Tag Archives: special needs

Birthday love

Posted on by

1

 

FullSizeRender-60

Today our family celebrates John Redmond Torrey’s 9th birthday. Yes. I know that Jack was born nearly 18 years ago,  on August 5th, 1998. But on May 30th each year, we celebrate the day that Jack was given life – again. Today is his “other birthday. “

Nine years ago, Jack was living at Morgan Stanley Children’s Hospital in NYC. He had been diagnosed with Adrenoleukodystrophy just one month earlier. Thanks to our team of amazing team of doctors and nurses, he received a stem cell transplant from an anonymous donor. The entire procedure took less than 15 minutes. In keeping with Jack’s relentless attitude and irrepressible spirit, we played Aretha Franklin and danced and laughed in his hospital room as the stem cells slowly dripped into his arm…. and eventually gave him a new life.

That was nine years ago. Now my son is a happy and healthy teenage boy. The same old Jack – just taller, and with more and more with facial hair. I am so so proud to be his father. And so thankful for every day that we have him in our lives.

Jack — I love you very much!

Love, Dad

What’s NVRN spell? Nothing.

Posted on by

1

FullSizeRender-62

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

IMG_4875

Everyone poops

Posted on by

0

images-11

 

I’m fairly certain that Jack identifies himself as a male, but he never thinks twice about accompanying me into the Ladies’ Room. And, even if the visit is for me, he joins me in the stall because I cannot trust his decision making if left alone, even for a second. It’s not easy, but it’s our reality.

Over the years, there have been times that I’ve been questioned by strangers, even scolded. Just a few weeks ago, I got a tap on my shoulder followed by a, “He looks FAR too old to need to be with his mother.”

Although I was tempted to mention that she looked rather old and cranky, I took a breath and simply explained that my son was “special” and couldn’t safely be left on his own. Then I locked my teenage son and myself into a small stall so that I could poop.

Not sure why there is so much concern over where people do their business, but I want to share that our family has been making our own toilet rules for a long time and we think people should get over their fears. If anyone ever refused to let Jack and I use the bathroom of our choice, I would have a simple solution, and it would require a lot of bleach to clean up.

Love, Jess

We do support a law banning guns from all bathrooms.

 

images-13

 

 

 

It’s a bird. It’s a plane. It’s Jack!

Posted on by

1

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

Mother’s Day – to Club or not to Club?

Posted on by

0

IMG_1022-1

Our last brunch at The Club. This was BEFORE the meal.

 

Brunch is a lovely invitation, especially for Mother’s Day. The idea of not being responsible for the cooking or doing the dishes is always welcome. And who doesn’t love being showered with a little extra love on Mother’s Day (while getting to spend it with Mymom)?

So when my folks called to extend an invitation for Mother’s Day Brunch at their country club, my first reaction was a smile, but quickly my mind started to race.

Does Jack’s sports jacket still fit? I’m fairly certain that he ate his last tie. Could use one of Dan’s? I wonder if he could reach a bow tie with his mouth. Does Target sell bow ties? I’m not spending another $80 at Vineyard Vines for a single-time use.

Then, I started thinking about all the other pitfalls that might be lurking at the country club. We’ve enjoyed many wonderful times there, but Mother’s Day is sure to be a scene, and that just adds to potential problems we could face. A simple outing for brunch can be complicated for our family, especially when there’s a coat and tie involved.

The diaper bag needs to be packed. We’ve changed it’s name to “The Satchel of Freedom” (thank you Peter). The new name focuses the attention on the fact that the bag allows us to rome free, but it’s purpose remains the same. It’s full of diapers and wipes and a change of clothes. The change of clothes includes socks. When Jack goes to the bathroom, it’s not uncommon to require a FULL set of new clothing. Do we have a another set of “fancy clothes” to fill the satchel?

This brings me to the next concern when going out for a meal with Jack. We need to consider the bathrooms for any needed “costume changes”. When Jack was a little younger, I could get away with bringing him into the Lady’s Room and sneaking into the handicap stall without attracting too much attention. At seventeen, Jack is harder to sneak in without creating a lot of puzzled looks. People try to be polite, but I feel the stares as I start to walk Jack toward the bathroom. His hopping gait doesn’t help staying inconspicuous. Sunday at The Club might be crowded. Is there a private bathroom hiding somewhere?

Yikes! Sunday is going to be really REALLY crowded.

A big crowd means that they might squeeze in extra tables. Now that Jack has added hopping to his repertoire of behaviors, if tables are too close together, he tends to knock against people causing quite a scene. It’s particularly awkward when he bumps a table and then tries to snatch a piece of bread off a stranger’s plate. Dan and I have both learned many funny one-liners to try to apologize for such instances, but it’s still not fun.

This isn’t going to work.

“Let’s definitely get together Sunday, but is there any chance we could go somewhere else? Somewhere Jack friendly.”

Mymom gets it. Although she loves showing off her grandchildren, she has helped more than once assisting in a complicated clean up, and she understands that Mother’s Day may not be ideal at a crowed club.

I made a reservation for an early dinner at a local restaurant that has broad isles between tables and large, private bathrooms. We will get ready early in case of any unexpected delays, making sure Jack is wearing dark colored pants to mask any spilling/leaking. No jacket or tie required. The Satchel of Freedom will be packed and ready for any unfortunate events and we will draw straws to see who gets to feed Jack.

I’m much more relaxed with this new plan, but we never leave the house without crossing our fingers. Going out with our boy is always an adventure.

Happy Mother’s Day!

Love, Jess

“special” moms

Posted on by

0

images

 

What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.

Poop, shower and shave

Posted on by

1

Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

IMG_4786

Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

I’m a mom

Posted on by

0

Senior year of high school all the students in my class took a “Career Aptitude Test”. It’s goal was to provide you with ideas for careers that you would be well suited for. I don’t remember the particulars, but there was a long list of personality questions, and I definitely remember cringing when I saw that I needed to include my GPA. I went from being excited about the process, to feeling less than hopeful about the results.

A few weeks after completing the test, we were handed large manila envelopes in homeroom. Although we were encouraged to wait until we got home, without hesitation everyone ripped open their envelopes; eager to discover their futures. I was an outgoing girl as a teenager, but in school I did my best to get lost in the clutter of high school. There was no need to draw attention to my less-than-stellar academic achievements. This was definitely one of those moments.

“Lawyer!”

“Teacher!”

“Chemist!”

People started popping out of their seats as they read their results. I sat quietly for as long as I could, but finally opened the envelope to reveal what the random algorithm had chosen for me. I held my breath as I pulled out the white sheet of paper. There was a list of several suitable options, but the one that seemed to leap off the page was “Cake Decorator”.

 

IMG_2991

 

Today this quirky career would have been thrilling, but 1987 was a time before reality television highlighted obscure careers. There was no Cake Boss or Top Chef. I had never known a single person in the food industry, let alone someone who decorated cakes for a living. I sat frozen as I pictured myself alone in a back room of a bakery icing cakes.

Instead of sharing that result with my peers, I focused on something else on the list. Something that didn’t include icing. Then, I went home wondering what on earth my life was going to look like. Until that moment, I hadn’t focused too much on what I wanted to be. The only thing that seemed certain was that I wanted to be a mother.

I’d always known I wanted to be a mother. Not just having a few kids within my otherwise filled life, but being the kind of mother who stays at home, making PB & Js and helping the PTA. An old fashioned dream for modern times, but for me it was my greatest ambition. I’ve never judged women with big careers and busy lives (my own mother raised my brother’s and me while juggling jobs, being a corporate wife, getting her PHD and baking her own bread), I just didn’t really want all that for myself.

But 1987 was a time when girls where encouraged to “dream big” and the glass ceiling were getting higher. It would have been as hard to share this 1950s dream, as it would have been to share the idea of being a Cake Decorator. So for years, I sat silent when the the “What do you want to do when you grow up?” question was asked.

images-10

Of course life winds around, and I’ve had a long list of jobs. I’ve been a wife (not that it’s really a job Dan), a teacher, a photographer, a writer (you don’t need to be paid right?). I’ve had my share of successes away from home, but when I look at my life, my proudest achievements have been as a mom. I’m grateful that Dan and I set up our family so that I could focus on my 1950s dream. It’s allowed me to devote all of my attention on my family when it’s been required — and it has been required a great deal.

Now, when people ask me what I do, I always start with, “I’m a mom.” I say it proudly.

Although I haven’t always been the perfect mother, I think that my successes safely outweigh my failures. If I can take even a tiny part of the responsibility for who my children are, I know that I’ve done a good job. Two kids with entirely different lives, and both are happy and succeeding (in their own way) as young humans. People that I don’t just love, but who I enjoy being around – most of the time. I’m still not quite sure what I want to be when I grow up, but so far MOM has been my favorite title.

Love, Jack and Anna’s mom

 

I never did find a job in a bakery, but I have decorated a lot of cakes in my time – just most have been of the “birthday” variety. And, I have come to know a few VERY talented cake decorators and often regret not taking that path. After all, I could have been a cake decorator AND a mom.

Here are some reasons to vote . . .

Posted on by

0

cgHBndzDlTfSbib-800x450-noPad

Aidan Jack Seeger

I have a favor to ask of all of you who read this blog. VOTE YES!!

Aidan’s Law will require ALD screening in all fifty states. Many of you won’t need persuading to stop what you are doing and sign this petition, but some of you may pause and wonder if, in a world full of issues, we should be focusing too much attention and money on a rare disease. This post is for YOU. I have five reasons you should consider signing.

1. NUMBERS

As far as rare diseases, ALD is not so rare.

The current guess is that ALD effects 1 in 17,000 people. I say “guess”, because as our country does more testing, we are finding that many people have been mis-diagnosed with other diseases. ALD is a disease that winds it’s way through families and often does a good job at hiding for a generation or two and masking itself with a variety of symptoms/timelines/etc.

2. SURVIVAL

Aidan Seeger’s story is all too common with ALD. Without the luxury of an early diagnosis, the disease is allowed to devastate the body, stealing one thing after another as a family struggles to figure out what’s happening. Once a proper diagnosis is made, the options are limited and often prove to be too late for an already worn out body.

When Jack was first diagnosed, we found a half-dozen other families who were going through the processes of stem cell transplant (still the most popular treatment option). Jack is the only one of those boys who is still alive.

3. QUALITY OF LIFE

Jack is fortunate to have been diagnosed with just enough time to receive treatment and with just enough luck and energy to survive. Unfortunately, ALD did managed to steal much of his quality of life. While he is happy and doing well, he is fully dependent. We feed him, hydrate him (through a tube in his belly), medicate him, dress him, toilet him. He needs someone to walk him from the den to the kitchen. And, Jack is doing far better than some of his ALD peers. Most of these boys are in wheel chairs and many have significant hearing and vision loss.

4. MONEY

Many people are hesitant to stand behind and pour money towards an unknown disease. It’s important to understand just how expensive it is for our society to raise boys who survive after a late diagnosis.

Jack’s education costs almost $100,000 a year. He requires (and receives) physical therapy, occupational therapy and speech therapy several times a week. He has an aide who’s job it is to work solely with him, because he is not able to maneuver through his day at his special needs school.

Jack is turning 18 in a few months. An eighteenth birthday is usually celebrated with a party and the honor of voting, being able to serve in our military and applying for college. For Jack, his birthday comes with Dan and I applying for guardianship and Jack becoming eligible for both Social Security and Medicaid.

Jack is a very sweet and VERY EXPENSIVE member of our society.

5. IN CASE YOU NEED MORE

It would have been heartbreaking to learn when Jack was just a baby that a gene was lurking in his body that would likely someday need complicated treatment. It would have been difficult to find the proper doctors to monitor his development as he went through childhood. It would have been devastating to get the news that ALD had started it’s war on Jack’s brain and that we needed to drop everything and proceed with treatment.

BUT this would have happened with enough time that right now Jack would be approaching his eighteenth birthday with a healthy body and a future full of opportunities. If only Aidan’s Law had been passed 18 years ago.

There are 402 more signatures needed on this petition. Let’s help get this wrapped up today. Thank you to the Seeger family for devoting their lives to this cause.

AIDAN’S LAW – VOTE NOW!

Love, Jess

 

Shame on you Facebook lady

Posted on by

0

images-7

 

Yesterday morning, as I was wandering through Facebook, I stopped at a comment which started with, “To the person who stopped to yell at me in the parking lot . . .”. I had a few minutes to kill, and those posts are often fun to read, but as I scrolled down my blood started to boil. The person was complaining that she had been scolded for parking in a handicap space without the proper placard (or a proper DISABLED person). She went on to say how busy her life was and that she has used that spot every day for two years when she drops off her children at day-care.

Without much thought, I started my response. My hands were shaking and I had tears in my eyes. She had struck a nerve. I’m not sure exactly what I wrote, but I used the words, “shame on you” more than once. I hit send hoping that my words would make her think and realize the sin she had committed. Instead, I watched as she continued to make excuses and ultimately take down the post.

I’m going to give it another shot now that I’ve had a little time to regroup. I know it’s unlikely that she reads this blog, but venting always helps me feel better.

To the woman who posted on Facebook about being yelled at in the parking lot –

I wish you could understand that those of us who have the “luxury” of convenient parking wish that we did not qualify. It took our family years to come to terms with the fact that it was not safe to maneuver our son through parking lots. That our pride was putting our son in danger. We now appreciate knowing that we can find a parking spot close to our destination so that we can easily come and go – quick exits are often as necessary as easy entrances when you are caring for a person with challenges.

And, our family is among the “lucky” placard holders. We appreciate the safety of a close spot – the ability to limit the amount of steps (or hops) it takes Jack to reach wherever we are headed, but many of our friends are literally not able to park without the added space that a handicap spot provides. They are unloading large equipment – walkers, wheelchairs. There is no other option for them.

Handicap placard holders are not just driving around looking for parking. We are living full lives. We have deadlines and commitments. We are busy too. Accessible parking doesn’t just provide connivence, it provides people with disabilities (and their familes) some independence.

I remember my hands being full when my kids were little and I was late. I remember my back straining as I unbuckled the kids, grabbed the diaper bag and extra snacks while yelling, “Don’t move! Let me get your sister!”. I remember holding tiny hands and praying the rain would hold out just one more minute so that we could make it through the parking lot.

I remember those days, and all I can think now is just how easy it was.

Shame on you Facebook lady.

Love, Jess