Showing Love through Multiple Connections

Love Is in the Air is more than just a one (American) hit wonder by John Paul Young. It’s also a sentiment spurred by the made-up holiday of Valentine’s Day. I’d like to take advantage of this sometimes over-commercialized day to seize the opportunity to show love for people in the autism community. And as you are reading this, that means you are part of the crowd we love!
  • Are you a past or present board member, founder, paid professional, community partner, or a generous volunteer who has supported the autism community via Autism Connection? 
  • Could you be one of the seasoned folks who knew us as the original “ABOARD” – or Advisory Board on Autism and Related Disorders – who got this “party” started? 
  • Are you one of our supportive friends at ACHIEVA, a foundation giver, an individual donor, someone from the corporate world who has decided to sponsor us, or a phenomenal community group who has fundraised for us? 
  • Could you be a researcher friend, a compassionate judge, or a public servant we call on at all hours with questions or emergency situations needing attention? 
  • Are you a family member or autistic friend who chooses us for support, or who works as our colleague?  Or a marathon runner, or a personal friend or family member who supports our work?
Most likely you fall into many categories.  Any “yes” answers means we love YOU!

Love Takes Many Forms

Is using an emotional word like love appropriate in a professional setting?  I believe it is in the sense of agape, defined on dictionary.com here:

“agape

Original Greek: ἀγάπη (agápē)

Agape is often defined as unconditional, sacrificial love. Agape is the kind of love that is felt by a person willing to do anything for another, including sacrificing themselves, without expecting anything in return. Philosophically, agape has also been defined as the selfless love that a person feels for strangers and humanity as a whole.”


What Brings Our Thoughts to Love

Here’s why I’m thinking so hard about this now. Today we received our third request to cite a blog post – this one from Community Circles Restorative Justice Society (CCRJS) based in Ladysmith, British Columbia. Another was a request from Assets High School in Honolulu, Hawaii, and Cerebral Palsy Guidance in Syracuse, New York reached out to collaborate on bringing awareness of dual diagnosis of autism and cerebral palsy for a campaign in March (stay tuned).

This made me consider how we got here. And the logic chain goes like this: Tammi wrote the blog post cited today, found on our website that is funded by givers, the optimization of which was prioritized by our Strategic Plan originally written 12 years ago by board members (some of whom are family members or autistic people), shared by our community partners and friends online, maximizing our visibility so people in British Columbia could find, read, and use our words to benefit others we will never meet. Phew!  It was not hard to make that list because I often reflect on our roots and the huge crowd that has the autism community’s “back”, and it is all true.

Love is in The Air

I’m going to close this because I really need to hit “stop” on John Paul Young who’s been playing on repeat as I write this, permanently etching these lyrics into my brain for the foreseeable future.  

In the spirit of “sharing is caring”, here’s your earworm for today, with apologies to literal and visual thinkers for using that term. It’s okay if this is stuck in your head too  –  Here are those words for you to ponder.

Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)
And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (your eyes…)
Love Is In The AirIn the whisper of the trees (whisper of the trees…)Love Is In The AirIn the thunder of the sea (thunder of the sea…)
And I don’t know if I’m just dreamingDon’t know if I feel saneBut it’s something that I must believe inAnd it’s there when you call out my name (call out my name…)
Love Is In The AirLove Is In The AirOh oh oh
Love Is In The AirIn the rising of the sun (of the sun…)Love Is In The AirWhen the day is nearly done (is nearly done…)
And I don’t know if you’re an illusionDon’t know if I see it trueBut you’re something that I must believe inAnd you’re there when I reach out for you (reach out for you…)
Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)
And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (in your eyes…)
Love Is In The AirLove Is In The AirOh oh oh, oh oh oh, oh oh oh

 

Love Is In The AirLove Is In The AirLove Is In The AirLove Is In The AirOh Love Is In The AirOh Love Is In The Air


The Peaches and Cream Autism

Years ago, my autistic daughter participated in what they called a special needs sporting event. I was quietly cheering her on, and another parent asked, “What is she doing here? Helping?” I shook my head and explained that she, too, was playing as a child with a disability.

“What’s wrong with her?”

“Nothing is wrong with her. She just has autism.”

The other parent’s eyes glazed over as she remarked, “Not the real autism. She has the ‘peaches and cream’ autism.”

I gave no response.

This brief, somewhat painful interaction has stuck with me for more than a decade. First, the image of peaches and cream as it relates to levels of perceived heightened ability makes no sense. Second, the inner workings of the mind and body are generally difficult to observe because they are not overt. So those with the perceived simple “peaches and cream” autism seem to have no place. They are too visibly able to fit in with those who have overt disabilities, and too invisibly disabled to seamlessly connect with nondisabled peers.

Where do we land?

Unpacking the Peaches

Over the years, I’ve ruminated on the peaches and cream autism statement, and I have repeated the nonsensical phrase many times. Sometimes in an effort to try to figure it out; sometimes in an effort to gauge other’s understanding. Results were mixed.

My younger, non-autistic daughter, much like me, was trying to unpack the concept.

And she did, in a way that finally made sense. She being a mere 15 years old, made the revelation extraordinary.

“Maybe you have the peach fuzz autism too, Mom.”

“Peach fuzz?” I laughed. “It’s the ‘peaches and cream’ autism. And you are probably right.”

“Oh! I thought you were saying peach fuzz because it’s light and soft and hard to see.”

A large pile of peaches

Light and soft and hard to see

Peach Fuzz

The way my mind works, I pictured a peach with its soft, fuzzy outer skin covering the fruit’s flesh. This led to an exploration and possible conclusion to the peaches and cream conundrum. And it makes sense in relation to autism and hidden differences.

The peach’s fuzzy exterior has puzzled experts, with no definitive explanation for its presence. However, one prevailing theory suggests that this textured coating serves as an additional safeguard for the delicate peel, which is susceptible to premature rot.

Peach fuzz exists even though it is difficult to detect, and it exists for good reason.

When I shared my findings with my daughters, the younger one sighed. “Peach fuzz on the face, I meant.”

We’re still looking into it.


Let the Children Lead Us and Teach Us

One day a week I take myself to the office, the rest of the week I work remotely. The fluorescent lights in the office are not kind, and it takes me an hour to de-escalate myself once I get home. Sensory overload is real and it is hard. I wasn’t always aware of my sensory needs, and I still struggle with coping, but my son taught me how to identify obstacles in the environment. They were always there, and sensory overload affected me, but I am a product of the 80’s and 90’s growing up, and we certainly didn’t talk about sensory needs. You just dealt with it, or didn’t, but regardless you did it quietly.

Fast forward to having a child who was diagnosed with autism.

As a parent of a child on the spectrum, I had a large learning curve and I needed to maneuver it quickly. One day he didn’t have autism, and the next he did. Now I know, autism was always a part of him, this is what I mean by learning curve. In the beginning, I was circumventing the curve by doing everything others told me I needed to do to “cure the autism”. The focus was on changing him, not on creating a space where he could thrive. If he wasn’t in therapy or working on targeted skills, we were wasting precious time to “fix” him. False. False. False. 

Let me stop here and replace cure with cope and also say that speech, occupational, physical therapy, and skill building can happen in all the places all time. Children need space to be children and their adults need space to just be supportive adults. And while we’re replacing words in our vocabulary, let’s replace compliance with cooperation. But we can talk more about compliance vs cooperation in a future blog. 

We have so much to learn from people, especially children. Once I began focusing on coping, rather than fixing, everything changed. When I learned to listen to what my son was communicating but wasn’t verbally saying, everything changed. My son changed my entire view moving forward and made me realize I needed to reflect inward. The space I was trying to create for him to thrive, I learned, I also wanted. I didn’t want to just “get through it” anymore.  

Actively listening to my son smashed my rose colored glasses and showed me the beautiful world of diversity and inclusion. I learned how to identify and advocate for what I needed to be comfortable. I learned that asking questions and genuinely wanting to get to know about people and what is important to and for them, helps us all grow and create safe spaces. I learned that as I’ve shared how I feel or what I’ve experienced, many others say “me too!”, which creates a welcoming environment to share what is in their hearts and in their minds. I learned to meet people where they are. Even though I’m much older than my son, it’s been a life changing experience to learn together that neither of us needed fixing.  

This is a reminder to let the children lead us and teach us.

E.R. Heffel