Tag Archives: ALD

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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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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Guardianship – Jack made it easy(ish)

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I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)

Morning Selfies

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Every morning Jack and I take a selfie. It’s a gift we give ourselves for surviving the morning chaos.

I’ve described our mornings before, but here’s the short version — teeth, toilet, laundry, shower, get dressed, toilet, downstairs, dogs, medication, hydration, waffles (don’t judge), say good-bye to Anna, toilet (often followed by cleaning the bathroom floor), shoes, jacket, breathe AND sit on the stairs and take a selfie.

This morning’s routine was particularly messy and Jack and I were feeling a little discouraged until we looked at some of our most resent masterpieces. Jack can always turn a sour mood around with his smile – and his scrunchy face.

 

Happy Friday!

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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10 days.

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Ten days until the release of Smiles and Duct Tape and I’m suddenly in a full-blown panic.

Here’s the thing – As excited as I am to get the book out there, I’m nervous about letting it go. I keep wondering if I’ve forgotten anything or anyone. I’m used to writing 500-word blog posts that I can edit if needed – a book feels so permanent. I’m also worried about the content. I’ve shared our family through the blog for almost ten years, and have been honest, but not quite THIS honest. The book is pretty raw. It follows the first 1000 days of our journey with ALD, and I don’t hold back on the reality of what we went through. I hope that readers appreciate the candor.

If you know our family (or read this blog), you know the ending. You know that Jack survived transplant and so did our family. You know that Dan and I are still married and that Anna has turned into a remarkable young woman. You know that the Torreys are pretty much back to being the family we once were – just with a few complicated issues.

So why did I write this book?

1.) I told people I was writing a book and have a history of not finishing projects. There was no way I was going to “pull a Jess” with this.

2.) I wanted to thank everyone who has helped our family and I’ve never been good with thank you notes.

3.) For typical/normal/non-challenged (insert appropriate PC word here) families to see that differently-abled/complicated/special (insert appropriate PC word here) families are just families.

4.) I want Smiles and Duct Tape to finds it’s way to families going through crisis. Not necessarily ALD (or even illness),  just lives that have turned upside-down. I want to share how our family managed to survive.

So, the book is written and in ten days is will be out there. I’m nervous, excited, and kinda feel like I’m going to throw up.

To PRE-ORDER your very own copy of Smiles and Duct Tape – CLICK HERE!

Love, Jess

PS I’m happy to speak at schools or book clubs or to anyone that might want to hear about how our family survived and accepted a new normal. Please email me to something up.

Meet the Torreys

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It’s getting closer.

The manuscript has been sent to the printer and by the end of this week we should have a copy of SMILES AND DUCT TAPE in our hands. Not your hands . . . you need to wait a tiny bit longer. The current release date is October 24. That’s two weeks folks!

In the meantime I am working on ways to promote the book and one idea I stumbled across was making a slideshow to introduce the readers to the book. SMILES AND DUCT TAPE is a book about our family. I would like to introduce you to The Torreys.

 

 

Love, Jess

If you would like to PRE-ORDER your copy of SMILES AND DUCT TAPE, please CLICK HERE.

 

ps I tried to add these images, but it was too late;(

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the laughter continues thanks to the (impractical) JOKERS

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We have the most amazing friends. Love and support always, dinners when needed – even offers to walk the dogs (well, not EVERYONE offers to take Finn, but people do fight over Keegan). We’re always astonished by all the love and generosity, but sometimes we’re really blown away.

Our dear friend, Alice, is far cooler than most of us and knows “people”. She shared Jack’s laughter with her buddies at truTV and look what happened.

           

For a boy who hasn’t spoken in almost ten years, it’s amazing how many people he’s able to reach with something as simple as a laugh.

Think about it folks – sometimes a laugh is all it really takes.

Tru TV should be on everyone’s radar. It’s CHANGING lives folks! And, they didn’t just send us these videos, they have invited us to a live show on 11/3 at the Prudential Center. The Jokers and Nitro Circus. Everyone should order tickets now!!

Thank you Alice and Michael and the greatest (impractical) Jokers on the planet!

 

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Love, Jess

PS Please don’t judge my messy desk and Jack is NOT picking his nose. That’s his “I’m really into what I am watching face”.

nothing short of magic

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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

 

Summer Round Up

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Summer’s coming to a close and I think I’m ready. Sure, I will miss the long days and the family time, but I think I need to get back to a schedule and SHHHHHHHHH – I’m looking forward to the house being mine for a few hours each day. Is that so bad?

This summer was filled with activity – birthdays, Santa Fe, BBQs, fun. Block Island, as always, rated high on our list of favorite adventures. We didn’t get quite as much time there as we’ve grown used to, but the reasons were good. Dan’s job had him busy with travel (work is good), Anna had an amazing internship and started looking at schools (work is essential), and the best reason to miss Block Island time was that my brother Philip got married to a lovely woman who we are excited to welcome to the family. Welcome Kate!!

 

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This summer also included fun activities like applying for guardianship and Social Security for Jack. Although not as entertaining as time on the beach or celebrating a wedding, I need to share that Jack’s 18 Birthday Project has not been a disaster. There have been a few tears, some money, some doctor’s appointments, some paperwork and some long lines to deal with, but it hasn’t been as painful as I’d imagined.

I’m someone who prepares for the worst. I’m not sure if it’s a product of our “situation” or if I was born this way (I can’t really remember much about life before), but I seem to have a need to picture the worst case scenario. I know this sounds like I enjoy doom and gloom, but it’s the opposite. I worry that doom and gloom might someday kill me if I don’t brace for it.

So when I can, I prepare. When Jack has a fever, I pack a hospital bag. When I see we have a 1/2 tank of gas in the car, I fill it. When we are running low on wine . . . you get the picture. I prepare. So, when I know I need to complete a pile of paperwork providing information to prove that that my eighteen-year-old son is so disabled that he is never expected to be able to work or live independently – I brace myself for both the emotional pain and the dread of dealing with bureaucracy.

I hope I don’t jinx things, but so far, it’s been pretty painless. We hired an attorney that did a remarkable job at guiding us through the process of guardianship without making us focus too much on the details. And, we spent Monday at Social Security where we lucked out and were placed at a desk with the sweetest man. He calmly asked us questions and kept looking at Jack’s sweet smile and saying, “I really want to make this easy for you guys.”. I’m glad I brought Jack. I’m not sure I would have gotten that kind of treatment without him. So all of our paperwork is in and now we wait. I REALLY hope I don’t regret sharing how easy this all was . . .

Enjoy this last blast of summer before the chaos (or quiet luxury) of the school year begins!

Love, Jess

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FYI – The first round of edits of the book are complete. I still can’t believe this is happening.