Thanks for including me JackO

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 . . .


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;)



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


nothing short of magic


Last night Dan and I were in the kitchen catching up when we both stopped mid-sentence, “What’s that sound?”

We’ve all been asking that question a lot over the last week. We listened again and quickly realize that it was Jack. We could hear him clearly from three rooms away. It’s nothing short of magic to hear our son. Thank you TruTV!

For everyone who is under the impression that our family is always doing cool, innovated, exciting things all the time – I hate to disappoint you, but you’re sorely mistaken. Most afternoons Jack climbs off the school bus happy, but exhausted. He has a snack and some water through his G-tube and settles down on a pee matt in front of the TV in the den. He watches TV for hours. I always thought parents that allowed such things were lazy, but it’s become part of our routine. It gives Jack a break after his long day of school adventures and it allows whoever is in charge to get stuff done.

Jack is pretty easy to please and for years he has seemed happy enough with the old standby shows on TeenNick or Disney, but lately he’s seemed a little bored. Everyone’s taste changes over time. Sometimes we forget that despite Jack’s challenges he is still maturing and it occurred to us that he might not be into the preteen selections we were forcing on him. So, last weekend I was hanging out with Jack wandering around the Fios guide in search of a good alternative. We stumbled on a channel called TruTV. Loving anything “reality”, I clicked to see what was on.

If Bravo was created for middle-age housewives, TruTV was created for teenage boys and anyone who appreciates teenage boy humor (this includes our entire family). The schedule seems to be rather limited in their content, but Jack doesn’t seem to mind – it’s all new to him. It’s inappropriate and ridiculous and Jack loves every second of what’s on. We haven’t heard him laugh this hard since we spent time with Uncle Pat this summer.

I often use the word silent to describe Jack. It’s mostly true – he doesn’t speak a word or hum or cry out. He can’t yell if he needs us or make even a simple sound on command. It’s hard to really appreciate his silence unless you spend time with him. By far, it’s the hardest part of life with ALD.

Luckily, one sound that ALD did not steal is Jack’s laugh. It’s spontaneous and honest and loud – almost primal. And, Jack has always been generous with sharing it with us. When something resinates with Jack, laughter pours out of him. His new channel might not be a great at Uncle Pat’s stories, but it’s pretty darn awesome!

Love, Jess


quietly clapping

As I looked through Jack’s backpack on Friday afternoon, I found a small whiteboard and a note from Monica (Jack’s school aide/school mom). She said that she had bought the board for Jack thinking it might be interesting, “He’s doing great answering questions. He’s so smart!”

I almost ignored the note. We get a lot of “great ideas” here at 26 Clinton Avenue, and most end up being less than successful experiments. The whiteboard lay on the kitchen island until later that night when Dan and I finally tried a few simple “yes” and “no” questions. Jack quickly and clearly circled the appropriate answers. We were impressed, but got distracted and didn’t think too much about it. Saturday we tried again with Anna, and she didn’t give her brother an easy time. She started asking questions, requiring Jack to read the options himself before circling the correct answer. Question after question he answered them all without hesitation. Eager to test how much he was reading, Anna took it a step further. She started writing out the questions silently. No hints or help. Jack didn’t miss a beat. He’d look at the question and circle the correct answer.

Over the last eight years we’ve seen hints that Jack could still read, but we had no idea to what extent. Until now, his fine motor skills have prevented much progress with holding a pen. Even something as simple as a circle was out of his reach. Now, Jack might not need to relay solely on his smile to get his point across. He may finally have access to words. AMAZING! Jack being able to tell us what he wants for dinner OR how he’s feeling OR what hurts. The possibilities are endless.

We’ve shared this update with some friends and family and the news has been greeted with high-fives, tears and hugs. Everyone knows that communication has always been on the top of our “wish list”. I think people have been surprised by our calm demeanor while describing this new milestone. I know we should be opening the champagne and dancing in the streets and we will – in time. We’re simply being careful. It’s self-protection.

Progress doesn’t always happen in a straight line and for people with ALD the road can be particularly inconsistent. ALD can tease you with progress than steal it back without explanation. This makes celebrating successes a little nerve wracking. Our family braces for good news as much as we do for bad news. I think every day that Jack is able to repeat his new trick/mind blowing triumph, we will feel a little more confident about celebrating. Until then, we are quietly clapping, dancing and doing summersaults.

Love, Jess

Our family has tried EVERYTHING to help Jack access language. It’s amazing that something as simple as a little whiteboard might be the start of a new chapter. Monica – we love you!!


Jack didn’t miss a beat answering this one!


Anna left this for Jack earlier today. He didn’t hesitate.

the talking dream

I remember the first time I heard my voice on my father’s mini-tape recorder. I was about four, singing Itsy Bitsy Spider. It sounded so strange. He’d taped me just minutes before, but I still questioned if it was really me. Although we live in these modern times full of videos, I’ve managed to avoid them. Not even our wedding made it to VHS or DVD or HD or whatever they’re calling it today. So, imagine how I felt when I sat down and watched myself sharing my story,  The Talking Dream, at Listen to Your Mother.

A few comments:

1.) Bangs don’t translate well with overhead lights.
2.) My hands move in a way that makes me uncomfortable.
3.) I play with my wedding band obsessively.
4.) I’m not a pretty crier.
5.) All this, and I’m still proud.

Check out the rest of the cast — I shared the stage with a talented crew!
Love, Jess


jacks smile

I’m sad to report that we didn’t win the lottery last night. I’m not sure why I’m always surprised when our numbers don’t match. A feeling of disappointment comes over me when we need to reshelf our “early retirement, Block Island dream house, pay off everyone’s mortgage” plans. Truthfully, money isn’t even what our family dreams about most. Our real dream is for words.

A friend of mine posted a question on Facebook yesterday, “If you could have one free day of any illness, what would you do?” THAT is a lottery that our family would love to win! I spent only a second before answering, “We would listen to Jack’s stories all day long.”

Jack does not speak, sign or write notes. Not only do I miss hearing him say “I love you Mommy”, but his lack of speech makes certain situations particularly challenging. We were at the hospital two weeks ago with Jack. He was clearly sick and not able to tell us what was bothering him. Not knowing if it was his stomach, his throat or his ears created the need for additional tests and extra worries. Even on a typical day Jack’s silence is complicated. His inability to call out if he needs us in the night sets Jack apart from even a young baby.

Strangers often have a difficult time understanding. They assume that his speech is limited or difficult to understand. I try to be clear, explaining that the only sounds Jack makes are sneezing, coughing and laughing.

“But how do you know when Jack’s hungry or sad?” I try to explain that although he can’t be specific, Jack is able to communicate most of his needs without words. When he locks his eyes on yours he is able to be quite clear. I’m not really sure how he manages this, but people who love Jack learn quickly how to read his eyes and his silence becomes less quiet. While he might not be able to tell you when he has a sore throat, he can fill a room with stories without saying a word.

It doesn’t mean that we are content with Jack’s silence. Seven years after ALD stole his words l still dream of hearing them. Dreams so realistic I can still hear the sound of his voice when I open my eyes. It’s hard to wake up smiling only to realize that it was just a dream, but I won’t trade those magical moments for a winning lottery ticket (even the $485 million variety)!!
Love, Jess

Jack does use an iPad and (mostly at school) has some success answering questions AND Jack is able to sigh one thing — I LOVE YOU.