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! ;)

When your worst fears become reality

I love Nick for exactly who he is. As Shakespeare says, "Love is not love / Which alters when it alteration finds / Or bends with the remover to remove / O no! It is an ever-fixed mark." Autism does not alter my love for him, and I do not wish to remove any of who he is. I accept him for exactly who he is: a beautiful, joyful little boy who doesn't have many words to communicate with me.

My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?

What if someone hurt him?

Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.

For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.

Instead she told me that it was an adult who had done wrong.

It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.

And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.

I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.

Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.

He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.

The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.

The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?

How many traumas have been unspoken?

The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.

My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.

There's nothing worse than that.

Airplane Love

It's funny how the little things can change the world for a kid, especially a kid with autism.

Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.

And then, last month, something new came into his world.

It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.

It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.

All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."

The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.

But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.

This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.

Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.

It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.

Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.

The beauty of loss--there is so much to gain from it.

Good Things Come in Small Packages

Sorting the boys' clothes to put them away is the hardest part of my laundry rountine.

The shorts are the worst to figure out. Looking at the tags doesn't help much--a 5 could belong to either Noah or Nick, depending on how tight or loose the waist is.

Noah is nine and Nick is six, but their clothes are nearly the same size.

Noah has been slowly dipping down on the growth chart over the past several years. As an infant, he was right at the 50th percentile--absolutely average--but now, at nine, he's in the 1st percentile--absolutely tiny.

The percentile isn't so important so long as it's consistent. If you start out at the 10th percentile and then stay there throughout childhood, you're good. But if your growth curve dips, that means something is wrong.

Noah's bone age scan shows that his bones have only developed to the age of a six year old. He got into an argument at school yesterday because some kid thought he was a first-grader. He's the size of a first-grader. But he's in fourth grade.

Noah's classmates are feet taller than he is, and Noah only has a couple of inches on his baby brother. That he is four years older than.

Obviously his body isn't properly producing growth hormones. So what do we do? Wait. And wait. The first appointment we could get to see a pediatric endocrinologist is the end of January. Gotta love the doctor shortage in this town.

Hopefully Nick won't surpass Noah's height in that long wait. And hopefully Noah won't beat up too many kids for thinking him a first grader.

The Girl of 1000 Husbands

My neighbor thought I was Mrs. Robinson.

I mean, there I was, taking a walk through the neighborhood with a seriously talk and dark 21-year-old and my two kids. The neighbor was, sans leash, taking his tiny little terrier (which looks like a puppy but is actually twelve) on an evening walk as he approached the four of us. Usually when we're on walks and encounter the duo, Noah and the dog spend a lot of time playing together, but this evening was different. My neighbor saw the young college junior and I speaking to each other in hushed tones and said, uncomfortably, "I'm sorry to interrupt," and scurried away.

Then there was that other time when I was at McDonalds with my kids and a different man, an older man, and a few days later a teenager who worked there said to me, "I saw you this week," with a subtle tone that she'd caught me cheating.

Ah yes, to the people who don't live in Autism Land, I'm the freaky girl who's always with a different man.

My boys have habilitation therapists who work with them on lifeskills in both the home and the community. Nicholas has 25 hours of habilitation a week, and Noah has 15. That means there are a lot of habilitators in and out of my house in a given week. And since Noah is nine years old--an age when it is totally not cool to have girls hanging around--all of his habilitators are male. The habilitator who has most of Nick's hours and has been with our family longer than anyone is also male.

Nick has goals in his program that require him to practice things like ordering at a fast food restaurant ("chicken and fries and co-o-ke," he always says). Noah's program is filled with social goals, learning how to interact and play with peers. So, of course, the habilitators and I are out in the community with the boys a lot.

On the evening my neighbor freaked about my young companion (which, eww--not only are college students gross, but as a short girl I find super tall guys even grosser), the habilitator and I had taken the boys on a walk; the walk, of course, was just a cover for working a habilitation goal because we knew the neighborhood boys would be around the corner playing. We casually walked near where the kids were playing and Noah asked, "Can I play with them?" Of course! We gave Noah his space--it's so not cool to have grown-ups hovering over play when you are nine--and kept walking along with Nick, making sure we stayed in eye-shot and ear-shot just in case we needed to intervene.

Which, unfortunately, we did. One of the older kids was being a little mean to Noah and refused to share the toy guns with him; Noah responded like a kid with autism would. It was ugly and I got tears in my eyes watching my son, who longs to play with the other kids, get his feelings hurt yet again.

But I didn't let Noah see those tears. Instead, the habilitator and I helped Noah walk through and talk through his hurt, and, while Noah was distracted with the sight of the little dog, we took a second to whisper a few things to each other about the situation out of Noah's hearing.

LOL, I guess they seemed like intimate whispers.

I enjoy the irony of it, the presumption that I am doing something dirty, when the truth is the furthest thing from that. Yes, there are men who show up at my house throughout the day, men who you might just see me with at McDonalds. But if you only stopped to eavesdrop on me and these men, you might hear us talking about . . . children's bowel movements. PECS cards. Stims. IEP goals.

And that's about as un-Mrs. Robinson as you can get ;)

This is how you know that I love you

I spent my weekend in my pajamas, curled up on my bed with the sixty papers I HAD TO grade before Monday. I graded until my eyes didn’t seem to work anymore late Sunday night, wanting to push through the last fifteen papers but not able to decode a single sentence. I was exhausted; I needed to sleep . . . but my brain was so wired from the grading marathon that sleep was hard to find.

Two hours of sleep and it was time to get Noah up for school. Breakfast ready, lunch packed, child dressed, and finally we were ready to walk out the door to the bus stop. I opened the door, and that’s when Noah said it. “My stomach sorta doesn’t feel so good.” Oh no.

I quickly jumped into triage mode—no fever, no vomit. Noah and I decided that he’ll give school a try.

We blew kisses to each other through the bus window, and then I went back into the house, so torn about how I would spend whatever little bit of time I had before Nick woke up. There are fifteen papers left to grade, and I HAD TO have them finished today. But I also had to drive to Tempe and back and didn’t want the police to find my car in a cotton field after I fell asleep behind the wheel.

I climbed into bed.

An hour later a phone call woke me up. It was Noah’s teacher. He was unusually quiet—believe me, this is notable thing—and had complained about his stomach not feeling well. “He doesn’t have a fever, though. I figured I’d keep him here as long as I could and I’ll call you if it seems he needs to go home. Are you in Phoenix today?”

I told her that I would be up there later and that today was a Dad day—I made sure she had his number in case Noah needed to come home.

Nick woke up and it was time to get medicines and breakfast in him. This is not as easy as it sounds. At some point I found five minutes to jump in and out of the shower. I got dressed, then tried to throw some clothes on moving target Nick. That’s when my cell phone rang.

“The school nurse just called me. Noah’s there and doesn’t feel well. Could you call her and see if he needs to come home? Here’s her number.”

So much for it being a Dad day.

I somehow managed to get clothes on Nick and get him into the car, but it took some creativity. His obsession of the moment is Goldfish crackers—he wanders around the house saying “Goldfeesh!” all the time—and he didn’t want to leave the house and crackers behind. Tupperware, thank you. Nick, the goldfish, and I went to the health office to retrieve Noah. Apparently, that day was the first time the nurse had bothered to read his health card because she peppered me with questions. “He has seizures? Are they grand mal? What do we need to do if he has a seizure at school?”

Back to the house and I got myself ready for school and Nick ready for kindergarten. I put Nick on his bus right as a van pulled up and it became a Dad day after all. I kissed Noah goodbye and jumped in the car for my hour and a half drive to work.

I got to ASU thirty minutes before class started. SO not enough time to finish the fifteen papers I HAD TO have finished today. But at least it’s enough time for me to read the essay I’d assigned to my students for that day.

I taught four classes back to back, stopping at the vending machine to get a bag of Cheetos for lunch at around 3:15. I ate the Cheetos as I taught my 3:30 class about the changing modes of writing in the Web 2.0 world.

7:45 came and I was done teaching. I’m supposed to stay for office hours, but I was so tired. I got some Jack in the Box and drove back to Tucson.

There’s so much to do when I get home. There are still those fifteen papers that I HAVE TO get done before Wednesday. Really. It’s been over a month. I have to finish these papers.

But instead I looked over Noah’s lab results, which had just arrived in the mail. They were awful. Awful awful. I renewed my hate of autism and plotted to figure out how the hell I could reduce the toxic levels of lead, cadmium, and arsenic in his bloodstream, how I could increase all the good minerals he was deficient in.

The papers would have to wait—I needed to sleep. I took some melatonin and thanked the universe that I was going to get some rest.

At 1:38 AM Nick came into my room, with that boundless, frenetic energy that autism brings in the middle of the night. I re-renewed my hate of autism.

A little after 6 AM I finally got Nick back to sleep. I drifted off to sleep myself just as my alarm went off—it was time to get Noah ready for school.

The rest of the week will be just as chaotic. An ISP meeting, an IEP meeting, an OT session, a follow-up appointment with Noah’s autism specialist, an MRI that Noah will need to be put under for . . . and all the post-anesthesia vomiting that I’ve learned to expect with my boys. Somewhere mixed in will be teaching and lesson planning, and maybe even perhaps grading. Maybe.

This is how you know I love you: in the midst of all of that, I made time for you. It wasn’t as much time as I wish it could be—the people I love deserve so much more—but I deliberately carved it from the chaos for you because you matter. There was that text message I sent you, the encouraging note I left on your wall, the phone call where I strained as hard as I could to hear you over the squealing children beside me, the beer we grabbed, the lunch we worked to reschedule for the fifth time because our schedules are so nutty.

All of those were deliberate choices I made because you matter so much to me—and I realized I just don’t say that enough.