Jack’s Other Mothers

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Dan and I had a birthday celebration last night (Happy Birthday Bid) and couldn’t attend CPNJ Horizon High School’s Annual Tricky Tray. At first, we thought that Jack would need to skip the fun event, but Jack’s other moms didn’t want our boy to miss out. Jack got to spend last night eating, drinking (I’m sure it was juice) and winning baskets, thanks to his three other mothers — Maria, Lilly and Monica.

Knowing that Jack would be surrounded by his other mothers, made me happy. I knew that Jack would have a wonderful night and be safe and well cared for.

These three women are the reason that THIS mother is sane. I love you ladies!!!!!

Thank you.

Love, Jess

Jack also has some other fathers. And, again – he sure seems to like that juice;)

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Dear CPNJ Horizon High School,

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We had Jack’s annual IEP meeting last week.

At one point during the meeting, one of Jack’s therapist brought me a box of tissues. I hadn’t known that I was crying until I saw the box placed next to me. My first thought was, I wonder if other parents lose their mind during these meetings?, but reassured myself that most parents would find such meetings emotional. It’s not just hearing goals for your twenty-year-old child that include “increasing independence with self-care skills” and “transitioning from sit to stand independently”. It’s the fact that we are nearing the end of these meetings – nearing the end of our time at CPNJ Horizon High School. Jack’s not graduating until next Spring, but our next placement is unknown and not knowing where we are headed is scary. We love the school so much and want to savor every last moment Jack get’s to be a Horizon Husky.

I’ve written love letters to CPNJ Horizon High School before – Here I go again.

Dear CPNJ Horizon High School,

Thank you. Not just for being Jack’s second home for the last six years, but for being his other family for the last six years. Thank you for being a place where we know he’s safe and loved and being taught skills to make his life more comfortable and independent. Thank you for finding any excuse for a party, so that Jack can dance and flirt. Thank you for always welcoming our entire family with open arms. 

Thank you for having a staff that has taken the time to really know Jack and what makes him tick AND for always looking for new ways to tackle his challenges. Thank you for having a staff that reaches out to us to tell us what magical things Jack has done during the day. Thank you for having a staff that has promised, that even after Jack’s graduates, they will always be part of his team.

The folks at CPNJ Horizon High School (the kids, the teachers, the aides, the therapists, the nurses, the administration) don’t just feel like family – they are family!

Love, Jess

Please help us give back to Jack’s home away from home.

CLICK HERE!!!!

never too old to dress up;)

I realize that my children are 18 and 20, but they both still LOVE to dress up for Halloween.

Being off at school, Anna left few hints of her plans, other than an Amazon purchase that I did NOT approve (you still owe me $30 Banana). She had two parties this weekend and sent me photos of her costumes. Although I know that it’s inappropriate for my underage girl, I couldn’t help but laugh at her first costume – Whispering Angel.

IMG_3673And, who doesn’t love a good vampire?

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I had to be more hands-on with Jack’s costume. I spent weeks trying to find a clever idea, when it found me at Target last Friday. A large flamingo hat almost screamed at me from an isle full of Michael Myers, Demogorgons and Black Panthers. I introduce you to The Dancing Flamingo!! ****

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I got to spend some time with the Flamingo at the Trunk & Treats event at CPNJ Horizon High School. Always fun to hang with Jack and his schoolmates AND I got to sneak in a little last minute campaigning. Not sure if you’ve heard, but there is an election coming up next week . . .  Jack is running for president!!

 

Tomorrow I head down to Philadelphia for the ALD Connect Annual Meeting and Patient Learning Academy. This year they are hosting a book club where I am leading the discussion on Smiles and Duct Tape. I’m looking forward to spending time with many of our ALD community and introducing Jack (and Dan, Anna, Mymom and Nonno) to the crew.

Love, Jess

**** In case you are new to Smiles and Duct Tape, Dancing Flamingo has been a nickname for our boy for a while. To learn why, CLICK HERE.

 

 

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