Monthly Archives: August 2020

New Tricks

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I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.

Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.

Lately we’ve witnessed another new skill that at first had us laughing.

Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”

When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.

It was Jack.

I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).

After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.

Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).

Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.

So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.

AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.

Love, Jess

ZOOM LIFE and “this is a REALLY happy mom” smile

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I’m glad I waited before turning on our camera. I needed a few minutes to get my bearings. My priority was to keep Jack calm and happy. It was hard enough to hide my reaction from him —  I couldn’t risk anybody else witnessing any tears of awkward stares.

It’s one luxury of ZOOM LIFE — People don’t need to see you, until you’re ready.

Once I took a deep breath, I put on my best “this is a REALLY happy mom” smile and hit “start video”.

Last week Jack started logging onto some virtual activities with the adult program he will (some day) attend in person. The lovely staff sent us a list of options ranging from art classes to Zumba to music to virtual outings. We were excited to start participating and eager to have a bit of a schedule; especially with Anna heading to Baltimore before too long.

I knew that once we logged in we would “meet” many of Jack’s new peers, and we also knew his peers ages range from 21 — 70+ and that they all (like Jack) have rather complicated lives. 

Let’s go back 13 years to when we walked into The PG Chambers School for the first time. I managed to keep that “this is a REALLY happy mom” smile, but tears filled my eyes as I was introduced to Jack’s new peers. Our family hadn’t been part of the special needs world until Jack was eight-years-old and thrown in with no time to prepare. We hadn’t known many children with such complicated disabilities before the day we walked into the school. I know it sounds awful, but it made me sad and overwhelmed that Jack was suddenly part of this world.

The same thing happened when Jack started at Horizon High School (now Pillar High School).Teenagers with disabilities were not a population I knew and everything looked bigger and more complicated. My “this is a REALLY happy mom” smile needed to be firmly planted before I walked into the school that first day. Maybe two.

Of corse within weeks, first at The PG Chambers School and then at Horizon High School, the student’s disabilities faded and their personalities shone. Quickly, I found I no longer focused on the wheelchairs and tubes and braces. Instead, I would focus on the smiles and the wonderful energy that always filled the space.

I pride myself on being open-minded and non-judgmental. I don’t define people by their successes or their failures. I don’t judge people by their talents or their challenges. But, once in a while, I need to pause to let my emotions catch up to my brain.

Last week, as we logged on to the virtual program, I needed a second to look around at the boxes of new friends and take a deep breath, before hitting “start video”. Within a few minutes we were dancing Zumba as a family, but we weren’t dancing with our usual Torrey gusto. While ZOOM LIFE can make things a little easier, it is a bit harder to connect and feel part of something new when everyone is just a box on a screen.

If the staff at the program asked how they thought Jack and his family were adapting to their program, I’m guessing they would say that we are a lively family and seem happy. Our family IS both lively and happy, but we are human and sometimes it takes us a moment. Until then, we will dance until we can really boogie — I imagine that the staff will see the difference when it happens. AND, I am guessing it will happen soon.

I hope everyone is enjoying the tail-end of the summer and getting to do a little boogieing!!

Love, Jess

hApPy BiRtHdAy JaCkOOOO!

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When I was 22, I had just moved to New York City and was working for an advertising agency. I had my last “first date” — with Dan at the Democratic National Convention (because he’s always been the coolest guy on the planet). I was busy contemplating whether I should continue working in advertising, return to being a photographer’s assistant or apply to graduate school. Nothing was set in stone, but I was happy and my adult life was underway. 

Today Jack turns 22. He’s living at home and working on getting through Season 4 of Jersey Shore. He has ongoing dates with Maria, Monica (his caregivers) and Anna. He’s not sure wether he’ll be going to an adult day program this year, doing virtual activities via zoom, or just hanging out for the next few months. It’s not the life I would have imagined my son would be living at this age, but he’s happy and his adult life is underway. 

While Dan and I are stressed about what’s next for our boy, Jack continues to enjoy every inch of his life. He’s not worried about when his adult program will open or running out of hand sanitizer. He’s not fighting with people on social media about wearing masks. He’s not wondering if our country is heading into a depression or if we will ever feel comfortable getting on a plane again.

Jack enjoys today and trusts that tomorrow will be even better. For a silent person, he’s my loudest teacher. 

Yesterday we lost power — as did many as Isaias managed to rip it’s way up the east coast. I spent most of last night worrying about whether our power would be restored quickly and if the generator we’d set up would somehow leak carbon monoxide into the house. I worried about if the branch that had taken down the power line had first hit our house and that there was a leak that we hadn’t yet seen. I worried about how I would be able to clear out the branches from the pool so that Jack could swim and what I was going to make for Jack’s birthday dinner. I got up this morning and looked at Jack’s sweet smile and decided that for Jack’s birthday I’m going to honor him by adopting his beautiful attitude — at least for a day;)

Today there will be no worries on Speir Drive — just gonna hang out and embrace the day. Oooooh, and swim in a pool full of branches and leaves and order some food for dinner!

Happy Birthday JackOOOOOO!!!!

Love, Jess