Willie enriches my life! Some days though, I dread his needs, his demands, his stubbornness, his appetite, his compulsions, his make-pretend world, his limitations. But last night I was plain grateful that he offered me a very special gift. His school was hosting a presentation by Larry Bisonette,  an Artist with Autism as part of their Autism Symposium: Sensitive Systems. I would never have known about this unless Willie had Special Needs and happened to be lucky enough to go to The Camphill Special School.  It was one of those nights I won't ever forget.

The presentation was held in Rainbow Hall at The Camphill Special School. The name alone suggested the magic we were about to experience. Larry sat in the front of the room, with another man, behind a rectangular black table. A small computer in front of Larry, a larger MAC in front of the other man. The room filled up with lots of people, some with disabilities. Larry watched us, stimming with his right pointer finger, making high-pitched guttural sounds.

Then Larry was introduced as well as Pascal, Larry's communication support person. The room was silent. Larry began to slowly and laboriously type on his computer with his right index finger. Pascal pinched the upper sleeve of his shirt, exerting pressure on Larry. Larry's letters showed up on the large screen behind him. The letters formed words and the words sentences. NO punctuation. Four lines of words, funny and poetic. Larry welcomed us to his presentation. The room was silent. All eyes transfixed on Larry and the screen.  Then Larry's computer read the words to us. We laughed. Our hearts melted at his eloquence, his meaning, his inner world so at odds with his outer appearance.

The evening continued with a 20 minute movie about Larry, his life, and his art. There was a slide show where Larry and Pascal would take turns reading. Then Q & A. Throughout it all, the audience was mesmerized, all eyes on Larry, as he shared his story. And for those 90 minutes, Larry continued to stim,  pick his ear and eat what he found, smile a large, lopsided smile, rub his head, repeat certain words over and over again, and make all sorts of noises.

It was an amazing night as most of us had never seen such an outwardly severe man with Autism use Facilitated communication so poignantly. Larry talked about what it feels like to have Autism, what inspired his artwork, what it is most important for Special Needs kids to learn, and what his favorite color to paint with is. Throughout the evening, Larry would throw in subtle but very amusing jokes and continue to speak to us in his poetic prose about all these very important matters.

I cannot rightfully do justice to capturing Larry and his messages. So please check him out at www.larrybisonette.com.

Larry opened my already open eyes to HIS voice and the voices others with disabilities have. My very verbal but disabled son gave me a gift last night. I will spread Larry's messages and then some.  Thank you Larry. Thank you Willie.

FREAK: Raising A Son With Special Needs

The hit television series Parenthood is a staple for parents with children with Special Needs. Max, one of the stars of the show, has Aspergers and does a fine good job of persuading us that he truly is on the Spectrum. Max's struggles and his parents mimic our lives as they portray their real-to-life sorrows, struggles, and victories.

Last week, Max fell apart on a Middle School overnight class trip. We watched as his Mother debated whether or not to chaperone the trip. Max requested she not attend.  Christina and Adam, Max's parents, in the end decided to take a leap of faith and allow Max to go alone. It was a perfect storm.

In the end, Max had to be picked up from the trip early. He inexplicably snapped and had a tantrum that his empathetic teacher could not rescue him from. On the way home, in the car, Max, in uncharacteristic eloquence, spoke about what happened. He told his parents he was a FREAK, as the other kids call him that, treat him like one, and have convinced him that he is one. Christina of course, as all mothers, would not accept this message. In the final scene, as the television viewer, Special Needs parent or not, is wiping their unending tears away, Max told his Mom that he knows he is a FREAK, no matter what she tells him.

And then the hour long episode was over. It left me feeling vulnerable, sad, beaten, hopeless. But luckily Parenthood is just a TV show. In real life Max does not have Aspergers. In real life, I just turned off the TV and moved on.

But then I was driving in the car with Willie the next day. Out of the blue, he said, "I am a FREAK." For a minute I caught my breathe as it didn't seem possible that he was echoing the exact words Max had used in Parenthood the day before. But I, as Christina had before me, told Willie that of course he wasn't  a FREAK. And his next sentence floored me as it was a direct quote from Max. "No, I know I am a FREAK." And I was speechless.

For at that moment, I could not reach Willie. His sense of self included that FREAK word, no matter what I said or did. For he is his own person. He thinks about himself based on his life experiences. And he is smart enough to know how different he is. Like Max, he notices when others laugh at him, stare at him, snicker behind his back. Those experiences shape him. No matter what I say, I cannot deny Willie his feelings, his interactions in the world, his interpretations of himself. Sure I have helped to create a world where Willie can be and is his best self. Sure, I have helped him to feel successful both academically, vocationally, and socially. But in the end, Willie is Willie and I am I. We are separate. And just as Christina could not protect Max, neither can I.

The Explorer's Club: Raising A Son With Special Needs

Willie was invited to a dinner at The Explorer's Club in New York City with several members of his community from The Camphill Special School.  Guy, The Director Of Development, called me yesterday to ask if I would allow him to go. I, of course, said yes!

I cannot stop thinking about this exotic adventure Willie will take tomorrow. But really I can't stop thinking about how the world of Special Needs fits together with a club recognizing and honoring fantastic explorers. I mean I understand that The Explorer's Club trip is a Fund-Raising Mission.  But how do "Disabled Children" intersect with gifted adventurers of our world.

First read about The Explorer's Club:

"Founded in New York City in 1904, The Explorers Club promotes the scientific exploration of land, sea, air, and space by supporting research and education in the physical, natural and biological sciences. The Club’s members have been responsible for an illustrious series of famous firsts: First to the North Pole, first to the South Pole, first to the summit of Mount Everest, first to the deepest point in the ocean, first to the surface of the moon—all accomplished by our members."

And then read the Mission Statement of The Camphill Special School:
"Camphill Special School’s mission is to create wholeness for children and youth with intellectual and developmental disabilities through education and therapy in extended family living so that they may be better understood and their disabilities moderated, that they may more fully unfold their potential, and that they more fully and meaningfully participate in life."

What these two Organizations do have in common is to explore something new that hasn't been discovered before. And I know what the Camphill Special School has recognized what is new: That Children with Disabilities are a gift on earth and have lessons to teach us.  This sounds so canned, sappy, and new-age, but it is the genuine perspective at the school. I have lived it for the past 5 years. 

Willie is a teacher as well as a student at this very, fabulous school. Through brave exploration, the teachers at the Camphill Special School have found a Willie we never knew.  They were the first to show us that our son can teach us all about patience, accountability, the meanings of success and progress, healing through imagination, compensation strategies, true intimacy, the power of love, to name a few. 

So Willie will be proud to visit The Explorer's Club tomorrow. To be the only student from school in attendance. To adventure to New York City. To meet lots of new people.  And of course to eat a gourmet dinner. But in his own right, Willie travels to The Explorer's Club as a messenger and an ambassador of the "True Explorers at the Camphill Special School."

To learn more about the Camphill Special School, go to www.camphillspecialschool.org

Willie's Reaction: Raising A son With Special Needs

And the wait is over...Willie was accepted at Camphill Soltane at 7:40 AM today.

My reaction was to scream with joy and relief, to hug my husband, and to genuinely relax about Willie's future. I never thought to call Willie at school and tell him the news. That isn't because I am insensitive to his needs but because he gives such little feedback about these things that I can forget.

Once I arrived at work and shared my news at 8:01 AM,  my friend said "have you called Willie yet?" That caught me off guard for of course he needed to know.

So at 8:06 AM, I called Willie. This is not our usual phone call day so I knew I had captured Willie's attention. After I told him, he said, in a neutral voice hinting at irritation and relief, "Well, it's about time."  (And the thing is, he is absolutely right. Without going into details, this decision took way too long as there were some complications that had nothing to do with him.) Then Willie immediately continued to tell me about the pig they were taking to slaughter that day.  I commented on that but then re-directed Willie to the reason for my call.  He was done talking about that however and continued on with other farm happenings.

At 8:09 AM, I told Willie I had to hang up but that I had just wanted to share the good news. His reaction was: "What good news?"  Now you have to know and understand Willie to completely "get" that comment.  On the one hand, he was all done talking about the good news as it is what he assumed would happen all along, with none of the grave concerns I had been haunted by. On the other hand, Willie is afraid of this change so he will now avoid talking about his move to Camphill Soltane. (Until it gets closer and becomes all he can speak of.)  Additionally, his brain takes in and processes information so differently than mine, or a typical brain, that his reaction must be seen through an alternative lens.

It is BECAUSE of Willie's reaction that he so deserves and needs to make his home at Camphill Soltane in the first place.

And it is about time! Such glorious news!

To learn more about Camphill Soltane go to www.camphillsoltane.org

Waiting: Raising A Son With Special Needs

There are certain WAITING milestones associated with our children.

Waiting for the pregnancy test to turn positive.

Waiting for the Pediatrician's bill of good health.

Waiting to see if they make it through their first day of Kindergarten.

Waiting for their first report card.

Waiting for their first play-date.

Waiting to see if they got a part in the play.

Waiting to find out if they pass their driver's test.

Waiting to see if they got that job.

Waiting to discover if they get into the college of their dreams.

BUT THE WAITING MILESTONES ARE DIFFERENT FOR OUR SPECIAL NEEDS KIDS!

I am waiting right now. It is driving me crazy. I am out of control. It is all I can think about. I am perseverating on this waiting.  I am a broken record....when will Friday be here....For that is the day I find out...

Willie is 21 now and in July he will age out of the Public School system. Up till now, it has been his "RIGHT" to be educated under this system. We have carved out a perfect niche for him over the past 5 years at the Camphill Special School.

But now it is coming to an end.

And I am WAITING.

Will the next program admit Willie? This feels bigger than when my typical child was admitted to college last year at this time. It feels bigger than any other transition in Willie's life. I am sure these feelings are not completely true BUT it sure does appear this way. For now Willie has no rights. He either is accepted into the new program or not. I cannot turn to or rely upon the least restrictive environment, the Individual's With Disabilities Education Act, or other such laws to help him. He is on his own. We are on our own.

It is the worst kind of WAITING!

That Mom Gap: Raising A Son With Special Needs

How can I put this gently? Moms with Special Needs Children are just different from other Moms. The gulf between us is insurmountable some days and barely noticeable others. We are not better, worse, saints, or chosen...we are just regular people who had children. But our parenthood, the essence of being Mom, is forever changed because of our kiddos whom have Special Needs.

I run a Soccer Program for kids with Special Needs. We are planning our Spring season. The very wonderful and giving Mom assisting me indicated that having soccer on Mother's Day would be a bad idea. Oh, the gulf between us just grew so big I could barely see her anymore. My inner "I AM DIFFERENT" increased to "RED ALERT." How could one small statement make our gap loud and clear?

You see Mother's Day, or any day for that matter, is just another day for me of being a Mom to Willie. Yes, I want to celebrate him on Mother's Day. Yes, I want a fabulous Spa Day on Mother's Day. Both of these have come true throughout the years. But Willie still has Special Needs on Mother's Day. They do not go away. I am important on Mother's Day but he is always more important. His needs are always louder than mine, my other kids, and any holiday that comes along.

It is just so hard to describe. But the idea that he may be on a soccer field for one hour with peers and fabulous coaches, if only to talk the hour away, brings joy to my ears. And his potential joy always supersedes everything else. But how is this different than typical kids you may be thinking? And for all of Willie's life I have had to ponder this and similar questions. Do I love him more than my other kids? NO! Does he get more of my attention? YES! Why is he needier, more demanding, more fragile, more potentially disruptive, more limited, more brain damaged, than my other 3 children? He just is. For that is what Special Needs means. And that is why I am different than most other Moms.

It is a lonely place to be.