a conference, the flu, a fall and a shower

Being surrounded by our ALD community is aways a thrill for me and being asked to stand up in front of many of them at The Aidan Jack Seeger Foundation — Standards of Care annual meeting was an honor. Talking about ALD, Jack and medical marijuana did have me nervous, but it was received well.

The conference takes place every year in Brooklyn and is run by one of my ALD heroes and the founder of The Aidan Jack Seeger Foundation – Elisa Seeger. Her beautiful son, Aidan, lost his battle with ALD and ever since she has fought to change the face of the disease. Her crusade to add ALD to the newborn screening panel has led to 14 states testing for the disease — 54% of births in this country (and that number is going up every year). She has also helped develop a wonderful guide for the parents who have just received the diagnosis. And, I don’t know anyone in the ALD community who doesn’t know Elisa and describe her as not just a driving force, but the sweetest, most generous human on the planet. 

The foundation fills the annual meeting with top doctors in the field, doctors trying to better educate themselves on ALD, biotech companies working on treatments, and patients and parents. I’ve attended for three years and am always impressed by the assortment of speakers representing all the sides of our disease.

When Elisa asked me to speak, I jumped at the opportunity, but sharing Jack’s cannabis story with this group did have me feeling a little uncomfortable. Cannabis is still largely unregulated and under-researched. I’m not a doctor or a medical professional and I didn’t want anyone to walk away thinking that cannabis was now part of some sort of standard of care for people with ALD. I kept reminding everyone that I was just a mom who loves her son and is trying to provide him the best quality of life possible. 

I went on to say that I’ve not seen a single negative side-effect since introducing medical marijuana into Jack’s regimen four years ago. It’s not effected his other medications or made him unable to complete his normal daily schedule. I credit cannabis for improvement in Jack’s walking, sleeping, eating and focus. It may not help anyone else with the disease, but it’s worked for us. A reminder that sometimes thinking “out of the box” is a good move for those of us facing rare/complicated/crazy issues. I’m sure that my words weren’t quite so clear as I stood in front of the crowd, but this is what I planned to say and I think I got my point across.

Since I spoke, two people have reached out to me and wanted more information about our experience. Family’s with boys, like Jack, dealing with complicated, often uncomfortable, lives.  I’m so happy that Elisa trusted me enough to share our story and I promise I will be responsible — anyone who reaches out to me will get the same disclosure, “I am not a doctor or medical professional. I’m just a mom trying to provide the best quality of life for my son.”

It was a great conference, but as soon as I walked in our front door Friday, I was reminded that life goes on and it isn’t always just about ALD.

Proof that life with ALD is not always just about ALD — The Flu:

Our family had planned to attend the second half of the Aidan Jack Seeger Foundation events — a family retreat. Unfortunately, we weren’t able to join the fun. I found out Friday that Jack’s school has had a flu outbreak. Between Jack’s less-then-perfect reaction to the prophylactic Tamiflu we decided to give him and worrying about getting other kids sick – we didn’t go the the family retreat. We were all bummed to miss meeting some of Jack’s ALD brothers, but the good news is that Jack seems to have avoided the flu for now. We are keeping our fingers crossed and please send love/prayers/good vibes to all of his classmates that are fighting the flu.

More proof that life with ALD is not always just about ALD — A Fall:

Instead of the ALD Family Retreat, we had a quiet Saturday. We stayed in our PJs until noon and waited for the snow to arrive. After lunch, snow started to fall and I decided to take the dogs for a walk. As the dogs and I were heading home, I was chatting with my friend Kim on the phone, looking forward to getting out of the cold. I crossed the street and stepped up onto the curb when suddenly I fell. I’m not entirely sure how it happened, but I was on the street, my left wrist was aching and I was awkwardly pushed against the front of a large, black SUV. Kim heard me screaming that I had fallen and couldn’t get up. She was trying to calm me down, when the car I was leaning against started.

I’ve had my share of horrific experiences, but this was defiantly in the top five. Luckily, Dan came to the rescue within a couple of minutes. I’m fine except for a sore wrist and a new fear of ice and remote car starters (once Dan got me off the ground, we realized that the car was empty and I was in no real danger).  

A little more proof that life with ALD isn’t always about ALD – A Shower: 

Sunday morning I wrapped up my achy wrist and headed into the City. My mother and I threw my sister-in-law a baby shower. It was a lovely party, but better still is that in a couple of weeks, we will have a new baby in the family!!! And, this baby will be born in NY, where ALD happens to be on the newborn screening panel thanks to the Aidan Jack Seeger Foundation.*

It’s been a long four days. I’m ready for some time in front of the fire and some good/bad TV. Hope you all are doing some of the same today!

Love, Jess

* The baby is NOT in danger of having ALD. My brother doesn’t have the mutation and, even if he did, he could not pass the gene to a son. We are just happy that NY State is doing the right thing for all of it’s babies. 💙

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

He’s Ready (at least that’s what I think the photo is telling me)

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I dropped Jack off at school yesterday following an incredibly long blood draw (I counted 12 syringes – poor kid). When Jack marched into his classroom, his school mom, Monica, ran up to me to show me that Jack’s school portrait had arrived, “Look how handsome”. “Look how mature he looks”, said his teacher, Mr Dan. Handsome and mature – indeed. Then, it struck me that it was Jack’s last school portrait. He’s graduating in June.

I did what I have been doing a lot lately — I quickly left an emotional situation. My mind was spinning the whole way home. It’s his last school photo. His last year at Horizon High School. His last year with these kids, these teachers.

I walked into the house and placed the envelop of pictures on our kitchen island – facing up where Jack’s face could stare up at the ceiling.

All day I kept pausing at the photo. It had me unnerved

It didn’t make any sense why this photo got under my skin. It’s Jack. A face I see every day. I know those eyes, that smile, as well as I know my own, but something about this picture made me see my boy from another perspective. He looks like a man. Like a very typical 21-year-old man.

I kept looking at the photo as if it were trying to speak to me. But, what was it about this picture?                    

It finally occurred to me last night as I was trying to fall asleep why this photo has been haunting me. It’s that it doesn’t really look like a school portrait. Jack’s 21 – too old for a high school photo.  This is a picture of a man. It’s a picture that belongs on an employee  name tag or a fraternity composite. 

I’ve been dreading Jack’s next chapter. Not being able to imagine him leaving the safety and security of his school. Not being prepared to see him start something new – something full of adults. Something that doesn’t have “school” in it’s title.

When I looked at the picture again this morning, I realized what it had been trying to say to me yesterday. This picture is telling me that it’s time. Jack’s outgrowing his school. It’s time for him to start his life as an adult. He’s not a child anymore. He’s a man and he’s ready to make a change. 

Let’s just hope that I’m ready by June.

Love, Jess

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Party Crasher

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We promise Jack simply walked in the front door. No broken skylights.

Last night Jack crashed a party. Although he wasn’t on the guest list, he didn’t seem nervous as he walked in the front door. That’s the way to do it – just walk in and own the room. He nonchalantly gave out a bunch of high-fives and hugs before hitting the dance floor.

We are blessed with having several people in our lives who are able to care for Jack when Dan and I want to sneak away. We call them his “other mothers” (he has “another father” too – we love you Peter). Rarely can we NOT find one of them to help out, but last night was one of those nights.

When we realized that we were without a caregiver, my first reaction was to call the hosts and express our regrets, but this party is one of our favorite parties of the year — I said to Dan, “Maybe we should just bring Jack”. 

We grabbed Jack’s diaper bag and put him in the car, hoping we weren’t committing an unforgivable party foul.

Not only was Jack welcomed with open arms by the gracious hosts, but Jack had a ball. Watching him walk around the party and cut a rug on the dance floor was great. AND, watching people’s reaction to the unexpected party crasher was wonderful. Our community is amazing — people who didn’t even know Jack seemed unfazed by our 21 year-old silent boy. Not by his dance moves and not even when he gave them an inappropriate grab or lick. Having him there also made Dan and I be a little more responsible about making an early exit (we woke up so easily today;-). 

As we got in the car to head home last night, we agreed we might need to make a habit of bringing Jack as a hostess gift. So much more fun than a candle or a bottle of wine.

Have a great Sunday and be warned that when you invite us to a party, we may be RSVPing for three.

Love, Jess

 

Grateful for Laundry

I’ve been grateful for so many things this last week – my heart is full. Dan threw me one hell of a birthday party last weekend and my only complaints were that I wasn’t able to get a proper visit with everyone and it ended too early (4:00 am . . .). Then, just five days later, we hosted a big Thanksgiving with all three sides of the family represented — the Torrey/Perrys, the Cappellos and the Mackays. Our house was so filled with guests all week that I never really knew how many people would be there for dinner or where everyone was sleeping. All I knew for sure was that it was amazing.

Today I’m grateful for laundry. 

Anyone else get that awful feeling lurking in the pit of their stomach when a fun time has reached it’s end (no – not a hangover, but that too)? I’ve gotten this feeling while driving home from Block Island on Labor Day and when Dan and I drag the Christmas tree to the curb in January each year. It’s part exhaustion and part relief BUT mostly it’s just knowing it was a great time and it’s over.

Our last guest left today around 1:00 and I’ve been loading and unloading the laundry and the dishwasher more times than I can count. I’ve been vacuuming and making beds and folding towels AND I am so grateful to have a distraction. 

Anna is home for one last night and we’re going to enjoy it just the four of us, around our little kitchen table. We’re ordering in, watching a movie and going to bed early. One last hoorah before the holiday is officially over.

I hope everyone had a wonderful Thanksgiving and has some laundry to do.

Love, Jess

I would like to thank everyone who made a donation to CPNJ – Pillar Care Continuum High School in honor of Jack for my birthday. We raised over $2500!!! It’s not to late if you want to help a great cause — CLICK HERE!

 

Just another day at HHS!

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

the last FIRST day

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Not a traditional FIRST DAY photo, but it’s pure Jack

Today was Jack’s last FIRST DAY of school. In June he’ll be graduating CPNJ Horizon High School and starting life as an adult. An adult who is funny and sweet and handsome AND and adult with special needs. Twelve years in, and we’re finally comfortable with having a child with special needs, but still — we’re bracing ourselves as we approach this new chapter.

I know we will figure this out – that’s what we do – but as Jack got on the bus this morning, I couldn’t help but get struck with that feeling that we’re just ten months away from a new unknown. Trying to distract myself from the panic, I sat on the black iron bench that was once my grandmothers and looked at the last FIRST DAY photos of JackO. What a life this kid has led.

Not able to shake the feeling all day, I dug through our not-yet-unpacked boxes in the basement for hours until I found it. Jack’s first FIRST DAY picture — Morrow Memorial Preschool. Dan had arrived at the church’s Baker Street entrance at midnight on a cold, early spring night, wanting to be sure that Jack’s name would be at the top of the list (in fact, he was the 7th or 8th, but he made it in). It was the school that all our neighbors had promised was the best and we knew our boy deserved the best. When we walked Jack into the doors of the preschool the first day of class*, Jack was a little nervous, but he was so proud. 

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I know today as Jack walked through the doors of his beloved high school he wasn’t nervous one bit. Jack rules that school — his magical smile making up for his lack of words. I’m so proud of our boy, who’s life has changed in more ways that we could have ever imagined 18 years ago. I just want all of his first days to be wonderful.

We have ten months to figure out the best plan for our boy. We will make it happen — even if it means we need to camp out for a week to make sure his is top of the list.

Love, Jack’s mom

* Jack’s first day of school was September 11th and we will always be grateful that Dan took the later train into work that day. ALD aside, we are a very lucky family.

NJ CAT

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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

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hApPy BiRtDaY bAnAnZ!

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Special siblings are a remarkable lot. Many people assume that these children grow up with something missing. Lack of attention and fear course through their veins, leaving them lost or even resentful and angry. I understand why people might make that assumption, but I’ve found that it couldn’t be further from the truth. The special siblings I’ve come to know are incredible people. Thoughtful, independent, hardworking, understanding, patient, and compassionate – just like Anna.

I did worry about Anna when Jack got sick. She was only six-years-old when our family’s attention was suddenly completely focused on Jack and his survival. We only had a few weeks to prepare for transplant following the diagnosis, and then Dan and I weren’t just not emotionally present for Anna, we were rarely physically there either.

Even after Jack got home from the hospital, the entire dynamic of our family had changed. We had been a family who was very focused on evenly dividing our attention, love and patience to our two kids — we never wanted to be accused of having favorites. After ALD screamed into our lives, the disease crumbled our “even-steven” approach to parenting.

We have always done our best to be there for Anna. We cheered loudly at lacrosse games (Dan was lovingly called “Loud Dan” for years), we tried never to miss parent conferences and would sit with her for hours over the dinner table discussing the trials and tribulations of childhood. She’s always known we adore her BUT she’s also always known we were just one diaper change or stomach flu away from dropping everything.

Jack’s illness/challenges trump everything (too bad that expression is so complicated now). If Jack needs to be medicated or changed, we need to take care of it and if he starts throwing up or looks like something is brewing, we don’t have the luxury of waiting. No matter if Anna needed help with her homework or we are knee deep in a project – ALD could interrupt our plans without any warning. We’ve all become accustomed to the interruptions  — especially Anna. It’s part of being a special sibling.

Anna learned early that if she needed to get something done, she needed to know how to do it herself – just in case. Don’t tell the MAPSO schools, but I didn’t sign any school paperwork once Anna hit middle school. Permission slips, notes from teachers – even those nightmare “Information Packets”. Anna took care of them herself. It was safer than putting it on my pile. It might have gotten lost in the medical bills/social security/gaurdianship paperwork. 

This early independence translated to a teenager who handled her college applications with minimal help and now that she’s in college, she doesn’t ask us for much help, other than making sure the bills are paid on time. Not that she doesn’t turn to us for guidance, but she knows how to handle things on her own. It’s how she has survived the ALD part of our family. It’s part of being a special sibling.

Independence has not been the only gift from being a special sibling.

I was getting my boobs squished yesterday (by a professional boob squisher — a mammogram) and I was trying to distract myself by making conversation. I asked if they had any fun plans for the weekend as they tightened the panel, “just one more little bit”. When she asked what my weekend plans were I mentioned that my daughter was coming back from college and we were celebrating her birthday. This, of corse led to where she was in school and what she was studying.

“Pre-Med at Hopkins? Are either you or your husband in medicine?”

I simply answered that her older brother is.

Anna was born strong and determined and Dan and I can take a little credit for who she has become, but Jack has been the biggest influence in her life. It was Jack who inspired Anna to study medicine. It was learning at only six-years-old that nature can be cruel. It was knowing that science saved her brother’s life. It was knowing that there is still so much unknown and she wants to be part of unraveling the mysteries of the human body.

Dan and I try to remind Anna that she’s only 19, and that there’s no need to know what she wants to do with her life, “I’m almost 50 and still trying to figure it out.” Anna’s a talented artist and I encourage her to continue making art. Dan and I both want her to study languages and travel and get the broadest education she possibly can. As much as we put in our two cents, but we know our sweet daughter and when she gets an idea, she can’t turn back. She sets a goal and she exceeds it. It’s who she is. BUT BANANZ IF YOU ARE READING THIS, PLEASE KNOW THAT YOU CAN MAKE CHANGES TO THE PLAN. ANY TIME.

Anna is driving up the NJ Turnpike from Baltimore as I am writing this. I can’t wait to get my hands on her and wish her a happy birthday in person. I can’t wait to watch as Jack jumps out of his chair to throw his arms around her until she screams for mercy. I also can’t wait to see where her life takes her. I wish Special Sibling didn’t need to be one of Anna’s titles, but it is and I appreciate some of the things that it’s taught her. With the combination of Jack’s inspiration to go into medicine and what Anna has learned as a result of being a special sibling, I have no doubt that she will do amazing things.

Happy Birthday Anna Banana – our very favorite special sibling.

Love, MoMo