Haircuts

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.