Seven

Today my baby is seven.

The number is hard one.

Developmentally, Beh is two. When people ask me how old he is, my impulse is to say "two." Because it feels like he made it to two just fine but that when he made it there time started slowing down, turning days into years. He's growing and learning, but it's in slower motion.

For the most part, people didn't realize that he was all that different from other two-year-olds. He was small enough that my four, five, six-year-old two-year-old blended in with the other kids his age.

But seven--it's such a big number.

When kids hit seven, they aren't so interested in watching Sprout, playing with Thomas trains, and singing the ABCs. When kids hit seven, they start to drift off with their friends, mom watching from a distance instead of hovering.

When kids hit seven, kids who don't act like other seven-year-olds are labeled as "different."

I saw it with Noah. When he hit seven, all of the sudden other kids started to realize that he wasn't like them. That innocent ignorance of difference began to fade, replaced by the knowledge that one of these kids was not like the others.

Nick is seven. His life is about to change.

Treasure Days

I know that these are common moments for most parents, but they are the ones that leave me in awe.

Beh has been so happy all winter break. Indescribably so. It's like he's beaming rays of joy. Laughing, singing all day. Even yesterday when I had to take him with me to pick up my new glasses, he was happy. I'd really hoped that I wouldn't have to have him with me, but alas there was no such respite. To be honest, I got tears in my eyes when I realized that I'd have to bring him with me because I feared the worst. On outings like this I find myself chanting a prayer in my head over and over as I drive along, "Please stay calm, please stay calm, please stay calm." New places are often traumatic for Beh, and I never know how he's going to react.

He reacted, well, just like any other six-year-old. He didn't have a meltdown; he just got a little squirrelly after a few minutes.

It's not only that he's been happy; he's also been understanding me when I talk to him. I ask him to get his shoes and put them on . . . and he does. Last night I asked him to finish the game he was playing on my iphone so he could go to bed . . . and he finished the last two moves then stood up and walked to his room, then crawled under his blankets.

In stunned amazement, I kept turning to Joe for the next hour and saying, "Did you see that? He went right to bed!"

It's such a simple thing to have a child go to bed when you ask him to, something that I'm sure a lot of parents take for granted. But for Beh, this is giant. Giant.

And just now I walked into his room . . . to find him making his bed.

This is Nick's winter break pattern--he thrives during these downtimes. Two years ago it was during winter break that he figured out how to use words. I know that school will start again next week and that Beh will be mentally taxed. He'll be in a state of sensory overload by the time he gets home and won't be able to process all that I say to him. I know that the joy exuding from him now will be replaced by exhaustion.

So I'm treasuring up in my heart all of these moments of awe. And trying to stop myself from scooping him up in big hugs every five minutes and telling him how grateful I am for these moments (boys don't want moms to interrupt their play that much, after all).

The Other Brother

I've always been the little sister. I've never had a younger sibling to deal with, especially not one with a developmental delay, so I can't fully understand exactly how Noah feels as Nick's big brother.

Not only does Noah have his own milder autism (and all the struggles that come with that) to manage, he also has his brother's autism to manage. He doesn't get the brother he always wanted who would play video games with him and share a room with him. What he does get is extra responsibility. I try to limit it, I do. But sometimes, when you're in line at Papa Murphy's and Nick melts down, you just gotta give Noah $20 and ask him to get the pizza. When it's a choice between not letting Noah get the pizza he really, really wants and asking him to be in charge of paying for it, I choose the pizza because I don't want Noah to lose out on anything because of his brother.

That's my goal--I want to do all I can to make sure Noah doesn't miss out on anything because of his brother.

Sometimes, though, there is nothing I can do.

One of the habilitation therapists who was working with Noah quit on him, three hours before her next scheduled shift, because she was afraid of Nick.

I'll let you take a moment to process that. A therapist whose job it is to work with kids with autism was afraid to work with one of my autistic children because the other had her scared.

The whole idea that Nick is someone to be afraid of pisses me off to no end, so let's not even address that for now. That's way too much Momma Bear for one blog post.

Think about what it was like for Noah. He spent all this time building a relationship with someone . . . and then she disappeared. Without warning, which sucks for a kid with autism who craves consistency. Without so much as an explanation or a goodbye, which sucks for, well, any kid who has someone they care about leave their life.

Yesterday he was asking for her because it was a day when she'd normally come to work with him. What do you say to spare a child's heart? Not the truth. Because he'd either resent his brother, or the therapist who bailed on him with not so much as goodbye . . . or both.

It's a no win.

I wish I could put a bubble around my boys to protect them from the world's misunderstanding of autism. In that bubble, no one would ever look at Nick like he was a monster, no one would bail on Noah or Nick and disrupt their consistency and routine. There's no such bubble, though, so all I can do is protect them as much as I can and buffer the blows when they come.

Another Blog on Why Moving Is the Best Thing I've Ever Done

Today was the fifth grade awards assembly for the first quarter. Noah came home with an award for the most improved student of the quarter.

School has always been a nightmare for Noah. Imagine being a kid with autism and ADHD and trying to survive in a general-ed classroom of 35 students with little to no support. There were some fantastic people along the way who did their best for Noah, but with the administration limiting what supports they would give to Noah, there was little these fantastic people could do. Finally, in fourth grade, Noah got to have an aide with him for a little bit of the day (a battle I'd fought for three years), and the time she spent with Noah increased throughout the year. But it wasn't enough. Noah was falling more and more behind, getting more and more frustrated.

Then we moved and Noah found himself in a school with a different way of looking at difference: their strategy was to give students as much support as they needed from the start and help them become less dependent on those supports as they gained the skills to thrive in general education. Shocking, I know.

And so Noah started off his school year in a classroom with just five other students and staffed by a teacher and two aides. [I just heard a bunch of jaws drop. The stuff of fairy tales, right?]

Noah had a rather difficult start to the year as he tested boundaries and learned that they weren't as flexible as the boundaries he was accustomed to. After all, with thirty-something children in his previous classes, he was able to get away with not doing much at all. But here he was expected to actually work and follow the rules and be responsible.

Once he figured out the structure, he thrived. He started attending P.E., music, and art with a mainstream fifth-grade class. He won a Distinguished Dolphin award and got to eat lunch with the principal. And, now, the Star Student award . . . he's thriving.

Noah's teacher is thrilled about his progress and has arranged for Noah to start Junior Achievement with his general education peers. "I love to reward good behavior," she said, "and it is always my goal that my students rejoin their general education peers when they are ready. I think Noah is ready!"

He is ready. He's already made friends in the class he'll be mainstreaming into so there will be friendly faces to greet him when he begins Junior Achievement on Thursday. And then, as Noah is successful in general education, he'll spend more and more time with his fifth-grade class.

Five years of struggling and fighting and trying to get Noah the education he needed. Five long years of Noah living in misery. In just nine weeks, though, Noah has become a child who jumps in excitement, beaming the brightest of smiles when he gets off the bus because he had a fantastic day and feels proud of what he accomplished. Most days when I see that smile of pride I have to fight back tears--it's a smile I've always know was there and have been waiting so, so long for.

And that's another reason why moving is the best thing I've ever done.

Sleeveless

Today Nick got to have two speech therapists instead of one. The guest therapist, who owns the clinic, came out of the room first. "He had a just phenomena session. He is so adorable--such a calm and peaceful spirit."

Laura, our regular SP, followed with Nick a moment later. "I can see why you say people fall in love with him. He's such a joy."

They were seeing the Nick I see, the Nick so many people have, unfortunately, missed out on.

*********

Last year, in the aftermath of the teacher-abuse incident, the school started sending home daily reports on Nick's day. The forms listed out what he ate, how he focused, when he went to the bathroom . . . and how he behaved. The school tracked every scream, every bite, every scratch, and every time he hurt himself with tick marks on the page. Every day the tick marks were sent home, with comments like "He threw himself to the floor and screamed for no reason" (grr, there is *always* a reason) or "Nick got very upset when we tried to bring him into the classroom and scratched an aide." Perhaps I would've scratched people when they tried to take me back into places where I'd been hurt, too.

But here are some of the notes from Nick's teacher this year:

8/12: "He was very happy and smiling."

8/16: "Good day today. He transitioned well."

8/17: "Good day! Nicholas transitioned very well."

8/18: "Nicholas had a great day today! He is really starting to understand the routine of the day. He is participating in calendar and has done well during math and reading."

8/22: "Nicholas had a great day today. He is doing great during transitions, is smiling more, and participating more as well."

8/23: "Nicholas had a good day today. Did well with transitions today :)"

8/24: "Nicholas had a really good day again today! Nicholas has been doing so well transitioning. He is participating every day at calendar and is doing work at math and writing time. He is still really enjoying tinker toys and playing in the sand."

8/25: "Nicholas had another great day today! He is talking more and seems very happy at school."

He seems very happy at school. That's a sentence I'd never seen, never thought was imaginable.

*********

The proof, though, is in the pudding . . . otherwise known as the squishy part of my arm. It's where Nick takes out all of his frustrations, all of his confusions, all of his fears. When the world has him freaking out, he needs an immediate outlet for all the tension inside, and that outlet is often in the form of an ungodly sharp pinch. My arms were a watercolor of purple, green, magenta, blue.

On the first day of the semester I prepped for it, as always. I pulled together an outfit that would've made Stacey and Clinton proud--fantastic black heels, stylish grey trousers with red and light grey pinstripes, a delightful ruffled red blouse, and of course, a jacket--a grey Anne Klein blazer that I got for under $20! As I drove to campus, I wondered about how often I'd have to take the blazer on and off to get through the day. I mean, my classrooms were in different buildings on campus, and I didn't think I'd want to wear a jacket outside in the 113-degree heat, and some of the classrooms have crappy AC . . .

I looked down to check the damage to see if it was mild enough that a little concealer could mask it if I had to go jacketless during a class, and I was shocked.

There wasn't a bruise. Anywhere.

Sometimes as parents our guts tell us exactly what we need to do for our children, and although something inside us knows, absolutely knows it's the best thing, our minds tend to come in with their sneaking suspicions--what if uprooting the boys is the wrong thing to do? what if this new city won't be as wonderful as I think it will be? But always, it seems, we find in the end that our gut was right all along.

Moving the boys to Phoenix is the best thing I've ever done for them. They are happy, successful, content in ways they never have been before. That's not to say that they don't have bad days--believe me, there have been a couple--but the good is so much better that it has ever been and the bad is dramatically less frequent.

Finally, the world gets to know the happy, sweet Nick I know . . . and I get to go sleeveless to work ;)

The Waiting Room, Redux

Once again we find ourselves in a waiting room. This time we're at the allergist--with the boys out of school and camp and no respite services set up yet in our new city, they have no choice but to come with me for my weekly injections. It's a lot of waiting. I wait to be called, and after my shot I wait 30 minutes before they call me back again to make sure I'm not having a negative reaction to the shot.

As always, I bring my mommy bag of tricks to entertain the boys. For Noah, it's books and markers and drawing paper and Hero Factory creations. For Nick, it's a laptop and a horde of Thomas videos.

We claim our seats--the ones right by the outlet so that the laptop stays juiced--and settle in for a long summer's wait.

While Noah plays with his heroes and Nick watches Thomas Sing-a-long Songs, a mother and her two sons step in the door. The mother takes a seat across the waiting room from us but her older son, wearing crooked glasses and shaggy blonde hair, notices Nick's video playing and is absolutely mesmerized. He wanders over to us and his younger brother soon follows. The mother, nervous, immediately calls out to her sons to come sit with her, but they don't seem to hear.

The boys sit down on the floor next to Nick's stroller and the older boy, struggling to enunciate the words but eager to voice them, begins peppering me with questions. What is he watching? Why is there smoke coming out of the train? Why is he in a stroller? Why is that train sad? His younger brother joins in with a few questions of his own. What is his name? Can you get Club Penguin on that? What is he doing with his hands?

Their mother stands nearby in the watchful hover-stance I know so well, at the ready for whatever may come. It is the Autism Stance, the one all of us autism moms have perfected. We never know what might happen, so we stand prepared for everything.

As the boys chat with Noah and me, we learn that the older boy is 14 and the younger is 5. The older boy's autism is more pronounced (his speech is at about the level of a typical four year old), but the younger boy has some severe sensory sensitivities; when his brother lightly touches his stomach, he shrieks as if he's been stabbed. His mother scoops in and promptly redirects him.

I know I've complained about children in waiting rooms before, but these children absolutely delighted me. I loved their inquisitiveness, their eagerness.

The mother and her boys are ready to leave before my after-shot wait is over. As she shepherds them toward the door, she stops and turns to me. "Thank you for being so nice to them," she says with eyes that reflect both gratefulness and tears.

"Of course!" I respond, and wave an enthusiastic goodbye to the boys.

As the glass door close behind them, I realize that she probably had no clue that I was another mother who lived the Autism Stance. I mean, Nick was so engaged in his video and Noah was so engaged in his toys that they didn't seem very autistic today. The boys themselves may have noticed Nick's autism (asking what he was doing with his hands when he was stimming), but the mother was so focused on her children that I don't think she saw it.

If she'd been there last week as we sat in the waiting room, she would've seen the autism. I mean, the woman sitting right next to me that day did, and she made a loud production of moving herself and her daughter far away to the other side of the waiting room when the autism seeped out.

That's why the mother of those boys had tears in her eyes. She'd undoubtedly experienced 14 years of people moving away from her children, as if their autism was a communicable leprosy. But here was this one person today being nice to her kids, sharing her son's DVD and smiling as she answered their questions . . . and my eyes filled with the tears that her eyes held when she left the office.

Don't Worry: The Blog Lives!

So many of you have been asking about why I haven't posted and when I will post again. Moving has sapped up my time and my creativity, thus the lack of posts. But things are returning to normalcy (whatever that is in autism world) so I should be posting again soon!