Tag Archives: smiles and duct tape

Thanks for including me JackO

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I was shaking when Dan, Jack and I arrived at Jefferson School this morning. I’ve been a teacher most of my adult life, but that doesn’t mean I’m a natural at public speaking. Standing in front of twenty students and a pile art supplies is WAY different then standing in front of over a hundred people with nothing but some notes and a copy of Smiles and Duct Tape to protect me.

I’ve now had a few opportunities to speak in front of audiences. I keep thinking it will get easier, but I still feel the adrenaline racing threw my blood and every bit of my body trembling. I wonder if that ever goes away . . .

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Luckily, this audience was kind.

There were a few familiar faces in the crowd, and I could see Jack and Dan sitting in the back of the library. Their smiles always give me strength. So, once the kids arrived and settled themselves in their seats, I dove in and the talk seemed to go well.

When I was approached about talking to this group of fifth graders, I wondered what I would talk about. February is “Kindness” month at Jefferson. I am pretty nice (unless you bring out the Scorpio in me), but any expertise I have in kindness has been earned because of the kindness that our family has witnessed over the years.

Today I talked a little about what our family has gone through and all the wonderful ways people showered us with kindness. I discussed how people can be kind and how kindness is contagious. I even shared a passage from Smiles and Duct Tape. I’m proud to announce that I maintained the attention of a room full of fifth graders for almost an hour – FIFTH graders!

Once it was time for Q&A, I was shocked by how many thoughtful questions were posed about our family, about ALD, and about Jack. Everyone seemed very interested — did I mention they were fifth graders!?! It was a remarkable group.

We ended the presentation by introducing Jack and he showed-off by presenting everyone his favorite (and only) sign – LOVE. Honestly, I’m pretty sure that alone would have made the day a success;)

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Jack then gave each person a high-five as they left the room. I did most of the talking today, but Jack is the real teacher when it comes to kindness. I’m just lucky that Jack includes me in his speaking engagements.

Love, Jack

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Be Kind

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This Friday I’m speaking to a group of fifth graders about kindness. I guess our family has witnessed enough kindness to make us a bit of an authority on the subject.

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I’ve been sitting down trying to figure out how to approach the topic in an age appropriate way. I don’t want to scare the kids, and I definitely don’t want to bore them. Fifth graders can be a tough audience.

I can list some of the wonderful acts of kindness that have been showered on our family — the meals, the gifts, the long hugs, the kind words in the form of letters and texts and emails. BUT I also think I need to share a bit about how to be kind.

There might be a few exceptions, but most people are born kind. Bad behavior directed towards others is either taught or a product of circumstance. Parents need to be careful about what they teach their children. Like all bigotry, ranking people in importance by their abilities is a reflection of that person’s own insecurities. If you need to put someone down just to feel strong, shame on you. Teaching hatred to your children – that’s called bad parenting.

I’m assuming that the crew I’m talking to on Friday comes from good parents that would never intentionally teach hatred. I think I need to focus more on the fact that perhaps these kids haven’t been taught about how to treat people with disabilities. Often mean behavior towards people with disabilities is simply ignorance and/or fear. People don’t know what to do, what to say or where to look.

Here are some simple ideas:

* Stop thinking of people with disabilities as “disabled people”. They are people first. Whatever disabilities they might have are simply a small part of who they are. Look passed their wheelchairs or braces or quirky behavior and approach them as people. Say “hi”. Smile.

* You don’t need to pretend. If someone has trouble walking — open the door for them or ask if you can help. If someone can’t speak — see if you can get them to give you a high five. If someone is in a wheelchair – you can comment on their cool equipment. I can’t speak for all special families, but we would much rather have people approach us with smiles and questions, than to pretend we’re invisible.

* Treat people the way you would like to be treated – always a good idea.

* Be kind/good-natured/caring/loving/warm/sympathetic/hospitable/friendly. It’s good for you. It’s good for the other person and IT’S CONTAGIOUS!

Love, Jess

I think I may start with the Harry Story. Harry taught me a great deal about being kind. I’m also going to introduce the kids to JackO – he is the master at teaching kindness.

 

It shouldn’t be a secret

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If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying “JACK ONLY” and there’s a lingering smell in the air. We had someone working on the alarm … Continue reading →

GOODBYE 2016!

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I’m pretty sure all of us feel that 2016 hasn’t been quite what we expected. Years rarely live up to their promises, but this year has been particularly tough. So many heartbreaking losses. And, I don’t just mean the folks … Continue reading →

I want to be like Harry’s mom

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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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A Room Full of Duct Tape

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I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading →

When “Thank you” isn’t enough – THANK YOU!!!!!

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I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

Love, Jess

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B Nice

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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