Thursday, April 13, 2017

Rock Bottom

In honor of April and Autism Awareness, here's a little story about what autism is like at our house...

A few weeks ago I read this article that references this study. The headline "Austistic Children 40 Times More Likely to Die from Injury, Study Shows" was bad enough, but, by far, the worst part was the statistics quoted in the study. These researchers at Columbia found that the average lifespan for individuals (in their study) with autism was HALF that of non-autistic individuals, or 36 years compared to 72 years. When I first read the article and study, I figured these differences had to do with the way the numbers were being manipulated or the way the study was being reported out (I'm a literature person, after all, so I think a lot about the construction of media narratives).

But, then I looked closer at the study and thought back over my own experiences and realized that maybe things really are this scary for families that live with autism. The weekend before this article came out, for example, Stow almost drowned THREE times during our visit to an indoor waterpark. Even though he'd had 8 weeks of private swim lessons focused specifically on how to be safe in the water (including repeated practice of getting onto his back, floating face up, and calling for help), and even though he had access to a life jacket, AND even though Ren and I were within feet of him each time and warning him as he headed into danger, he still got in over his head (in the EXACT SAME SPOT!!!) three times. The only reason he didn't drown was because we were right there, ready to jump into the pool and pull him out of the water. But each of the three times, he was truly surprised by his near drowning.

I thought about the indoor water park when I worked through my thoughts on the CNN article, and gradually it dawned on me that I was only just beginning to understand what Ren and I are up against. I know it sounds strange, but I became aware, in ways that hadn't quite solidified in my brain before, that Stow is not inherently safe.

"Koi" by Sky. Completely unrelated (although the water is a nice tie-in) to the post but a nice diversion from a grim discussion.
I've got six (well, technically 12, but is has only been 6 since the first diagnosis) years' experience as an ASD parent. I should KNOW what I am doing. But, in all those years before and after Sky's diagnosis, I never once worried about whether I could keep him safe. Sky's ASD runs along the obsession, stim, talk-incessantly-while-totally-oblivious-to-social-cues gamut. I mean, sure, I worried that he would be bullied and that the world might not accept him, but I never worried about whether he was at risk of severe physical harm. But with Stow, we need to figure out how to parent completely differently as we are constantly trying to anticipate and reduce risk. I thought dealing with non-stop discussions of Star Wars was exhausting, but it pales in comparison to figuring out how to keep tabs on a risk-taking wanderer who has little regard for self-preservation and with whom it's not terribly easy to reason.

Stow's ability to be destructive or to create risk for himself is simultaneously awe-inspiring and maddening. This week, for example, he figured out how to unlatch the screen on his second-floor bedroom window. As a result, he now delights in unlatching the hooks on the screen and watching it plummet to the ground below. The first time he did it, we thought it was an accident. The second time, we assumed he liked the thrill of watching screen drop but would curb his risky behavior once we explained to him the dangers involved. The third time he took out the screen, we realized this was now a thing and that we had to intervene. Apparently, life is freer without the encumbrances of a screen on the window because today (less than 48-hours after figuring out how to take off the screen) despite our near-constant surveillance, Stow managed to open the window, pop out the screen, and sit on the window sill to take a leak. OF COURSE this is dangerous, but we had no idea he would do that until he did it. Ren is installing new safety locks as I type. But, I stand amazed by how quickly and persistently Stow courts danger, and I have no illusions that these new locks are the answer to our problems. A kid intent on exploration without any regard to personal safety will find other ways.

Last week, Stow discovered that if he runs out of the house as fast as he can and jumps on his kick scooter, no one can catch him as he rides pell-mell toward the main road. So far, he's stopped without venturing into the traffic, but we have no illusions he will continue to make that choice. We're working on strategies. Unfortunately, there aren't a lot of contingency plans for an old man with a bad spine and two kids who aren't quite old enough to control their rambunctious younger brother who seems hellbent on self-destruction. Our current strategy is to keep him inside and distract him with the iPad (it's a horrible strategy).

We also utilize safe spaces. His room is currently not one of those (though it should be soon). The corner of our living room is his other calm-down/safe space. A few days ago, when he was there, he did considerable damage to the door and wall, gouging out chicken scratch messages Tom-Hanks-in-Castaway-style using the pressed souvenir penny we'd bought for him at the zoo (WOW, that 51-cent bargain souvenir turned out not to be a bargain after all!!).

"Musings." Door carving by Stow. From a distance, it's not so bad. Up close, it's an impressive series of deep scratches. 
"2+2=4." Wall carving by Stow. Ironically, once I figured out those were twos instead of backwards fives, I felt a lot better about the fact he was practicing math facts on the wall.
So, I don't know you guys. I guess I've got nothing after all. None of what I thought I had figured out applies to where we are now. This is unchartered and unnerving territory.  It's exhausting and forces us to draw from reserves we didn't even know we had (and that we probably shouldn't be drawing from). But, we know our only option is to dig deep and hope we don't reach the rock bottom of our reserves before things change and life becomes more sane again.


UPDATE #1:
Update: 2:30 p.m. April 13th. Now, let's see how long this lasts.
(Also, I don't love that it's called a Window Warden, but oh well.)

UPDATE #2:

April 13th, 3:30 p.m.
Stow has figured out how to break into his brother's room and climb out his window onto the tiny roof. More window locks on the way!

UPDATE #3

April 19th, 4:15 p.m.
Stow has demonstrated that I should never--not ever--think I know how hard things can be or claim to understand the outer limits of chaos. On the bright side, I feel like I now have a much better grasp of the phrase "infinite possibilities."



Wednesday, March 8, 2017

The Big Day

Today was a big day.

Today Sky graduated from his IEP.* The path to diagnosis and then from getting the diagnosis to obtaining help at school was long and arduous, so I admit that part of me hesitated when Sky's case worker suggested we schedule an exit meeting. Six years ago, when I had to fight tenaciously for months just to get support for him at school, I never imagined a time would come when he would no longer need that support.

I mean...
I still remember being told he couldn't participate in the school field trips unless I could take off work to go with him since his teachers didn't feel like they could handle him. 
I remember the little boy who repeatedly got in trouble for taking things literally and misunderstanding every single shade of gray. 
I remember the preschooler who missed the bulk of the teacher's instructions because he didn't know she was talking to him or couldn't process what she was saying. 
I remember the notes from Sky's first formal school evaluation that elucidated in excruciating (yet somehow humorous) detail how he mimicked the sounds of various explosions throughout instruction time, clearly disturbing the children  around him even as he kept on task. 
I remember how that same evaluation described the way that he jumped up during class and ran around his chair three times before sitting back down again. 
I remember the kindergartner who climbed over backs and stepped on fingers during circle time in order to pick up something the teacher dropped so he could return it to her, not realizing he'd hurt three of his classmates in his effort to help. 
I remember the boy who never made it through PE or recess without bumping into other kids or knocking someone over.  
I remember when he perseverated** to the point of making his classmate cry, 
I remember the kid who couldn't go to the bathroom without disrupting the entire hallway as he listened to his voice reverberate off the tile floors and the metal stalls. 
I remember creating social stories about how to walk through the classroom to turn in a paper without wreaking seven kinds of havoc as he made his way from his desk to the teacher's. 
I remember worrying, I mean really worrying, that Sky's autism would forever prevent him from demonstrating the brilliance we knew was in there but that was so often hidden by all the other stuff. 
I remember the hundreds (maybe even thousands) of times other kids accusingly announced to me this, that, or the other wrong that Sky had done. 
I remember how terribly hard it was to send Sky to school each day knowing full well he wasn't equipped to handle all the world would throw at him.
Sky's artwork, hanging in the hallway at school
 I remember that kid very, very well. But, that's not who Sky is now.
The Sky who exited his IEP today is the king of clever jokes and spot on physical humor. 
He's a self-advocate who appropriately seeks guidance when he doesn't understand instruction or when he fears he didn't quite get what he should be doing. 
He's an artist respected by his peers for his immense creativity. 
He's an amazing story teller. 
He's an avid reader.
He works comfortably in large and small groups. 
He's an all-A student in honors classes. 
He's a kid would can control his sound effects and take turns in class discussion without perseverating on particular points or concerns. 
He's a budding pianist. 
He's a good friend who has a small group of close pals but who seems to be known and well-liked by many.
In short, Sky is a kid who no longer needs an IEP. So, for Sky, today was no big deal. Aside from the fact that his mom and dad brought him to school early so they could meet with some of his teachers, his principal, and the other folks on his IEP team, this day was pretty much like every other day. Sky did what he always does--he went to classes and hung with friends; he worked hard and lived large.

Another piece hanging in a display case at school.
Today might not have been a big day for Sky, but it was a huge one for me. Because, today I had to learn how to willingly let go of something for which I'd fought so hard. I had to tell myself that these are the fruits of Sky's hard work, and that we should cherish them. I had to remind myself that, though Sky still struggles, he is doing fabulously, and he will be fine. I had to acknowledge that this is a journey to destinations unknown and that that's ok.

I had to trust the process.

None of this comes easily for me, but I am learning, and I will be forever grateful for the all of the therapists and teachers and friends who have helped me figure things out along the way. Today is a big day. It's a good day. But, I suspect it is only one of many great days to come.



______________________________________________




* IEP stands for Individualized Education Plan. It is "a written document that's developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year. Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she's a child with a disability, and (2) she requires special education and related services to benefit from general education program." (Definition taken from: http://www.greatschools.org/gk/articles/what-is-an-iep/)

** Perseverate: to repeat something insistently or redundantly; the continuation of something (such as a word or an idea) usually to an exceptional degree or beyond a desired point (definitions taken from dictionary.com and Merriam-Webster).

Sunday, February 19, 2017

On Starting the Journey All Over Again

Stow got an autism spectrum diagnosis.

Part of me feels compelled to type that line over and over and over again because it feels big enough to engulf everything. I mean, how do you go on from learning you have a second child on the spectrum despite all the work you (and he) have been doing?

The other part of me feels a strange sense of relief. Ren and I have suspected autism for awhile, even though Stow is much different than Sky was at this age, and even though he has responded well to various interventions we've tried. Since Stow was a baby, he has done or is doing developmental therapy, occupational therapy, physical therapy, speech therapy, hippotherapy, chiropractic therapy, social group, and behavioral therapy. He's also been on some form or another of a restricted diet to reduce the various side effects some foods seem to cause. Most of these things have helped, and many of his therapists and teachers tell us that he doesn't seem like other kids they've known who were on the autism spectrum.

But, nothing has ever come easy for Stow. He's been delayed on pretty much every milestone and has had to work hard to reach a lot of them. He struggles with hypersensitivity to some things and hyposensitivity to others. He has a hard time reading social situations and can often overreact or ignore. Classmates and friends are leery of him because he doesn't respond in predictable ways. He has daily meltdowns. And when he's nervous or happy or sad or scared, he struggles to process what people say to him and put his thoughts into words, and the breakdown in his language can seem pretty catastrophic to him (and therefore to the rest of us).

He gets everything eventually!
Up until the diagnosis, one of my biggest worries (honestly) was that all of the knowledge we'd gained from parenting Sky and all the resultant interventions we'd pursued with Stow would actually keep him from getting a needed diagnosis. I know that sounds strange. What I mean is that even though Stow ultimately does okay, he still struggles a lot; he goes from being fine to needing a ton of support to being fine and then needing a ton of support again. Our job as his parents is to make sure he's getting what he needs when he needs it. Having an appropriate diagnosis can help with that.

Despite all we've done and despite all the ways Stow has managed to scrap his way to generally being on track developmentally, Ren and I both still felt like we didn't quite have Stow figured out. That's why we followed through with the appointment with the specialist ten days ago. I'm not sure what I was expecting when we went, but I guess I was hoping for a little bit of magic, that maybe the appointment would uncover some kind of heretofore unseen disorder that could be easily treated with some new (to us) and exciting therapy. A girl can hope, right?

The autism diagnosis tells us our instincts are in tact, and I guess there's something comforting in that. But, we are a bit overwhelmed as we now realize how much work we still have to do. Just like with Sky's diagnosis, this one didn't come with a roadmap, so the way forward isn't entirely clear. There is a lot we have to figure out on our own. Just thinking about it can be exhausting. Since we've done it before, I know Ren and I are up for the challenges of this journey. I was just really hoping we wouldn't have to take it!