Christmas Shopping

Last night, my husband and I were sleepily snuggled into our bed. In the dark, we ran through our Christmas purchases aloud. We debated whether or not Garret really needs that RC helicopter. We agreed that there are more than enough Lego sets hidden in the attic, no matter how many sets made the list. And, as we always do, we racked our brains over the question that has stumped us for at least the last six years: "What do we do for Braden?"

Ever since Garret started making a list, we've stressed over the inequity in our Christmas purchases. We always spend more on Garret. Always. It's easy! There is little he doesn't flat out ask for because, blissfully, he's a typical kid. There is little we wouldn't give him if it's in our reach (or even slightly out of our reach). But Braden...that's another story.

I've been asked in countless appointments and meetings, "What does Braden like to do?" Yet no matter how many times I've been asked, I always look like an idiot when I try to answer. "He likes...well, um...he likes to...he likes blocks."

"He likes to build with blocks?"

"No, he likes to line them up. Or carry them around. And markers. He likes markers."

"He likes to draw?"

"God, no. He likes the markers. He likes to have them."

He doesn't really do anything. He runs around the house (or anywhere else we happen to be), usually while humming or screeching. 9 times out of 10, he is tossing something in the air and catching it in an amazing display of hand-eye coordination. On occasion, he'll stop to watch a YouTube clip or watch a commercial. On rare occasion, he'll dance. On even rarer occasion, he'll push around a toy car or stack blocks. But none of that really constitutes a hobby or even a preferred activity.

Which brings us back to Christmas. What do you buy the kid who doesn't want anything? More blocks? More markers? Seriously, the amount that we already have is obscene. But it's Christmas and we have to get him something, and we have to try to keep things fair between the kids. Right?

Or do we...a set of markers, a set of blocks, (a really big) pair of footed pajamas, and a fresh copy of Goodnight Moon will make Braden's day regardless of how many times he's gotten exactly that for Christmas (in fact, now that I think about it, that makes a lot of sense...comfort in routine, right? Christmas is new markers, new blocks, etc. in packages you have to open. Hmm.) No matter how many new and outrageously priced packages Garret has to open, Braden isn't keeping count. No matter what we did or didn't get Braden, he will not be disappointed.

One of the blessings of life with the 'tism, if you choose to embrace it, is that happiness comes from the smallest things (I once did a dance and cheered like I'd won the lottery because Braden threw up in the toilet). There are definite downsides to a life with someone who is oblivious to social norms, but there are also tremendous benefits. Sometimes I think he's the only one in this house who is capable of true, uninhibited joy. And isn't that what Christmas is really about?

Sleeping In

I am openly envious of people who get to "sleep in." Braden rarely does, and if he does it is almost certainly on a school day. On those days, I'm lucky enough to have to drag him out of bed and initiate a title fight.

After years of not seeing eye to eye on whose turn it was to get up with the kids, my husband and I have worked out a schedule. Whatever time the day starts (or more accurately, whatever time B starts the day), I get up on weekdays and one of the two weekend mornings. A little unbalanced, yes, but I am a stay-at-home mom so I've come to agree that it's reasonable that I carry more of the load with the children.

Much of the time, however, he is working on Saturday. So he gets up early and heads to work, and I get up with the boys. Sunday is, of course, his day because he "worked all week." Which he did, and I appreciate. Sleepily.

Why include this marital hot button here? Because the root of why it's an issue is Autism. See, in the average American household children ages 8 and 11 can manage themselves in the house if Mom or Dad need a few extra hours on a Saturday morning. Isn't that why Saturday morning cartoons were created?

But not in this house. For one, B tends to wake up...um...happy. So he's generally running around the house and shrieking from the minute his feet hit the floor. He's throwing toys into the air and watching (and listening) as they crash to the floor. He's smacking walls, windows, and furniture as he runs past. And, his newest addition, he's stomping his foot with all his might. (Got sensory issues?) He's also foraging like an animal readying for winter.

And then there's the other child. He's in the middle of the chaos and at the mercy of his 10" taller, 60-pound heavier brother. No self-respecting mother would leave him in that position (at least not for more than a snooze or two).

So I've become a morning person. Well, I've become a person who is capable of rolling out of bed in the morning and pretending to function. I drink too much coffee, and I sneak a nap when I can when the boys are at school. And I try really hard to not to harbor a grudge for the number of hours my husband spends snuggled up in our bed. Especially on days when my "alarm" goes off at 3:45 AM on a Saturday.

Autistic-Like

Yesterday I watched the documentary, "Autistic-Like: Graham's Story," directed by Graham's father Erik Linthorst. I have never, and likely will never, meet this family, but I know them. I know them with every fiber of my being because this cruel life-the one with a child affected by Sensory Processing Disorder, Sensory Integration Dysfunction, PDD-NOS, Aspergers, Autism, or any other label that effectively means the same thing-is the same for all of us.

Now, I'll be the first to say that all I know of Graham's parents is that they are raising a child with "Autistic-like behaviors." I don't know what they do for a living. I don't know if or where they went to college. I don't know how they met, or what their dreams were. But I know that their journey has been re-routed by appointments with specialists, therapy sessions, and IEP's. And I know that all too well.

I felt such a range of emotions watching this program (which is why I always record but rarely watch these programs).  I was sad watching early clips of this little boy's life that depicted behaviors that were taking over his ability to thrive. I was indignant listening to specialists share why they diagnosed him with Autism in order to help the family secure services, even though they thought the diagnosis was overkill. I was inspired - but with a twinge of jealousy, frankly - watching his successes.

I was angry that he was born in a place that offered services that bettered those that were available to Braden. I felt validated to hear his father share that what he learned from their journey was that the best therapy he can give his son is love and acceptance. But more than anything, I just felt sad.

The idea that their child was "Autistic-like," rather than diagnostically straight-up Autistic seemed to offer solace. I've heard people say, "Well, it's only Aspergers," or, "He's very high functioning." I've told many people in the last several years that I think that's almost worse. To be so close to typical-development, and yet...

As much anyone can, we know how our story ends, and that's ok! (How we get there is still pretty darn uncertain, though). I don't think of acceptance as giving up; I think it's finding peace in spite of circumstances. It took me several years to get to that point, but once I got there things made more sense and my job with B came sharply into focus.

Choosing a Cause

When Braden was an infant, I was a stay-at-home mom. I worked at a daycare up until the day I delivered him, and we just couldn't see me putting him in a facility so I could go to work in another. There were, of course, a few other factors, but that was the big one.

For a time I watched two children in their home, and took B there with me. That situation wasn't great either, and we decided that my place was with him. My husband was in a good place with work, and I was starting to get the itch to go back to college. I enjoyed being home with him. Life was so simple then. I really had no idea how good those days were.

With all that time to think, I remember deciding that I wanted a positive way to give back to the world. I'd always been taught to give of myself; I had a very religious upbringing, and my mom and step-dad always volunteered through our church. It made perfect sense that as I built my adult life, I should do the same. With all that 20/20 hindsight, I can say that I wanted to prove that I was a responsible adult and that seemed like a good place to start (compensating for the fact that I'd become a 21-year old unwed mother).

I had stopped attending church as my high school years ended and my parents' marriage fell apart. So I'd need to choose a cause. I decided that I would do a breast cancer walk.

My step-mother's mother had recently undergone treatment for breast cancer. She was in remission and doing well. I didn't know anyone else who had been touched by the disease. In fact, I didn't really even know her. But as a young woman, it was one that made me feel at-risk.

The walk I found was at a zoo near my dad's house, and it turned out to be a great excuse to see them. We pushed my step-brother and my son (they're only 10 months apart!) around the zoo and had a great time. I may have even learned a factoid or two about breast cancer.

By the time the walk came around the next year, we were knee-deep in appointments and evaluations searching for reasons why our sweet boy wasn't talking. He was now 26-months old, and his developmental train seemed to have jumped the track. Being responsible had taken on new meaning, and I didn't have time or energy to give of myself outside our family's four walls.

Fast forward to present. Still wanting to find ways to give back, I have worked in the non-profit field off and on since 2006. Non-profit work can be very rewarding, but it is very demanding. Human resources often compensate (or are expected to compensate) for a shortage of financial resources. I have left those positions voluntarily, but with my proverbial tail between my legs.

In the last few months, it's finally clicked for me why those jobs didn't work out. They were all cause-driven, and as much as I would like to I just don't have any more of myself to give. Autism didn't ask permission, it just weaseled it's way into our lives and demanded that I give it all of me.

When I was younger, I thought I could choose a cause and be on my way toward a life of social responsibility. I was too naive to realize that it is a very special, and very fortunate, person who can commit to a movement solely out of agreement with it's end. Humans are inherently self-serving.

Building on that idea, Gahndi is credited with saying, "Be the change you wish to see in the world." I would love to see breast cancer - all cancer for that matter - eradicated. But not more than I want my son to grow and thrive. And not more than I want to see ASD give my baby a day off from it's oppressive hold on him. Why? Because I'm human, therefore self-serving. Because I'm a mom. Because (and here's the part where for once I'll let myself off the hook) my cause found me.

Expert Opinions

It's not uncommon for us to screen our calls. We do it for a million reasons (not the least of those that we're a scosche anti-social). But there is one call I always have to answer - Braden's school. When I see that number, my heart drops.

As is the case for most parents, calls from school are generally bad news. Someone is sick or sometimes hurt or in trouble. The teacher B has this year (and had over the past summer) sometimes calls just to say, "Braden had a great day!" or "He's really making progress with..." I really enjoy that. But today was not one of those calls.

Last week the two of us had discussed changing the action plan for when B gets aggressive. He'd had two bruises on his arm since the beginning of the school year (that looked an awful lot like thumbprints). Did I think he was being abused? No. Did I think it was acceptable for my child to come home with marks on his body? No. That's kind of the gray area I live in...smack in the middle of irreconcilable truths.

We decided that the children around him who were (at least in theory) not agitated and more easily re-directed should be moved to safety, rather than trying to intervene and remove him from his current spot. Today he decided to give his teacher a run for her money in the first full week of implementing the plan. Why? Because he had to come in from recess.

For those of you who have never had the pleasure of a 'tism meltdown, think toddler on steroids. He managed to kick another student, and that brings us back to student safety. I'm a reasonable woman, and I know that one student's safety can't trump that of the others.

So the million dollar question is what do we do? It's one that I've been asked countless times over the past several years. It's one that I've researched into the wee hours of the morning. It's one that we've thrown best practices at and still not emerged with a viable solution that sticks. It's one that our insurance company spent big bucks on funding crisis stabilization at an inpatient treatment center that took B in for a "5-7 day" stay but sent him home after more than 30 with the expert opinion that "if you agitate his comfort level, you'll get the negative behavior."

Yep, you read it right. So if he's asked to do something he doesn't want to do, or to not do something he wants to, we're out of luck. He's going to get angry and more than likely, he's going to get aggressive. Our Community Mental Health social worker has assured us that many people "have it worse." I'm certain that is true, though I'm not sure what that matters. No one has a good solution for managing his behaviors, and that's incredibly frustrating for all of us.

For now, we decided to go back to removing Braden from the situation by leading him away by the hand instead of using any type of restraint. Is it a solution? Not really. At least it buys me time in between phone calls.

My Blog, My Rules

One of Garret's first homework assignments of this year was to cover a composition notebook with pictures/stickers/words/etc. that represent him. The book will serve as his writer's journal for this school year. I told him I have several writer's journals from my college days. We had quite a good conversation, and he asked if he could see them.

I went digging in the attic, and I finally found them in the basement. Upon further review, they're not really appropriate for sharing with a seven-year old. Reading them really got my writer's blood pumping, though and it got me thinking that I can break up my blah-blah-blog about family life and ASD with some creative pieces. My blog, my rules. Beautiful!

The first thing I though when I re-read this one is that it needs some editing. Still, I like where I was headed with it. This piece was published in our campus literary magazine, "Cardinal Sins." I only submitted for publication once (because of my aforementioned complete lack of self-confidence). Two of the three pieces I submitted were published that semester, and you know what the old song says...two out of three ain't bad.

Legacy

The canon is full of loose cannons--

tortured souls

whose ability to express themselves in writing

could pleasure the stable mind

but never pacify their own.

Slaves to their demons--

marked by melancholy and madness--

Annabel Lee haunted Eddy

until he found rest

face down in a gutter

and Sylvia chased perfection

headfirst into the range.

And me?

You'll just have to wait and see.

Yellow Boat

Wow, does time ever fly! I'm still considering myself a changed blogger, even though it's been 6 weeks since I sat down to post. Where have I been? All over!

We took a family vacation to Ohio, which is one of my least favorite places. I think people from Michigan are hard-wired not to like Ohio, but we tolerate it to go to Cedar Point. It's been a few years since we took the boys there. Last year Garret really wanted to go, but he wasn't tall enough for most of the big rides so we skipped it. This year he was determined that we were going to go, and that he was going to be the king of the coasters.

I was nervous to have Braden A) in the car for that long, B) at a hotel for the night, and C)with that many people in a massive expanse of stimulation. But part of having one child with ASD and one without is balancing what they need. So we packed up the garden cart (What? How many wagons do you know that will tote around a 5'2" 115-pound kid?) and hit the road.

Like most sets of parents, my husband and I have very different outlooks on, well, darn near everything. ASD or no ASD, I need a plan when I travel. I need a list when I grocery shop, I need a to-do list to lead me through the day, and I certainly need an itinerary when I travel. My husband, on the other hand, likes to be (or at least feel) spontaneous. On this particular trip we left with no dog-sitter for our 7-week old puppies, no hotel reservation, and no amusement park tickets.

With my stress level through the roof, we drove for a few hours before stopping at a Wal-Mart to buy noise-reducing headphones (in our rush to meet the arbitrary "ass-in-seat time" laid out by my spontaneous husband, we left without ours). Braden was annoyed until he saw the S-U-B-W-A-Y. That helped us make up time, so we grabbed lunch there.

When we got to the hotel where we wanted to stay, we crossed our fingers while Daddy went in to see if there was a room available. We waited almost an hour in the van (and not patiently, I might add). I was cursing the spontanaiety all the while. After half an hour, Braden was hanging by a thread. Garret had the great idea to put in the Sesame Street tape, and we sang and danced around in our seats until Daddy returned with a room key. Phew!

In case you're concerned, a great friend agreed to check on the puppies regularly while we were gone. She's so great, in fact, that she not only cleaned up after them, fed them, and played with them, but also gave them a bath! Thanks, Amanda!

So with those two BIG issues checked off my list, I was starting to relax. Of course, we were staying at an indoor waterpark in close proximity to an amusement park. The only thing more annoying than my kids? Other people's kids!

Braden was excited, though, and we got into our suits and hit the waterpark. Once we got in there and tried to go on a slide, he changed his mind. Now we've been to our fair share of waterparks, and I know for a fact that he LOVES the slides. Part of his brand of ASD includes a mess of anxiety (that's the part he gets straight from me, truth be told). As his mom, I've become very familiar (and comfortable) with pushing through anxiety with him. What does that mean? Well, in this instance it means he was going to go down a slide if it killed both of us.

Mind you, this boy is about 3 inches shorter than me and 20 pounds lighter. He's also a million times stronger! So he's decided that he's not going to go and I've decided he is going to go, and we're about to work that disagreement out on three flight of stairs. Judging by the looks I was getting, we were quite a sight. He's also big enough now that he gets looks. (I hate that part. Like most moms I know, I'd be happy to carry that burden of judgment so he never needed to feel it. I tell myself that he doesn't feel it so I can keep going. If I thought he knew...well, you know).

Anyway, we're navigating the indoor waterpark staircases. He's vehemently shaking his head "no," and saying, "help," over and over. And I'm prodding him up the stairs and telling him that we're going to go down the slide in the yellow boat and that it will be fun. When we made it to the top, I was struck by the scene in front of me that I'd been too distracted to notice. A dad had his three- or four-year old daughter in a bear hug and picked her up into the raft with him as she whimpered. Those were the days! Daddy and Garret got into their raft and waved as they headed down the tube.

Braden made one last effort to go back down the stairs before I dragged him into our raft. I tried to distract him with the overhead red and green lights that signaled the operator when it is safe for us to go. When the light turned green, he squeezed the handles on the raft. In the dark of the ride, I heard a shriek and then a giggle. When we stepped out of the raft, Braden grabbed my hand and took off running. I stopped him and said, "What do you want?" He let go of my hand and signed, "Yellow boat." Mom-1, Anxiety-0.

Pinocchio

It seems as though somehow the mere mention of the A-word makes people forget that they're still interacting with people. I've been lucky enough to have several speaking engagements over the last few years. I've always made a point to share that when someone sees my son, I need them to see a child with a disability not a big blob of disability. Over the years I've had more frustrating encounters with professionals than I could possibly share. I've had numerous conversations that centered on what I could--or couldn't--expect from a child with a lifelong, permanent disability. I've been beaten half to death with best practices. And I genuinely understand all of that. The thing is, B isn't a case study in a text book or any other patient/client/consumer/student you've ever worked with. He's a real boy (please go back and read that in the voice of Pinocchio if you didn't the first time). He loves chocolate peanut butter ice cream. He hates fish. He is happier in the water--lake, pool, sprinkler, toilet--than anywhere else. Steve Miller Band's "Rock'N Me" makes him grin from ear to ear. Maybe I'm a dreamer, but it seems to me that who he is should probably enter into the conversations about where he's going and how he's going to get there. So go ahead and ask me about my pregnancy and delivery. Ask me how much college his father and I have completed. Ask me when he crawled, walked, babbled, pointed, and spoke. Tell me that children "like him" typically respond well to A, B, and C, but never D. But do not presume to know him. He is not autism incarnate. The blue fairy told Pinocchio, "Prove yourself brave, truthful, and unselfish, and someday you'll be a real boy." I guess maybe you could get him on the unselfish point, but I'm pretty sure B passes that test. My boy is a real boy, and as long as I have breath I'll make sure you see him that way.

So what?

It seems simple enough, right? I love to write, I'm pretty decent at it, and everyone these days has a blog. So I should start one too! I've tried a few times. I've made that resolution and jotted down my password (and hidden it in a place that my forgetful self will hopefully remember). I've determined that this time I will make blogging a part of my daily life. I even decided that the title of my blog and the posts that I create will revolve around the one thing I know best...autism. Still, it doesn't stick. Today may be like all the other times I've tried--and failed--to become a blogger. But I think I've figured out why this hasn't worked in the past, so I think maybe I can muscle through this and take advantage of the opportunity that technology offers to write. The scary part--and my biggest stumbling block to-date--is that technology offers the opportunity, but there's a catch. The catch is that I have to be willing to put myself out there and be vulnerable if I choose to write about personal things in a public forum. The x-factor is that I may be doing it to an audience of none or to a packed virtual auditorium. What a concept! Simply put, I don't write because I have stage fright. What if people don't read this (because I'm not that great of a writer)? What if they do (and realize how lame I am)? What if people think I'm stupid (because, good lord, I'm not really all that bright)? What if they think I'm not interesting (because I'm really not interesting)? What if people read this and think, "Ugh. Why would she waste her time writing that?" (because of all the previously stated reasons). See, whatever I may post, and however easily it may dance out from under my fingers, there's a person sitting at this keyboard. A flawed person with fears and doubts and insecurities. The challenge for me is to acknowledge all of that and choose to write anyway. It's easy to have a good day where I feel like I can take on the world. The real test will be in stringing those days into a pattern of days where I sit behind this desk, share myself with the world, and not lose sleep if someone, somewhere says, "So what?"