Transition I–Sometimes I’m Still Angry

Summer has passed and the fall weather surprises me with the warmer than usual temperatures, sun and no killing frost. I’m having a hard time realizing over a month of school is behind us.  I didn’t take any official courses to further my credentials this summer, but the experience I lived through, and continue to live, certainly did educated me.

As I wrote in my last blog post back in May, I am a forever-parent. A parent of a child with special needs that resulted in me diving into the realm of filing for guardianship and SSI benefits.  What an educational tour it was.  Each time I thought I’d filled in every piece of paperwork, made the necessary calls, and finally understood the system, another piece of paper would enter my mailbox, another message would blink on my answering machine, or another hour or more was gone from my life as I tried to determine the next step or what I’d missed in the previous step.  As an educated adult with four college degrees, I felt uneducated, unprepared and just plain dumbfounded many days this summer.

I waited to file for SSI just because I wanted to concentrate on the guardianship portion and wasn’t quite sure if we really should apply.  Numerous people gave me their opinions which I appreciated, but I still waited while thinking, I’m educated.  I teach people how to read and write.  I have friends who know pieces of the system. How can I not figure this out? How do people that aren’t as educated figure it all out?

With nervousness rising to the top, all the emotions the morning of the guardianship court date took me by surprise.  There was the humorous moment as Amy said, “I don’t know.” when asked by the judge if she will listen to me, her mom and newly-appointed guardian.  And the proud moment as Ali helped Amy through the proceedings even offering to be sworn in by her sister’s side and answer questions too.

I’m still working on learning my new role as guardian and registered payee, and we are all still processing Amy’s new placement in the Transition I program.  She’s struggling a bit at home. Her daily routine requires more independence since she’s out in the public more than the school environment, so I’m not surprised. We work through those moments, but I still find myself getting angry wondering if life will get easier as she continues to mature and grow. Then I remember “Little Things”   and smile.  (Thanks Kinetic Affect.)

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Guardianship

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Sometimes it’s hard not to be angry. On Sunday, June 5, we attended Amy’s high school graduation ceremony. I was proud but I’m quite certain my feelings were not the same as the other parents as they watched their children walk across the stage. Amy was walking into new challenges just as her classmates did the same. But is it really the same? Amy’s not looking to be out on her own, planning her gap year, attending college, joining the military, applying to an apprenticeship, or looking for a job until she can figure out what she wants to be. There is no high school diploma for Amy, but a Certificate of Attendance. To say I am not proud would be a lie, but to say there are no feelings of resentment or anger would be a lie too.

As other senior parents celebrate their children’s 18th birthday and realize their children are now legal adults, we are figuring out how to apply for guardianship. Yes, it’s one of the additional items we, as parents of a child (now adult) with special needs, must write on our to-do list. In the past few months when I’ve mentioned this, everyone I spoke to was surprised. They looked at me with a blank stare until I reminded them Amy turned 18 at the end of May. “She’s legally an adult.”

“Oh, I guess so. I never thought of that.”

I sarcastically wanted to say, “And why would you?” but bite my tongue, as I know it’s the anger inside of me.

One time during the above exchange with a friend, I remembered a morning around my own high school graduation. My dad entered my bedroom, sat on the end of my bed, explained to me how my decision the night before upset my mom, and how he told my mom, “We’ve had 18 years to raise her. We’ve done our best. It’s up to her to make the right decisions.” Recalling that memory helped me pinpoint some of my anger. I would not be releasing Amy into the world of adulthood as my dad did for me that morning.

The Graduate

The Graduate

As I celebrated Amy’s accomplishments this May and June, I fluctuated between happiness and resentment. Friends and family at her graduation party told us, “She’s so grown up.” “She’s a great young lady.” “Look at how she is greeting every single guest.” “You’ve both done a great job raising her.”  I thanked them as I nodded in agreement.

The next day, however, as I helped Amy come down from all the excitement the day before and tried to help her understand I couldn’t make my homemade enchiladas for supper when it was already 5:00, I felt the anger rise. Unlike most parents of seniors, instead of having to prod our daughter to write her thank you cards, we will be the parents who will need to help her match the signatures in the cards to the mailing labels. And, this is just one difference proving to me that, unlike my parents, we will never be able to fully release Amy into the adult world. Instead, she will always be our adult-child. The resentment triggered at these moments, eventually turns to guilt. Why do I have the right to be angered by my child’s needs? I know too many parents who have lost their child or whose child’s needs are so much greater than Amy’s. It is then when I take a step back and tell myself, sometimes it’s hard not to be angry, but I must also find a way to grateful too.

Best Time of My Life

We hear it often, “That was one of the best times of my life!” People announce it after vacations, celebrations of monumental events, evenings sitting around with friends enjoying conversation and laughter (sometimes under the influence of a few brews), and activities where adults transform into children again. But, how often do we hear people say it after spending a week at work? And if we do hear the proclamation after that situation, how often do we judge the person to be a workaholic or are we tempted to say, “Get a life.” But why? Why can’t work be one of the best times of our lives? Why do most people look at me strangely when I tell them the work I do for NWP is one of the best times of my life even if it takes me away from my family?

National Writing Project work certainly is not easy, but maybe that’s part of making something a “best time of my life.” It’s the challenge. Late last summer, NWP asked me to spend four-and-a-half consecutive days in a room reading, analyzing and writing about other teachers’ student writing. That’s right, we didn’t look at even a single paper of my own students’ writing. I love being in the classroom with my 8th graders (yes, 8th graders), so why was I willing to leave them this past week to do more of what I do as an English teacher? Everyone in the NWP knows, but how do I explain it to others, including my students? To say I’m passionate about teaching and learning works but is superficial. Cliché’. To say I’m honored NWP Research and Evaluation staff think I can add to the work, is an understatement.

This past week, in two small hotel conference rooms, NWP staff and Teacher Consultants gathered to build capacity. The experts in the room, those I cling to in hope of being more like them, know and expect those of us less experienced, to teach them something too. That’s a piece of the challenge on my part, to add to the conversation even if I struggle to find the academic vocabulary to do so. It is the belief they have in all of us, regardless of our experience, to learn and grow with them, not just from them. Not one of the more veteran staff members or TCs is there to only impart their knowledge; we are all there to learn from each other.

I tell my students, “Our classroom is similar to a gym, but instead of our bodies sweating, our brains sweat.* That’s exactly what my brain did this week, but instead of dropping pounds (we read, we eat, we read, we eat), I built brain muscles. During this past week, I worked on a shared computer with two amazing, intelligent, experienced educators. They taught me to predicate commentary. They shared their own struggle as we mined our vocabulary to explain exactly what we saw in the student writing. Then in true NWP style, they paired me up with another less-experienced, but still amazing, educator to peer conference and fine-tune our individually-written commentary. As Bob and I analyzed the student writing, predicated, and wordsmithed our confidence in our own knowledge and expertise grew. It’s that feeling, the feeling of growing, of learning, and helping each other, that is one of the philosophies of the NWP since its inception. It’s one of the reasons participating in any NWP event is, “One of the best times of my life.”

Friends and Motivators

A year ago, I wrote about my almost-40-year friendship with Lisa. Yesterday I visited with Lisa again, along with another classmate who I hadn’t seen since high school. Numerous times Bill and I tried unsuccessfully to arrange for a quick lunch or drink when I’ve travelled out West. This past January our schedules finally worked until I my missed connection in Detroit ruined our three-hour window. So when Lisa texted me on July 4 that both she and Bill would be in town later in the month, I immediately checked my calendar only to find out I would be out of town except for a few hours on Sunday. I kept my fingers crossed and Lisa kept me posted.

Yesterday, for a little under two hours we reconnected. Our conversation covered everything from jobs, romance, sports, children, Burning Man, to life in the UP and our parents. During this time, two specific moments defined why Bill and Lisa are in my life even though distance separates us.

Bill’s comment, “I haven’t seen any blog posts lately from either of you.” and Lisa’s question, “Have you been running?” provided that little extra push (and guilt) to move me from thoughts to action. I have a list of blog post ideas, including one about how I became a runner this past spring, but then I clean the bathroom, do the laundry, water the flowers, walk the dog, check social media, enjoy the sunshine, visit with family and friends, and continue to postpone the writing, and running.

Not anymore though. Last night I mentioned to Todd about registering for a race with Lisa in September. After going for a quick run this morning, I’m making it a priority to write this post before work invades my free time this week.  I revisited my blog post list and added to it too. All because two people, two people I rarely see, know me well enough to make a comment and ask a simple question. This is why I don’t let distance and time separate us. This is why I call them friends (and motivators). Thanks!

PS—Lisa, waiting for your post with the picture.

Who’s to Blame?

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It was right before our second visit with a geneticist when my sister asked, “Why?” How many times had I asked that question throughout my childhood and now as a parent? The previous visit to the specialist resulted in no answers my mother’s instinct didn’t already know; Amy’s differences were caused by genetics. Whose genes were the cause, the doctors didn’t know, but in the back of my mind I blamed mine. (I am not aware of any special needs on Todd’s side.)

At that first visit the doctor also recommended another visit in two more years as genetic tests were improving so quickly. I missed scheduling that next visit by a whole year. Amy was five, enrolled in an SLI-Kindergarten class, showing progress and many additional needs when my sister asked why we were bringing her again. “How’s that going to change anything?” I had pondered this same question, and it was one of the reasons I delayed the appointment. Amy was Amy. No genetic testing was going to change that. No special shot or treatment would make her “normal.” My only hope was three-fold: more information for the medical field to study, the possibility of a label that would allow us to connect to other families, and Ali, our other daughter. Even though she was only three, I wanted information to help her understand as she grew up.

At the appointment, the doctor informed us there was indeed new testing, a “fish tail” test. This test looked at the end of the genes, which previously were darkened so much they were blacked out. I don’t remember anymore about that appointment. I’m sure we revisited the information we’d given three years prior and updated it, but now we just waited for the test results.

What we eventually found out was the new test didn’t find anything out of the ordinary. We still had no answers to what genes caused the differences. We still had no label to link us to other families or specific support groups, nor did we have more information for Ali. It’s been eleven years since that visit. There are still days when I wonder if my genes are the cause, but then I read or hear something that reminds me to let it go today. Amy’s fine. I’m fine. We’re all fine.

62 Today

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60th Bday

60th birthday smile

Today Uncle Dave would have turned 62. Instead he’s in Heaven. I miss him but not as much as I expected. Maybe it’s all the memories I still have or the busy life I lead. I really don’t know. I did think of him when I first woke up, during my morning walk, as I wrote the date on my classroom whiteboard, when I saw a colleague at lunch, as I drove to Ishpeming then visited with a friend and on my way home again. I wondered what words, if any, would push me to write. As I checked Facebook fifteen minutes ago, there was no urge to type. Then I read my cousin’s wife’s blog Demystifying Special Education.

At Uncle Dave’s funeral Johnny said his wife and I are similar. I agreed and after reading her post tonight, I agree even more. Thank you Chris for giving my feelings words today. As I read the post I was reminded of all the lessons I learned from Uncle Dave. Sure I may deserve the sibling thank yous, but today, on Dave’s birthday, I want to thank him for teaching me patience, flexibility, sensitivity, tolerance, understanding, perseverance, loyalty and unconditional love.

 

Just Listen and Learn

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During the funeral service of Uncle Dave, I leaned over to Todd and then to Pam and said, “I miss his echo.” During the next choral response, my sister waited a split second after everyone else and said, “Church.” It was at this point during the service that my hand instinctively flew up to cover my mouth and my laugh. It wasn’t Dave’s voice, but that memory still makes me chuckle as I write this.

Growing up and standing next to Dave in church was embarrassing at first. His voice mocked me throughout the entire mass. After each “Lord have mercy,” Dave’s voice echoed a half-beat behind, “..cy” while the entire church was quiet. I’m sure Father LaPine purposely waited for Uncle Dave’s echo before moving on. During the Profession of Faith and Lord’s Prayer it was sometimes difficult for me to say the right words because I’d start listening to the mockingbird next to me. Luckily it taught my ADD mind how to focus and not be distracted by outside stimuli.

Singing, in church or at sporting events during the Star-Spangled Banner, was the same except Dave not only mocked those around him, he held the last note a little bit longer than everyone else too. Luckily, unlike my own, Dave’s voice was beautiful.

While in church trying to ignore the mockingbird next to me, I would pray for an answer to a question that hounded me for years: Why did Dave have to live at my house? Then my own daughter was born, and we discovered her special needs. At that point God answered my prayer; Dave provided me 22 years of experience.

Once Amy entered grade school, she participated in her classes’ musical performances. It was tough to attend the first performances and see her not being “normal” like the others. Her differences became more apparent as she moved up in grade school. The other kids’ became comfortable in front of a crowd and could focus and remember the words. Their gestures were right on time, but not Amy’s. She might do a few gestures but she’d also be more than a beat behind. I knew there were parents wondering, “How could we, her parents, allow her to perform and obviously show her differences and even maybe ‘ruin’ the performance? Weren’t we embarrassed?”

Performance

5th Grade Performance

I’ll admit it was difficult to watch at first but I thought back to those years in church with David and knew we were doing the right thing. I learned to love the performance and know that I am example for other parents of children with special needs. We shouldn’t be embarrassed and withhold the opportunity for Amy to perform.

In January of her sixth grade year, Amy performed on the big stage–Kaufman Auditorium–with the other sixth grade students. Prior to the performance, Amy had shown me the movements, and I’d heard her singing in her bedroom or the bathroom during the weeks before the big night. Todd took off from work early and drove straight to Kaufman. We waited in the balcony, worried about just how Amy would perform on the big stage with spotlights. As she walked on to the stage, I saw her peering into the audience trying to find us. I had reminded her numerous times not to yell out, “Mom! Dad! Ali!” and give us that full-arm wave as she did in the past. This time she didn’t. Once she saw us, she only smiled and moved on.

When the music started she looked up at us in the balcony and smiled. After the first phrase of the song, I heard my newest mockingbird. Just like her uncle, her voice rang out a half-beat longer than the rest singing that last syllable. Todd and I looked at each other and smiled. Amy continued belting out each of the songs and doing all the hand gestures, some actually right on time.

Today, five years later, Amy’s singing gives Todd, Ali and me a reason to glance at each other and smile. She’s a One Direction fan, thanks to her sister, but in the car she’ll turn up other tunes too and start singing, a half-beat behind. I’m thankful now for this mockingbird. Her singing, just like Uncle Dave’s, causes me to stop thinking of life, focus and just listen and learn to enjoy the song.

 

 

Thoughts from a Winter Traveller

4:00 am wake-up. The wind is howling and there’s an inch of snow on the sidewalk, but that’s to be expected when traveling from Marquette in January. The commuter plane arrived last night and is scheduled “on time” according to the airline’s website.

I’m thankful for Todd’s willingness to rise early and drive me on this typical winter morning. It gives me time to change all my phone contacts in my iPhone from only numbers to names. How does a phone decide to make that change on it’s own the night before I’m leaving?

We arrive at the airport, and I notice the long line. It’s too long of a line for the size of the plane. Yes, they are looking for volunteers. Why is it I get these offers only when I don’t have flexibility in my travel plans? In the TSA line, I overhear others saying the same thing as me, “A voucher? What if the weather worsens? I need to get out today.”

No more announcements for volunteers. Someone (or two) had flexibility. Standing, not sitting, in the secured boarding area I hear another announcement, “Delay in boarding due to weather in Detroit.” Detroit? What about the cold temperature and blowing snow here in Marquette? No, of course that’s not a problem.

Thirty minutes later, it’s a go to board the plane. I’m thankful for the jet bridge but wonder why it can’t reach completely to the plane. Must there be a two-foot gap between the cover of the jet bridge and the actual plane? The blustering wind whips through the gap as I step into the plane and see the flight attendant holding the navy blue curtain as a shield around her while greeting us with a forced smile of friendliness on a frigid 5:50 am morning.

I’m in seat 11C. The woman next to me has a two and half hour layover. Me? Thirty-five minutes between this flight’s scheduled landing and boarding of my next flight. I can do it. I only had fifteen and then twenty minutes last time I flew this round-trip itinerary.

The captain explains the previous delay in Detroit and how once our plane is de-iced, we’ll be taking off. Let the de-icing commence!

And continue. And continue. A few pages of reading, a quick nap filled with head-bobs and another announcement. De-icing is taking longer than expected due to a build-up of ice, but we’ll be on our way soon. Scheduled departure was 6:00. Actual departure? 7:18.

We reach cruising altitude. It’s time for complimentary beverages and samplings, aka snacks. “…I apologize but the water tanks filled in Marquette are frozen so there will be no hot coffee or tea…” My feet are cold but the two-month-old in row 10 is quiet and will continue to sleep for the one-hour flight. I enjoy my string cheese, a little more time resting my eyes, and a smooth flight.

The bumps begin, but it’s time to prepare for landing. Seat 10A and B will need to rebook. “…our scheduling department is aware of our delay and will be rebooking many of you…self-help stations…any ticket agent…” Am I destined to a longer layover now too?   The sky is gray, filled with sogginess. I much prefer the white of snow.

I deplane and find a ticket agent. She inspects my boarding pass. “They’ve probably rebooked you,” as she scans my now invalid boarding pass. The new boarding pass shows my departure: 12:50 pm. So much for lunch in San Fran, but didn’t I know travel in January is always filled with potential?

Glancing at the departure board, I see my original flight still flashing, “Boarding.” Can I make it? A quick pace down the escalator, through the psychedelic tunnel, up the escalator, (why is it built this way?) and a right turn to Gate 34. Yes! People still standing by the gate.

No. The door is closed. “Status: Closed.” The tip of plane’s tail and wing is visible through the window, but another look reveals the door is still closed. I slowly lift the new boarding ticket in my hand and begin the walk to Gate A68 for a 12:50 departure. Maybe the sun will come out and shine through the windows during my layover and writing time.

Post Script: The natural sun never appeared but two blog posts were written (including this one) and my rebooking included a seat in first-class. There is sunshine in the grayness of winter if we are willing to wait to see it.

It’s a Wonderful Life

“I think I’m okay.”

These were the words I said as I entered the chapel for Dave’s internment ceremony. There were no more tears to shed, no more deep breaths to compose myself, only memories. Memories of a wonderful life.

  • An Easter basket filled with pastel foiled-wrapped chocolate eggs, tears pouring down my cheeks and anger in my heart over someone intruding upon my life.
  • Grumbling on the other side of the bathroom door as I frantically knock trying to get in for a morning shower.
  • Teenage tears as I tell my parents Dave-sitting is interfering with my social calendar.
  •  The tussling of my hair and a giggle when he thought I was funny.
  •  A black tuxedo and proud smile as I walked down the aisle.
  •  Arms cradling each of my daughters.
  •  Intertwined hands as I struggle through the crowd and he shakes every Packer fan’s hand in celebration of the win.
  •  Congress Pizza and Christmas TV shows while Dad and Cheryl are away.
  •  Mosquitoes intruding while Amy and I push his wheelchair along the nursing home’s wooded path.
  •  A taste of pureed pumpkin pie eliciting a mumbled, “Yummy.”
  •  The scowl as I videotape him and interrupt his meal.
  •  A salute and a smile as Todd enters the serenity room.
  •  Holding his hand, fists raised, cheering for the Hematites to win another state championship.
  • Tears blurring my vision, my heart breaking as I give him my last kiss on his forehead.

In It’s a Wonderful Life, George Bailey’s guardian angel earns his wings by showing how interactions can have positive effects. As a young child I often wondered why Dave came to live in my house, with my family but as I reached adulthood I began to understand, and I am certain many bells rang when my guardian angel, Dave, earned his wings too.

Gratitude Attitude Bulletin Board

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One of my least favorite teacher tasks is designing bulletin boards. Tonight after reading an article on how to build gratitude in the classroom, I decided to Google gratitude bulletin board ideas. I found plenty with Fall/Thanksgiving themes: Turkey feathers. Colorful leaves. Seeds (of thanks).   What happened next inspired this blog post. I wanted to do a gratitude bulletin board after Thanksgiving and through much of December, but I came to the following realization: December is the “Wish List” month. Huh.

How can we so quickly move from giving thanks for what we have to wanting more? How many of us complain about the Christmas displays arriving earlier and earlier each year? Is Santa even ready for us to be thinking about our wish lists? Do we even have time to give thanks if we need our wish list ready not by Black Friday but by Halloween?

I’m going ahead with plans to have my students focus on having a gratitude attitude not a wish-list, gratitude-dissing attitude in December. I think I’ll start with being grateful I have a bulletin board idea.