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!

Ain't Talking 'Bout Love

My pet peeve today: love.

Not the concept of love--that I like--but the word love, used too loosely.

Autism means dozens upon dozens of people moving in and out of your children's lives. OT, SLP, PT, hab . . . these service providers waltz in and out, an never-ending revolving door of service. They move away, they take new jobs, they go to graduate school. In and out, in and out. Longfellow's tide rising and falling for an eternity.

What bothers me, though, is when these service providers claim to love my children.

Of all the people who have made their way in and out, there are only two who I can say really loved my children (John and Allie). My kids weren't just a job to them; my kids were in their hearts. They didn't just disappear when the job was done; they still keep up to date on them. Allie comes by during her breaks from med school, armed with presents for the boys and immense love.

But the rest, they aren't the type to keep in touch when the job is over. They move on, and the kids are just a distant memory to them.

Which is okay. I mean, they are professionals and many of them maintain a professional distance, which actually makes some of them better at their jobs.

The people who bug me, though, are the ones who claim to love my children, when they really don't.

"I love your kids so much." "The boys are like family to me." "I love your kids with all my heart."

Which is, well, bullshit.

Love is an ever-fixed mark, Shakespeare tells us. It doesn't quit when you get called out on falsifying data, it doesn't quit when something gets annoying. Love is staying up 'til 3AM when a child can't stop stimming. Love is taking scratches and bites and bruises from a child with autism and returning those with a hug. Love perseveres through the ugliness and difficulties. Love doesn't quit when things get uncomfortable.

I'm okay with people not loving my children, though I think they deserve love. What I'm not okay with is people saying they love them when they don't. I'm not okay with people telling my children they love them when they don't. Because, well, my kids will believe it. Their autism doesn't let them see through lies; they take what they hear as truth.

You know, only to get their hearts broken when the person bails.

They deserve better than having adults who should know better break their hearts.

So don't use the word love if you don't really mean it. Certainly not with my children.

The Weighting Room

We spend our lives in waiting rooms. Autism as brought us occupational therapy waiting rooms, speech therapy waiting rooms, music therapy waiting rooms, neurology waiting rooms, endocrinology waiting rooms, developmental pediatric waiting rooms, behavioral health waiting rooms . . . oh, and then there's the regular waiting rooms most kids visit, like pediatric waiting rooms and dental waiting rooms.

I think this must've been what Prufrock felt like when he lamented that he'd measured out his life in coffee spoons, but in my case I've measured out my life in stacks of waiting room Legos that probably have germs from a thousand kids.

I hate waiting rooms. It's not just because I've inherited my dad's impatience for waiting, though. I hate the kids. Not mine; other people's.

It sounds terrible to hate the kids, I know. But, see, waiting room entertainment is a laborious science for me because I'm always trying to think ahead of autism. Noah and Beh both have their waiting room tote bags, packed with Plan A, Plan B, Plan C, Plan D, and Plan E to keep them contented. In the event Beh is no longer entertained by his goody bag, I switch over to working to get him interested in the assorted waiting room toys lying around. I know that if he isn't engaged in something that he'll start to stim, and his favorite stim right now is turning light switches on and off, which isn't really socially-acceptable behavior in waiting rooms. I'm working hard in the waiting room . . . and often other parents aren't. They get lost in their magazines and cell phones, and inevitably their children, who are bored and lonely, start talking to me, wanting to play with me. And I'm working; I don't want to be interrupted.

On Tuesday we went to the dentist. Noah was happily entranced by the movie playing in the lobby, so I focused all my song and dance on Beh. I entertained him with the waiting room toys. First we labeled all the plastic foods (he named them all, well, except for the tomato that he called an apple, but I'll give him that one). Then we played with nesting blocks, then nesting eggs, then ABC blocks.

Next to us was a little boy playing at the ubiquitous waiting room feature--the magnet table where kids can move objects through sand by moving a magnet on a string underneath the table. He was about four, toe-headed, and mohawked. There wasn't a parent in sight. Of course he started talking to me. He had cavities, he told me. His dad got angry at him about his cavities, apparently. Then he started trying to nose into everything that Beh and I were doing. Which, when you've got a child with severe autism who doesn't understand the concept of "share," doesn't work well. Mohawk boy kept talking and talking and talking, and I silently prayed that the hygienist would call him in next.

Then a little girl came along to join in at the magnet table. She'd just finished her appointment and her mother had left her in the lobby as she took a bathroom break. She couldn't have been three, a tiny little girl, toe-headed too, and pig-tailed. As she sat at the table, she started talking, in the most adorable little girl voice: "Sugar makes me fat and ugly and no one will love me no more."

Mohawk boy said nothing, and neither did I, too astounded to speak. Here was this tiny little girl, far too young to even be left alone in a waiting room, rehearsing the most horrific of scripts. Teen-aged girls are bombarded by it, that pressure to be perfect and beautiful because they fallaciously believe it to be equated with love . . . but here was this toddler, far too young to read teen magazines or watch Gossip Girl, reciting a horrible ideology that will likely damage both her spirit and body. She should be playing in sandboxes, not worrying about her weight.

How many times had she heard her mother say it if it was so ingrained in her that she spoke it to strangers in a waiting room?

Her mother exited the bathroom, and I noticed her twice-a-week tanning-bed-visit bronzed skin and her hair, dyed blonde to match her daughter's. I found myself wanting to put my foot out to trip her as she walked by . . .

I hate waiting rooms. Hate them.

The Photograph

I needed a picture of the chumba cat. Beh's kindergarten class is studying animals right now, and the teacher asked for us to send in pictures of our family pets.

I figured Noah's photo album was the best place to look for pictures of the cat, so I went into his room, pulled his album off his bookshelf, and opened it.

A scattering of pictures that he'd never put into the album were stuck in the front. The picture on top was of Beh.

The second I saw it I started to cry.

The picture dated back to the B.A. (Before Autism) era. There Beh was, about eleven months old in an adorable blue and red striped baseball outfit, standing in the kitchen. He looked right into the camera, smile beaming.

He was looking at the camera, smiling.

He doesn't do that anymore.

Now I chase him around for half an hour, snapping picture after picture, hoping to get one where he happens to be looking up. Such a picture is rare.

I'd forgotten that there was a life before autism, a Beh before autism, until that picture reminded me.

For a year a had Beh. All of him. Unclouded by autism. For a year I did.

I'm so thankful for that year, but I wish then that I'd known it was going to be the only one we'd have before autism came in with its ice storms. I would have spent less time striving for perfection in my graduate courses; actually, I would have dropped out of school completely. I would have spent more time sitting on the floor with Beh, playing with stuffed animals. I would have spent more time playing peek-a-boo. I would have spent more time staring into Beh's eyes if I'd know we'd spend the next five years trying to re-teach him to make eye contact. I would have told Beh a million times a day when he could hear me, I mean really hear me, that I love him.

I miss him. I accept him for everything that he is without waiver, but I miss the boy who didn't have to struggle every day to climb over the wall of autism.

A Tough Mom Day

Nick has come so far in the past three, almost four, years since he was diagnosed with autism. He went from not being able to communicate at all, to communicating with PECS cards, to finally using words. He went from not seeing me at all to staring into my eyes. He went from not wanting to be with others at all to wanting to snuggle with me all the time. He's a different person than he was when he got diagnosed. He's in our world now instead of lost in his own.

And I'm so freakin' proud of him. If you've read this blog, you've seen it. Every little step is a giant triumph. My beautiful boy is struggling through something more daunting than I can fathom, and he's persevering. To be five years old and have to work so hard all the time, to have your mom carting you to therapists, to have other therapists showing up at your house . . . it's so much to ask of a child. But he does it. For about forty hours a week, he does it.

All the time I'm focusing on how far Nick's come rather than how far behind he is. Well, almost all the time. Every now and then something intrudes and reminds me of how far we have to go . . .

Today I got back the results of Nick's most recent speech evaluation. I was really looking forward to the numbers because I wanted to see quantified just how far I *knew* he'd come. On his last eval three years ago, most of his scores where in the 6-9 month range. That was when he was two. He's worked so hard and grown so much; I knew he'd jumped far beyond that. I just knew it.

I read the black letters on the blinding white screen:

Interaction-Attachment: 15-18 months

Pragmatics: 18-21 months

Gesture: 18-21 months

Play: 18-21 months

Language Expression: 12-15 months

Language Comprehension: 12-15 months

I know they are just numbers. I know. I know that numbers cannot accurately represent the awesomeness of my child. I know. But to see my almost six year old labeled as being at the level of a one year old . . .

I just sobbed. That's all I could do.

The last part of the report, though, was worse than those cruel numbers.

Nick's issues are too severe. The speech therapist doesn't want to take him on as a client because his autism is too severe.

God, I hate this town. I hate that I live somewhere where there is such a shortage of speech therapists that they can pick and choose who they want to work with, and they pick and choose the easy clients. I hate that the children who need therapy the most are unlikely to get it. It seems so unfair and cruel that a beautiful boy who is working so incredibly hard hasn't had a speech therapist for six months because of the shortage, and when we finally found someone who had a couple openings in her schedule, she didn't want to take him on because he was too much of a challenge.

It's a tough mom day today. I feel adrift, nothing to cling onto. I think the numbers, as hard as they were to read, would have been tolerable if I knew I could get speech services to help Nick work on his delays. It's just hard knowing that he's struggling so much . . . and there's no therapist who wants to step in and help him.

So I'll sob a little more today. And then tomorrow, the sun will rise again, and I'll put on my big pants and make a new plan for Nick. I'll keep him moving and growing; I promise him I will.