Tag Archives: special needs

non-flossing, slacker mom

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jackOOO

How many of you floss every day? Be honest. Don’t give me the answer you tell your dentist. I want the truth. Do you floss daily or a couple times a week when you’re given the luxury of an extra few minutes in the bathroom? Now, I want you to picture flossing a sixteen-year-old boy. A strong teenager who doesn’t follow directions and is not afraid to bite.

I wrestle with Jack every morning. Literally. Getting Jack ready for school is a work out (I have 2000 steps on my Fitbit by 8:00 am and toned arms to prove it). It’s not a routine that I resent, but it’s not a part of the day that I look forward to either. And, I’m certainly not anxious to add anything to our morning regimen.

I get Jack out of bed at 7:00 am, lead him to the bathroom and sit him on the toilet. I give him some time alone, while I throw his sheets and PJs in the wash (a daily requirement following what Dan and I refer to as Jack’s nightly “pee pee party” ). I return to the bathroom to shower, dress and pin Jack down to put on his deodorant. The last thing we do before heading downstairs is brush his teeth. By this point, I’m usually glancing at my watch, counting down the minutes before the bus arrives. We still have medicine, hydration, breakfast and his leg braces to deal with.

Some mornings I do pause long enough to hear the words of his dentist whispering in my ears, “You really need to floss his teeth every day.”

Jack has a dentist, an oral surgeon, an OT, a PT, a speech therapist, a pediatrician, an endocrinologist, an orthopedist, an ophthalmologist, two neurologists, and ALD specialist. Each of them provide me with their own list of daily obligations. There is no way that we could incorporate everything into our schedule. My job is to pick and choose which of these obligations are necessary, which are a good idea when we have time, and which are ridiculous under any circumstances. Of corse, I’m not always completely honest with our choices.

“Yes, we floss every day. It’s a little tough to get in there, but that doesn’t stop me.” Is my usual answer when we see the dentist.

I tell our doctors exactly what they want to hear. I want them to know we appreciate them and respect that THEIR specialty is what is holding our little man together. I need to feel secure that if we ever reach out for anything, they will pick up the phone and not think of me as the non-flossing, slacker mom.

I love being Jack’s mom. I also love being Anna’s mom, and Dan’s wife, and a daughter and a friend. I like walking, teaching my art classes and writing in my blog. I might even enjoy going out, eating rich food and drinking too much wine. I’m not a model parent. I’m just a normal parent, trying to balance what’s necessary to keep my kids safe, my family happy, and me sane.

I’m just hoping that I’m not alone. Please tell me that I’m not the only person who doesn’t follow all the rules. Jack rarely gets flossed and he never uses his leg braces on the weekends. My dogs sometimes miss their monthly dose of heartworm medicine. Anna texts while doing her homework and I always let her break curfew if she has another parent willing to drive her home. We order chinese food at least once a week and I buy those “ready made” salad mixes. The TV is often on when we eat dinner (around the island in the kitchen, with paper towels as napkins). I could go on and on, but I don’t want you to judge me  — too much.

Love, Jess

I’m heading to my own doctor next week. I can already hear myself, “Social drinker? One or two glasses of wine . . . on weekends? That sounds about right.”

We love CP.

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IMG_2586It’s been a while since I’ve felt that people were watching us. The kind of watching that people do when they are trying to be subtle.

My only explanation is that Jack was looking particular “normal” yesterday (am I allowed to use that word?). He was wearing over-washed jeans and a sweater with a tee-shirt poking out of the top. He had on hiking boots instead of his usual school footwear (which include brightly colored leg braces) and he was in desperate need of a shave. He looked like an average teenage boy.

We walked into the doctor’s office without drawing any attention. Before checking in, I walked Jack over to a chair, took off his coat and guided his rear onto the seat. This action requires me to literally bend him. The only person who noticed the routine was a young boy playing a video game across from us. As he watched me settle Jack down onto the chair, he made a face and grabbed his mother’s arm, “What’s wrong with that kid?”

“Shhhhhh.” she answered too loudly, “Stop staring.”

Suddenly, everyone in the waiting room was trying not to stare at us. They quickly looked down at their magazines or phones as they kept one eye in our direction. I could almost hear their minds racing as they tried to figure out what was with wrong with this seemingly normal teenager. Just as I was getting ready to give a little explanation to the group, we were told the doctor was ready to see us.

As the nurse ushered us into the examination room she proceeded to have an entire conversation with Jack without noticing that he didn’t once answer any of her questions. I guess she was used to over-zealous mothers doing the talking for their sulky teens. It wasn’t until she told Jack to take off his shoes and hop on the scale that she seemed to acknowledge that Jack was “complicated”. As I knelt down to pry off his boots she said, “I have a cousin with Cerebral Palsy.”

Jack often get’s mistaken for being Autistic, but this was new. Without thinking I blurted out, “Jack doesn’t have CP. He’s has Adrenoluekodystropy . . . and Addison’s and Epilepsy, but not CP.”

I suddenly worried that I might have insulted her (and/or her cousin), so I continued, “Not that there is anything wrong with Cerebral Palsy. Jack has a lot of friends with CP. In fact, my sister-in-law has CP . . . We actually love CP.”

The awkward silence that followed was painful and I tried desperately to liven up the room by telling Jack ridiculous jokes. This only made things worse and as the doctor walked into the room the nurse left quickly and I could have sworn I heard her gossiping about our conversation with the other nurses in the hallway.

We saw the doctor and left the examination room eager to leave this errand behind us. We walked down the hallway toward the waiting room trying not to make eye contact with any of the nurses (all of whom were doing their best not to stare). As we checked out, we were met with another unsuspecting person who glanced up at us. Jack was standing with his arm tightly around my neck – a stance that I am very used to, but might seem rather peculiar to a stranger. She just smiled and said, “You are so lucky that he still loves on you. My boy won’t give me the time of day.”

I took a deep breath, preparing to go into my explanation about Jack’s challenges and inability to respect common boundaries, but then I thought better of it. “Yes. I am lucky.”

Love, Jess

Words

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jacks smile

I’m sad to report that we didn’t win the lottery last night. I’m not sure why I’m always surprised when our numbers don’t match. A feeling of disappointment comes over me when we need to reshelf our “early retirement, Block Island dream house, pay off everyone’s mortgage” plans. Truthfully, money isn’t even what our family dreams about most. Our real dream is for words.

A friend of mine posted a question on Facebook yesterday, “If you could have one free day of any illness, what would you do?” THAT is a lottery that our family would love to win! I spent only a second before answering, “We would listen to Jack’s stories all day long.”

Jack does not speak, sign or write notes. Not only do I miss hearing him say “I love you Mommy”, but his lack of speech makes certain situations particularly challenging. We were at the hospital two weeks ago with Jack. He was clearly sick and not able to tell us what was bothering him. Not knowing if it was his stomach, his throat or his ears created the need for additional tests and extra worries. Even on a typical day Jack’s silence is complicated. His inability to call out if he needs us in the night sets Jack apart from even a young baby.

Strangers often have a difficult time understanding. They assume that his speech is limited or difficult to understand. I try to be clear, explaining that the only sounds Jack makes are sneezing, coughing and laughing.

“But how do you know when Jack’s hungry or sad?” I try to explain that although he can’t be specific, Jack is able to communicate most of his needs without words. When he locks his eyes on yours he is able to be quite clear. I’m not really sure how he manages this, but people who love Jack learn quickly how to read his eyes and his silence becomes less quiet. While he might not be able to tell you when he has a sore throat, he can fill a room with stories without saying a word.

It doesn’t mean that we are content with Jack’s silence. Seven years after ALD stole his words l still dream of hearing them. Dreams so realistic I can still hear the sound of his voice when I open my eyes. It’s hard to wake up smiling only to realize that it was just a dream, but I won’t trade those magical moments for a winning lottery ticket (even the $485 million variety)!!
Love, Jess

Jack does use an iPad and (mostly at school) has some success answering questions AND Jack is able to sigh one thing — I LOVE YOU.

a job, a dad, and a beard

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beard family

Big day here at 26 Clinton Avenue, and I’m not referring to the snow day. Today, after seven months at home, Dan went to work.

Working in finance it’s almost expected that you will be let go, downsized or simply fired at some point in your career. Its often not a reflection of your work ethic or knowledge base, it’s just that companies change their strategies or decide that someone is easily replaced with a cheaper version. Dan and I have both known it was a possibility, but have always been lucky to enjoy the security of consistent paychecks, fun bonuses and good medical insurance.

When Dan first got let go, it did take me a little while to put it in perspective. Our family has certainly had worse days (heard worse news), but the news of Dan losing his job shook my foundation. Dan’s job has always been a stable structure in our percarious house of cards. We’re not so well off that we aren’t aware of money, but it’s something we don’t need to worry about often. We have enough. Enough to pay bills, enjoy vacations and pay for help that allows me to breathe. Money makes our lives easier. I know this, because I know many families with complicated lives that don’t have any. It makes difficult circumstances, more difficult.

Although those first few days after hearing the news I did feel the unease of not knowing what to expect and feared the possibility of losing our security, I wasn’t as panicked as I would have imagined. My confidence in Dan, our families resilience and our savings allowed me to keep my perspective. Dan put me further at ease when he explained the generous package that his company had offered. Not a “golden parachute”, but solid silver. And, a package that included a “garden leave”.

Although Dan managed to secure his next job quickly, this “garden leave” required him to stay out of his industry for a period of time. “Garden leave” protects companies from having their ex employees hitting the market quickly. It meant Dan got to enjoy all the perks of working (salary, benefits, etc) without working. And, he got to spend the last seven months going through our family weekday routine – a routine that he has never had the opportunity to truly witness. I thought it would be tough adding Dan to our days, but it’s been wonderful. He’s been great company, had meaningful time with the kids, and has enjoyed hiking, reading and growing his beard.

After seven months, it was strange to see him put on a suite this morning, and kiss my forehead with his freshly shaved face. Strange having breakfast without him. The house seems oddly empty without his music playing and offers to do the grocery shopping (and shoveling). It’s going to be an adjustment, but we’re ready and grateful that we had this break. I’m so glad I didn’t waste too much time worrying.
Love, Jess

The “C” word.

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sdtcollege

Lately we’ve been reminding our daughter, Anna, to leave all her doors open as she approaches adulthood. Strong grades, long lasting relationships, healthy habits — these are the things that can keep those doors open, leaving her with as many opportunities as possible. Jack had most of his doors shut before his ninth birthday. These lost opportunities have been huge focus for me the last couple of weeks.

Jack’s smile is usually enough to melt any feelings of sadness or frustration over what Adrenoleukodystophy (ALD) has done to our family. Jealousy seems to be harder to dissolve. Jealousy is the latest emotion in my journey toward acceptance.

When Jack was first diagnosed, we were thrown a pile of statistics and quickly learned how lethal ALD can be. The more advanced the disease at diagnosis, the worse the outcome. Loss of speech, vision, and hearing are almost expected and mobility is the next to go. All these possibilities seemed manageable as long as we didn’t lose our boy. And, we didn’t – we brought Jack home 79 days after his transplant and he managed to walk from our dented silver minivan to our front door. He was able to see the “Welcome Home” signs filling the front yard and hear the cheers of his friends as he arrived. We were lucky and I swore I’d never complain.

I’ve kept my promise — mostly. Dan, my mother, and my best friends know the ugly truth that I’m not always the picture of acceptance and joy. I do have my moments of anger and resentment and do sometimes yell, “Why the $%^& did this happen to us?!?!?!” Usually these moments are brief and can be calmed with a glass of wine or a strong hug. And, until recently, they’ve been sporadically sprinkled over an otherwise positive mood.

Lately, I’ve noticed a reoccurring knot in my stomach and a hard lump in my throat. Sometimes it’s followed by the need to leave a conversation quickly, and the want for a long walk or time alone in my room. It took a while to identify this feeling as jealousy and to figure out what was triggering it. After some soul searching, I’ve discovered the source of my uneasiness — college.

College is suddenly the topic of choice in our middle age, suburban circle. Jack’s peers are starting to prepare for their next chapter and they’re doing it without him. They’re visiting schools, planning their futures, and soon they’ll be heading off to their next adventure. All while Jack will be here with us in Maplewood (forever the dependent child). I’m jealous that our boy is faced with so many closed doors,  is not working on his college portfolio AND that Dan and I are not planning our empty-nest phase.

Typical Jesse, I keep finding myself knee deep in these conversations, as if the outcome is going to miraculously change. That it won’t bring me back to Jack and his lack of need for SAT prep and college essays. It’s ripping open the scab that I thought had fully healed, but I keep on asking the questions, “Where are you applying?” “Are you thinking a big state school or something smaller?” “How’s your SAT prep going? Have you found a good tutor?”. The truth is that I want to know. These are kids that I love and I am excited about all of their opportunities. I want to know every detail of their process. It’s also a way for me to prepare for Anna’s next steps as a student (writing those words brings that lump back).

So – when will I get over this latest bout of jealousy/anxiety? Sometimes writing it down helps me reach the end more quickly. Somehow it takes a little of the poison out of the situation. And, I know that acknowledging the problem is always a good first step.

Our local friends/neighbors are now going to panic that they need to steer clear of the “C” word for my benefit. Actually, I think it’s better if they do the opposite. The more I hear the word “college” the better. I need to get passed this or the next few years are going to be miserable!!
Love, Jess

Jack-O is . . . a punk rocker!

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Jack left for school this morning with a big smile on his face and a large mohawk on his head. By all accounts he rocked his way through the halls of Horizon High School and returned home with the “Most Creative Costume” award.

Any time you are feeling sorry for Jack and his complicated life, look at this picture.

jackrocker2

HAPPY HALLOWEEN!!!

Love, Jess