The Impulsive Life

A wise RDI (Relationship Development Intervention) therapy practitioner once told me my son would make progress, and I needed to understand that progress wouldn’t be a straightforward trajectory. It would be steps forward and back, measured as a year with 365 days of motion. Last week I was reminded that everything with W, as with all people, is a work in progress. Our old friend impulse control once again shoved its head in the sand, and the results sent my liver into hiding.

One of the key events during the memorable holiday trip where I realized our then two year old had autism was a visit to the Center of Science and Industry. Hubs and W looked up at a unicycle riding overhead in the lobby. When Hubs looked back down, W had disappeared. Only after 10 very freaked out minutes in which angel strangers helped us scout the crowds, and I had imagined the makings of Pervy Pete in every other human at the place, did we hear an elevator bell and run flying to its source. W loved elevators. Sure enough, there was our 2 year old blissfully piloting an elevator, with a worried looking museum employee holding his hand searching for missing parents. The crying woman with hands around her husband’s neck was the obvious bet – yes, he’s our kid.

The next year when W was 3, we spent a wonderful week at PACE Place (www.paceplace.org) in Beaverton, OR. It was a sanity saving week where three therapists worked with us as a family unit, addressing parent understanding and issues, sibling experience, in addition to my son’s behaviors and speech. No other place had focused on our needs as a functioning family. Before we arrived, I filled out the usual buckets of paperwork documenting all the experiences we had had thus far. When asked what areas we specifically wanted to work on with W, I demonstrated my deep autism-related reading by answering with such things as “executive functioning skills” and “pragmatic speech”. Once we arrived, the co-owner Eric read our requests, talked with us about our lives, and said “hmmm…how about something more basic like going to the grocery store without him running off, or walking by a body of water without him jumping in?” Um, sure – that would be good too. We worked HARD that week, made significant headway and left with next steps to keep up the progress. We also received the sage advice to teach him to swim because more than likely, he would manage to elude us and jump into a pool or lake or creek at some time in the future. Impulse control would be a long-term project, so be smart.

As we were warned, impulsivity has been quite the project.  Every year there seems to be a new event or challenge. A short list of W’s impulse actions:

  • As a preschooler, W found ant poison previous tenants had, unbeknownst to us, left in the garage. A 6AM thud and scream led to the discovery of W in a pool of sprayed poison with his foot and toes swelling where he’d slid and smashed them into the entertainment center. Luckily nothing was broken. That did lead to us locking him in his room at night.
  • A lovely preschool full-reach mural on our living room wall. He even signed it. And I discovered the wonder of Mr. Clean Magic Eraser.
  • Sharpie murals on the 5-year-old W’s bedroom wall.   Wherein I discovered the limitations of Mr. Clean Magic Eraser.
  • Dropped swim trunks on many occasions. Calm down crotchety lady – it’s a cute bum. And yes, the younger girl marching & singing, “I don’t have a penis” also belongs to us. They’re a matched set.
  • Blue penis (yes, Sharpie again). It only lasted one school week.
  • Fire alarm pulled at school. All alarms from that point forward throughout the school had “W don’t” taped above “pull for alarm” signage.
  • Fingernail polish – sparkly AND matte. It was fine on fingernails and toenails. It was when it was put all over his face that I had to get crafty to find a non-toxic removal solution. I was also pretty sure I was one of the only moms of a 5 year old boy with a behavioral plan that included him getting his own shoebox of make up and nail polish so he’d leave ours alone.
  • Hubs finding an empty Paxil bottle next to smiling and swallowing W. Some moms pull cars off their kids. Me, I discovered I could simultaneously lift my kid in one arm, put my finger down his throat and dial Poison Control whilst running through the house. Nice Poison Control man let me know making him throw up was the worst thing to do in similar future situations. Noted.
  • I arrived to find Hubs outside talking to neighbor with W inside. Sure enough, W had turned on the microwave to 2 hours by the time I went inside to check.

But last week, I was feeling smug. W was in middle school and thriving. He had received accolades from special and general ed teachers at the annual IEP. He was signed up to mainstream into more classes next year. His behaviors had lessened substantially (in middle school – go figure) and surely we were traveling on a bullet train ticket out of Impulse Landia. <cue DUH DUH DUUUUUHHH music>

One of my kids’ long-standing favorite books is I Ain’t Gonna Paint No More. IMO, Karen Beaumont and David Catrow can do no wrong when they team up for a book. Unbeknownst to me, my husband had pulled out this old standby to read to the kids before bed. I started to become aware of the reading when I was awakened at 6AM with our house’s version of an alarm clock – my son and his multiple queries of “Mommy, can I paint myself?” <Snort, sniffle, scratch> “What? NO! Dude, what time is it?” His little sister, who somehow at 8 years old still manages to go to bed in her own room and mysteriously appear snoozing happily in our bed between her father and me, groaned “oh, we read that Ain’t Gonna Paint No More book.” Speaking of alarms, if I hadn’t been so groggy I would have heard them ringing in the back of my mind and gone on lockdown drill. What I did, however, was go back to sleep and forgot about it. As any mother of a kid on the spectrum knows, spring break means breaking routine. My kid being one of the sleep issues autism masses, breaking routine means mornings begin anywhere from 1AM-5AM for weeks on end. My brain is a scary place to be at school break time. Those weird women hugging the short bus drivers the day school starts, yep we’re all part of the triple latte mamas club.

Fast-forward to a 5PM text from Hubs: “Well, boy has painted himself in oils. In shower now but not coming off so well. Sigh.” I grabbed my daughter after ballet class and raced home to find this post-shower site:

A boy in oils

A boy in oils

I knew my mother’s art kit gift to the kids would lead to some level of…creativity. When I asked Hubs what was recommended online for removing oil paints from skin, he let me know he hadn’t looked but that he had washed W’s feet with ammonia prior to the shower to keep the paint off the bathroom floor. Luckily ammonia isn’t toxic. Oh wait, yes it is. One does wonder how males survived in the wild so long without accidentally lethally injuring themselves and each other on a regular basis. After a liberal rubbing in olive oil, we had a child who was less rainbow-like, and sheets with body-shaped stains Dawn and Clorox 2 will never get out.

And yes, this is the same child who asked for a chainsaw for Christmas and talks about when he’s 16 and starts driving. Only the exhaustion of chronically sleep-deprived parents allows my husband and me to forgo nightly worrying about the future forming in W’s head. And more importantly, what he’s not going to think about doing…until he actually does it of course. Snifters and snark and the realization that there are a few sets of 365 days before we cross that bridge. Those are the tickets to happiness.

And So It Begins

Not sure how to make up for the missing years and give the full picture of our autism trip, so I’ll do the View Master version. For the 20-something moms who don’t know the world of 1970s toys, get your Google out. 😉 In the beginning of the autism journey, there wasn’t a lot of laughter or loving of life. If any reader here is new to autism and looking around at what appears to be a dark place, I say over and over and over “IT GETS BETTER!!” I figure you have to get yourself way down to appreciate what you have when you surface again.

W and Daddy visit me at work (probably delivering the cell phone I always leave somewhere)

W and Daddy visit me at work (probably delivering the cell phone I always leave somewhere)

It’s September 2002 and 9 lbs 14 oz of big baby boy arrives in the world. Months later, we have a happy giggling baby who loves people, and insists people notice and smile at him on the SF MUNI trains. Ladies love W, W loves the ladies. At home, he lays quietly content in his crib and watches his groovy mobile turn. Baby W turns into toddler W who has gut laughing giggle fits, loves to be hugged, loves music, loves life. We have achieved perfection. We can’t believe our luck in life.

Droolio in his jumper

Droolio in his jumper

In 2004, I’m pregnant again, we have the best toddler in the world, we’ve been adopted by a 22 lb cat Seamus, laughter fills the home, and life is amazing. Then the single W-isms that the pediatrician has told us to not worry about start to add up: he doesn’t walk until 1 year, he has very few words at 15 mo, he tries to put everyone’s elbows in his eyes, he loves spinning his ring toys & “playing dj master” with his crib music center, he can entertain himself forever without needing attention. We take him to Ohio to visit my family for the holidays and he slowly stops looking at people, won’t listen or pay attention when called, seems completely overwhelmed and short-circuited. My BFF (and my children’s godmother), who has a degree in child development and has always worked with kids, plays with my boy. I can’t miss the concerned look on her face that I can read so well, even though she says nothing to me. She doesn’t want to throw a cloud at her bestie who made it through her wild years and surprisingly found happiness in CA as a married, working mom; not at Christmas time when she’s happily showing off her beloved boy. Every day the red flags multiply and I can no longer fight the sinking feeling that something is wrong. Days after Christmas as I watch my father trying to play with my son and getting no reaction, it suddenly hits me like a box of bricks: OMG I’m looking at autism.

My stay-at-home husband is floored by my suspicions. When I call him the King of Denial, he looks miffed and says, “I prefer Pharaoh”. But even my Egyptian ruler of ignoring the obvious spouse is concerned at our son’s reaction to his two weeks in a new environment. I call afore-mentioned BFF to note my concerns and she says “oh thank goodness, I didn’t know how and when to tell you W’s not acting like a typical toddler.” I stay home and watch my son at the park, at playgroups, etc. I ask my husband if he has always just run around the trees rather than interact with the group of kids on the play structures, and my husband says that’s W’s thing. Everywhere I look, I realize how much I have actually missed in my blind bliss of motherhood.

W with his Daddy and Seamus the jungle kitty

W with his Daddy and Seamus the jungle kitty

The pediatrician admits she doesn’t have a lot of experience with autism, but she understands our concerns noting our son is watching the clock and not looking at her or answering when she calls his name. She delays her next patient, makes calls and gets us a list of resources. (Side note: I do have my issues with Autism Speaks, but I give them full credit for raising the level of autism awareness and education in this country. I only knew about autism from catching an NPR interview driving to work. Today there are few people and hopefully no pediatricians and childcare professionals unfamiliar with the signs of autism and available autism resources.) We call the numbers from our pediatrician’s research and fate is on our side in the diagnosis process. Another family cancels last minute for the UCSF Autism Clinic and we get in within 2 weeks, vs. 2 months. As I feared, we’re told our beloved baby boy has what used to be called “classic autism” and that we need to get him into intensive therapies ASAP. Who knew his grabbing my hand and moving it toward a wanted item is different than most kids who point to the object relying on shared attention? Who knew that he’s not getting comfort from me when I pick him up if he cries, as other kids would snuggle in and look in my eyes? Who knew other kids point to objects in the books and look at their mothers to connect them with the idea, rather than just grabbing a book and clambering up in the mother’s lap to listen? Who knew it’s not actually a good sign that my son can play so happily for so long by himself? My husband is crushed; he really hadn’t thought there was a problem and expected to be told our son is fine. I was expecting it, but I still spiral. I spend the next 2 days sitting in a chair in the kitchen refilling my teapot and listening to gospel CDs. I would to thank the combined powers of Aretha Franklin, Mahalia Jackson, Donnie McClurken and the Glide Ensemble for getting me through those days! And then I get moving because I have to, for so many reasons. The next week the state Regional Center reviews the UCSF diagnosis, takes a look at my pregnant gaunt-eyed self, and funds all the recommended services without flinching. My bosses at Sun Microsystems tell me to take off as much time as I need to get things in order for my family. Bless you Maria, Susan and everyone at that company! Then I go to my son’s playgroup where I see a little bald boy, surely with cancer, run by and something snaps into place. My son has a non-life threatening condition that will improve with intervention. How much improvement we’ll see and how far he can go in life is unknown, but he’s only going up and it’s my job to get the rocket pack lined up for him.

So began my family’s autism ride. I’ve always loved roller coasters. This one has made me rethink that predilection, but for every whiplash and emotional barf-inducing drop, there have been enough curves and loops to make the ride enjoyable. I’m still waving my hands in the air with my fabulous boy next to me flashing his life-loving smile. Cuz we both love the coaster life. I had planned on the kiddy Gadget’s Go Coaster and somehow stumbled onto California Screamin, but now I realize just how dull the little ride is anyway.

The Big A

The Big A

Autism – the other Big Red A. I’ve been meaning to get a blog going about our experiences parenting a child with autism since my son was diagnosed at 2 years old. Now that he’s 11, I figure I can write not as the freaked-out mother of a newly dx’d child sucking in the new world through a fire hose, but as the sage(ish) not-as-freaked-out mother who has found peace and happiness in our family’s new normal. I came up with a good blog name and it’s high time I put it to use and get some kudos for my witty and agile sleep-deprived mind. Most importantly, I want to let other interested people know that autism isn’t something that defines a life, defines a person, defines a family, or defines the world. Unlike the WTH video “Autism Every Day”, autism doesn’t drive most moms to suicide and murder. HONESTLY! As I tell my daughter (who suffers from Princess Related Disorder, which doesn’t seem to have a cure either), everyone has a “thing”. That “thing” doesn’t define you. It’s just one part of who you are and sometimes it makes life a little harder, and so we work on it. My thing is being distracted with a quick temper, yours is being bossy, and W’s is autism. The hard part about being parents, grandparents and other adults who love a child diagnosed with autism is you mourn the loss of a kid who will never exist. The child with autism and his/her siblings never knew that child. They aren’t mourning. They’re just confused by the adults acting all weird and sad. As I tell parents new to autism, “look just behind that new label. The child you have loved and planned for is still there like he always was.”

If only I had been able to see all the laughs we would have over the years when we started down the autism path, maybe the path wouldn’t have looked so ominous. The humor has been giggling in the gallows at times, but often just tears-down-the-face, gut-hurting laughter. Like the first day my 3 year old’s bus came to take him to school and I was terrified, even though his amazing special day class teacher had promised us it was time to give it a try. Hearing the bus pull up, I opened the shutters on our picture window to a face full of honking big yellow short bus. I just burst out laughing as my husband said “well, that’s subtle!” Or when I tried to explain to the kindergarten teacher why my son’s penis was blue (New Rule: do NOT turn your back on a kid with indelible ink markers for more than 10 secs). Or when the 2nd grade teacher called me at work after that unfortunate multi-truck response to the surprise firedrill, letting me know all the fire alarm pulls in the school now had “W do NOT” written above the “pull for alarm” signage. How many other kids get personalized signage so young, eh?! Just child stars and my boy. I figure it gives me better cocktail party chatter than the typical mom, and lord knows I’ve had a few cocktails over the years (usually in my jammies on the couch, but let’s call it a party). And cocktails lead me back to the title, because we all survive with a Snifter of Snark for the Short Bus Ride.