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.

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! ;)

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 ;)

Doctor Day

Today I took Nick for a follow-up with the local DAN! doctor. Mom was very, very smart and brought along The Hab Who Nick Loves. Best. Decision. Ever. He kept Nick happy and entertained the entire time, which meant I actually got to have a conversation with the doc! Amazing. I told him that needs to go everywhere with us from now on.

Our new doc isn't as brilliant as the DAN! we were seeing in Phoenix (and paying three times as much for), but I do like that she's less medically-invasive. For instance, the old doctor's solution to Nick's yeast issues was keeping him on a high dose of Diflucan for months and months, but the new doctor is looking for natural ways to balance the flora in his intestinal track so that the yeast won't grow. I also like that she is always looking for ways to save me money on prescriptions and labs. I guess the old doc was making so much money charging three times as much for an appointment that she didn't think to consider that maybe some of her patients couldn't afford to spend $1000 on a lab test.

So, the newest thing we're going to do--we're going to start chelation. Half of you are thinking, wow, that's a dramatic step. And the other half are thinking, um, what is that? Chelators are organic compounds that latch onto metals. Put chelators into your body, they latch onto the heavy metals, and--VOILA!--you pee them out. (That's my super-scientific explanation.) Nick has dangerously high levels of lead, cadmium, and arsenic in his system, according to his blood tests. These, of course, are neurotoxins, so I'm hoping that if we get them out, Nick's cognitive function will increase.

There are several ways to do chelation, the most drastic of which is IV chelation. Yeah, I'm not doing that to my son, for so many, many reasons. Instead, I opted for suppositories. I'll give him these for three days, then on the third I'll collect his urine, which I'll send off to the lab to see which metals his body is purging.

I'm not sure what I dread more--giving him those suppositories, or trying to collect that urine.

I'll leave you all on that lovely note.