Yes, And A Friar Too!
By Mary Ellen Barrett
(published in Fall 2006 Heart and Mind Magazine)

When you think of heroes you often imagine those that keep up safe and protect us. At least I do. I think of firemen and police officers and all of the brave soldiers who live and die for our freedom. However as the parent of a disabled child I get to witness on a daily basis and different kind of courage. It is a little lower key and less showy than burning buildings and gun fights but in its own way these little acts of heroism require more fortitude. The courage to put aside your fear, when fear is all you know, and think of others first.

My son, my hero, Ryan is ten years old. He was first diagnosed with Pervasive Developmental Disorder on December 16, 1998. He was three years old and blissfully unaware that his parents were being told his life would never be normal.  PDD is an autism spectrum disorder characterized by an inability to communicate effectively and strange and innappropriate social behaviors. Ryan is very aware of the world around him in that all sensory experiences are intensified for him.  He hears at a higher decibel level than other people so that sound can range from distracting to painful and he sees things differently than we do. His perception seems just a little off kilter.

From the begininng it was just necessary to surrender this parenting a “special child” to God. My husband and I felt unequipped to deal with the new role that had been thrust upon us so we decided not to make this journey alone. God had to be our constant companion. He made this leap of faith in trusting us with this extraordinary child and we had to believe that the Almighty had a plan and that we needed His help to accomplish it. Our faith in God has been more that rewarded and Ryan is growing to be a gifted and extraordinary person.

Ryan looks just like other boys his age, which is another tragedy of autism.  Usually a child with a nuerological problem, such as Down’s Syndrome, is seen instantly as different and therefore viewed with a great deal more compassion. Autistic children look like everyone else and are therefore viewed as poorly behaved or weird. There is very little sympathy out there for those children who don’t fit into the “norm”. Ryan is aware enough to realize he is different but unable to make the adjustments to fit in. He just can not be what he isn’t.

This is one of the many reasons why after a few years in the school system we have decided to homeschool our children.  The school did an “ok” job with Ryan in terms of teaching him to read and calculate but they were much more concerned with pushing him into social situations and mainstreaming than I was.  He is not a regular kid and never will be, it seemed cruel to subject him to the taunts of classmates who were unfamiliar with his disabilities and impatient with his differences.

In an environment where he is loved no matter how oddly he behaves Ryan has become a great deal easier to live with. And finds more outlets for his abnormalities. He is never taunted or teased (other than by his sisters  and well, they are just icky girls so what do they know?) and he is encouraged to learn in the visual and hands on way that is best for him. In having our family home together all the time his sisters and brothers have learned a great deal about the virtues they will need to get to heaven. In sharing a school day with their brother patience, fortitude, love, compassion, humility are part of our daily school routine. It is often difficult but always worth the effort.

Recently I found myself in room 315 of Schneider Children’s Hospital in New York. Ryan had about 40 EEG  wire leads glued to his head and a gauze wrapped cap holding it all down. The leads are connected to a box which has been placed in a Shark Tales back pack. He wears the back pack, which is connected by a long cord to a plug in the wall, to the bathroom but that is as far as he can go. The leads record his brain activity which is then shown on a screen over his bed. The doctor is trying to get a better handle on what kind of seizures Ryan is having. The seizures began about eighteen months ago and were diagnosed as mild epilepsy. They are now less frequent than they were in the past but the memory loss and other effects last longer now. This prolonged EEG will,  hopefully, give the doctors some clue as to what is triggering these siezures, their frequency and duration. We have discovered that as Ryan gets older his autism seems to make him suseptible to a host of other nuerological disrders that will either increase or decrease with the onset of puberty. No one can predict how or why this will happen.

So school at home is suspended, other than the assigment to “pray for your brother” and a dear homeschool mom friend pitched in to help. Dad took a few days off from work to help out and here we are in this place where my problems seem pretty petty.

My poor guy was in the admitting office for three hours, then on to the lab where they hooked him up. After about forty-five minutes of that we were taken to the room where he and I would spend the night. He immediately asked for his guitar. I told him to play softly as the little girl in the bed next to him was sleeping. He was softly playing Margaritaville and signing along when three staff neurologists stopped by. They heard him while walking by and wanted to just listen to him play. Eventually they had to go off and do some work (at least I am assuming that’s what they did – they may have gone off to buy Jimmy Buffet CDs) and then he attracted a few nurses. All in all about ten people stopped by to listen and sing-a-long.

A hospital social worker was tipped off about the ongoing concert in room 315 and sent the staff music therapist to distract Ryan from his discomfort.

Now we had a party.

The therapist, a very kind man, had an acoustic-electric guitar which he let Ryan play. He was amazed at Ryan’s ability to hear a song just once and replicate it perfectly and he was blown away by the fact that he could read music and was writing his own songs. They played musical games and tried to out-play each other. Ryan showed off his repitoire of Christian rock songs and his favorite Jimmy Buffet tunes. The therapist showed him a few Beatles songs and a few interesting song-wrtiting excercises.  

There was now a crowd of professional staff in the room. I have no idea who was actually taking care of patients on the floor for that hour because everyone who worked there seemed to be in Ryan’s room cheering for him. 

It was almost worth being in the hospital to see the pride on my little guy’s face as people clapped and praised him.  He was beaming when the musician he was playing with told him he was gifted and one day would be a “great man in music”. I’m pretty sure he didn’t understand what the words meant but he knows when he is being praised and it does not happen often with strangers.

Throughout the music session the EEG monitor showed a remarkable evenness in his brain activity. It was calm and steady and seemed to reflect the joy he was experiencing. It was the only time during the ordeal of being there two days that it looked like that.

This child, my extraordinary child, is hot, itchy and uncomfortable. He wants nothing more than to go home. He is afraid to move because he thinks the leads will pull on his head and hurt him. He is disturbed by all of the noise in the hallway outside of his room and he hates wearing the gown they put him in. Yet he still finds it within himself to play his music and let others enjoy his talent. He patiently answers questions about his guitar, his lessons and his preferences in music. He shares, to the best of his ability, his reasons for his music choices and when asked if he wants to be a guitar player when he grows up he says “yes, but a Friar too.”

When everyone had left and he put down the guitar he reached over and rubbed my shoulder, “don’t worry it’ll be ok,” he said.

He may never learn square roots or what happened at Pearl Harbor. Philosophy and geometry may always remain a mystery to him. Yet somehow this extraordinary child knows when his mother needs reassurance. He knows that he is loved beyond words and he knows that sharing his gifts and his love is his primary purpose. He remembers every day to thank God for his talent and to use that talent to praise God.

He knows so much and I have so much to learn.

• Link Resources and References for Parents of Special Needs Children

Mary Ellen Barrett is a home educating mother of seven children.  She writes a column for The Long Island Catholic called Life in Our Domestic Church and speaks at conferences about homeschooling and raising a special needs child. Mary Ellen writes about the daily life and happenings in her Catholic home on her weblog, Tales from the Bonny Blue House (http://maryellenb.typepad.com) and about a Catholic celebration of Christmas at O Night Divine (www.onightdivine.com). She is currently at work on a book about life as a mom of a large family and an Advent Book of Days.