Walk with me, Matt

“Walk beside me, Matt.” It’s a simple phrase and a gentle nudge for my 27 year old son to step in line with me as we walk through the store.  Matt obliges.  His long legs only needed two extra strides and there he is, on my right hand side, walking in step with me. 

“Remember Matt, you are an adult, just like me, and you don’t need to walk behind me – that’s for little kids.” 

As I speak, a mom with three small children go past us – mom tiredly pushing the shopping cart as her three little ones walk, twirl and skip behind her.  Matt sees the parade before us and looks at me.  He smiles.  It clicks.

I can’t remember when I first walked into a store without carrying my son.  I can’t remember the first time we walked together with me holding his little hand.  These transitions were slow and not really purposeful, they just happened as natural as could be. 

I do, however, remember the first time he went into a MENS room instead of coming with me to the LADIES room.  I remember the fear I had, how my stomach was tied in knots and my mind whirled with all the “what ifs”.  He was between 7 and 8 years old.  I suppose for a neurotypical child that age it would be a bit extreme to finally allow such a minor event as restroom privacy, but for my son, Matt, who is moderate–to-severely autistic and mostly non-verbal, it was a huge step forward.  Allowing him to be on his own, even for a short time, was an extremely stressful event for me. 

I remember the first time I let him shop alone, Matt was in his early teens.  We were already in the store and he was right behind me, trailing along as we went from aisle to aisle.  I turned around and looked at my son.

“Do you want to shop by yourself, Matt?” His face lit up as he examined my face to see if I had really just said that.  “Yes!” he replied. 

I went over a few ground rules of shopping alone and off he went, almost skipping with joy.  My husband looked at me in disbelief. 

“I can’t believe you just did that.” He said worriedly. 

“Well, he needs to be able to do it and there’s no time like the present to start.” I replied, sounding much more sure of my decision than I really was. 

I remember we made it a game.  We shopped for all of 5 minutes before we went on the hunt for Matt.  Once we spotted him we stayed in the shadows, watching him and giggling like little kids.   He was fine.  We always found him happily immersed looking over Lego kits, reading magazines, or examining computer games.   This was a routine for many months before we stopped hunting and spying and just relaxed and shopped.

I also remember the first time I let him order his own pizza.  Matt had just turned 20.  He had always gone in with me to order.  Then one day he used his own ATM card and bought his own pizza – I was there only to help him speak (I told him the words to say).  He’d already had many years of practice with his ATM card and once the words came out he dipped into his pocket and pulled out his wallet.  He fumbled a bit with the wallet and he stuttered trying to give his order, but he did it. After many months of him giving his own pizza order with a safety net (me) I knew he could do it completely on his own.  I never planned it.  It just happened.  One day when we went for pizza I unexpectedly changed our routine.  I pulled up to the curb and gently nudged him.

 “Go ahead, go in and order your pizza by yourself.  You know how.”  Again – his face lit up.  He did it . . . all . . . by . . .  himself.  As he walked back to the car, pizza in hand, he held his head high and strode confidently, as if he had just been given the keys to the kingdom. 

Yes, I remember those steps.  I remember the way his face lit up every time he took another step toward feeling like a man, the steps that signaled to me that he could be independent if I just walked with him a little while longer, just a little further.

I don’t remember the day it dawned on me that my son could do anything – seriously, anything – he put his mind to.  Seems I have known it all along, but I still stepped cautiously, waiting for the one hurdle that would stop him. In the back of my mind, I was always prepared for the obstacle that would be too much.  The one that would smack me back to the reality of conventional wisdom of the time, that my severely autistic son would not be able to have a life of independence. 

Yet every hurdle to independence was laid down as Matt moved ever forward.  Along with every hurdle was another nagging worry, “Would this be the one that keeps him from living on his own?”  And time after time I had worried for nothing.   Matt had this.  What I learned over the years was that the conventional wisdom was completely wrong, and throughout each transition from step-A, to step-B, I stayed hopeful.  I never thought about what my son “couldn’t” do, only about what he “could”. 

As we traveled up one hill and down another to get to where we are today, (Matt will soon be moving to his own apartment) I found one of hardest obstacles on our road was simply being able to convey the meaning of the sentiment, “different, not less”.  Matt, with all his great strides toward getting to this point, had never really viewed himself as equal.  For years and years I searched for a way to make him understand that his autism didn’t make him less of a person.  Although I had given him encouragement at every turn and taught him the skills he needed to fly on his own, I hadn’t gotten it through to him that he was not less for having autism.  Matt hates it so. But the truth is being autistic did make him feel less, so he tried hard to do the socially acceptable behaviors, make the socially acceptable replies, and he watched others, the neurotypical people, as his role models on how to get him there, to the place where he could feel not less, but equal.  It’s OK for my son to be autistic.  It’s OK for him to not want to be.  But it’s not OK for him to feel less because of it.  So maybe you can imagine how bad I felt when it dawned on me that when my son walked behind me, even by just one step, he was signaling to me that he felt less.

I don’t remember when I embarked on trying to break that nasty habit, only that has taken years. I would wait for him to step next me but as soon as I would begin to walk again, Matt would routinely wait a fraction of second so he could follow.  Again I would stop and wait.  We would take a few steps together and then his gait would slow – just a second – and I would be leading once again. It must have appeared to others witnessing our interaction as some sort of strange dance.  Stop and wait, stop and wait, stop and wait.  The goal was for him to walk beside me without my asking.  Matt read my body language as he always did but this change confused him.  The years came and went and even though it still remained a long sought after prize, the dance did seem to get a bit smoother. I considered my ‘gently nudging my son to walk with me’ as a type of dance practice.  Someday, I hoped, someday my son would feel the need to walk beside me and this silly dance would be over.

Even though I don’t remember the first time I asked him to walk beside me, I do remember how he felt each time he did.  I remember how simply being asked was viewed as such an honor, and how his face lit up just like it did when he was given the chance to go on his own to the restroom, to shop alone, and to order his own pizza.  Always happy to oblige, he would take a few large steps and slide in beside me with a smile on his face. But it never lasted very long and after a few brief moments in the sun he would revert to his old routine and follow me instead  - and his smile would dim.

 It’s was the need for an invitation that was a thorn under my skin.  I could see that when he walked behind me that he didn’t carry himself with that same sense of purpose and he didn’t shine with that wonderful confidence that he exudes when we would walk together – for when he walked beside me he glowed.  It emerged without constraint, emanating from his being unfettered and as natural as breathing.  We were just two adults walking together, side by side - equals.  For a young man who has used non-verbal communication to “speak” to me his whole life, this simple form of body language conveyed immense amounts of feeling and emotion to me. 

So I just kept nudging, “Walk with me?” regardless of whether we hiked a trail, shopped in a mall, or simply went for a walk down our road.  I yearned for my dear son to please just walk with me. I wanted him to feel it naturally, to fall in step without my asking and at the onset of each opportunity I begged silently, “Come on, Matt, just step right up next to me and match me stride for stride. I know you can do this” and I then waited to see if maybe this time he would.  It’s such a little thing I suppose, but it was important to me.  It was important to Matt too; he just didn’t realize it yet. 

As time went on it became my obsession.  I didn’t just want him to walk with me anymore, I needed him to.  When you live with someone who is mostly non-verbal you read every other form of communication, not the least of which was body language. I just knew if he could do it naturally, without prodding, that his body language would reveal that powerful message – a feeling of equality.  I just knew that in the initiation of that one simple movement of stepping in beside me without being asked (and staying there) he would be telling me he felt whole.  I believed that in that one movement he would reveal an unconscious affirmation of his own self worth.

So when Matt saw that mother of three parade past us in the store I knew he understood.  It was in his eyes.  It was in his smile.  It clicked.  Matt realized he was no longer that little kid his mom fretted over if he was more than 2 feet away.  He was no longer that child his mom spied on as he shopped on his own.  He wasn’t the kid whose mom ordered pizza for him.  He was an adult, a soon to be an on-his-own adult, and he became empowered.  Matt took another large step, and we continued on through the store, side-by-side.  I never nudged him again. 

My son realized, thankfully, that he was equal. He was in charge of where he wanted to go.  His destiny was in his hands.  Sure, he was autistic, but he was OK.

Different, but not less - never less.  Body language is powerful stuff.  Nowhere is the sense of equality portrayed any clearer than in how one walks with another.  That simple phrase first spoken by Temple Grandin is not just about whether someone neurotypical thinks of someone autistic as different, not less.  It’s also about how the autistic individual feels about themselves.  It’s been a hurdle – one much harder to clear than it sounds. Matt now walks with me, matching me stride for stride, confident, head held high and a smile on his face every where we go.  And he does so without my nudging him, without hesitation, and he stays in step.  You can be sure there’s a smile on my face too as I feel the power of that movement – the underlying confidence radiates from my son’s very soul.  Yes, he’s different, but not less.

He gets it.  He is . . . equal.