Anxiety, Autism, and Cancer - Oh, My!

"Lions and tigers, and bears, oh my!"

So goes Dorothy's refrain in the Wizard of Oz as they are walking through the enchanted wood.

Then they meet the Cowardly Lion.

In the end, The Wizard gives the Cowardly Lion a medal which is meant to represent Courage and we as readers assume that all his problems will disappear. In real life, it isn't that easy.

I've heard it said that courage is not the absence of fear, but acting in spite of it.

Alex has plenty of courage and uses it daily in a life that challenges him at every turn.

Anxiety has always been a big obstacle for Alex. Combine that with sensory processing and communication issues and there are many things that most people take for granted that require a lot of effort on Alex's part.

Getting a haircut?  It took about six years of very thoughtful and intentional supports to get to a place where Alex could get a haircut without having a full blown panic attack. (See "Haircut" - Haircuts)

Going to the dentist and getting your teeth cleaned? That also took many years of intentional effort and supports.

Alex has always struggled with leisure skills. It took many years of careful teaching and planning to learn to go to the movies, go out to eat, visit zoos museums, and travel.

As he's gotten older, some things have gotten easier, and other things that he loved when he was younger have gotten more difficult. My theory is that as he's gotten more engaged in the world and people around him, some things have gotten more overwhelming. Things that once seemed mastered we're at a point of relearning.

Alex has shown tremendous courage throughout his illness and cancer treatments. Often, with that trademark smile on his face.

Alex - Day +6 post auto stem cell transplant.
January 6, 2016

Alex - Six Months post auto stem cell transplant.
June 27, 2016

There's Alex's serious face, though. The one he wears when he's calling up all the courage he needs to do what needs to be done. That might be cancer treatment, but it might also be getting a haircut or going to a movie. Lately, the anxiety has crept back into Alex's daily life more and more. It varies quite a bit from day to day and can be very unpredictable. It turns out that anxiety is not uncommon for cancer patients, and it also isn't uncommon for it to continue after things appear to be getting better. The fear of relapse can be overwhelming. The after effects of chemotherapy and treatments have a lasting effect on fatigue and anxiety.

I know it's frustrating for Alex, and it's frustrating for his dad and me as we try to support him. It feels like we've lost so much ground in what he'd been able to do. He has to relearn how to go places and do things he had gotten so good at. And we never know which days will be good ones and which will be difficult ones.

His birthday was one example. He recently turned 26. We had a low-key party at his sister's house. John's sister's family was there, and our family. It was a fairly small group, and all people he's very close to and comfortable with. We had one of his favorite meals (pizza) and watched a movie. He was anxious and overwhelmed. It wasn't the party I imagined, and I don't know how much fun he had.

This weekend is another example. I planned a short family trip. John, Alex, Tucker (our dog). and I went to Door County for three days. The resort we stayed at had small, pet-friendly cottages so we had our own space. We were going to keep things low-key, go for walks and drives (Alex likes to go for drives) and watch movies. Alex was anxious on the drive, and anxious when we arrived. We got out a little bit, but not much. We got take-out food because I knew going to a restaurant would be too overwhelming.

I'll spare you the blow-by-blow, but it was simply too much for Alex. We arrived in the afternoon on a Friday, and by Saturday morning he was ready to go home. We got some take out food for lunch, took a leisurely (well, leisurely for us) drive to see the sights and went back to the resort. He tried to take a nap, but got up and starting asking to go home.

This wasn't something he had to do (like cancer treatment) so we felt he should have say in what happened. From a capacity-building perspective, we were successful. He stayed away from home at someplace new (although he's been do Door County lots of times, this resort was new to us) and did a few things. We ended up deciding to cut the trip short and came home Saturday evening.

Today, at home, in familiar surroundings his anxiety has lessened greatly. The smile is back.

It was the right decision to come home. I think it was still the right decision to go, because it helped to build capacity, even though it didn't turn out like I hoped it would. But, in the end, it was the right decision to come home early.

The three days of relaxing and fun I imagined ended up to be 30 anxious hours. We planned a respite from cancer, which it was, but it did not end up to be a respite from anxiety and autism. I'm sad that it was so difficult for Alex, but I'm proud of him for how he handled things. He handled his anxiety well, and he was able to make his wishes known and have some control over his life.

Hopefully, we rebuilt some capacity and maybe the next time we try it will go better.

In the meantime, he's got a couple more days to hang out with us at home before he goes back to his house, so we still have some family time with no cancer treatments. Our main goal was to get to spend some time together, and that can happen anywhere that Alex wants to be.

The Fallacy of Waiting Until Life "Settles Down"

Life is what happens when you're busy making other plans.
-John Lennon, from "Beautiful Boy"
-cartoonist John Saunders, Reader's Digest, 1957

One of my favorite quotes is "life is what happens when you're busy making other plans."  Although it's been attributed to John Lennon, and was a line in the lyrics of his song "Beautiful Boy," a little digging reveals that it was attributed to cartoonist John Saunders in Reader's Digest in 1957. It is a quote I try to take to heart.

I've written multiple times about the lessons cancer has taught me - is still teaching me. One that I am working on is to stop saying, "When my life settles down."  I've been saying it and; worse yet, believing it, for my entire adult life. I repeat it without thinking it through.  Yes, I have a busy life, as many of us do. Yes, I don't always feel in control of the "busy-ness" of my life. The truth is that there is much in my life that is of my choosing. And, like most everyone, there are things in my life that are not of my choosing. But every bit of it is just a life.

This lesson is like a two-by-four upside by head once again as I contemplate the fact that Jessica graduated from college, and Alex finished going to school, five years ago this June. I thought that not having Alex in school, and not having Jessica in Boston and in college, would mean things would "slow down." I wasn't entirely sure what was next, but I somehow thought the pace of our lives would change - would lessen, become somehow more "manageable."

That thought is laughable.

Looking back five years instead of forward, I could not have scripted, nor even imagined, the five years we have lived through. Not that it's all been bad, but it has been filled with many significant events and emotions.

It's a darn good thing that my crystal ball didn't work, because I wasn't prepared for what we have been through. As usual, life has to unfold in its own way, in its own time, in order for me to absorb it all.

Five years ago, my mother-in-law was still "her." She was vibrant and funny and loving and an important part of our lives. We lost her painfully, slowly, long before her death a year ago.

My mother was living independently and beginning to have some serious health issues, but still managing to take care of herself. The past three years have been tumultuous for her (that's putting it mildly, to be frank), and she is now living safely and contentedly in a great facility. I am grateful that she is well cared for, but I see her slipping away physically and mentally.

Jessica graduated, spent three weeks at home, and then John and I drove her to her new life and dream job in California. We visited her many times and watched her grow into an adult and began really figuring out this whole parent-of-an-adult relationship. She flourished in her job, she married, and then she got an out-of-the-blue job offer in Wisconsin. This was something none of us ever imagined would happen. But here she is, less than 25 miles away, in her new home, with her new husband and two dogs, finding her way at a new dream job.

We have a wonderful son-in-law as part of our family. If I had hand-picked someone for my daughter to marry, I could not have done better. He is smart, talented, funny, and fiercely loyal. He understood right away all that comes with falling in love with someone with a special needs sibling. We are all so very lucky to have him in our family.

Three of my four siblings have faced significant health issues of their own over the past five years. My oldest sister has lost her son and her husband, and welcomed twin grandsons. As we grow older and face loss, illness, and other challenges, I feel that we've grown closer.

We've lost a number of friends and family members over the past five years. It just never gets any easier. Soon we will mark the first anniversary of our friend, Jeremy's, passing.  Rusty's dad, Mark, died only four and a half months ago. My brother-in-law, Don, passed away just over three months ago. I don't think he ever got over the death of his son, almost five years ago.  He seemed to age overnight. These are only a few of the people we lost. So much loss in so short a time, and each one leaves a gaping hole and a grieving family.

Alex moved out three years ago. He was (is) thriving in his new home - becoming more independent and forging new relationships. He had a part time job and blossomed.

John and I were "empty nesters," figuring out life with no children at home. I learned to fly. I joined an EAA chapter and became secretary and newsletter editor. We bought a plane. John and I traveled. We visited Boston, New York, Chicago, Washington D.C., Maine, Niagara Falls, LA, San Franciso, San Jose, London, Disney World - trips with and without our children. Things we could only dream about doing as young parents.

Then cancer came calling. Our choice was to let it crush us, or stand up and fight. That choice is no choice, not really. We found strength within us we didn't even know was there. We became closer as a family. We learned how beloved Alex really is. We learned who we could really, truly, count on.

Alex is in remission and doing well.  I don't yet feel like we're entitled to call him a "survivor." I'm not sure how much time has to pass, or even if there's a "rule," but it somehow feels like tempting the fates to use that word. His next PET scan is in three weeks.  I'm already getting nervous.  I don't want to miss this moment by worrying.  We've had many wonderful moments with him in the 4 1/2 months since his transplant.  I hope there are many more to come.

I am trying to embrace the lesson that our old life is gone, that the overused phrase "new normal" applies to us now. We are not the same individuals, nor are we the same family, that we were before Alex got cancer. I don't really understand exactly what this "new normal" means for us.

I don't feel invincible. I feel like I can't afford to waste a moment. I feel like the moments need to be savored more, enjoyed more, embraced more, but I don't really know what that means. Life still has bills and work and responsibilities, yet everything feels different.

I don't know what the next five years will bring. For the first time in my life, I don't really want to know.

"Where do you see yourself in five years? in ten years?"

I can't answer that question.

I doubt that my life will "slow down." I can't predict what will happen. I can't live in fear. I have to believe that whatever unfolds in the next five years I will be strong enough, and wise enough, to embrace it.

And I hope I have learned to have the good sense to appreciate and relish all that is good.

Mid-Life Crises and the Meaning of Life

Life's a piece of shit, when you look at it
Life's a laugh and death's a joke, it's true
You'll see its all a show, keep 'em laughin as you go
Just remember that the last laugh is on you

Monty Python - Always Look On The Bright Side Of Life Lyrics 

I've always approached my life with certainty - I knew where I was headed, and why.

I've had to learn, repeatedly - because the lesson comes hard for me, that I can't control everything and that I must make many adjustments.  (Read Turbulence.)

I'm told that the summer before kindergarten, I planned what courses I would take by writing it all out on paper with a crayon.  My older sisters were in high school and planning their course work, so I thought I should do the same.

I would take reading, art, and music.

I would not take math or PE.

Mom told me it wasn't up to me.  There was no choice in kindergarten.

Rats.

As an adult, my plan has included my family and a career I'm passionate about.  It's included community service and a variety of pursuits - theatre, travel, aviation.

I didn't grow up wanting to be a teacher.  During my high school and early college years, I envisioned life as a family attorney or in politics, but I had an epiphany when my "fall back" plan of a degree in elementary education on my way to law school turned out to be what I was meant to do.  When I started the courses that took my into classrooms with kids, I felt I was "home."  I knew that was where I belonged.  I wanted to make a difference.

Even as a young mom, devoted to my family, I didn't want to leave teaching.  Aside from obvious financial reasons, I worked for a purpose.  Leaving my own family was bearable because I was making a difference in the lives of others.  I liked the personal challenge, the creativity, the autonomy. Teaching is hard and rewarding work.

John has likewise been devoted to his work.  He is a born problem solver, and the favorite part of his job is finding solutions to problems.  He doesn't like being away from home, but he loves start ups. He has many stories of hours and days in a mill starting up new machines - times where he would rotate through 24 hours of shift changes and not have left the mill himself.  He has long standing relationships with his business partners and the people he works with.  Although John is a part owner of his business, and has been for almost 25 years (I really don't remember exactly how long), he will never, ever say a colleague works "for" me.  It is always works "with" me and the fact that he is an owner will only come up if it is truly relevant to the conversation.

For the first time in my life, I am struggling to find the meaning and the purpose.

Maybe it's just a stereotypical mid-life crisis.

Maybe I should have been trying to "find myself" decades ago and I'm just behind.

I don't know.

Teaching is hard work, and it's really a hard time to be a teacher right now.  I know that many of you think teachers are whiny, and I'm sorry that you feel that way.  I don't need to be adored, but it's really hard to be vilified.  There's been lots of action on the political front, blaming all sorts of things on teachers.  That's hurtful, but not as hurtful as the friends, acquaintances, and even some family members who have piled on.  I don't mention this to start a political debate about teachers - that's a conversation for another time and place - but to say that, as a teacher, that message is hard to take.  It is painful.

Even through Alex's illness and transplant, I was driven by purpose - taking care of Alex, taking care of my students, taking care of our family.

Today, Alex is day +128 post transplant, in remission, but early on.  I am learning (or trying to learn) how to live with the specter of relapse hanging over our heads.  I am trying to appreciate that today is a good day.

But I find myself with a whole lot of "YOLO" going on.  That's all great in Facebook memes and pop culture that tells you to live for today, but it isn't that simple.  I have an established career that I love, I have responsibilities, and bills to pay and a retirement to save and plan for.  I'm only 53.  I'm not ready to retire, but I find myself wondering, what next, what now?

I've lost the fire, the certainty of purpose that I knew what I was doing.

A year and a half ago, I understood my life.  Then cancer came calling.  And I had a new purpose - save Alex.  Save Alex, and try to keep the rest of my life going at the same time.

And now Alex is doing well.  He's recovering.  He's in remission.

But my old life doesn't feel the same.  I'm not the same.  And I can't tell you yet what that means.

I do know that cancer makes you re-evaluate everything.  I know that's not a news flash to anyone else who has gone through this, and I also know that I'm not the cancer survivor, but I am a survivor of sorts.  Alex's fight was our fight because he couldn't do it alone.

I feel like I don't have time to waste, and I'm afraid to put my life off until later.

In the past year and a half, I've also lost several people who I care about. People who are gone too soon. Lives that were not yet finished.  It makes you wonder and it makes you re-evaluate.

I don't have the answers; just the questions.

Spending time with my kids makes me happy.  Spending time with my husband makes me happy. Flying airplanes, friends, my dog - those things bring me joy and contentment.  I'll keep doing those things as much as I can while I try and figure the rest of things out.

I'll take a cue from "The Meaning of Life" from Spamalot.

Always Look on the Bright Side of Life

Breathe

Today has been a fun day.  I'm beginning to feel, finally, like I can breathe again.  It seems I've held my breath for over a year.

This morning John and I volunteered at the Pancake Breakfast and Young Eagle Rally for our EAA Chapter.  John flew six kids, and I worked the registration table.  It was unseasonably cold and there was snow on the ground (get your act together, Wisconsin), but visibility was spectacular and the air was smooth as glass.

John has been a member for a number of years, but I just joined the chapter three years ago.  It's one of the things we threw ourselves into when Alex moved out of the house.  Bright blue skies in what has been a dreary late winter/early spring enticed many pilots to our pancake breakfast, and our chapter flew 32 Young Eagles this morning.

John with his 99th and 100th Young Eagle.

Our 1967 Piper Cherokee.

I enjoyed the morning immensely, and as I was walking around saying hello to all of my new friends this morning, I had the good sense to savor the moment and the friendships we've made.


After the rally, I flew the short hop from KOSH back to KATW.  It still feels surreal to me to be able to say, "I flew an airplane today."

This past Tuesday we had labs and a clinic visit with Alex's transplant oncologist.  It was our first visit back to Froedtert since February.  It felt good to go back with Alex doing so well.

The lab was very busy, which isn't really unusual.  It made for great people watching.  I remembered our first few visits there, and how overwhelming everything felt.  There was a couple sitting across from us, and I have a feeling that this was their first visit.  The husband was pensive, and kept shifting in his chair as if trying, and failing, to get comfortable.  He was called in for his blood draw before Alex.  We saw them later in the clinic that we go to.  I vividly remember our first visits there.  I remember wishing I could have a crystal ball (I seem to do that a lot) to know how everything would turn out.  As is usually the case, I eventually realize that it's a darn good thing I didn't have that crystal ball because I wouldn't have been ready to deal with the scope of what would be expected of me.  I tried to somehow imagine that we could have a month or two of treatment or some surgical procedure and everything would be "fixed."  Nope.  Not even close.  We're fifteen months in and Alex has 13 more maintenance chemo treatments to go, which will take about ten more months.

But we've come a long, long way.  A year ago, Alex almost died.  And in order to cure him, they had to administer a treatment that almost killed him.

Alex - Feb. 7, 2015
Four days before his cancer diagnosis.

Alex - Feb. 3, 2016.
One year later.  34 days post transplant and the night before getting a PET scan that would reveal remission - at last.    

Alex - April 5, 2016.
Waiting to see his doctor at Froedtert Hospital in Milwaukee.  Day 99 after transplant.

When we got home from the pancake breakfast, both John and I took a lazy afternoon nap before we went to pick Alex up from his house for an overnight visit.  This is a visit with no major plans and no doctor appointments.  Just time to hang out.  We went to Dick's Drive-In (the local drive-in that's only open seasonally; this was Alex's first trip for this spring) and for a long ride.  Alex doesn't really have a lot of hobbies or things he likes to do, so one thing we've always done is gone on car rides.  When he was little, it calmed him when he was struggling.  Today we had beautiful blue skies and at list a hint of spring, even if the mid-30 degree temperatures contradicted the mid-April date.

Tomorrow we're meeting Jess and Rusty for lunch, and then we'll take Alex to the EAA Museum for a bit.  We're working on rebuilding his stamina, both from a physical standpoint and an anxiety standpoint.  He hasn't been out and about much in recent months, and going places can take a lot of effort for him.  It's nice to see him being more comfortable and able to do more.

Today, though, just felt good.

A few weeks ago, in my blogpost called "Turbulence," I wrote about the difficulty John and I were having adjusting to our "new normal" now that we're through the worst of Alex's cancer (that's hard to even write because I hardly dare write it or think it or speak it, for fear I'll jinx him somehow). Since that post, I am finally starting to feel like I can breathe.  Things are feeling a little lighter.  And I'm starting to really believe that even though I'm not where I want to be yet, that's okay and I can see our future on the horizon.

Today I flew an airplane. John and I volunteered for our EAA chapter event.  We saw our daughter and son-in-law.  I took a long nap.  John, Alex, and I had dinner and a ride, and now there are brownies in the oven and we're watching a movie. Today, life is good. Today, I can breathe.

Look at all that hair!  Alex at our house - April 9, 2016.

Alex baking brownies.  He's always loved helping in the kitchen.

Light it Up Blue for Autism

Today is World Autism Day.  It's no longer simply autism awareness, because awareness isn't enough. April is a time to accept, understand, and include individuals on the autism spectrum.

As I watch breakthroughs in research, I hope that they can find treatments that will ease some of the challenges that come with being on the spectrum.

Alex's anxiety and communication difficulties mean he can't live independently and curtail the kind of future that he will have.  That is heartbreaking.  At the same time, I have no desire to erase all traces of his autism.

I could easily write a list of the ways that autism has broken my heart, but I'm not going to.

Today, I want to share the ways that autism has made my life better.

8. My Teaching
Autism has made me a better teacher.  Being the parent of a special needs child has informed my teaching in so many ways.  It helps me in my classroom with my students, and it helps me support parents, especially when they are new to a diagnosis.  I know what it's like to be the parent in an IEP meeting.

7. Problem Solving
Parenting, teaching, living - all of those involve a fair amount of problem solving.  Autism does that to the nth degree.  Why does he have to hide the videos in the laundry room?  Why does he hide certain videos in the children's department at the public library?  (Possible Answer: because he loves them so much and they are overwhelming.  Thank goodness we had an understanding librarian.) We've learned to pay attention and to figure out solutions.

6. How I View the World
Living with someone with sensory processing issues makes me look at the world in a whole different way.  I look for ways in which the world can be overwhelming.  Are the sights, sounds, smells, overwhelming?  Taking Alex out in the world requires us to think like him so that we can be successful.  It's tricky, since he can't tell us what the issues are.  We have to watch him and really pay attention.

5. Patience
I am not a naturally patient person, and my life requires me to have an abundance of it.  Parenting someone on the spectrum requires some patience (and a sense of humour). As Alex continues his battle with cancer, finally in remission, that patience has been even more important.

4. Learning to Forgive Myself as a Parent
I spent many years chasing the best therapy, the best treatment, and watching the media reports that said if I just did the "right" thing, Alex would be "indistinguishable from his peers."  Alex has big-time, classic, autism.  I didn't cause it, and I can't make it "go away."  But I finally feel like what I do for him is enough.  I celebrate his, and our, successes.

3. My Marriage
John is the best possible partner.  I can count on him for anything, and he knows he can count on me. We work together with all the challenges that autism and parenting brings, and we enjoy the great family moments.  John has always reminded me to focus on the positive and not get mired down in the difficult.

2. My Family
We have a bond so strong that it will never be broken.  Other families may have one as strong (just kidding, you think you do, but you don't), but none has one stronger.  Seriously, though, we are united in every way.  Alex has an amazing sister who loves him without question.  We had to learn how to support both children, who are so very, very different.  We didn't, and don't, always get it right.  We love each other, trust each other, and depend on each other.  Going through the things we have together has made us stronger and made us appreciate each other more.

Photo by Jenna Kutcher

1.  Alex.  
Just Alex.  You are enough, just the way you are.  You make my heart sing.

Turbulence

John and I went flying tonight.  I practiced take offs and landings.  Landing is the most difficult, and most dangerous part, of flying, so pilots practice it a lot.  We haven't done as much flying as we would have liked in the last six months because of Alex's cancer, so I'm feeling rusty.  One of the great things about flying with your spouse is that you have someone to give you pointers.  I love flying, but I really, really love flying with John.

Note: since we're both pilots, our "rule" when we fly is that whoever is sitting in the right seat (the non-pilot seat) must address the other one as "captain."  Example: "Did you realize you're a few degrees off your heading, Captain?"

John as PIC (pilot in command).  Somehow we have more pictures with him in the left seat than with me in the left seat.  Hmmm.

On tonight's flight, I asked John to give me feedback on my landings.  The winds were light and the air was smooth. Our flight went well and I did three good landings.

One thing I need to work on is when I'm flying in turbulence.  We encounter some light to moderate turbulence from time to time.  When you're flying through that turbulence, you have to learn to just ride through it, and not try and over-control the airplane to fight it.  I tend to over-control my way through it, which makes the bumps more noticeable instead of less.

After today's flight, John and I were talking about Alex and life in general,  now that we are home and trying to get back to "normal," whatever that means.

John compared life in the last year and a half to that airplane turbulence, and how we have to ride through it without trying to continually fight it.  When we fly, we put on our seatbelts, set our controls for straight and level flight, and set our course.  Once that is established, the idea is not to chase every bump and burble in the wind.  We have to know when to change the controls, and when to just ride through the bumps.  Life is like that, too.  You have to know when to adjust, and when to just ride through the bumps.

Alex is doing amazingly well.  He's in remission.  His maintenance chemo is going well.  He looks great.   His color is good, he's getting hair and whiskers and eyelashes and eyebrows.

Alex - February 2016 - Day +36 after stem cell transplant.  No hair, eyelashes, or eyebrows, but starting to feel better.

Dad and Alex - March, 2016

Alex - March 2016 - Doesn't he look great?

It's like we're back on course to where we were fifteen months ago.  We were adjusting to being empty nesters and figuring out the next phase of our lives.  Alex was gaining independence and adjusting to his new home and life as well.

I'm going to be completely honest here.  I've tried to be honest in all my posts up to this point, and I'm not going to stop now.  Life should be all roses right now, but it doesn't feel that way.  

On paper, our lives look amazing right now.  Alex is doing well and is in remission. Jessica and Rusty are doing great and live 25 miles away. (I still can't believe that's true!)  John and I are back at work full time and have some free time to ourselves.

In reality, it just feels "off."  I'm not unhappy, and I'm well aware of all that I have to be grateful for, but I'm not exactly happy, either.  It's like there's residual turbulence left from the last fifteen months. 

After living with the fear that Alex could die, and after losing several people close to me in the last fifteen months, I find myself questioning what I'm doing with my life. What is my purpose?  What am I waiting for?  I don't want to live with regret, and my priorities have certainly shifted.  There is certainly a fair amount of "YOLO" going through my mind.

When I took Alex to his psych appointment a few weeks ago, his doctor described the process the brain goes through during a trauma.  The brain learns really quickly that it's in danger, but it takes a whole lot longer for it to learn that the danger is over.  On average, he said, it takes about nine months to recover from a trauma like we've been through.

Apparently, this is yet another time when I'm supposed to be patient.  I can't expect to go through all that I've gone through, all that our family has gone through, in the last fifteen months and be unchanged.  And even though we've resumed the life we were living before Alex's cancer, it really isn't the same.  We're not the same.

I have to trust that we can make it through this phase, too.  I have to give myself permission to feel what I'm feeling, and work through it. I have to remember that this, too, will take time.  

Cancer has left its scars, and not just on Alex.  John and I have them, too. Although the scars may never disappear, I am confident that they will heal in time. We'll be able to ride through the turbulence.

Decisions, Decisions

I remember vividly the day we brought Jessica home from the hospital.  She was born in October, and they day we took her home was grey, cold, and windy.  They warned us to keep her covered or the wind would take her breath away.

I remember thinking that those doctors and nurses were clearly out of their minds if they thought sending this fragile human home with us was a good idea.

What on earth had we gotten ourselves into?

That was when the enormity of parenting, and the responsibility we had for another human being really hit us.

We have always taken that responsibility seriously.

Now we're parents of adult children.  One of them with a life-long developmental disability and now, a life threatening illness.

I am about to tell you what the most daunting thing is about having an adult child with special needs, and it's probably not what you might think.

Yes, parenting Alex is very intense.  He requires constant supervision at the level of a toddler.  But that isn't the most daunting thing.

You see, parenting is all about the "gradual release of responsibility" (as we teachers like to say). You are preparing your child to be able to make decisions and care for themselves on their own.  You may not always like or agree with their choices, and there may be sleepless nights when you worry about their choices, but your job as a parent is to figure out how to let go.

When your adult child has a developmental disability, that decision making responsibility never shifts.  You make decisions for them.

For.ever.

Think about it.  Imagine being 25 years old, and never having the ability to make decisions for yourself.  You don't get to decide where or how you live, where you work, or what medical treatment to undergo.  You don't choose when or where to take a family vacation.

We think about that all the time.  We decide it all.  We take that very seriously.  We always try to think about what Alex would want.  We think about what's best for him, but we do try very hard to watch, listen, and pay attention to who he is and to give him a voice as best as we can.

We haven't taken Alex on a big family vacation in a few years.  For almost a year and a half now, he's been too sick.  But before that, our last couple of trips, were a bit challenging.  Places Alex used to love didn't seem to be as comfortable or enjoyable for him.  I feel comfortable saying that John, Jessica, and I can read Alex really well.  That doesn't mean we know for sure what he's thinking.

He can't say, "I'm glad I'm on this trip, but being away from home and around strangers is hard for me."

Or, "I really don't want to be here.  Why did you make me come?"

We think we know, and we make our best guess, but that's all we can do is guess.

Moving Alex into a group home was a huge step for all of us.  We felt that he deserved to be as independent as he could be.  But in reality, he didn't get a vote.  He didn't say he was ready, or that he wanted to but wasn't ready, or that he wished he could stay with us.

We watch and analyze a million things, every day.  We watch his moods, his body language, his facial expressions.  He has transitioned well to his group home, and I feel confident that he is comfortable there.  I believe I'd know if he were scared or unhappy.

He takes several medications, mostly mood stabilizers and anti-anxiety meds at this point.  We have to be the ones to evaluate how they're working, and watch for signs of side effects.  Over the years, he's taken meds that didn't work or clearly made him uncomfortable.  Again, we have to watch everything and pay attention to every detail.  How much is enough without being too much?

And then he gets cancer.  There are so many decisions about treatment.  He trusts us and counts on us.  We are his voice; his advocates.  We have to think about what he would want.

Throughout his treatment, we had to try and communicate to Alex's medical team about who he is and what he needed to be able to participate in his treatment.  We had to figure out accommodations. And we had to ask a lot of questions.  We couldn't really know what to tell the team until we understood what they were asking of him.

He far exceeded anything we ever could have dreamed he'd be able to do.  But I believe he could do what he needed to because he had us at his side.

The hospital was reluctant to commit to 24 hour 1:1 support.  They told us we didn't need to be there around the clock, but we knew that if they wouldn't provide that constant support, we had to be there. Honestly, we would have been there anyway.

The thing is that most of the time Alex is super easy.  But you get lulled into a false sense of security and then - bam! - he does something unexpected.  At Froedtert, they kept telling us that we should go and get out of the hospital.  We never went too far, but one of the few times we both left the room, one time that we went down to dinner together, is when he pulled his PICC line.  The nurse was watching from the nurses station, directly across from Alex's room, with the door open.  She watched him grab the line and yank it out.  There was no way she could get there in time.  When we left the room the rest of his stay, someone stayed in the room with him.

Getting his regular meds on time was an ordeal for his hospital stays in Appleton.  Even in Milwaukee, I would sometimes have to ask for meds.  He can't advocate for himself.  And the stakes were too high.

With us there, he felt safe.  And being with him made us feel slightly less helpless.

Letting go enough to let him live somewhere else is so hard.  Getting back to that after he's been so sick is really hard.

It's much more daunting to make decisions for another adult than it is for yourself.

Interestingly, Alex didn't ask to go home when we were at the hotel for the stem cell collection for a week, and he didn't ask to go home when he was in the hospital (except for the day he pulled the PICC - he said, "ride car" several times and then took matters into his own hands).  Our last couple of vacations, he asked to go home daily and packed his suitcase every morning.

If he's willing to stay at the hotel when we went to the hospital every day, or willing to stay in the hospital for 19 days, maybe he's ready for a family vacation.  Disney has always been our family favorite.  Once he gets a little stronger, we'll plan our celebration trip.

We'll keep watching, listening, and letting Alex guide us.  We've been trying some new things with his communication app on his iPad.  We keep hoping that someday we'll get a breakthrough and he'll find his voice - find a way to tell us what he really thinks.  That would be the most amazing thing. Even if it meant he told me all the times I made decisions and I guessed wrong.

But until that day, we'll keep doing our best.  We'll keep being his voice and trying to help Alex live his life the way we think he wants to live it.