen to toss the pasta into the boiling water, and right away I noticed the timer said 5:17 and was descending. Maddie was sitting in the kitchen texting her cousin. I realized she had seen the water boiling and taken the initiative to get the pasta going. For me. For her brother. It wasn’t for her at all. But she was observant enough to notice, and thoughtful enough to do something about it. To her it was no big deal. To me, it means the world. I am raising a good person. All the work I have put into parenting her is paying off.

And she continues to amaze me. Some days are so hard. Sometimes she gets stuck in her own head and can’t see beyond herself and the moment. And other times she is thoughtful and engaged and motivated. Sometimes she announces, “I’m gonna take a shower,” and notices I need help and does something about it.

Those are the breakthroughs. Those are the times I want to hold onto. Those are the things that define the person she really is. And she is awesome.

That Weird Time She Said Something, and Then Nothing

One thing you quickly learn about parenting an Asperger’s kid is you really just never know what they’re going to do. Yesterday I eagerly asked Maddie about her second day at school. The first day was a celebratory kickoff to the school year, without any real classes to attend. Instead there were a couple of inspiring speakers and a barbecue party. So the true experience was delayed (although it certainly says something about a school that it begins the year like that).

I asked Maddie which classes she’d had and which teachers she met. Trying to remember what her schedule was that day, I asked, “Did you meet your math teacher? It’s a woman, right?” Maddie is great at math and has geometry this year. I loved geometry, and I think she will too, so I’m particularly excited about this class for her.

“Well?” she began. “I got confused, and instead of going into room 225 I went into 223.”

Easy fix, right? Notice you’re in the wrong class and excuse yourself and go to the right one.

“I had a funny feeling the whole time because the teacher had a different name.”

“Did you go to the right class?”

“No.”

“Did you talk to the teacher?”

“No.”

“Did she take roll?”

“No.”

I surmised from her short description of events that she wondered for an hour why the teacher in the front of the classroom wasn’t the teacher on her schedule, and upon leaving the room at the end of the period, discovered her mistake. Her solution was to shrug it off for the day and go to the right class next time.

Head slap!

Naturally, I got a call and email from the attendance person. I hope I’ve addressed the issue properly and she doesn’t get an unintended, unexcused absence on her second day.

Maddie is crazy-book-smart, but sometimes her common sense is up in the clouds. And she does something head-slap-worthy.

On the other hand, sometimes she does something equally surprising on the other end of the spectrum. Something extraordinary.

When Maddie was 18 months old and still nowhere near talking, we decided to teach her some sign language to bridge the gap and relieve some of her (and our) frustration. Surely all that screaming was an attempt to communicate the myriad thoughts in her head. She could finally use her hands to do some of the work.

So we bought a book to help us along. We’d look up signs so we could all learn together. After some time, we all knew more than 100 signs. My favorite one was “please,” which involves placing your hand in front of your chest and moving it in a circle. Maddie, in such a Maddie way, gave that sign kind of a shorthand. She would just quickly and casually brush her hand across her chest, as if knowing she had to say please but not willing to put much effort into it. That always cracked me up.

Another sign that was especially important in our lives was the sign for “lights.” Goodness gracious, was Maddie obsessed with lights. I think babies in general find them pretty interesting, but in true Asperger’s form, Maddie’s passion for lights was unsurpassed. Fans were also pretty exciting. We made up our own sign for “light,” kind of a flashing movement with our hands. Open, close, open close, facing forward, hands out. There was a lot of “talk” about lights. If we entered a restaurant and a single light was out in the far corner of the place, I would be immediately informed. Maddie was On It. Lights, lights, lights. Let’s all talk about lights.

So important were lights in our lives that the made-up sign was the first sign we taught Maddie, before we even got the book to help us along. She was still screaming a lot, but at least lights were something she could discuss in a quieter, more socially acceptable manner.

About a month into the sign language experiment, I took Maddie to my parents’ house for a visit. My older sister Becky and her family were living there at the time, so we had a great afternoon with the cousins as well. They all adored Maddie from the beginning and were pretty excited to begin the sign-language journey along with us. Being quite familiar with Maddie’s love of all things lights, Becky was excited to talk to Maddie about them. “How do you say ‘light’?” she asked, looking for the sign we had taught her.

“Light,” said Maddie.

Until that moment, she had only ever screamed. But there we were, Becky and her kids and me, all staring at this up-until-that-moment nonverbal kid. And clear as day, she had said “light.” If I hadn’t been there myself, I never would have believed it. But she had said it.

And then for the next six months, she didn’t say another word or utter another recognizable sound until the day, at 25 months and 2 days of age, when she finally said “mama.” For those six months, there was more screaming, and thankfully, a lot more signing.

Such is life with an Asperger’s child. You brace yourself for the missteps (like the time she entered a neighbor’s house through the dog door, and we don’t even know these people), and rejoice in the beautiful moments you never saw coming.

In this year of hoping, I will try to focus on the rejoicing.