Monthly Archives: September 2015

How are you?

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“How are you?” It’s a question we hear several times each day and mostly it’s answered without too much thought. “Good.”, “Fine.”, “Great!” — all acceptable options.

Are you ever tempted to REALLY answer the question? Have you ever met someone who really wants the truth?

The last couple of weeks I’ve been teetering between two extremes. Whiteboarding has been remarkable. Jack is clearly reading and able to answer most questions. It’s great until he gets bored — then he just looks at us and circles everything (I’m pretty sure it’s his way of saying FU). The inconsistency has me a little discouraged. As much as I prepared myself for it not being a miracle, part of me hoped that it would be the beginning of true communication. And, maybe it will, but for now I’m left feeling proud/excited/grateful AND frustrated/bummed/cranky — depending on the minute.

I also finally finished the book, Smiles and Duct Tape — Journaling to a New Normal,  last week and sent it off to it’s next step. The relief of having completed the project, and the anticipation to see where/if/how it lands, has me fired up. But, it’s also left me wondering what’s next.  So much of the last couple of years has been spent at my computer reliving the first 1000 days of our journey and reflecting on how our family adapted. Suddenly, I’m feeling a whole lot less secure than I claim to be in my book – like the writing was keeping me grounded.

I’ve felt so off that I’ve avoided much social time, but yesterday my manic mood and I met up with a new friend. I’m not much of a believer in fate, but it was a series of rather unusual circumstances that brought us together. Initially a mutual friend, then Listen to Your Mother, then a disease. Ours ALD/his AMN – same gene, different details, but something that links us and had us eager to meet in person. So we met and “How are you?” was answered easily and very honestly.

This new friend is much more than a man with a “complicated” gene. He’s a father, a husband, a friend, a motivational speaker and a life coach. We shared our stories of ALD/AMN and quickly felt like old friends. When I asked about his career as a life coach, he briefly explained and then offered to show me some techniques.  I wasn’t really sure what to expect, but with his kind eyes and clear questions, I was quickly spilling details of my history and goals for the future. I hadn’t realized how much I had spinning around my brain. I walked away with a new friend (or a guy who will soon block me on Facebook) and so many ideas.

I got home juggling all the possibilities, excited about starting a new chapter. Then, life got in the way – dinner, diapers, dogs. My mood quickly swung back in the other direction. At least I got a peek of where I might be headed. I’m hoping my mood will stabilize soon. Hopefully Jack will come home from school today ready to answer some questions and I may need some more conversations with my new friend. But for now, don’t ask me, “How are you?” unless you want the real answer.

Love, Jess

whiteboarding

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I said in my last post that progress doesn’t always follow a straight line, but it looks like Jack may be full steam ahead with his latest accomplishment. We call it WHITEBOARDING!

We present Jack with a question (either verbally or in writing) and write three choices on his whiteboard. He circles his answer. His circles can be a little haphazard, but they’re legible enough to be clear. We’ve asked questions that have specific correct answers and questions that provide Jack with a decision. He’s able to answer everything without any trouble.

It’s remarkable, but we’re still quietly clapping (although we are chilling some champagne). We just want to see if Jack’s brain continues to cooperate with his new skill. And, I’m a little nervous that Jack is being so nonchalant about his new ability – as if he’s done it forever. He’s potentially just broken down his biggest barrier, and he’s acting like it’s no big deal. My only explanation is that not talking hasn’t really bothered him too much.

Everyone else, of corse, is thrilled by the idea that Jack is gaining a voice. The doors that could open for our little man are endless. He can tell us how he’s feeling and what he wants to do. He can be part of the conversation.

My only complaint is that I now feel obligated to ask all three of my roommates what they want for dinner. One luxury of having a silent child is that I could make some decisions for him. Going out for meals has been especially fun, “I will have the spinach salad with the dressing on the side. My son will have the bacon double cheeseburger with a side of french fries.” There are NO calories if you don’t order it for yourself.

8 things we’ve learned this week:

1. Jack can absolutely read. We’ve been making him prove it all week long.

2. One Direction is his favorite band. Better than The Beatles, The Grateful Dead, and The Stones (Dan is a little upset, but he’ll get over it).

3. Jack still prefers waffles to pancakes, and does NOT like eggs.

4. I leave him on the toilet too long.

5. He’s done watching anything having to do with “Real Housewives.”

6. Jack knows who “Bad Dog” is.

7. Victoria Justice is cuter than Zoe (from Zoe 101), but he still loves Zoe.

8. He wants a tattoo and an earring.

This morning, as Jack and I sat on the front stairs waiting for the bus, I wrote, “How do you feel about your whiteboard? Love it, It’s okay, Sick of it.” He looked at me, laughed and circled “Sick of it”. Then he threw his arms around me and gave me one of his killer hugs. Sorry Jack, but this one is here to stay (I hope).

Love, Jess

quietly clapping

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As I looked through Jack’s backpack on Friday afternoon, I found a small whiteboard and a note from Monica (Jack’s school aide/school mom). She said that she had bought the board for Jack thinking it might be interesting, “He’s doing great answering questions. He’s so smart!”

I almost ignored the note. We get a lot of “great ideas” here at 26 Clinton Avenue, and most end up being less than successful experiments. The whiteboard lay on the kitchen island until later that night when Dan and I finally tried a few simple “yes” and “no” questions. Jack quickly and clearly circled the appropriate answers. We were impressed, but got distracted and didn’t think too much about it. Saturday we tried again with Anna, and she didn’t give her brother an easy time. She started asking questions, requiring Jack to read the options himself before circling the correct answer. Question after question he answered them all without hesitation. Eager to test how much he was reading, Anna took it a step further. She started writing out the questions silently. No hints or help. Jack didn’t miss a beat. He’d look at the question and circle the correct answer.

Over the last eight years we’ve seen hints that Jack could still read, but we had no idea to what extent. Until now, his fine motor skills have prevented much progress with holding a pen. Even something as simple as a circle was out of his reach. Now, Jack might not need to relay solely on his smile to get his point across. He may finally have access to words. AMAZING! Jack being able to tell us what he wants for dinner OR how he’s feeling OR what hurts. The possibilities are endless.

We’ve shared this update with some friends and family and the news has been greeted with high-fives, tears and hugs. Everyone knows that communication has always been on the top of our “wish list”. I think people have been surprised by our calm demeanor while describing this new milestone. I know we should be opening the champagne and dancing in the streets and we will – in time. We’re simply being careful. It’s self-protection.

Progress doesn’t always happen in a straight line and for people with ALD the road can be particularly inconsistent. ALD can tease you with progress than steal it back without explanation. This makes celebrating successes a little nerve wracking. Our family braces for good news as much as we do for bad news. I think every day that Jack is able to repeat his new trick/mind blowing triumph, we will feel a little more confident about celebrating. Until then, we are quietly clapping, dancing and doing summersaults.

Love, Jess

Our family has tried EVERYTHING to help Jack access language. It’s amazing that something as simple as a little whiteboard might be the start of a new chapter. Monica – we love you!!

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Jack didn’t miss a beat answering this one!

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Anna left this for Jack earlier today. He didn’t hesitate.

Being “liked”

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Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess

smack in the middle

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I live smack in the middle of two worlds. I know I’m not alone in this. Many special needs parents also have one foot in “typical”. We need to maneuver back and forth all day long. We usually manage to make it look seamless, but trust me – it can be exhausting. And, for our family it’s even more complicated.

Jack didn’t get sick until he was eight years old. Until then, he was reaching all his milestones and moving along like most of his peers. We experienced only “typical” for years before being introduced to “special”. Not sure if that fact makes our situation more difficult, but it certainly sets us apart from many in the special needs population. Sometimes I’m not sure we belong in either group.

Most of our community is part of the “typical” world. Jack was our first child and he was born healthy and strong. As he started school, we developed friendships with his classmates families – many are still our closest friends. We were knee deep in “typical” when ALD busted into our lives. We’re lucky that our friends have stuck by us through our journey. They’ve helped us every step of the way, but few of them can really appreciate what our lives look like day to day. Even those who spend a lot of time with us are rarely in the bathroom trenches, changing Jack’s g-tube or scheduling the countless doctors appointments.

We have made a few connections with other special needs families, but I sometimes feel like an impostor with that crew. They have lived this life longer and seem to have mastered the rules, the language, the ins and outs of all things “special”. They’re a welcoming group, but I’m still insecure with my role as special needs mom. I just float along, trying to do what’s best for my family, while keeping my eyes and ears open so that I don’t miss too many of the requirements of taking care of my special child.

Even though I often feel a little out of place in both worlds, most days I think I do a fairly good job. I can go to a varsity lacrosse game to watch one of my children race down the field and leave at half-time to give my other child hydration through the tube in his stomach. I can open a class schedule full of advanced courses from one school and then sit down to fill out a “seizure action plan” for another school. I can get home from a neighborhood party and, after drinking too much Sauvignon Blanc, text my daughter to remind her of her curfew and then change my son’s soiled diaper. This back and forth has become second nature. Only occasionally does living in the middle of two worlds become tiring. Maybe it’s lack of sleep or maybe I’m still mourning the end of vacation, but today has been one of those days.

This morning I woke to the sound of my alarm for the first time since June. I was so confused by the chime that I managed to incorporate it into my dream. Finally our rotten dog, Finn, got sick of the noise and woke me with a lick (sometimes that dog is so sweet). 6:30 and I are not great friends, but I was excited enough about Anna’s first day of school that I slid out of the cozy sheets and called up to Anna’s third floor teenage palace.

“First day Banana! I’ll meet you downstairs. Eggs! You need eggs for your first day.”

“Nope. All I want is a bowl of cereal. Too early for a big breakfast. And, I’m ready. I can do it myself.”

Then, she started walking down the narrow stairs. She had a bright “first day of school” smile and the shortest shorts you’ve ever seen.

For the next few minutes I had an internal conversation with myself. Measuring the benefits of allowing her to go to school with a smile, barley dressed or having a fight. She had such a great summer. She ran a lacrosse camp, conquered Outward Bound, and did more summer work that I think was fair or necessary. We’ve gotten along so well. I started to lean towards letting her leave the house without comment, but then I watched as she reached for a cereal bowl. Her tiny shirt started to rise up and I couldn’t help myself.

“Anna, you need to change.”

That’s when the screaming began. My camera was charged on the kitchen island, ready for that first morning picture. Instead of a sweet photograph, I said goodbye to my daughter and got nothing but a roll of the eyes and a slam of the door. She was wearing black, short cut-offs and a tight white shirt – that was after changing. Parenting Part One “typical” was complete.

I took a deep breath, turned around and walked up the stairs to check on Jack. I poked my head into his room, hoping he was asleep so that I could enjoy an hour or two for myself. I was greeted with a sweet smile and a sour smell. Time for Parenting Part Two “special”. I carefully helped Jack to his feet and walked him to the bathroom. I stripped him down in the shower, trying to avoid Finn disappearing with any of soiled clothing. Once Jack was showered, brushed, and dressed, I started the laundry and brought him downstairs for breakfast and medication.  At least Jack went through the motions with me, never losing his smile – and his silence was almost welcomed after the screams from his sister. Still, it’s been one of those days that my two worlds are not cooperating. I got shat on twice today before I’d even had my first cup of coffee.

Love, Jess

I did receive a text this morning from my princess, “I’m in study hall and bored. Text with me.” I’m pretty sure that’s an apology.

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laundry, sand and a fading tan

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Anyone else finding sand in unlikely places? I haven’t walked on a beach in three days, but there’s still sand between my toes. After a month on Block Island it may actually be coming out of me. And, I’m pretty sure that there’s still plenty of wine in my veins. Oh, Block Island — I miss you already!

We had a great month away, but all good things must come to an end and I think the six of us are ready to return to reality. It’s a great feeling to be excited about getting home after a wonderful trip. We’re all recharged after weeks of sunshine, sand and family. If it weren’t for all the laundry, I could fully enjoy these first few days of reentry to real life. Luckily, I have Maria here helping me (she is a large piece of duct tape in our lives).

Yesterday Anna slept in and found Jack and me in the den just before noon (the life of a teenager). Jack was watching Zoe 101 and I was tackling a pile of bills. “There you are. I didn’t know where you guys were. I was kinda worried.”

Our house did seem to have grown during our month away. So many rooms and so much stuff. Not sure why we need all this space, but It is nice to enjoy the luxury of using the facilities without my family asking promptly, “How much longer?” or feeling the need to run up to my in-laws house in search of a little privacy. We love the tiny, hairy cottage, but this is our home. Four bathrooms may be a little excessive, but I wouldn’t trade this house for anything. I love every inch of it.

I have a few days to get this pile of laundry done and the sand cleaned up. By next week our tans will have faded and we will return to our school year schedule. Anna starts her sophomore year with a challenging course load and Jack is ready to face his “rehabilitate the gait” project. I’m looking forward to my next round of art classes and going to keep working on my writing. Dan will keep busy doing his thing — is it bad that I still don’t really understand what my husband does for a living? Even the dogs have fall projects. Keegan is getting retested (fingers crossed) and Finn is working on not biting people who approach our house.

The Maplewood Torreys are ready for the light to change, days to get a little shorter and digging out our jeans and boots. Wait — It’s 90 degrees outside. Maybe I will just focus on the fact that it is still VERY MUCH summer. I hope you all are enjoying every drop of these last days.

Love, Jess11666281_10207280584240249_2583005819993036187_n