H and I are the same in many ways: we don’t really like shopping or malls but we love the thrift shop with its lure of the find and the potential of treasure. Buying H’s clothes there means they are soft, and comfortable, and can be inexpensively replaced if they are ruined in when he’s inventing in the shop, or climbing, or…???
This time – H needed pants. We have a method. He gets to look around for treasure, whilst I load the cart with pants that may (or may not) be a possible match. He and I meet up when I have the load of potential garb ready for trial – and he has usually found some wonderful thing that will be his reward for trying on all the stuff. I know he doesn’t like trying on clothes – so this is the pleasurable thing at the end of the task (and no – new pants are not an intrinsic reward for my 14-year-old). I ask for permission to use the largest changing room – which is also always the one on the end. This helps a bit, one less sensory issue – one less overwhelming thing.
I take a deep breath, reach deep to muster every ounce of patience, and the onslaught begins. I used to buy clothes and bring them home for H to try on – and just return what didn’t fit. We have moved on from that… one small step at a time (big steps all).
It is Wednesday night… the store is almost empty… but open late: ’till 9:oo.
I gently wrangle H into the changing room as he eyes the cart. I out–manoeuvre his query about exactly how many pairs of pants are within – by explaining that I cannot tell because of the way they are piled – but I think it is about 10 minutes worth.
I deftly switch the subject to my wonder at his find… a pristine NES Tetris Game circa 1985. It is a long pass to my retro gamer boy, who catches it… figuratively… and can talk of little else for the next few minutes. Effectively distracted, we begin to build momentum for the task ahead.
I ask H to pass me pants as they fit – or don’t – and one at a time, I trade for a new pair, sorting and encouraging as we go. We make a kind of game of predicting whether the pants will be passed under or over the door each time. I am organized. Probably, too, I over-prompt and unintentionally add to the noise and sensory overwhelm. I work to be aware of this and keep the mood as light as possible.
Over – under – over – over – under: pants are flying in and out. Some fit – most don’t – and this entire scenario is difficult for H. Music, lights, small room, expectations, and Aaaack… trying on clothes!! I get it. I find it overwhelming too.
But I am there to support – build skill – lighten the mood – create a game or distract…
H is loud – and funny too, but not every utterance from within H’s stall is polite. His wit and sweetness are mixed with a tone that is cheeky – sometimes rude and disrespectful. He is at capacity – and I knew this was coming. This is why I remembered to breathe – to dig deep for my patience – and I am ready to advocate if needed.
A lady emerges from the booth beside H.
She whispers: “Does he always talk to you like that?” (and I am grateful at least for the whisper)
“No – not at home. But this is difficult and he is overwhelmed by the lights and sounds and expectations. This is all he has left to complete the task right now – he is at capacity with his sensory issues and is doing his best.”
Her stance shifts: “Oh – I am so glad I didn’t say anything – I have a daughter with CP and sensory issues – I get it.”
I smile, “Yes. You get it then. I appreciate you asking and not judging – this is how we build skill.”
H and I make it through the heap of pants.
Three pairs make the cut… along with the coveted NES Tetris game cartridge.
H looks at videos by the checkout. We have an ongoing arrangement: he knows at checkout time he needs to be with me if his treasures are to be purchased.
I take another minute, before we do the line up. H looks at videos by the checkout – and I pretend to look at the items in the locked case. But really I am just calming… reclaiming my poise and releasing my stress… remembering to breathe. I too am at capacity.
On the way home, I share how great he did and list the positives. I also share that a woman asked me if he always talked like that to me.
“I’m sorry mom. I didn’t mean to be rude or disrespectful.”
“I know. I don’t need you to be sorry. You are learning to handle things so well, and it was not easy to try on all those clothes. Right now you are learning to understand and explain what you need. Being able to do this in a way that sounds okay to others will take time – and sometimes you may yet not be able to do so.”
“Oh mom… were you embarrassed?”
“No! Definitely not! I am proud of you! You did great tonight. I did think it was important to tell you what the woman thought. I think it is important to get to a point to be able to talk to others respectfully even when you are upset, so that they will want to hear your message. That is a skill – it’ll come…”
And now I am writing this tale and I cannot sleep. It is early Saturday morning – or perhaps very, very late Friday night. I cannot stop thinking about our dialogue and I can’t help but reflect that approximating typical is a difficult path indeed. I worry about the pressure of my expectations… the sirens of typical that sing me to their rocky shores. The strengths of my child – should not inversely become a liability to extending him understanding and support.
I certainly cannot pretend I’ve got this figured out… I am struggling. It scares me that it is so difficult to unwind – to get right. And too, there exists in this the possibility that I may not get it right, which is simply not an option!
The lines are not clearly drawn – it is a tangled thing.
This place where expectation and identity meet…
H cannot yet sing his advocacy – and I have to welcome it – support him in his strengths and stretches. I cannot jump upon the one thing not yet achieved and somehow let that be dismissive or overshadowing of the amazing resiliency and accomplishments of this child.
A year ago I suspect I would have told him I was embarrassed – but now I see this differently. I also would have felt like my explanation to the questioning woman, was making an excuse – rather than advocating for the needs of my child. I have changed. My advocacy is changing. My knowledge and vision for what my child needs, and my ability and willingness to listen to what it is he is saying about what he needs, continues to grow. I no longer want to force his silence for my comfort. If his words aren’t sweet… there is a reason! I am building an understanding that my child does not choose his responses to make it difficult for others. He is doing his best.
I don’t expect I got this one entirely right… but I will continue to try…
Next steps…Related Posts: • Welcoming Your Dissent: A Poem • Treasures I found at the Thrift Shop: Autism and Understanding ___________________________________________________ 30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2013)