compassion for autism

I teach music classes for young children.  Over the last year, I have had two boys in my classes that I knew for certain were autistic, and one other boy whom I suspected was on the autism spectrum.  Until this past year, my experience with autism has been only second-hand.  Seeing autism for myself, and experiencing it in my classes, has been extremely eye-opening for me.

In my parent/child music class, one mother of a three year old-ish autistic boy told me that she had a younger daughter at home.  “Bring her along to class!” I blithely said.  But the mother refused.  She said it would be too much work to be with her autistic son in class and watch the younger child as well.  I didn’t believe her at first; I thought she was over-protective and perfectionistic.  But it didn’t take long before I saw exactly what she meant, saw that she was exactly correct.  She never knew what stunt her boy was going to pull next, and she needed to be constantly ready to RACE after him wherever he ran, especially since he had a tendency to bolt out of the door, bolt out of the building, and run into the street.  He had moments when he really liked class, and he had moments when he hated being there, but never could I tell what mood it was that made him all of a sudden run out of the door.  I don’t even think it was a response to anything that was happening in class.  It was just that he felt it a necessity to run; so he did.  I never did meet her younger daughter, and after enrolling her son in my class for two ten-week sessions, she did not enroll again.

I know that autism is now occurring in children at a rate of 1 in 150 children, with 4 out of 5 of those autistic children being boys.  As of yet, no one knows definitively what causes autism, and there is no cure.  There are suspicions as to what causes autism, and there are various treatments that help with some that do claim to have cured some children, but there is nothing definite, nothing that works for every child.

When Lyd was small, I barely knew what autism was.  If someone had asked me for a definition, my answer would have been vague, at best.  I really didn’t know anything about it.  But shortly before and during the time I was pregnant with Curious J, I was an active member over on the Ovusoft Fertility and Parenting Boards, and I was intrigued by the increasing number of posts regarding autism.  As I read more and more about mother’s expriences with autism, and heard more about what the possible causes might be, I became increasingly worried.  I was quite relieved to discover halfway through my pregnancy that I was carrying a girl.  I made the decision to stop giving Lyd vaccinations, and I decided that my new baby would not be vaccinated with the intensity or frequency that Lyd was.

Most significantly, thanks to the internet I became re-acquainted with an old high school classmate, who blogs at To Sleep, or Not to Sleep.  She is the mother of an autistic boy who is about the age of Lyd.  I have read her experiences, and in hearing about her day to day life caring for her children, it has given me a new perspective on autism.  I have a better understanding of autism than I did before, as well as new reverence for the parents, especially the mothers, who care for autistic children.

But there’s nothing like actually seeing autism in action for yourself.  That’s what I’m currently dealing with in one of my music classes, a class where it’s not a parent/child class, but a class just for older children ages 4 and up.

We’ll call him Eddie.  Eddie is six years old next month.  His four-year old sister is also in the class; we’ll call her Susie.  The first day of class, I noticed that Eddie was unusually active.  From the start I had to separate him and Susie.  If I let them sit next to each other, he was all over her.  I was barely two songs into a ten-song class when I went back out into the lobby and asked Eddie’s mother to come back into the room.  I’ve been teaching this class for over four years now, but I could not handle Eddie on my own.  As class resumed and Eddie’s behavior continued to be only borderline under control, I was at first very angry inside.  “What is wrong with this child?” I thought.  “And what is wrong with his mother that she barely reacts to his obnoxious behavior?”

As the class progressed, I calmed down internally, and I realized that there must be Something going on.  So after class, I asked Eddie’s mother, “What do I need to know about Eddie to best help him in this class?”

His mother responded, “He has high-functioning autism.”

[blink]  Oh.

I initially was angry with the mother for not telling me this before the first class, angry with her for putting her child into the room and leaving.  Initially.  But then I thought about it more, thought about how I would feel if I was in her shoes, how much I would be hoping that maybe, just maybe, my child would do well in this class, would act like the other children, and the teacher wouldn’t know that anything was wrong.  Because who wants to be defined by their disease, and what parent wants to define their child in that way?  I realized that if I were that mother, it would be difficult for me to admit my child had autism, too.

And so, class has gone on.  This Saturday will be week 7 of a 10 week session.  I asked Eddie’s mother to always be in the room with me, even though this class typically does not involve the parents.  Eddie is in a class with children who are all at least a year younger than him; some are almost two years younger.  Sometimes he can do what he is asked to do; sometimes he cannot.  Eddie is fascinated when I use the CD player, and he must watch it obsessively when I stop it.  Those are the times when his mother must help me, because it’s very hard to divert his attention back to the circle of children making music on the carpet.  He gets very wild very quickly.  Anytime we do large movement activities, I must be close to Eddie lest his body get out of control completely.  I have to always have one eye on him, and I still cannot let him sit next to his sister.

This class is the most difficult class I have ever taught.

My boss and I talked on the phone the other night, and I shared with her the fact that Eddie is autistic.  She had no idea; our registration forms do not have a space on them saying “Check this box if your child has autism.”  We talked a bit about how difficult it is, and she asked me if she should allow Eddie to re-enroll for next session.

My response was, “I don’t know.”

It is incredibly difficult to have him in the class.  It is incredibly difficult to be always watching one child, and I feel that I am neglecting the other children in the class by having to focus so much on Eddie.  It’s hard to hold a six-year old boy on my lap and try to teach at the same time.  I don’t have to hold him all the time, but it happens at least once or twice every class.  And, I have no training in working with autistic children, other than what I’ve acquired on my own through reading.  Honestly, I do not look forward to that class at 10:15 on Saturday morning.

But I can tell that Eddie loves music class.  He is happy to be there.  He can sing decently, when the wiring lines up correctly in his brain and it does it appropriately.  And, interestingly, there are times when I think that all the attention focused on Eddie actually helps some of the other children, especially those who are painfully shy.  I cannot focus on those children very much, and so their shyness is not as apparent and it becomes less of an issue.  At times, the shy ones seem to forget themselves watching Eddie, and they participate at a level they might not otherwise.

I don’t know whether to have Eddie back in class or not.  There are good reasons for both sides.  I need to talk to his mother and see what she says.  I honestly don’t know what I will do.

But I do know this: Having Eddie in my class, and having the other race-out-the-door autistic boy the last two sessions, has given me a compassion for autism that I did not have before, a compassion for the children and an equal compassion for the mothers.  In being able to briefly see how difficult it must be to parent autistic children, I am truly in awe of the patience and perseverance required.  And when I read my friend’s blog, especially posts like this, I feel that anything I complain about as a parent, any amount of night wakings, lack of naps, food battles, or temper tantrums are not even worth mentioning in comparison.

And when I see the love that parents of children with autism still have for their children, love so beautifully exemplified in this post, I am … in awe.  God has truly blessed these children with loving, caring parents.  And I am grateful for the mothering lesson that I am being taught watching these “other mothers.”  I hope I can pass that same compassion for people with autism and other special needs on to my own children.