a love letter to CPNJ Horizon High School

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One of the highlights of my weekdays is when Jack’s bus pulls away.

It’s not that I don’t adore my boy, it’s just that I love letting go of my responsibilities and I know that Jack is off to have another great day at his school.

Jack’s been at CPNJ Horizon High School for five years and there hasn’t been a day since he started that I haven’t counted my blessings for finding that school.

The PG Chambers School was a hard void to fill. Not only had Jack received a great special education there, but they were there for our family as we came to terms with the fact that Jack’s disabilities were not going to magically dissolve. They held us up for years as we reached a place of acceptance.

When we were faced with finding a new placement for Jack, I was basket-case. I’d just wrapped my brain around being a special mom with a child, and suddenly I was walking into schools filled with young women and men with profound disabilities. It was a population that I didn’t know and it was overwhelming. Everything was bigger – bigger kids, bigger equipment, bigger changing tables.

Thankfully, the positive energy at the school quickly won us over. CPNJ Horizon High School is an incredible place.

Like a typical high school, Jack and his peers switch classrooms throughout the day – science, math, world languages, history, art, gym, yoga, karate. They learn everything from simple cooking and using household appliances like washing machines, to practicing making beds (Jack has yet to attempt those last few things at home, but maybe he will surprise me on Mother’s Day). When the kids are not in a classroom, you might find them out in the garden watering their veggies or on their adaptive playground or hanging out in the sensory room or maybe in the pool getting therapy (it’s been a while for JackO – they have a “3 strikes/you’re out” policy. You can guess what’s considered a “strike”;). There’s also a school store where Jack’s peers sell tasty snacks and clothing made by the students. Jack and his classmates also receive all the necessary physical therapy, speech therapy and occupational therapy seamlessly within their school day.

That’s just a typical day at CPNJ Horizon High School. Special days pop up often and Jack LOVES every second of these days. Each year CPNJ Horizon High School produces a play – filled with student actors — wheel chairs/walkers/speaking devices – nothing stops these kids. There are also costume parties, dance parties, sports days, movie days, even prom – that’s next Friday and I promise to share photos.

The greatest thing about the school isn’t really all of the activities, it’s the people behind the activities. The students are the stars, but it’s also the teachers, therapists, aids, nurses, custodial staff, cafeteria staff, administration. You walk into the school and it’s like walking into Disney World. It’s clean and beautiful and everyone has a smile on their face and a warm greeting at the ready. It’s a place where I am known simply as “Jack’s mom” and I answer to it easily.

So, when that bus pulls away each morning, my smile is not just about me being able to enjoy a few hours without diapers or medicine or responsibility. It’s about knowing that my boy is going to enjoy a great day. Thank you CPNJ Horizon High School. I love you;)

Love, Jess

If you would like to support Jack and his wonderful school, their annual Wheelin N Walkin Challenge is coming up soon. Every class walks/wheels proudly sharing their class banner. It’s a beautiful site to see. It also happens to be a fundraiser . . .

https://interland3.donorperfect.net/weblink/weblink.aspx?name=cpnj&id=71&cfifid=11

 

GOOD > BAD

Enough with the hard stuff – let’s celebrate!

A crazy few weeks around here and most of it has been WONDERFUL.

Last week, Jack and I had the honor of speaking at an event for CPNJ (the parent organization of Horizon High School). 150 employees were celebrating 5, 10, 15, and 20 years of service to CPNJ. We were asked to speak representing CPNJ families and sharing a bit about how their team has helped us. My nerves still cause me to jitter a bit when I speak publicly, but overall I think I’m doing a better job. And, looking out at a room full of so many people who have helped our boy, I felt extremely grateful. I did the majority of the speaking, but when Jack joined me on the stage, he really did steal the show. His smile is electric.

 

Then yesterday, we shared our story in a whole different way. Through Jack’s school, we were approached by a Taiwanese television station that is making a documentary about children with special needs and adaptive equipment. A large crew of people and cameras arrived bright an early to catch our morning routine (I took care of some early morning messiness before they arrived – THAT would have been a little TOO real). The crew followed JackO around throughout his entire day, and by the time they arrived back from school, they all seemed like old friends. It’s amazing the connections our silent boy is able to make. The documentary is following children with disabilities from four different countries, discussing different approaches cultures have towards the special needs community. It’s scheduled to air in Taiwan in the Fall. They promised to send us a copy. I can’t wait to see our boy on the screen (and to see if my need of highlights is distracting;-).

 

It’s not just our boy who has been getting some attention. Anna received a wonderful invitation last week. On Monday, Boxes of Fun is being recognized as a recipient of the Friends of Child Life Award at New York Presbyterian Morgan Stanley Children’s Hospital. We’ve been making Boxes of Fun for the children on the Bone Marrow Transplant floor at the hospital for eight years. Last year, Anna asked to take over and started a club at her school with her dear friend, Jane, to help raise money and fill the boxes. No surprise, they dove right in and have not only raised enough money to extend the program to Hackensack Hospital, but they have raised awareness for both Boxes of Fun and paying it forward. Kids these days . . .

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Our lives are complicated. Big things like fighting with Social Security and little things like Jack developing a habit of soiling his bed overnight. Some days I feel like we are dealing with more than our share of sh*t, but when I step away and look at the big picture, I am reminded that the good still outweighs the bad by a long shot.

I am beyond proud of both of our children. Each with such different lives. Each extraordinary.

 

Love, Jess

 

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What’s NVRN spell? Nothing.

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This is the smile that gets me through the hard stuff.

 

At my tennis lesson last week, I saw a young woman who looked familiar. She was a little older than Anna, and I was having trouble placing her. I went back to trying to focus on my forehand when it hit me, “Hey. Did you happen to go to Morrow Preschool?”

“Yes.”

Suddenly I could picture this slim young woman as a little girl a dozen years ago, with rosy cheeks and a glowing smile, playing with Jack on the playground at their preschool.

“You were in my son Jack’s class.”

“Wow. I’m not sure I remember him. Does he go to the high school?”

I sometimes freeze when I get hit with what’s happened. Maplewood is usually a safe place, where everyone knows our story. Where I don’t need to say things out loud. My stomach turned as I tried to choose my words so that we could simply go back to groundstrokes and drop shots, “No. Jack goes to a special school. His life’s kinda complicated.”

Now that we were both feeling awkward, I wished I hadn’t started this exchange and quickly looked for a transition. Her sweatshirt was bright and new with the name of her future, WESLEYAN, “You’re a senior this year? Heading off to Wesleyan in the fall? That’s wonderful.”

That’s all it took. Her smile grew, as she went from wondering what happened to her old classmate, to thinking about the adventures that lay ahead. We were both allowed to continue with our lesson, focusing on easier things than how complicated life can be.

When I got home from the lesson, I went into Jack’s room to say goodnight. He was sitting up in bed, and as soon as I walked in the door, he gave me a big smile as if he’d been waiting for me to tuck him in. I gave him a kiss on his forehead and laid him back down. As I covered him up, I realized he was wearing the bright purple NORTHWESTERN sweatshirt that we’d gotten him last year while visiting my parent’s alma mater.

The sweatshirt is missing all but 3 1/2 of it’s letters. Jack has somehow managed to eat the rest. He has eaten the O,R,T,H, most of the W, E, S, T, and E.

I can’t make this stuff up. It is a college sweatshirt that’s missing the college.

Love, Jess

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It’s a bird. It’s a plane. It’s Jack!

Poor Jack. His life is so limited.

It’s such a shame he needs to go to school every day. He probably just sits there, staring at the clock, hoping for time to pass quickly.

OR, He gets to fly across a stage!

 

 

Jack’s school mom, Monica, sends us pictures and videos almost every day of his school adventures. Yesterday’s was particularly amazing. Jack just might be the luckiest kid on the planet!

No need to feel sorry for our boy;)

Love, Jess

Giving Tuesday!

I’m guilty too. After laughing about how absurd it was to dash out from family — and dishes — to shop on Black Friday, I found myself sneaking on the computer first thing Monday to see what was on sale. Suddenly, I was in a frenzy. 50% off at JCrew, 25% off TVs at Best Buy! I forget everything I said, grabbed my credit card, and went nuts.

Giving Tuesday is the perfect opportunity to regroup and remember what the holiday season is really all about.

YES — this is the part where I talk you into pulling out your credit card and supporting something other than your family’s wardrobe or gaming systems or pot racks (Williams Sonoma also had a monster sale).

CPNJ Horizon High School has been a life saver for our family. Finding the right fit for Jack following our wonderful experience at The PG Chambers School was difficult. If you have a special needs child, you understand. If you don’t, I want you to take a moment and try to imagine.

School is always a source of concern for parents. We all want to feel that our child will be safe at school and have days filled with engaging experiences. When your child has limitations, you worry more. Dan and I needed to find a high school program that would support Jack’s needs while keeping his smile firmly intact. There are no schools for non-verbal boys with ALD and Epilepsy, who need help eating, toileting, and walking down the hall BUT who also what to have fun. We started our search with a huge list of requirements.

We wanted a school where Jack would receive physical therapy, occupational therapy and speech therapy during his school day. We wanted a school with an accessible playground, a therapy pool, an outdoor vegetable garden, art and music. We wanted Jack to be exposed to instruction in subjects like science and history. We wanted Jack to get to enjoy community trips, sports, plays and a prom.

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Prom 2015

 

We found all those things and more at CPNJ Horizon High School! Jack gets on the school bus every morning with a huge smile on his face and comes home seven hours later tired but happy.

Now it’s time to grab your credit card and make a donation. Let us know and you will receive a thank you note from Jack;-) AND we will inform elves from all faiths that you were extra good this year!

Love, Jess

 

smack in the middle

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I live smack in the middle of two worlds. I know I’m not alone in this. Many special needs parents also have one foot in “typical”. We need to maneuver back and forth all day long. We usually manage to make it look seamless, but trust me – it can be exhausting. And, for our family it’s even more complicated.

Jack didn’t get sick until he was eight years old. Until then, he was reaching all his milestones and moving along like most of his peers. We experienced only “typical” for years before being introduced to “special”. Not sure if that fact makes our situation more difficult, but it certainly sets us apart from many in the special needs population. Sometimes I’m not sure we belong in either group.

Most of our community is part of the “typical” world. Jack was our first child and he was born healthy and strong. As he started school, we developed friendships with his classmates families – many are still our closest friends. We were knee deep in “typical” when ALD busted into our lives. We’re lucky that our friends have stuck by us through our journey. They’ve helped us every step of the way, but few of them can really appreciate what our lives look like day to day. Even those who spend a lot of time with us are rarely in the bathroom trenches, changing Jack’s g-tube or scheduling the countless doctors appointments.

We have made a few connections with other special needs families, but I sometimes feel like an impostor with that crew. They have lived this life longer and seem to have mastered the rules, the language, the ins and outs of all things “special”. They’re a welcoming group, but I’m still insecure with my role as special needs mom. I just float along, trying to do what’s best for my family, while keeping my eyes and ears open so that I don’t miss too many of the requirements of taking care of my special child.

Even though I often feel a little out of place in both worlds, most days I think I do a fairly good job. I can go to a varsity lacrosse game to watch one of my children race down the field and leave at half-time to give my other child hydration through the tube in his stomach. I can open a class schedule full of advanced courses from one school and then sit down to fill out a “seizure action plan” for another school. I can get home from a neighborhood party and, after drinking too much Sauvignon Blanc, text my daughter to remind her of her curfew and then change my son’s soiled diaper. This back and forth has become second nature. Only occasionally does living in the middle of two worlds become tiring. Maybe it’s lack of sleep or maybe I’m still mourning the end of vacation, but today has been one of those days.

This morning I woke to the sound of my alarm for the first time since June. I was so confused by the chime that I managed to incorporate it into my dream. Finally our rotten dog, Finn, got sick of the noise and woke me with a lick (sometimes that dog is so sweet). 6:30 and I are not great friends, but I was excited enough about Anna’s first day of school that I slid out of the cozy sheets and called up to Anna’s third floor teenage palace.

First day Banana! I’ll meet you downstairs. Eggs! You need eggs for your first day.”

“Nope. All I want is a bowl of cereal. Too early for a big breakfast. And, I’m ready. I can do it myself.”

Then, she started walking down the narrow stairs. She had a bright “first day of school” smile and the shortest shorts you’ve ever seen.

For the next few minutes I had an internal conversation with myself. Measuring the benefits of allowing her to go to school with a smile, barley dressed or having a fight. She had such a great summer. She ran a lacrosse camp, conquered Outward Bound, and did more summer work that I think was fair or necessary. We’ve gotten along so well. I started to lean towards letting her leave the house without comment, but then I watched as she reached for a cereal bowl. Her tiny shirt started to rise up and I couldn’t help myself.

“Anna, you need to change.”

That’s when the screaming began. My camera was charged on the kitchen island, ready for that first morning picture. Instead of a sweet photograph, I said goodbye to my daughter and got nothing but a roll of the eyes and a slam of the door. She was wearing black, short cut-offs and a tight white shirt – that was after changing. Parenting Part One “typical” was complete.

I took a deep breath, turned around and walked up the stairs to check on Jack. I poked my head into his room, hoping he was asleep so that I could enjoy an hour or two for myself. I was greeted with a sweet smile and a sour smell. Time for Parenting Part Two “special”. I carefully helped Jack to his feet and walked him to the bathroom. I stripped him down in the shower, trying to avoid Finn disappearing with any of soiled clothing. Once Jack was showered, brushed, and dressed, I started the laundry and brought him downstairs for breakfast and medication.  At least Jack went through the motions with me, never losing his smile – and his silence was almost welcomed after the screams from his sister. Still, it’s been one of those days that my two worlds are not cooperating. I got shat on twice today before I’d even had my first cup of coffee.

Love, Jess

I did receive a text this morning from my princess, “I’m in study hall and bored. Text with me.” I’m pretty sure that’s an apology.

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laundry, sand and a fading tan

Anyone else finding sand in unlikely places? I haven’t walked on a beach in three days, but there’s still sand between my toes. After a month on Block Island it may actually be coming out of me. And, I’m pretty sure that there’s still plenty of wine in my veins. Oh, Block Island — I miss you already!

We had a great month away, but all good things must come to an end and I think the six of us are ready to return to reality. It’s a great feeling to be excited about getting home after a wonderful trip. We’re all recharged after weeks of sunshine, sand and family. If it weren’t for all the laundry, I could fully enjoy these first few days of reentry to real life. Luckily, I have Maria here helping me (she is a large piece of duct tape in our lives).

Yesterday Anna slept in and found Jack and me in the den just before noon (the life of a teenager). Jack was watching Zoe 101 and I was tackling a pile of bills. “There you are. I didn’t know where you guys were. I was kinda worried.”

Our house did seem to have grown during our month away. So many rooms and so much stuff. Not sure why we need all this space, but It is nice to enjoy the luxury of using the facilities without my family asking promptly, “How much longer?” or feeling the need to run up to my in-laws house in search of a little privacy. We love the tiny, hairy cottage, but this is our home. Four bathrooms may be a little excessive, but I wouldn’t trade this house for anything. I love every inch of it.

I have a few days to get this pile of laundry done and the sand cleaned up. By next week our tans will have faded and we will return to our school year schedule. Anna starts her sophomore year with a challenging course load and Jack is ready to face his “rehabilitate the gait” project. I’m looking forward to my next round of art classes and going to keep working on my writing. Dan will keep busy doing his thing — is it bad that I still don’t really understand what my husband does for a living? Even the dogs have fall projects. Keegan is getting retested (fingers crossed) and Finn is working on not biting people who approach our house.

The Maplewood Torreys are ready for the light to change, days to get a little shorter and digging out our jeans and boots. Wait — It’s 90 degrees outside. Maybe I will just focus on the fact that it is still VERY MUCH summer. I hope you all are enjoying every drop of these last days.

Love, Jess11666281_10207280584240249_2583005819993036187_n

jack knows how to party;-)

DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

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With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

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Jack’s school mom, Monica. We love her.

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Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess

GivingTuesday

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CPNJ / Horizon High School asked us to make a donation on #GivingTuesday and to take an “UNselfie” sharing what inspired us to donate.

“What does Jack do at school?” is a question I’m often asked. I usually answer, “Jack does what every other 16 year-old boy does – he hangs with his peeps and flirts with pretty girls.”

In fact, Jack does a lot more at Horizon High School. He gets therapy (PT, OT, and Speech). He has classes in Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math. He works at the school store. He participates in modified sports. He attends dances and parties and plays. He goes on field trips to Trader Joes to practice “appropriate behaviors” (although I think that might be more hanging and flirting).

After The PG Chambers School we were concerned that we wouldn’t find a good fit for our boy as he entered his high school years. There are no schools for ALD boys post transplant – no schools designed for handsome young men who understand inappropriate humor but can’t speak or reliably use the bathroom. We did find several schools that could handle Jack’s needs but Horizon had something that the others were missing. They approach school the way that Jack approaches life – with GUSTO!

Cerebral Palsy of New Jersey (CPNJ) runs programs for people of all ages with all sorts of “complicated” issues. And, they treat each of those people with respect and devotion. Monica (Jack’s one/one aide and a friend) often sends home pictures of Jack during the day. Whether it’s him in the classroom, planting in the garden, or rockin’ out at a dance party he always has a huge smile on his face. THANK YOU CPNJ FOR CONTINUING THE SMILES!

http://www.cpnj.org/givingtuesday

Love, Jess