Life isn’t always just rainbows and unicorns, but it is today. Happy Halloween everybody!
CPNJ (now Pillar Care Continuum – new name, same great organization) does it again! Their annual Trunk or Treats got rained out, but that didn’t stop the treats or the fun.
I was feeling pretty proud about creating a great costume for our boy until Jack’s buddy rolled into the room. The award for GREATEST COSTUME EVER goes to Ben! Sorry JackO – you get second place;)
Love, Jess
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
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.
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
If you’re not part of the Special Needs World you might think that the NJ CAT is some sort of cat-loving, youtube channel for New Jersey. It’s not. It’s something every special needs parent dreads. I completed it last week. The good news is — I survived.
The NJ CAT is the assessment used by the Division of Developmental Disabilities (DDD) to determine an individual’s eligibility for services. With Jack’s 21st birthday looming and an adult program needed starting next June, we were required to get it done. CPNJ Horizon High School, always there to lend support, allowed me to complete it while sitting with their social worker and Jack’s speech therapist so that I could get through it without losing my mind.
It was still hard.
The test unravels as you take it. If you answer that your child has trouble with speaking, questions get more specific. Can they speak clear enough for a stranger to understand?, Can the speak clearly enough for you to understand?, Can they speak simple three-word sentences?, Can they say a word? When it came to eating: Can they cook and feed themselves without assistance?, Can they use simple kitchen appliances?, Can they use utensils safely?, Can they feed themselves independently? The questions go on and on. 50 pages worth of questions proving just how challenging Jack’s life is.
I was told to be honest. The DDD needs to know exactly what Jack’s needs are so that he receives the adequate funding for an adult program/therapy/etc. The questions didn’t allow for anything but honesty. If Jack was left alone, what could he do? Not much. I wanted to write that Jack’s smile says enough to know what he wants for lunch and that, although he can’t make himself a sandwich or use the toaster, he sits on his island stool and cheers me on with his eyes. I wanted to say that, although he can’t dress himself or brush his teeth or wash his hands or take himself to the bathroom or drink from a cup that he’s the most amazing human I know.
While I took the test, I kept thinking that they were missing part of who Jack is. There were no questions about his ability to make people laugh or know when I need a hug.
For 12 years I have been Jack’s biggest cheerleader and being forced to answer the NJ CAT questions honestly was depressing. It only took an hour, but even four days on Block Island didn’t erase the dread about the new chapter that is beginning with the NJ CAT. Twelve years into this new life and we have always been so lucky with Jack’s day to day life. Thanks to the help of family and friends and Maria and Lilly and Monica (Jack’s other mothers) we’ve created a wonderful life at home and then the schools we’ve found have been extraordinary. First The PG Chambers School, where we arrived lost and scared and they taught us all how to accept this new life. And, CPNJ Horizon High School where Jack has thrived and they’ve taught our whole family how to embrace and celebrate every ounce of this life (or, MOST ounces – maybe not EVERY ounce).
Now we’re approaching the next chapter — having an adult child with special needs. No more schools with plays and proms and petting zoos. I’m sure we will find a good fit, but I wonder if any adult program can begin to replicate the warm environments that his schools provided.
Because of Jack’s late summer birthday, we get some extra time to prepare, but this time next year he’ll be heading off each day to something else. I’ve got to start hustling to find the perfect plan. I’m never great with change and I know this is going to be a tough one. We are lucky JackO always seems to make these adjustments with ease – and his magical smile.
I’ll keep you posted on what we see.
Love, Jess
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;)
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.
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
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 . . .
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
Smack in the middle of remembering the hell we went through ten years ago, we got a beautiful reminder of where we are now.
THIS is where we are now — We are winning the GOLD!!!!!
This amazing day was thanks to the Special Olympics and the greatest school on the planet – CPNJ Horizon High School. Their love, support, training and encouragement helped Jack hop his way to the finish-line!!
If this video made you smile (or cry happy tears), please consider making a donation to Jack’s school.
https://cpnj.donorpages.com/WWCHorizonHighSchool2017/JesseTorrey/?t=636288010860612211
Love, Jess (proud mama)
P.S. It’s not really about winning, it’s about being able to play the game. Thanks to the Special Olympics and Horizon High School – Jack was able to play the game!
P.P.S. It is kinda fun to win sometimes;)
smiles and duct tape 