Saturday, May 30, 2015

Crystal Ball

When Alex's autism was first diagnosed, I was only 29 years old and still a relatively new mom.  Jessica was born when I was 25, and Alex followed 19 1/2 months later.  I remember wishing desperately for some sort of crystal ball to let me see into the future and let me know that everything would be okay.  I have never been good with uncertainty, and the unknown path that lay before me was terrifying.

I'm still no good with uncertainty (waiting for Alex's cancer diagnosis was more agonizing than dealing with the news), but I have learned over time that life just has to unfold.  I suppose that's not an earth shattering statement, but I know now that in order to fully appreciate your life you just have to live it, every day.

Autism was still relatively obscure back in 1992, when Alex was diagnosed.  As a teacher, it was not completely unknown to me, but my information was limited and outdated.  I still have the college textbook that contained roughly one paragraph about autism, and the gist of it was that students with autism were so significantly disabled that they would never be in my regular education classroom.  Mind you, this was in the college textbook for my class about "mainstreaming" special education students.  The year was 1984, and PL 94-142 (now IDEA) was still fairly new.  I had one three credit course to prepare me for working with differently abled learners in my classroom.  In addition to that paragraph, we watched a film (yup, a film on a film reel and a film projector - I had to learn how to thread and run those things as a requirement for graduation and getting my teaching license) and my professor told us that children with autism were unable to love their mothers.  I remember thinking, praying, I suppose, "If I ever have a child with a disability, please let it be anything but autism.  I wouldn't be able to survive having a child that couldn't love me."

Nicely played, Karma.

Add to that, the irony of John and I having a child who is nonverbal.  Picture the best/worst Hallmark Channel movie about the beloved high school or college football coach who has a child who is physically disabled.  (They love sports metaphor movies, don't they?)  John and I met in high school debate (he, first affirmative; me, second negative - his job was to present the plan, mine was to tear it down), and almost all of our professional and leisure interests involved language and intellectual pursuits - acting, singing, theatre, reading, language, public speaking, teaching.  We've had to learn to think and communicate beyond words.

The road to Alex's diagnosis was actually a series of evaluations and diagnoses over a period of almost 10 months from the time we started asking the questions to be told what we were dealing with.  First, he was diagnosed with severe language delays and what they called "scatter skills," a very intriguing array of strengths and weaknesses.  Then came the diagnosis of a sensory processing disorder and sensory integration therapy (very new at that time).  Finally, the diagnosis of PDD.NOS.  An actual "autism" diagnosis didn't come until several years later.  Doctors were wary of the "autism" label and thought it kinder to give that PDD.NOS label.  They didn't yet embrace the idea of autism being a true spectrum disorder.  At any rate, they wanted to give us the hope that Alex would be "high functioning."  Turns out his autism is much more on the classic side of things.  Although, to be fair, Alex is quite an enigma.

At the speech and language meeting, where they gave us the results of the testing, I actually asked if he would still be able to go to college.  I cringe at that thought now.  Maybe I cringe and sympathize.  I want to hug that young, naive mother, because she had so much to learn.  That was the day I first started wishing for the "crystal ball."  I wanted to know that someday he would talk, and he would get married, and he would go to college.

A few months later came the PDD.NOS diagnosis.  That came from a different group of professionals.  We had started at a private speech and language clinic.  They referred us to a private occupational therapist who gave us the sensory processing diagnosis, and at the same time referred us to the county Early Intervention Program.  A team came to our home for that evaluation.  The team included a developmental pediatrician.  They said PDD.NOS and gave me a book.  I opened the book and found the chapter that explained how to set up a special needs trust because our child would never be independent.  I closed the book, and didn't read much of anything - at least not anything with long range predictions, for a year.

Instead, I made it up.  There were no line therapists in 1992.  The doctors didn't know much, at least around here, and the teachers were still learning.  Alex was at the forefront all throughout his school years.  We learned alongside the teachers in our district.

I started taking graduate classes.  Back then, the school district even payed the tuition for the summer coursework I took.  I taught full time during the school year, and took autism classes and devised my own programming for Alex and we took care of Jessica.  Every summer I took a grade class in autism.  I think when he was about six the class I wanted was far enough away that I had to stay overnight.  I attended with several of Alex's teachers.  When we introduced ourselves and said a little about ourselves, I remember I said that one of my goals for the week was to go to a restaurant where I could eat with a fork.  That never happened in those days.

My instinct, our instinct, was to make Alex feel loved and safe.  We always focused on his emotional growth and well being more that rote skills.  He still can't tie his own shoes, but he can accept comfort during chemotherapy, so I'd say we made the right call.

I took the lead on the therapy because education was my background, but that doesn't mean I ever did this alone.  John and I were in lockstep every step of the way.  John has never, ever shied away from getting messy in his parenting.  And it took both of us to meet Alex's and Jessica's very diverse needs and to support each other.  Luckily, we never both fell apart at the same time.  John's sister, Allison, was our daycare provider and she helped raise our kids.  She didn't shy away once the diagnosis came.  She stepped right up.  In fact, both she and John insisted I keep working because they knew the alternative was me obsessing in a way that would be unhealthy for Alex and me.  They were right.

If I had had that crystal ball in 1992, I would have been devastated.  I would have focused on all that we lost.  I didn't know then that you could have a child grow up to still be nonverbal and require 24/7 care would could, in fact, be an amazing adult.

I didn't know then how much I could love someone.

I didn't know then how the grieving ebbs and flows forever, and that it can come crashing in on you when you least expect it.

I also didn't know that grieving for lost potential didn't mean that you lived your life in sorrow.

I couldn't have imagined that I could know my son so well.  That John and I could have the strength to meet challenges that we could never have predicted.

There was a time when I thought that the autism diagnosis was the worst thing that could happen to is.  I was wrong.  It's just a piece of Alex and a piece of us as a family.

There was a time when I thought getting Alex through wisdom teeth surgery was a huge challenge.  What a walk in the park that was.  On February 11 when they told us he had cancer, we didn't know how he would be able to participate in his care and treatment.  He has amazed us all.

Every where I go, I meet people who have been positively impacted by Alex's life.  He touches the lives of everyone he meets.  He can't speak, he won't get married, be a father, or even live completely on his own.  But he is an amazing and successful adult.

I'm ashamed to say I would have been disappointed had I known this was "all" his life was meant to be.  I had to live this life to fully appreciate how very, very lucky I am and have been, and to fully appreciate the amazing son I have.

I know that there are people who feel sorry for me, and for our family.  I wish Alex's life were easier, especially now, as he battles cancer.  Cancer sucks much more than autism does.  I hate the part of autism that makes Alex's life harder for him.  But I wouldn't change who he is for anything.

So don't feel sorry for me.  I have lived the life I was meant to live.  I have an amazing family and we have an unbreakable bond.  I've felt sorrow and heartache, and right now we are going through a particularly hard time, but I have experienced more joy and love and wonder in my life than I ever thought possible.  I don't have a crystal ball, and that's okay.  I'm learning to live it and appreciate it, just as it comes.

Wednesday, May 13, 2015


Alex was very focused and thoughtful during his haircut.  John, Frank, and I were all talking about how much to cut off, how it would look, and how it might feel.  We knew that the "chemo haircut" was most likely going to happen, the timing was really the question.  It was also another one of those situations where Alex most certainly had an opinion, but was unable to express it.  So John and I have to do our best to execute Alex's wishes, without actually knowing for sure what they are.

I'd asked the nurse (actually, all the nurses and all the doctors) about whether or not Alex would lose his hair.  It wasn't because I was particularly worried from a vanity standpoint.  My concern was for how Alex would process the situation, and what he would be experiencing.  I was told that most chemo patients report discomfort in their scalps as the hair starts to fall out.  Alex's senses are all hyper-acute, so I can only imagine what that might mean for him.  We also wondered how he would feel with no hair - would that be better for him?  Would he find it upsetting?  We hoped that the moment would present itself and we would just know the time was right.

That moment presented itself last week.  Alex's hair kept thinning, and we thought that the process of the hair falling out might be uncomfortable, so we scheduled an appointment with Frank.  Frank has been cutting Alex's hair for over twelve years; half his life.

Alex was sitting patiently and attentively as he watched almost all of his hair disappear.  We decided on a very short buzz cut; not completely bald, but just short fuzz.

In the midst of the haircut, Frank said, "I forgot how hard this is for him."

With that statement, memories came flooding back.  John and I both agreed, and we all paused with the realization that we were taking for granted that Alex could sit and watch almost all of his hair disappear.  To say this is a huge accomplishment for Alex is a tremendous understatement.

Haircuts used to be a major ordeal.  We tried going to a barber until Alex was maybe four or five.  He would become so upset, with so much wriggling and crying, that is was traumatic for all of us.  (At one appointment, another customer said, "Squirt him with the water bottle.  He'll stop crying.")  We gave up, and John started giving Alex buzz cuts at home.

We bought a clippers, and had a spot in the basement for the haircuts.  We'd put it off as long as we could, but the  irony was that Alex did like his hair to get long, but he really didn't like the process of a haircut.  Alex's hair grows fast, so he really needs a haircut every four weeks.

He has so many sensory issues, we could only guess what it was about the haircut that was so difficult.  (And we were so much younger then, and much newer on our autism journey.  And we knew no one else with a similar experience to draw from.) 

We wondered then, and still wonder, if the process of cutting hair was painful for him.  He hated the clippers, but he hated scissors worse.  A five minute buzz cut took at least an hour.  Alex would break out in a full heat rash (a full blow panic attack, I know now).

One strategy we learned was to write a social story.  A social story is basically a script with photos to help an individual with autism prepare for a situation.  I took pictures of Alex at each step in the process, and then wrote a story to go with it.  We practiced the script before, during, and after.  The purpose was to make it clear to Alex what would happen and what he could expect.  The script would also hopefully bridge the gap that the verbal communication might not be able to overcome.  Verbal language was difficult for him (still is) and add a very stressful situation and it was difficult to know how much he could understand.

The story helped, but it was still difficult for Alex to understand how long the haircut would take.  I decided to create a puzzle.  On the puzzle was a picture of Alex.  I cut it into six pieces, and at intervals throughout the haircut Alex got to remove a piece of the puzzle.  It was timed so that when the haircut was finished, removing the last piece would reveal the final line from the social story:  "Alex's haircut is all done. Hurray!"

We used that social story and puzzle for seven years.  Seven years of haircuts in the basement, with Alex crying and having a panic attack, me holding him, and John dancing around him trying to get a halfway decent haircut.

By the time Alex was about twelve, the haircuts were finally getting easier.  I really wanted him to have a haircut that looked more like the other boys.  (Buzz cuts were not the style when Alex was small.)  So we tried taking him back to the barber.  Frank was a great sport.  In the beginning, it took at least 45 minutes at the hair salon.  Frank had to dance around Alex and try to clip a moving target.  Frank used the clippers, too, but also tried to do some with the scissors.  Frank's technique was better than ours, but getting a haircut was no easy task.  Luckily, we were usually the last appointment of the day, because Frank was sweating profusely by the end of the haircut.  He got quite a workout.  Alex didn't cry, but he was anxious an unable to sit still.  We had John get his haircut at the same time, so Alex could watch his dad and then get his own haircut.  That process seemed to help.

Gradually, over the course of the last twelve years, haircuts have gotten easier.  Alex prefers to keep his hair short, and so the positive of keeping it short outweighs the stress and discomfort of the hair-cutting process.  The routine, people, and place are all familiar.  Alex does so well, that usually his caregivers from his house bring him for his haircuts now.

But this time we wanted to bring him in ourselves.  We weren't sure how short the haircut would have to go, and we wanted to make the decision.  We wanted to be the ones to make the decision we thought Alex would make for himself if he could.

I think he agreed.  His brow was furrowed, but he wasn't anxious.  After it was all over, we went for dinner.  He was relaxed and all smiles.  I think we were successful.

It was good to remember how far Alex has come.  It reminded us to appreciate that the little boy who was unable to tolerate a simple haircut, could now get his head practically shaved because of cancer.  That same boy endures surgery, PET scans,  doctors' appointments, and chemo.  I remember when I used to wish that he could just get a "real" haircut from a barber.  You've come such a long, long way, Alex John.  I'm proud of you.