I want to be like Harry’s mom

Twenty years ago (years before I was even pregnant with Jack), I was a middle school art teacher in a suburb on Long Island. One day, the principle asked me to come down to his office to discuss something. He told me that there was a boy in the district who was profoundly autistic. He wasn’t mainstreamed in any classes, but he really loved art. The principle asked if I would be willing to have the boy join my seventh grade class.

I didn’t know much about Autism, but I did know about tenure, so I nodded my head and said that I would love to.

The next day I was introduced to Harry. Harry could barely speak, couldn’t look me in the eye and had a host of very unusual behaviors. Initially, I thought HOW is this going to work? I was a new, inexperienced teacher and had 26 other seventh graders in the class – seventh graders!

I was surprised and delighted that over the next couple of weeks I didn’t just get used to Harry and his quirky behavior, I kinda fell in love with him. There was something magical about the way that he was able to tune out the chaos around him and focus on his work. And, the feelings where mutual — before long, part of Harry’s daily routine was to stop by my classroom several times a day to hug me. Long awkward AND awesome hugs.

As Back to School Night approached that year I was super excited about meeting Harry’s mom. I felt like I needed to tell this overwhelmed/exhausted women that she was doing a great job – that Harry was a great kid. I was going to make her day.

The night arrived, and as my seventh grade class of parents filed in, I scanned the room for Harry’s mom. I’m not sure what I was looking for but I was certain I didn’t see her. There was not one person in the crowd wearing a “I’m a special needs mom” hat. I was disappointed, but moved on with my “Why Art is the most important subject in your child’s curriculum” speech. When it was over and the class started to empty, a woman walked up to me and introduced herself, “Hi, I’m Harry’s mom”

I was floored. She’d been there the whole time and I hadn’t recognized her. She wasn’t at all what I expected – she was showered and had make-up on. She was even smiling. I paused a little too long and then made things worse by hugging her and telling her how much I adored her son and great I thought she was. That hug made Harry’s hugs seem pretty normal.

As she removed herself from my arms she said, “Thank you so much Mrs Torrey. THAT is great to hear, but I know how amazing Harry is. I’m not just a special needs mom – I’m Harry’s mom. Harry’s life might be a little more complicated than his peers, but I have always tried to not let Autism take over our family. I have other kids, I have a job and a husband and friends. If I let Autism define us, I am letting Autism win.”

I’m not much of a believer in “all things happen for a reason” but Harry’s mother’s words have stayed with me for over twenty years.

When Jack got sick and it started to become apparent that his disabilities weren’t temporary, I remembered that day meeting Harry’s mom and thinking that if I could just keep her attitude my family just might survive.

Love, Jess

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non-flossing, slacker mom

jackOOO

How many of you floss every day? Be honest. Don’t give me the answer you tell your dentist. I want the truth. Do you floss daily or a couple times a week when you’re given the luxury of an extra few minutes in the bathroom? Now, I want you to picture flossing a sixteen-year-old boy. A strong teenager who doesn’t follow directions and is not afraid to bite.

I wrestle with Jack every morning. Literally. Getting Jack ready for school is a work out (I have 2000 steps on my Fitbit by 8:00 am and toned arms to prove it). It’s not a routine that I resent, but it’s not a part of the day that I look forward to either. And, I’m certainly not anxious to add anything to our morning regimen.

I get Jack out of bed at 7:00 am, lead him to the bathroom and sit him on the toilet. I give him some time alone, while I throw his sheets and PJs in the wash (a daily requirement following what Dan and I refer to as Jack’s nightly “pee pee party” ). I return to the bathroom to shower, dress and pin Jack down to put on his deodorant. The last thing we do before heading downstairs is brush his teeth. By this point, I’m usually glancing at my watch, counting down the minutes before the bus arrives. We still have medicine, hydration, breakfast and his leg braces to deal with.

Some mornings I do pause long enough to hear the words of his dentist whispering in my ears, “You really need to floss his teeth every day.”

Jack has a dentist, an oral surgeon, an OT, a PT, a speech therapist, a pediatrician, an endocrinologist, an orthopedist, an ophthalmologist, two neurologists, and ALD specialist. Each of them provide me with their own list of daily obligations. There is no way that we could incorporate everything into our schedule. My job is to pick and choose which of these obligations are necessary, which are a good idea when we have time, and which are ridiculous under any circumstances. Of corse, I’m not always completely honest with our choices.

“Yes, we floss every day. It’s a little tough to get in there, but that doesn’t stop me.” Is my usual answer when we see the dentist.

I tell our doctors exactly what they want to hear. I want them to know we appreciate them and respect that THEIR specialty is what is holding our little man together. I need to feel secure that if we ever reach out for anything, they will pick up the phone and not think of me as the non-flossing, slacker mom.

I love being Jack’s mom. I also love being Anna’s mom, and Dan’s wife, and a daughter and a friend. I like walking, teaching my art classes and writing in my blog. I might even enjoy going out, eating rich food and drinking too much wine. I’m not a model parent. I’m just a normal parent, trying to balance what’s necessary to keep my kids safe, my family happy, and me sane.

I’m just hoping that I’m not alone. Please tell me that I’m not the only person who doesn’t follow all the rules. Jack rarely gets flossed and he never uses his leg braces on the weekends. My dogs sometimes miss their monthly dose of heartworm medicine. Anna texts while doing her homework and I always let her break curfew if she has another parent willing to drive her home. We order chinese food at least once a week and I buy those “ready made” salad mixes. The TV is often on when we eat dinner (around the island in the kitchen, with paper towels as napkins). I could go on and on, but I don’t want you to judge me  — too much.

Love, Jess

I’m heading to my own doctor next week. I can already hear myself, “Social drinker? One or two glasses of wine . . . on weekends? That sounds about right.”