Tag Archives: disability

Class of 2020 Challenge & Rare Disease Day

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Are you sick of the Class of 2020 Challenge on Facebook?

I found all the baby photos adorable, but started to get a little tired of all the prom, varsity sport and college sweatshirt photos. ln fact, I was getting ready to toss my laptop out the window (although in our new ranch it might not have been such a big deal). I’ve already been through the torture of watching Jack’s former classmates have their photos posted all over social media as they graduated high school and moved on to their next adventures. And, now I was sitting watching their younger siblings move on, feeling a little sorry for Jack – for myself, until my friend Jen asked if I wanted to join in. “Jack’s class of 2020”, she reminded me.

Thanks Jen. 

When your child has special needs, they get the luxury of three extra years of education paid for by the state (we can only hope that that continues – don’t forget to vote in November).  Thanks to Jen, I realized that Jack IS class of 2020 and who cares if he’s three years older!

As I sort through the photos of Jack over the years, it’s a constant reminder of before and after ALD. A reminder of what life could have been. What life could have been had we known that ALD was lurking in his body. Had we known and treated him a year earlier, Jack would likely have been class of 2017. He would be in college asking for an emergency Venmo for the Uber he had to take to go to the Trader Joes to get Riced Cauliflower. Now we just have Anna making that request.

Saturday is Rare Disease Day – or as I like to call it – The Day When People with Rare Diseases get to Remind People WITHOUT Rare Diseases that We Exist.

I’m not asking for donations, just to read about Aidan’s Law , sign THIS and pass it along to every single person you know (I was asked to send it to 5 people, but that’s lame).

If you haven’t seen what a rare disease looks like at our house, take a peek HERE.

And, if you want to see Jacko’s Class of  2020 Challenge – here you go!

Love, Jess

Meet the Torrey Family

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I’ve been hinting about this for a while, but I was told that we weren’t allowed to share it until now — lawyers were involved. Several months ago, our family was asked to participate in a project that bluebird bio was working on. They wanted to include short videos sharing different ALD stories to a new website, www.navigatingald.com. A (much needed) effort to educate the medical community and newly diagnosed families.

Bluebird bio is a bio tech company who has been working on a treatment for ALD – gene therapy — a trial that has been very promising for our community. But, bluebird bio didn’t just want to stop at finding a cure, they have been determined to educate both the medical community and those families that are hearing the letters A L D for the first time.

We were happy to participate, but did wonder how bluebird bio was planning to represent our family. Hoping that it would be honest, but not difficult for us to watch and to share. When I first watched the video, I was overwhelmed. Very proud of where our family has landed and also profoundly aware that many would not see our story as a “success story”.

Our family’s ALD story WAS a success story 13 years ago. Jack survived. Jack survived having a late diagnosis and a transplant at a hospital that was learning about the disease as we all were. Honestly, the fact he left the hospital with his vision and hearing and ability to walk was nothing short of a miracle.

Now our story is an example of what newborn screening and new treatments are going to prevent. Proof of how complicated life can be without the benefit of an early diagnosis and having time to find a team so that you can monitor your child and get them treatment when/if needed.

Of course there is part of us that pauses to wonder — What if we had known when Jack was born? What if we had known just a few months earlier?

We know the answer, but we can’t change the past — we can only help to change the future.

Thank you bluebird bio for allowing us to be part of this incredible project.

Take a peek at our ALD story and then take a peek at the other stories. All beautiful, honest, raw and helping to change the future of ALD.

CLICK HERE

Love, Jess

 

 

A Lot of Tomorrows

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We enjoy today and hope for a lot of tomorrows.

That’s how I answered a question I was asked yesterday on one of my Facebook pages. The person was asking how to live knowing that there will likely be a “future loss”.

You might think it was a cruel question for parents with children with ALD – or any special situation leaving their child medically fragile, but trust me – it’s a question that we all have struggled with.

The pain of knowing that you will likely outlive your child and the fear that you won’t – who, other than you, can you trust to care for your child? You worry about a simple cold leading to a fever and then a seizure. You worry about what you might find when you open your child’s door in the morning. You try to plan for a future, but limit the future to a few years, not decades. Worried that being too greedy might somehow jinx things.

Everyone worries about their children — typical and fragile. Anna has no underlying conditions, but we worry about her making poor college choices that could put her in danger. We worry about her traveling alone, working too hard, falling asleep with a candle still lit. The other night I woke up at 3:00 am and spend two hours worried that we had somehow pressured her into following a career path towards medicine (I called her in the morning and asked if she felt pressured,  “You’re nuts, but I love you” was her answer. 

Everyone worries about their children, but the worry about special/fragile children is more profound, because IT IS more real.

Despite all the worry, your special/fragile children eventually teach you not to waste time with too much worry. You need to enjoy today because tomorrow is not assured. You need to slow down and enjoy the sunsets, the song playing on the radio, the newest episode of Impractical Jokers.                       .

I’m not saying that I never have moments where fear/despair/dread/depression take over. I bargain with the universe. I yell and cry. But, then I remember my role in all this is to help provide Jack the best life possible. I get up, wash my face, move forward and enjoy today.

The parent who asked the question yesterday was new to this life. It will take some time, but I know they will find their footing and it will be their special/fragile child that will lead the way.

The fact is folks —  we are all fragile. We are all going to die. None of us are assured unlimited days. 

Our family tries to enjoy and appreciate as many moments as possible. I encourage you all to do the same.

Love, Jess

ALD Family Weekend 2020

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It took our family a while to feel like part of the ALD community. Part of it was that the ALD community was hard to find in 2007 — Facebook was just for the cool college kids back then and, although the internet was already full of information, it was tough to sort through and finding communities  like ours was a challenge. To be honest, we were also completely overwhelmed with what we were going through.

Early on, I did find a few other parents whose sons were struggling through transplant. It was difficult because this disease (especially with a late diagnosis)  didn’t lead to many happy stories. So I hid for a long timed. Just focused on Jack and his ALD journey (oh, and raising Anna and walking our dogs and keeping house and teaching art and writing). I didn’t really become super active with the ALD community until Smiles and Duct Tape was published and Kathleen O’Sullivan-Fortin (one of my ALD heroes and board member of ALD Connect) reached out and encouraged me to be more active. Thank you Kathleen;)

I’m so impressed by the ALD newborn screening parents. Many of them have jumped right in. Speaking at conferences, talking to legislators, and bringing the ALD community even closer together. I’m inspired by them and very optimistic that their families are the beginning of the next chapter of this disease. A great chapter.

Alison and Nic Adler’s son, Lucas, was diagnosed through newborn screening in California and they wasted no time. No only is their beautiful boy is being monitored by top doctors, but they are working tirelessly to spread the word and bring our community even closer together. They have organized an ALD Family Weekend at the Painted Turtle Camp in Lake Huges, CA May 1-3.

Make sure to check out the video on the link below:

www.aldfamilyweekend.com

Our family is looking forward to this wonderful event. ALD folks – sign up today!!!!

Love, Jess

PS Our first ALD friends, the Cousineaus, are also working to make this happen. We can’t wait to see them again in person!

Invisible-At-First-Glance Disabilities

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The last post got a lot of attention. Many seemed ready to go find minivan lady and make her pay for her comment. Others commiserated on having to fight for recognition for their own invisible (or invisible-at-first-glance) disabilities.  

I was disappointment that Peter was forced to spend time explaining his and Jack’s disabilities to a stranger. The last thing a person with a disability should be forced to do is educate, but unfortunately it often comes with the territory.

Especially when their disabilities are invisible-at-first-glance.

When out and about with Jack I often watch people as they try to figure things out. As if I can see the thought bubble on top of their head, “Why is that mom holding her son’s hand/feeing him/taking him into the bathroom?” “Why is he rocking back and forth?” “Is he licking the wall?”

Sometimes people will stop me and whisper, “My grandson/nephew/daughter/neighbor is autistic”. If I have the energy, I try to explain that although Jack shares some similar behaviors, he in fact has Adrenoleuokodystrophy. “The Lorenzo’s Oil disease – did you see that movie back in the 80s?” If I am tired, I just smile and nod my head knowingly. People seem to love having the connection and who really cares if people think my son is autistic vs effected by ALD.

There have been times that Jack’s invisible-at-first-glance disabilities have lead to awkward moments — like the time we got reprimanded by a woman at a Broadway theater. Jack had been annoying her by grabbing the seat in front of him – her seat. She had asked him several times to please stop. I tried to hold his hands, but Jack is strong and managed to break free for one last grab. She turned to me and loudly whispered, “PLEASE control your son!”

I felt terrible, understanding that it was her night out too and nobody needs to have a stranger touching their chair. At the intermission, I approached her, apologized and explained that my son had challenges and sometimes wasn’t able to control his behavior.

Her eyes widened and then filled with tears as she apologized again and again. That made me cry. There we were, two women in tears, waiting for the intermission to be over so that we could get back to our seats and pretend the whole thing never happened. Jack must have sensed the tense mood in the air and never touched her seat during the second act.

Jack has his share of disabilities and medical complaints, but at first glance, it can be hard to know that he needs a handicap placard. And, Peter has worked tirelessly to overcome and work around his challenges. I guess I can’t fault minivan lady for looking over and seeing two dashing young men get out of their car and think that maybe they hadn’t earned that spot.

All is forgiven, but I do hope that she learned that disabilities aren’t always clearly visible and perhaps she should save her scolding for people who don’t stop for pedestrians or text while driving or turn left into the parking spaces on Maplewood Avenue.

Love, Jess

What is a REAL Disability?

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Jack is blessed with many friends, but he has one bestie. A guy that shows up to our house and Jack doesn’t hesitate to get up and race to greet him at the front door. Even, like today, when Jack had been sitting on the toilet. I apologize to any neighbors who happened to be looking in our windows at the time. Jack can’t help himself when Peter arrives.

But that is not today’s story.

Today’s story is about what happened when Peter and Jack left Speir Drive to head to their favorite spot — The Able Baker. Maplewood Village being a weekend destination for many local folks, the boys needed to do a few loops before finding a free parking spot. It was a handicap space nice and close to their favorite bakery. It’s not just Jack who qualifies for the “luxury” of convenient parking. Peter – Jack’s buddy and Community-Based Instructor/Mentor – also has some challenges. Peter got out of the car and then helped Jack out of the passenger-side, when a women in a minivan stopped her car and loudly ask if they would please, “empty the spot for someone with a real disability. Someone with a wheelchair or walker.”

I don’t know what exact words were exchanged, but Peter was forced to explain that he and Jack were REALLY disabled. That they both qualified to fill the spot and for safety reasons they needed to be close to their destination. I’m sure that Peter said it in a way that was polite and clear. THAT’S who Peter is.

I might not have been polite, but I would have been clear. Judging peoples limitations from the front seat of a minivan is ridiculous and ranking disabilities is crazy. I’m the first person to shame people for needlessly using parking reserved for people with disabilities, but if someone has the placard who am I to need to know WHY they have it. Maybe their disability requires them to use a wheelchair or a walker. Perhaps it’s a heart issue or a back problem OR maybe it’s that maneuvering their companion through a crowded parking lot is dangerous.

So, if you were in Maplewood today and happened to see two handsome young men, enjoying some large cupcakes before getting into a car that was parked in a handicap spot – don’t worry. They earned the spot.

Love, Jess

hApPy NeW dEcAdE!!!!

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We are prepping for a new year full of celebrations and new beginnings — a new nephew arriving, Jack’s graduation, finding and sending Jack to the best adult program on the planet (we’re getting closer) and Anna surpassing her Chilean-born mother in her ability to speak Spanish (Anna left for Salamanca on Saturday).

We’re also prepping for a new decade full of celebrations and new beginnings. There will be many. I’m sure there will be many, but I know how life works. You can’t plan life too far in advance. It’s a waste of time that just leads to the universe laughing at you. So, I will leave it at . . . 

The 20s are going to be wonderful — LET’S CELEBRATE!!!!

Wishing everyone a very happy, hApPy holiday from our home to yours. May 2020/the entire decade be filled with joy, love and peace. And, laughter . . . lots of laughter!!

Love, Jess

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50

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Next month I’m turning 50. I’ve always loved my birthday. For me birthdays are a reminder to reflect on the previous year, an excuse to celebrate the future and … I love presents (honestly, I LOVE PRESENTS). I didn’t just revel in celebrating 10 and 17 and 21, I embraced 25 and 30 and 40, but this birthday feels a little different. It’s 50. 50 sounds so grown-up. 

Shouldn’t I be more responsible? Shouldn’t I know more? Shouldn’t I be able to complete at least the Monday New York Times crossword puzzle? Shouldn’t I have learned to switch to water after the second glass of wine?

Like many of my friends reaching this milestone, I’m finding myself thinking about what I’ve accomplished in the last 5 decades and what I see shaping up for the next half of my life (I could make it to 100).

Overall, I’m fairly pleased with my accomplishments thus far. No fortunes made or much notoriety, but I have plenty that I’m proud of. I survived school (which was tough for me) receiving a bachelor’s and even a master’s degree. I married the love of my life, and with him survived more ups and downs than most couples. I’ve had careers as a photographer, a teacher, a writer and even gotten away with being a nurse when needed. I’ve had three books published (you thought Smiles and Duct Tape was the only one? There’s also Squeeze and Jack and the Pumpkin). I’ve managed to always surround myself with incredible people, who seem to enjoy my company and hold me up when I’m falling. And, I’ve raised two remarkable children – by far, my proudest accomplishment.

Of corse there are things that I regret. I wish that I had learned more languages (at least not lost my first language – Spanish). I wish I had traveled more and not given up on my photography. I wish I invested in Amazon and Apple early on. I wish I had always treated people the way I wanted to be treated. I wish I had learned to always think before I spoke. I wish I had taken more videos of the kids growing up. I wish I had learned how to play the guitar, knit, and sail. . I wish I had pushed for an MRI for Jack, just a few months earlier . . . 

There are things I would change if I could, but for the things I’ve had power over – I’m (mostly) proud. It’s the next half of my life that has me stumped. Dan and I will not have the empty nest that many of our peers are experiencing, but things are quieting down a bit. I’ve been thinking of going back to school to start another career, but am wondering if 50 is too old to start something fresh. I’ve been working further on a few book ideas that have been torturing me from my sleep. I’ve even been thinking about starting a program for adults with special needs – if we can’t find it, we may NEED to build it. All sound ideas, but I’m waiting for that kick in the ass that has always found me when I’ve needed it.

Until then, I am going to busy myself by searching the internet for “good careers for people of a certain age” and “appropriate haircuts for 50-year-old women”. I will also continue to work on finding the perfect adult placement for our boy and maybe sign up for some guitar lessons.

Love, Jess

I will also work on remembering to switch to water after the second glass of wine. No promises.

 

Just another day at HHS!

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Since I’ve shared that we’re in the process of searching for the perfect adult program for Jack, people keep asking, “What’s the perfect adult program look like?”

I start by describing a safe, warm, friendly environment. I mention the need for art and music and dance. I describe that we prefer it to be filled with Jack’s peers – ideally peers that he’s known for years. I add that it needs to be lively and fun, while also being therapeutic.

I try to find all the right words, but today Jack came home with video of him working with his therapists at school. Who needs words??? Just another day at CPNJ Horizon High School. As I watched the video, I kept thinking that all me need to do is recreate Jack’s high school.

THIS is what the perfect adult program looks like!! People say it’s impossible, but we’re not gonna quit until we find it!

Love, Jess

 

OURMatch.com

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I’ve been hanging out with an old friend who is returning to the dating scene. It’s a whole different world since Dan and I went off the market. Now there are pictures and profiles and lots of time on the computer. You need to really think about how you present yourself and what you share. All while being super cautious when pouring through prospective daters profiles – things aren’t always exactly as they appear. I’ve had friends share hysterical stories about first dates that quickly revealed ridiculous exaggerations about everything from jobs to height to age to mental stability.  Times are certainly different in the world of dating, but the basics still remain — before you start looking for a partner, you should know what you are looking for AND there always needs to be some chemistry;)

We are knee deep in our “find the perfect adult program for Jack” project. As Jack and I were on our way to our latest tour, I was talking to him about what I’d read online about the program and how bright and clean the facility looked in the photos, “But who knows JackO. We won’t really know until we get there”. As I was chatting with my boy, it occurred to me that the process is similar to modern dating – we’re looking for the perfect match and starting the search online. 

Like dating, our first step has been to figure out what we’re looking for. What do you look for in a partner?

Jack and I have always been drawn to a similar type of person. Cute, smart and funny. Pluses include a love for music and adventure. Negatives include people who don’t appreciate good food, strong hugs, and a good lick once in a while AND liberal political beliefs (okay – that last one might just be me). When we sat down to think about what we’re looking for in a perfect adult program, I kept thinking about this list.

Cute translates to a clean and comfortable facility. Smart means that the program balances time in the facility with programs out in the community, Smart also includes incorporating creative activities with life skills and providing 1 to 1 support as needed. And, funny – the most important – is that the program has the energy that Jack has become accustomed to. We love Horizon High School so much, but it has set us up for a tough comparison.

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We really enjoyed the adult program we saw last week, but we didn’t have much in common and no sparks flew. So, we’re going to keep on looking for our next one and only. We’ve even been tossing out ideas for a new program to be established. It’s not going to be easy, but I keep reminding myself that, although we may need to kiss a lot of frogs along the way, we WILL fine our perfect match.

Love, Jess