You will die with Alzheimer’s

He was pale. His brow was damp. His blue eyes looked more blue for the tightening of his pupils. The Tardive Dyskenesia made his jaw cock side to side and his fingers drum rapidly. I could barely stand the sound of his dry tongue in his mouth, a response to heavy anti-depressants. For many, many months doctors and therapists had claimed, “severe depression,” but today someone finally said, “your dad has Alzheimer’s.”

The neurologist also said, “you won’t die of Alzheimer’s, you will die with Alzheimer’s. Our patients generally die of pneumonia when they become too sick to get out of bed.” He said “here is some literature,” and “come see me in two months.” He did not say, “I am sorry,” or “I know this is hard to hear.” He left the room. The silent neurology resident followed him like a strange lamb observing how flocks are slaughtered.

We drove home listening to the Beatles. I asked him if he recalled hearing them for the first time. He did. “Did they sound like something new?” He said they sounded “happy.” The first time he heard them was after returning from Japan. He was stationed in Okinawa as a Navy doc during the Vietnam War. “Will you write down your other stories for me?” Sure. “The Harry the Hat stories, and the one about canned peaches at your aunt’s house?” Sure. “And that bully you punched?” Yes. We laughed. He put his hand on my arm. He said, “I am sorry; I know this is hard for you.” He always said the right thing at the right time. I have never known another human who finds such ease in others’ feelings.

I took him home. He told mom. She did not cry. He reached out his hand to her. She sat, teacup in one hand and his hand in the other, disappearing into her oversized floral chair. He bent to hug her. I took the teacup. Her long, lean arms slung around him. I crept away. More tea.

I peeked in from the kitchen many minutes, but not a word, later. They had moved to the couch where he could lean on her. She was in the sun. He was in the dark, split into slats by thin bands of light creeping through the wooden shudders. I brought toast with too much butter like he liked it, like she complained about, and three fresh cups of tea. We said nothing I can recall. I haven’t decided yet if memory means more, or less, as of that day.

Then he got up to call his son. A credit to what the disease had not yet touched, he made up an excuse to get off the phone within minutes of delivering the news. He paused in the hall. When he returned to us, the room was dark.

“I need somewhere to collapse.” My mom and I stood, sweeping books and laundry from the couch, making way for him. “No; I don’t want to lay down.” He leaned toward me. I recalled suffocating my tears into his shoulder the first time he took me to hear the orchestra. His shoulders now slumped and subtly shook. Crying overtly would be a disservice to our forty-year history of just gently holding on.

He sat down, finally, like a child with both arms hanging between his knees. He put into words what most of us say with tears. He said, “I feel heavy things falling down on me.”

Thank you, Lesley Ryden

“To the Middle Season Mama in May” made me cry for an hour out of relief that it’s not just me…I think what I would add to the loneliness, worry and guilt Lesley describes is that working + parenting is a constant ebb between sail and fail. I’m doing well at parenting and work suffers, and vice versa, and there are lots of vice versas, including being present for my friends, noticing my spouse, caring for my Dad with Alzheimer’s, protesting destruction of the planet. Yet, I’m not about to give anything up. What I’m trying to do is get better at saying, “you did the best you could” and actually feeling accomplished. And sometimes, I really miss the pursuit of excellence. “Nailed it” refers to completely and utterly different standards than it once did. Also, I both read this and I am writing this behind the locked door of the bathroom, where I often hide to catch my breath on the auspices of something else…

Addendum: I perhaps maintain a little more empathy for the parents of tiny ones than the article may indicate. I somewhat believe the old adage our brains are pre-loaded to forget the pains of childbirth, recovery and the special kind of exhaustion reserved for those up all night with crying, damp, hungry bundles of sweetness. But oh, how I miss the naps.

https://awordthatmatters.com/to-the-middle-season-mamma-in-may/#.XOAM3pOXPy8.facebook

The Doctor is in…

Dr. Doug Hedlund is now a resident of the Veteran’s Home in Minneapolis. We invested heavily in paper and red tape over two years to get him there. He was proud to end his life, he said, in a home for Veterans. It will save mom from financial dependency, he said, if he moved there when he lost his sense of place and time. Today it is 1991, he said upon arrival, and we are at “the hospital” in Baltimore. No, but it is winter, however fair a question that is beside a floor to ceiling window after the snowiest February ever in Minnesota. On the way over he grumbled that I was “dumping him” with no warning. I attempted the truth and did not change his thinking. Nothing changes his mind but himself and his disease these days. So I asked instead, “can you be a little nicer right now?” No.”

Old midwestern men raised by dark Swedish homesteaders married to effervescent Norwegian ladies that arrived in North Dakota via the St. Lawrence Seaway do not get sad. They get all-the-angry-Fargo-can-muster-at-0-degrees-and-nothing-to-see-for-miles. This is a bone chilling cold. That was him today.

My mom asked “what’s wrong” with genuine curiosity when I was tearful afterward. She is back-from-the-grave-many-times tough. You’ve asked “how is she?” She is fine. She will be until she’s oddly aggressive about her lost hat or she is laughing so hard she gets to cry.  Sad and vulnerable aren’t options.

I was utterly impressed by his highly orchestrated welcome. I immediately liked his nurses and neighbors. Everyone we met today was either an immigrant or Veteran, a fascinatingly American combination. I like his view and his room. He was deeply sad and confused when we left (again, this looks angry). But I think he will eventually be ok.

He is available for visitors at any time. You could be one of his first visitors since his diagnosis five years ago. Alzheimer’s, we have found, scares the best of people away. Yet is does not scare children like other disease that we can see. He is not hooked up to machines. He looks and sounds the same, albeit thin. He’s a little grumpy, but he is also funnier than I ever remember him in his health. He does not mind at all if you speak of legos, dragons and your troubles at school within the same sentence. He still remembers faces. He still recognizes love and warmth. He might not know your name, but if you knew him, you understand executive functioning, lightness and small talk were not his gifts at the best of times.

After 53 years of providing therapy, Dr. Hedlund is at the office most of the time these days. His pitch is entirely legitimate: what brings you in, how you are sleeping, are getting exercise? Worst case scenario upon your visit, you are likely to get some free therapy and perhaps even a diagnosis. At first this was troublesome to the staff at Brookdale Home’s Memory Care Center where he lived the last nine months. They were distraught when he diagnosed residents with “schizoaffective disorder” or “psychotic symptoms” or simply “depressed.” The lead nurse saw only benefit: he was often tailed by residents who knew they could bend his ear. Women, in particular, followed him. My mom’s explanation? “He still has hair and his eyes are twinkly.”

Please visit. It’s a nice place to hang out and walk on campus, look at the river, play pool or do a puzzle with a view of the falls. You can shake hands of everyone there and say “thank you for your service.” You need not fear saying the wrong thing–he will not remember.

My dad led his life in service to others. He is the most insightful listener I have ever witnessed. He stared down dark holes of depression and anxiety his entire life without ever losing sight of his kids, wife and patients.

His last chapter appears to be a maddening disease, family and friends that love him, ice cream available all day, and a nice view. He is out of home, money, sense and time. So be it. 

Aside: you were terrible company today, Dad. Terrible. From the bottom of my heart, thank you for raising me not to take it personally and not to fear your pain. Thank you for being a very real, honest, fiercely brave and brilliant dad.

The doctor is in. Please go see him. 

If you don’t ask, you may never know if he remembers you or not. This does not matter to him. Very likely, he will be curious, he will be oddly mindful for a man losing his mind, he will attempt some jokes and he will share his free ice cream. 

Floor 2, Building 21. Minneapolis Veteran’s Home. Appointments daily.

A Big 7

IMG_5118I have few photos and lots of blurs of Wesley because he never stops moving. “Moving” is actually an oversimplification. We once mistook seven men with crow bars stripping the roof off our house for Wesley. We awoke to the noise at 7 am and laid there thinking it was Wesley’s normal Saturday morning routine until he leapt upon our shins and announced “the roofers are here!” Wesley bounces.

Wes is silly and stubborn and sweet. He is industrious, precocious and smart. Aside: his older brother is sitting on him right now saying, “I bet you can’t sit still for 30 seconds!” Easy win. Wes makes us laugh and run and leap with him and we barely keep up. Sometimes just for fun, we set a timer and all three of us attempt to follow every move Wes makes, like those early brain development research projects, for as long we can. Not one of us has made it past five minutes. Luckily, Wes also enjoys hard work. By the time he was three, it was Wes I requested when I needed help lifting a bench up the stairs to the front door. Wood to haul? Snow to shovel? Truck to unload? Call Wes.

Wes is also my child who hates his dad’s tomato joke because he feels bad for the one told to “ketchup.” He sleeps with a family of “not stuffed” foxes. He plays with my hair. He dresses “fancy” in bow ties and sport coats to special occasions, like weddings, school picture day and breakfast with his grandparents.

Aside: he just “tapped” my shoulder for attention and I am pretty sure I will have a bruise. 

You’re killing me, Smalls.

Before Wesley was born, I was walking down a trail when he kicked so hard it knocked me off my path. That metaphor is not lost on me.

Today, Wes woke up and said “I am no longer a small six. I am a big seven!” This also means I am no longer the parent of small children. When did that happen?

I just overheard Wes say to his dad, “because, Jason, I am the Pig King!” 

I have no idea.

Though he is bigger, I will still “pickle” Wesley IMG_4018up if he asks me that way. I will read to him as long as he is willing to listen. 3.5 minutes, on average. I will always hope he comes to snuggle in the early morning, even though he snores like a bulldog and always manages to head butt my nose. I only find it pleasant because he will grow out of it someday. I will wake him up by singing “I love you” until he has roomies other than his brothers. Then I will text it. I will have very low expectations on his adulting until he is 30 because that is what third children are for in a family of five. Wesley is a big 7 today, but he will always be our “Smalls.”

 

What it means to be men

I’ve been working hard to raise emotionally intelligent boys who share, care and hug. We practice consent. We do not use gender as a qualifier. We avoid gender binaries and stereotypes and heterosexual language. And now I realize, after a decade’s effort of addressing them as people, we have to talk about what it means to be men.DSCN7535

My son has a super-power. Does yours?

“I’m here with your 3rd grader,” my son’s special education teacher explained on the phone.

I waited. Please don’t say he threw up. Did he swallow bits of his shirt collar again? Maybe it’s just a fever.

“Tomorrow he’s going to tell me what you did to celebrate. For the first time in 4 years, he tested at grade level in reading today.”

I had to pull over. I cried on Lake Street for the arguments we had before I learned he wasn’t being lazy or stubborn. I cried for the phone calls and the emails and the classroom visits and IEP meetings. I cried for the books we’ve read, the camps we’ve attended, the tutor we insisted upon-yes-even in summer.

I released the anxiety we have felt as we rapidly approach the end of the 3rd grade, knowing only 25% of kids who cannot read at grade level by then are predicted to graduate.

I cried with gratitude for the generous grandparents who have financially supported his needs, the hours of creative problem solving his tutor has dedicated to him, the kindness and patience his teachers have provided him and the skills his special education team employed to get him this far.

I released the guilt that we hadn’t done enough.

We knew going into kindergarten that something was different about him despite the fact his pre-K screening was normative. Come to find, he had all the hallmarks of Dyslexia. We asked about testing and our assistant principal suggested we wait–see how he does.

In Minnesota, kids without a diagnosis qualify for special education through the discrepancy model. They receive services if testing shows their ability level and performance level are disparate enough to suggest a “specific learning disorder.” Parents are often encouraged to wait until first grade to test because it is very difficult to qualify on the discrepancy model as a kindergartner.

The only other way to qualify for special help is a diagnosis and 504 plan. We were told by our pediatrician that Dyslexia, which we suspected, was an educational diagnosis. Insurance would not cover the $2000 neuro-psych testing. And guess what? School psychologists cannot diagnose Dyslexia because it is a medical diagnosis–an ugly catch 22.

So we had to let him fail first. This is what it looked like.

He was behind when he started kindergarten. He sat in a classroom feeling baffled while kids around him captured things he could not even see. He loved his teacher and she loved him but he cried before school everyday. He had tantrums after school. He chewed his clothes and his own lips to pieces. He had eczema. And honestly, I am fairly certain he had the best kindergarten teacher in this world.

By first grade he called himself “stupid” often. He told us he hated himself. He had emotionally “dropped out” of school and developed anxiety.

“Oh,” they said. “Now THAT is a medical diagnosis. NOW insurance will cover testing.”

Still at reading level A, the school then wanted to test him. His teachers knew he needed extra help. The educational psychologist described the findings and called it a “specific learning disorder.” Though he was in the 2nd percentile for reading, he scored in the 96% percentile for comprehension when stories were read to him. The psychologist looked me in the eye and nodded his head as he said, “I cannot make a diagnosis of Dyslexia.” Consistently in this process, the school appeared to be going above and beyond what they were allowed to do for him.

He would now be removed from his classroom for two hours a day of specific instruction in reading and writing.

He also received accommodations. Our school has coordinated assistive technology, shielded him from unnecessary standardized tests, placed him in classrooms with student teachers and provided him extra support. Unfortunately, with a classroom of 30+ kids, this often just means expectations are lowered for dyslexic kids and they are excused from some activities, like spelling tests and reading aloud.

Though his teachers were incredibly supportive and skilled, he made very little progress in reading or writing in first grade. The primary skill he learned was pretending to understand.

He had delightful friends but they accidentally hurt his feelings daily. “Why can’t you can’t read that?” Some laughed at him, not understanding. He developed strategies to avoid attention. He got amazingly good at deducing what was happening in books and worksheets from the context. He became more and more introverted and more and more creative, also hallmarks of a dyslexic brain.

His special instruction had a ratio of one teacher to five kids at most. The tools that our wonderful, big-hearted, special education teacher had were blunt instruments for a group of kids with a wide variety of challenges: lower IQs, ESL, Dyslexia, ADHD, unknown. She was not provided adequate resources or training to meet the disparate needs of all those children. This is happening across the country–our situation was not unique.

We found a grant for her to attend an Orton Gillingham reading instruction training. This is a sharp tool. OG is one of many evidenced-based strategies for teaching struggling readers that is multi-sensory, going beyond Response to Intervention models. Within months the following school year, she told us her training was creating change for kids who were unresponsive to everything else she had tried–it worked.

She helped us find him an after-school tutor and introduced us to Grove’s Academy, a school that incorporates evidenced-based practices like OG into the classroom experience for neurologically diverse learners. I asked him if he would be willing to spend six weeks of his summer at reading camp. He looked at me, blue eyes welling tearfully, cheeks blown out and angry red under a flop of white hair. My mini Einstein. He shook his fists and stomped his foot and screamed, defiantly, “FINE!” and walked away. Another hallmark of Dyslexia: our son is tenacious.

Grove’s was able to say out loud what public school psychologists could not, “the findings of his test results are consistent with Dyslexia and Dysgraphia.”

You may be against labels. So are lots of parents and educators and therapists and pediatricians. But let’s be real–Dyslexic kids without a diagnosis have labels for themselves and they live with the labels others assign them: stupid, lazy, stubborn, defiant, disturbed.

Nothing, NOTHING, has helped his crumpled heart more than when we told him, “You have Dyslexia.”

“Buddy. You know all that testing we did? And you know how it is hard for you to read like some of the other kids? Well, we found out there is a reason that you’ve been struggling. Your brain is unique. The way you learn to read has to be unique too! They call it, “Dyslexia.”

He jumped up into my arms and crushed me in a hug. He was wearing a cape. He said, “I have a super power!”

Unless you have a child with Dyslexia or another learning difference, I can’t imagine you can truly understand the significance of early illiteracy on your self-confidence and sense of wonder. In grade school, we go from learning to read to reading to learn. Wilder entered school excited to use his gifts and talents to learn. It took him less than a school year to realize that there would be destructively little time in his school day for what comes easily to him: creating stories and art, reasoning scientifically, empathizing with others. Grades one through three are really all about reading.

But he is getting better over time at advocating for himself. His support team in school works together to ensure his days contain successes and opportunities to use his assets. He understands that despite the fact he has to work harder to do a lot of things, he is exceptional at some things. He is also getting better at failing with self-confidence.

Let’s go back to that phone call. She knew it was a significant moment. She knew how hard he worked to get there. She was determined that we celebrate him. His teachers are incredibly committed and skilled–they offer multi-sensory approaches, individualized instruction, relationship building, positive reinforcement, high expectations. When we celebrated that night, we toasted the educators he has on his team and the resources they have been able to engage on his behalf. I want kids with dyslexia everywhere to have these opportunities and from what I have learned from other parents, we are very fortunate.

A group of parent volunteers and teachers have spent thousands of hours at the Minnesota state Capitol attempting to get lawmakers to insist public schools provide kids with reading disabilities an equitable and appropriate education: Decoding Dyslexia Minnesota.

This week I sat before a Senate committee asking them to provide the Minnesota Department of Education a Dyslexia Specialist. We would like to see: early identification that avoids early school failure, classroom instruction in reading that incorporates strategies which will work for all learners, and grants for teachers to access professional development in Dyslexia.

They only appeared moved by this…

I’d like you to picture something you learned to do for the first time recently. Do you have any new hobbies? Professional skills? Anyone trying Twitter?

Now imagine your first attempts. Was the learning curve steep? Did you ever doubt your abilities when your colleagues learned faster? As you experienced success, did consistent progress keep you engaged?

At the beginning of 3rd grade my son was at the same reading level he was at when he entered kindergarten. If you had made no progress in 3 years, would you have kept going? Would you feel anxious? Depressed? Might you act out?

  • Nearly 1 in 5 people have Dyslexia. ​(Connecticut Longitudinal Study)
  • 50% of adjudicated youth tested were found to have undetected learning disabilities (National Institute for Literacy, 1998)
  • Approximately 80% of people with learning disabilities have Dyslexia which makes it the most common learning disability ​(American Academy of Pediatrics 2011)
  • 3rd grade reading proficiency scores can be used to predict the number of new beds needed in prisons 10 years hence ​(OhioHigherEd.org)

I am hopeful these upstream efforts will reduce the emotional burden of Dyslexia, especially for the most vulnerable kids who may or may not be identified because the expectations on their learning and behavior were unjustly low from the beginning. There’s no reason to let these kids fail when we have the tools available to enable their success. Despite limited resources, our child’s school is effectively supporting him. I can’t stop there. All these kids deserve to know that they have super powers.

 

Call. No excuses.

flag

Is democracy moving backward?

Make your phone calls to your U.S. Senate and House offices. I heard in every office in D.C. I visited this week that phone calls matter. The phones in Republican offices were ringing off the hook. Our Congress needs our voices behind their decisions, especially if they are considering decisions not supported by their leadership! Every phone call has to be logged. If they get more than 5 in an hour on an issue, the concern “goes in the hopper” to be addressed by the Congresspeople themselves. If they do not, it is only the 22 year-old legislative aide that hears you. These 20 somethings are astute, committed people and we need their attention. Don’t underestimate them, and don’t underestimate yourself. Your 20 second call is worthwhile.

Tomorrow is our inauguration…

SanFranflappers_2This is perhaps one of the most intuitive decisions I have made in my life. My friend texted “I am marching in D.C. on January 21. Are you coming with me?” “Yes.” That was it–all the thinking I did on the matter until this week. Now I am thinking 24/7. I am having bad dreams. I can’t sleep.

When I told my cousin about the bad dreams, she said “Get them out of your body.” She told me to write them down and burn them. You are “feeling the fear in the world.”

That feels so true. Do you feel that heaviness too? When I wake up, when I drive, when I put on my coat. My heart beats in my throat with an extra thump or two. I can’t remember what to attach the feeling to–My marriage? My work? Dad’s Alzheimer’s? The new President? My brain sifts through the cabinet–where do I file this feeling? I can’t properly tuck it away. Its like trying to file confetti.

I was a little irritated with my mom all day today. I thought, “She doesn’t get it.” At 9:45 p.m., however, she proved me entirely wrong. I should have known. “Be safe and enjoy your time in D.C. I will be thinking of you and watching for you on TV.” I rolled my eyes and laughed–like I’ve done since age 12. And then she said so earnestly, “I would have liked to have done that when I was your age. I love you.”

I am full of the love of generations of women. I was raised in this lifetime and maybe many before by women who gather when gathering is needed. I am going to Washington to resist anger and hatred. I am going to amplify our human rights. I am going for the world my boys will know as men. I am going with women I love. I expect to run into neighbors, former students and old college friends. I expect to hold hands of strangers, laugh, talk, roar and feel mighty. This is how we face the next four years: we participate.

Why am I going to protest? I am not going to Washington to protest. I am going to govern.

 

 

Heavy hearts, hands full: what to say to children when the bully wins

I am sharing my Facebook update here from last night at 2am. I’m broadcasting it wider because I have had so many uplifting  “thank you’s,” “shares,” and comments since then. If I can bring a little light and solace today, it will warm my heavy heart:

It’s 1:57 and I’m thinking about what to tell my kids in the morning. Here’s the plan:
1) Trump is now our President but it does not make him your role model.
2) It is now, more than ever, important to be kind to others, respectful of women and inclusive to differences.
3) I told you love wins and now you are seeing someone who acts like a bully win. People pick bullies to protect them when they feel weak and afraid. If there are lots of people among us feeling that way, we have work to do.
4) Sometimes grown ups make mistakes. I think as grown ups we’ve made a mistake by giving an important job to someone who bullies others.
5) You are safe. It will be ok. The world is full of good people.*

*I am afraid for us all.

Yes, we have a ton of work to do.

img_0001 Hello this is Shawna and I am calling from the Hillary for President campaign. No I’m not a “jerk.” Nope not an “intruder.” No it’s not “illegal” to call at your kids’ bedtime but I feel your pain. Oh nice, you voted already? Woot Woot! Waited for 70 years? You cried? You’re crying again. Yes I understand. Yes I believe my grandmother would too. First time voting? Exciting! I hear you, but I’d still pick a candidate. Well, which one best aligns with your hopes for the future? Congratulations and thank you for choosing to vote! Standing Rock? I can imagine. So disheartened. Let me find out…Ok how about 9 volunteers Saturday morning? Meet you at Little Earth? Absolutely. Well, I suppose because I want to look back on the first campaign for a woman President and feel I was a part of it. I definitely think door knocking is still worthwhile. Minneapolis, yes, but it’s a big state. I believe her candidacy has merit–I’m not just voting against him. Yup. Totally understand. The emails concern me less than the lawsuits. No but I am raising boys. I don’t want to have to tell them our President is an inappropriate role model. Pot roast? No I can wait. Most important to me? Access to health care. I’ve been reading her policy for two weeks. His? A 10 minute read. Yes the whole thing. Do you know where to vote? How about this weekend? Vote early and the lines are shorter. No, legally your employer has to both allow you time and pay you for that time. I’m not kidding. It’s a misdemeanor. Yup. Text me and I’ll report them. Our kids’ school is a polling place and this is the first time I’ve ever wondered if they are safe there on voting day. Right? Sad. I’m glad we know more about our country now too. Yes, we have a ton of work to do. More than I’d hoped as well. Yes I’m with you. Yes I’m with her.

img_0002

I’m with her. No, really. I’m with her.