Keep back 200 feet: Feeling awkward around special needs folks

I'm about to be real frank about some thoughts and feelings I used to have about interacting with people with special needs. I think it's important to say these things because our ambivalence in dealing with this population is part of the reason our kids (and their parents) have such a hard time integrating into society. And this segregation probably results in even more awkwardness around our kids.

Years ago, I worked in a large publishing company in New Jersey. The headquarters was in an old warehouse--really long corridors, metal cubicles (yes, I know!), cement floors. One of the employees was a dwarf. I dreaded seeing him at the other end of a long hallway because I knew I would feel flustered when I eventually walked by him and I had so much time to fret about my reaction. Where would I look? Do I look away? Act like I'm busy reading something? Try to look at him, but just long enough?

At one point, this coworker wore a t-shirt that read "Keep Back 200 Feet." Today I know that this is a standard-issue firefighting shirt, but at the time, I was sure the words were a direct message to people like me, who stayed far away from him because of our embarrassment. (I know--the world revolves around me.)

(image source: EmergencyStuff.com)

This awkwardness was pretty typical for me. And when the person with special needs was a child, my response usually went like this: First I had a great desire to confirm (by subtly peeking) that something was indeed "off," and then I tried to diagnose the disorder myself. (I wonder why this was reassuring to me?)

Then something like smugness entered in. I/we don't or even WON'T have that problem with our kids. This is an ugly truth, but there was some part of me that thought that I was immune to having a special needs child. Why, I follow all the rules, of course, all the prenatal testing, vitamins, risk aversion, etc. In my mind, there was a smidgen of blame for the parents of special needs kids.

This is not pretty, and I'm ashamed of what cycled through my mind. But I think at the bottom of this ugliness was an awkwardness, even fear: This is too close. It makes me nervous. I don't know what to say. I feel bad for the parent. And for goodness' sake, I really don't want that. Please, God, I couldn't bear that burden. My responses were a form of distancing, I believe. We distance ourselves from the awkwardness and, sadly, from the kids and parents.

Enter autism. For the first six months after Soren's diagnosis, I worked so hard no to make the Others feel less awkward. I'll admit I tried to extinguish any typical autistic behavior that Soren exhibited (walking in circles and echolalia, for example). I stayed home from places where his behavior would be more noticeable (the grocery store). And I kept this diagnosis from most friends and acquaintances. I just didn't want the judgment, the pity, the awkwardness, and definitely not the distancing.

So this blog is a freedom of sorts. I want to be transparent, and I want to move from protecting Others from feeling awkward to just living our lives out in the open. I hope that some day, we all will have been around enough unique people that we won't feel so awkward and we'll instead pop that bubble that separates us from what we fear.

I'd love to hear your feedback on this issue.

This week

It's midwinter break in these parts, which means a bit of an adjustment for a boy and his mama. We had lots of free time to hang out, eat, drink coffee (um, me--too much), and otherwise stay in. I think we're both ready for our routine come Monday. 

Love this coffee place next to my Pilates studio.

Oh, look, a theme.

Lots of waiting for Soren during his therapy appointments.

A little haircut for me. Yes, those are my feet up! Insider tip: Aveda salons give you head massages as part of the package. 

And a very happy boy with lots of playground time.

Have a wonderful weekend!

Building on strengths

When I was working at Microsoft, one of the many personality tests we took was the StrengthsFinder assessment. (True confession: I loved taking all those self-assessments. Fabulous naval-gazing! If you're curious, I'm an INFJ (green) using the Myers-Briggs.) The StrengthsFinder assessment helps identify your strengths--"connectedness," "empathy," and "intellection," for example--with the assumption that you can be much more successful (in your business) when you build on strengths rather than trying to fix weaknesses. 


I've been thinking about this perspective as it could relate to parenting, especially special-needs parenting. The undercurrent in a lot of therapies for autism is that we're working on a deficit: the child needs to talk, needs help playing with toys, needs support for interacting with others, needs to work on eye contact. This is an oversimplification, of course, but it does seem therapies target flaws. How successful can this approach be in the long run? And what is the message about themselves that our kids come away with, even if we see results from the interventions? Ugh. Insert a big pang of mama worry and guilt right here.


Don't get me wrong: I want to continue to send my child to speech therapy, for example, in the hope that some day he might have some speech. But what we used instead a strengths-based approach, one that built on Soren's proficiencies?  For example, some of Soren's strengths include a keen visual sense (my coffee-obsessed boy can spot my coffee cup hidden on a shelf in a messy kitchen in seconds--ahem), great gross motor skills, and a love of books. Perhaps some of our therapies for him should build on these strengths. I've been thinking about physical activities in particular. What if we tried to go swimming every day, instead of every week, and added gymnastics. How might Soren's self-esteem and emotional connection with us be buoyed even more? And how much more fun would that be than, say, chair-based work?


This idea is explored in Raising Resilient Children with Autism Spectrum Disorders. The authors label strengths "islands of competence," which I love. They point out that "Given their social and emotional struggles, it is not surprising to find that children with ASD are often the recipients of more correction and less positive feedback than children who meet their developmental milestones. As parents we must strive through our words and actions to correct this negative/positive imbalance, searching to identify and reinforce or children's interests and islands of competence so that they are increasingly like to develop a social resilient mindset."


This is all just food for thought right now, but I'm really brainstorming what it would look like to place more emphasis on working with Soren's gifts than addressing his apparent weaknesses. 

A walk around Greenlake

Some quick iPhone pictures from a walk around Greenlake on a sunny afternoon earlier this week.

Hey, moss!

Here's to a relaxing long weekend!

A love letter to my son

My dearest boy,

I am so blessed to have you as my son. What an exuberant, complex, funny, cuddly, and adorable little man you are.

I love that I can see you smiling from behind, because your cheeks get apple-round. I love that your favorite thing in the world is to go swimming with Daddy. I love that you still prefer to fall asleep in the crook of my arm.

My day is brightened when I see you first thing in the morning, wrestling in bed or touching my cheek. I love your obsession with books and the way you tear up a bookshelf looking for just the right one. And I get such a kick out your new-found somersaulting skill. I think you're quite proud of that one, too!

You are such a brave boy. Some situations, events, and places are frightening, even excruciating for you. You try so hard to let us know why, and then you often surprise us by overcoming your fears and happily delving right back into those places.

You've shown me so much about how silly expectations are and how much better life can be when we stay in the here and now. You reveal to me every day how limiting words really are and how much we can communicate without them. You made me understand how a heart can be broken--wide open.

But let me be real clear on this: Your role is not to make us feel a certain way. You don't ever need to change our perspective, although that's exactly what you've already done. Your presence alone is what we adore. There's nothing for you to do to earn our love. We're already completely smitten.

Much love,
Mama

Goodies

Casting on for a new sweater. It's a pretty big commitment for me, but I'm doing it as a knitalong at Fiber Gallery in Greenwood. The pattern is Grayling, and the yarn is a silk/wool blend. I'm still at the swatching (and admiring the skeins) stage.

Self-care

I've read no fewer than three blog posts this week about self-care when you're parenting a special-needs child. I'm listening, universe.

The idea, of course, is the old Put Your Oxygen Mask On First theory: you have to tend to your own energy needs so you'll have something to give others. And let's face it: sometimes parenting our kids can be energy-sapping, mind-numbing work that leaves us craving escape. A friend of mine has a recurring fantasy of just jumping in the car and driving somewhere, anywhere, as long as she's alone. And I confess there are many days that I am just waiting for the kitchen clock to show 5 pm so I can drink that glass of red wine with less guilt.

I'm trying to make self-care more intentional, rather than reactionary (a few zoned-out minutes on Pinterest, shall we say?). Here's my list of favorite energy-boosters:

• A night in a hotel, complete with room service and trashy TV (let's start big, I say)
• Meditation, or even five deep breaths.
• Doing something crafty, like knitting. Even just planning for future creativity is relaxing for me. An hour in a fabric store? Yes, please.
• Making a nice cup of coffee and actually sitting down to enjoy it. 
• A nap. (You've seen the title of this blog, right?)
• Exercising outside.

What are your favorite ways to decompress? And how do you ensure that you make time for your oxygen time? I'd love to hear your ideas.

Glorious and wretched

Life is glorious, but life is also wretched. It is both.

... Gloriousness and wretchedness need each other. One inspires us, the other softens us. 

They go together. 

--Pema Chodron, Start Where You Are: A Guide to Compassionate Living

Today

Found this on my iPhone and loved how it showed a little moment of stillness at the playground. 

A lesson in waiting

Soren and I ventured to Arena Sport's new bouncy house area-- part of a huge old Magnuson hangar filled with bouncy house structures. I had this idea that Soren might like it, since he generally loves bouncing (especially on our bed). And he did love it--but in his unique way.

The hangar is a cavernous open building, filled with a health club, a kids' soccer club, an eating area, and this bouncy area, among other things. Talk about sensory overload: it was loud and echoing, filled with people, and with these giant structures that Soren hadn't seen before. So we took time for Soren to get used to it--I'm talking at least half an hour. First just sitting in a corner, biting nails, then rolling on the carpet in a patch of sunlight, then running back and forth among the bouncy houses, and finally, entering one of the structures on his own and gleefully discovering that, hey, you can bounce in this thing!

It was such a good reminder for me that Soren may need more time to process his surroundings. If I hadn't waited so long with him as he adjusted, he never would have had that sheer joy of jumping. I'll admit that many times I've seen him in distress or even uncertainty and just bagged an activity, perhaps out of my own embarrassment or impatience. (Oh, so you don't like sledding after 30 seconds? Bam, let's go back inside.) Thank you, little guy, for nudging me out of my expectations and letting me enjoy the moment with you.