Talk to me About Autism, It’s OK.

My friend Mari never treated autism like the white elephant in the room.

My friend Mari never treated autism like the white elephant in the room.

Friends are those rare people who ask how we are and then wait to hear the answer.” Ed Cunningham

Good friends are an absolute treasures, and I consider myself blessed to have a few really good ones. Unfortunately, I live with one less close friend; thanks a lot, cancer.

One of the things I liked best about my friend Mari was that she wasn’t afraid to ask questions about Evan. She was never uncomfortable bringing up the subject of autism. She was never patronizing (like telling me how cute my son was – which he absolutely is) or judgmental (making comments like: “Setting better boundaries would eliminate his poor behavior”).

I was glad that she never said things like, “I don’t know how you do it,” because there were and still are days when I wave my imaginary surrender flag and walk away. That’s hardly doing it.

Instead, Mari would occasionally say what any parent needs to hear, especially on a hard day: “You’re doing a good job.” And because she honestly meant it, those five words kept me afloat when I felt like I was drowning.

Mari never pitied me either because she recognized that everyone has challenges or she knew that there is no such thing as stress-free parenting. Every kid has his issues.  Plus – and it should go without saying – there is no reason to pity me. I feel very fortunate to have Evan as a son.

Mari asked questions about his progress with the same genuineness she’d ask about his siblings. Unlike many people, she didn’t assume that talking about Evan would be difficult or upsetting. My friend, the mother of four typical kids, would ask questions I knew others were thinking but felt afraid to ask for fear of being offensive. In reality, not asking is worse. She wanted to know what it was really like parenting a child with autism. She once asked if I wished he didn’t have autism or if having a child with special needs made it hard on my marriage or other kids. She was curious and comfortable bringing up anything.

Long before my friend was diagnosed with ovarian cancer, we’d talk candidly about our kids. But as she became aware that her diagnosis was terminal, our conversations became much more candid. Some of our most honest and memorable conversations took place in the last few months of her life. Those encounters made me realize that life is short and it’s important to say what’s on our mind.

Mari was one of my biggest supporters in my journey as a mom parenting a child with autism. How do I know this? Because she told me, in-between asking about him, about autism and about me. I wish I had told her how much that mean to me. I just never thought about it. At least not until now, more than two years after her death, when a well-meaning friend admitted she didn’t even like talking about her kids in front of me because they don’t have disabilities. She isn’t the only one. Many people are afraid to talk about Evan in the context of his autism because they think they’ll hurt my feelings.

Admittedly, when Evan was younger, parenting him was much more difficult. Managing his meltdowns, sensory issues and lack of communication were among our greatest challenges, and we were emotionally and physically drained. I was envious of families who didn’t have the same issues. Despite those feelings, I always wanted and needed people to ask about Evan because doing so showed not only that they cared but, most important, that autism wasn’t the white elephant in the room.

All of my children are wonderful, unique individuals with different strengths and weaknesses. Each one inspires me, challenges me and frustrates me in different ways and for different reasons.  Like most parents, I want to brag and occasionally complain about all of them – even the one with autism.

I cannot speak for other parents of kids with disabilities – I know some who aren’t even comfortable sharing their child’s diagnosis. But I can say that I wish more of my friends and acquaintances could be like Mari and not be afraid to mention the A-word. Autism doesn’t have to be a bad thing; it’s just different.

2 Comments

  1. Martha Mortis

    Jen- I am glad you had Mari as a supporter. She was well aware of the trials and tribulations of parenting and sometimes that is a hard subject to traverse with friends for fear of upsetting them. Mari’s questions and comments were always sincere and heartfelt. She was a true caring friend. Believe me, she got as much from you also. She valued you as a true friend.
    Martha, Mari’s sister

    Reply
  2. Denise Snow

    Thank you for posting this lovely description of Mari. Thank you for reminding us all about this side of Mari. She was the real thing as a friend.
    Denise (Martha’s sister-in-law, Mari’s friend)

    Reply

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