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.

When the right person comes along

Being a habilitation therapist is one of the most challenging, most important jobs in autism world. A hab is in the home, day to day, working on all the most significant skills with a child. While a child might only see a speech therapist or occupational therapist once a week, the hab is there with him or her during every aspect daily life, working on speech skills and daily living skills and school readiness skills and social skills and feeding skills and everything else you could possibly imagine. It's the most important job in autism world.

And, like I said, the most challenging. Not everyone can do it, or do it successfully. We've had around twenty different people in and out of our home. There was the girl who always tried to get me to leave the house during her sessions (um, illegal!). There was the girl who didn't know what a belt was and flashed my son with her g-string. There was the guy who thought the military approach was best and would pin Beh's hands to the table until he "complied." There were a couple of talented people who would've been great if they'd showed up to work consistently, and without tell-tale red eyes.

The toughest situations were the ones where wonderful people who I really liked just weren't wonderful habs. One person was with our family for about a year, and while I loved her and knew she'd do anything for my kids, the chemistry just wasn't right with the boys. Another person I thought would be amazing, and I spent $500 I didn't have to get my consultant to train her (thank you student loans), but she just didn't have the gift.

But there have also been a few really gifted people, the rare treasures in the gravel. And we lost all but one of those gifted people because Nick aged out of early intervention or because they were so awesome they decided to go off to medical school or OT school to become even more awesome.

With all the habilitators who have filtered through our lives, I've never seen anything like this one, though.

She's a young college girl who has never been a habilitator before. Beh is her first and only client. Her only real experience is the time she spent in her mom's classroom over the years, seeing first-hand what life was like in a special needs classroom.

But she has the gift.

Rather than being timid or afraid or looking to me to tell her what to do, she just stepped in and played with Beh just like he was any other kid (which I, of course, think he is, but most other people see the autism first). She was calm and unafraid. The first couple of weeks were challenging as Beh was trying to figure out the relationship, but then it just *happened.* The magic.

She figured out what he loved and used it. He liked Goldfish crackers, so she rewarded him with those. He loved his Thomas the Tank Engine books, so she brought them to the table to work on letter writing. He would happily write J for James and E for Edward.

Whereas most other habs had struggled to get him to do things, all she has to do is speak to him. "Let's go write letters," "Let's go to the potty," and Beh jumps up, following after her.

Today, though, I saw the most amazing thing. After school Beh and his hab have a routine. She gives him a snack, then she takes him to the bathroom, then they do some school readiness skills at his little table. Today he finished his snack and took her hand to lead her to the bathroom.

So many habs have thought of potty training Beh as a battle they couldn't win. But here was Beh, going off to the bathroom--unprompted--taking his habilitator by the hand.

It's so simple, really--you take the time to know and love a kid, and he responds. It's so simple, but it's something that is so hard for most people to figure out.

She's going to head off to OT school someday so that she can work one on one with kids like Beh for the rest of her life, but until then, I'm going to hold on to her. Tight. Don't any of you think of stealing a single hour of her time for your kids! ;)