“How old is……are you?”

The little girl in the pink rain boots corrected herself as her eyes darted from mine immediately to A2’s. He was staring out the window of the observation tower where we all stood and flapping in excited anticipation of a single engine plane landing right in front of us.

She licked the open space between her missing teeth and twisted her body from side to side. I looked back to A2 since he wasn’t answering her.

“A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.

“Sevuh.” he said without looking way from the window.  I touched his back and then his chin and he looked up.

“Eeeeelehhhvuh” he replied, eyeing me closely for the cue.  I looked back to the girl to see if she understood.  She bit her lip and looked up at her own mother.

“Yes, you ARE eleven!” I clarified and then paused to gauge interest.

“A2….you could ask her ‘how old are YOU?'”  I stated in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.

Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.

STOP.

When you read this, what do you take away from this interaction?  How did it make you feel?  Did you picture yourself as the parent?  As the little girl in the pink boots?  As A2?  Or maybe you pictured yourself as the mom of the girl?

Since I was there, I will share my perspective.

• Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around. He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten.
• I saw an opportunity to practice social language and articulation. Another child asked him a direct and appropriate question in a shared environment.  In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
• I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next.  It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
• When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
• I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
• I felt frustrated A2 missed a social opportunity.  I felt sad he would rather flap his hands.  I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.

I imagine the little girl’s perspective looked something like this:

• I don’ t understand why he talks like that.
•  I know when people want to know how old I am they ask me. They don’t ask my mom.
•  I wonder if he wants to know my uncle is flying a plane?
• He didn’t know how old he is.  I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
• I’m glad that lady asked me about my weekend.  I love cupcakes with sprinkles and was glad I could share my favorite part.

A2’s perspective might be:

• Humming of airplane motors sounds like the humming in my body.  The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin.  This is the only place I get to see anything like this! I’m so excited!
• Mom is tapping me.  She wants something.  When I respond to her, she will then leave me alone and I can finish watching.  I better look up.
• That little girl has nothing to do with this experience right now.  Why does she need to know how old I am when there are machines flying into the sky?!

Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences.  I may be completely wrong.  The only perspective in which I truly have full insight is my own as evident in the richer description.

WHAT IF…….

Is it possible that my intervention was sending a negative message because I didn’t fully accept where my child was in the moment?

Because I expressed honest thoughts and feelings over the scenario, does that mean I perceive my child who happens to be disabled as less?

Were my choices in this situation potentially fueled by own differences?  Would it matter if they were?

If I did nothing, would the girl have pressed on?

Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out?

Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?

Should I have insisted he turn from the window?

Should I have answered everything for him?

Should I have explained what she could do to connect with him in the moment?

Should I have insisted the mother help her child connect with mine when he didn’t answer?

Do I represent all mothers of all autistic children?  Mothers of all children with Autism? All Autism Moms in this situation?

Does she represent all 7-year-old neurotypical children?

I am a parent.  I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting.  Sometimes I give in to things when I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.

As a society, we are all learning together what it means to be inclusive, accommodating, and how language can affect disability rights.  The growing pains with this process are palpable.

Subcultures and their preferences exist in any community and are often elusive to the general population. But these issues tend to sit right below the surface for the group affected, creating a dissonance that effectively can halt any movement forward outside of the culture.

A simple/not so simple example:

Many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference.  Yet, in academia, person first language is still being regularly taught. Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate, regardless of my perspective in family systems theory.  When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice. The other has told me he doesn’t want to refer to it at all because he doesn’t care, doesn’t know why it matters or why he would ever have to explain it to anyone to begin with.  Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.

It is all about perspective.

There are many voices making up the autism community.  There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities. Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others.  Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options.

My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum.  My experiences and access and circumstance dictates certain necessities.  I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.

There will always be Hannahs in pink rain boots who approach disability as a curious difference.  Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always.  We all have to be better.

Day 1 2015: A is for Aides

Day 1 2016: A is for Advocacy