Paint By Numbers: Raising A Son With Special Needs

Willie is home for the holidays. Fourteen days and nights. Throughout the past 7 years, this is the ebb and flow of Willie.  Willie yearns for home but when he gets here, it is a challenge. There isn't much to do and leisure time isn't Willies' speciality.  Over the holidays, there is no structure, not anything that must get done, and no routines.  Willie usually gets pretty grumpy and may get frustrated at the limited demands we put on him.  The intensity of his negativity and tantrums vary: you just have to wait and see how bad it actually will get.

I love my Willie.  I too yearn for him to come home.  And there are definite moments when things are lovely, cozy, connected.  But mostly, I put my armor on when Willie comes home just in case. This year I feel that negativity seeping into everything.

So yesterday at Yoga, during the Mediation part at the end, I had an epiphany.  I saw a paint by number painting in my head and knew immediately what it meant.  I am to stick with one emotion/feeling/incident/moment at a time.  As if I am painting with just one color.  I am to concentrate on that color alone.  If another color comes up and asks to be painted, an unhappy incident/feeling/person, I paint it but then go back to the painting and continue.  I leave that rough color behind and move on.  It was my message from myself to myself during yoga.

So far it is working, to an extent.  If nothing else, the image of painting by numbers, is a clear reminder how not to get swept away by any negative experience. And for that lesson, I must thank Willie again, even as I hear him "cusssing" in the next room.

Not Just Another Christmas Play: Raising A Son With Special Needs

Being Willie's parent can be a many splendid thing as I get to join his community every now and then. Last night, I attended the Community Play, presented by Soltane's residents and staff, some with Special Needs, some without. As the audience sat in the cozy but dimly lit Whitsun Hall, you could have been anywhere waiting for any Christmas play to begin.  But as the play slowly revealed, this was not your typical Christmas Play.

I cannot do the 45 minute experience of watching the play, being part of this magical community, justice.  Adam, the Director, and one of Willie's wise teachers, explained a bit about the play beforehand. He suggested to try not to understand it but to SIMPLY be with it. Adam explained that the process of rehearsing and preparing for was the true meaning for the individuals in the play.  

There was love in the room as differently-abled individuals sang, walked, spoke, some with great effort and hardship. There were smiles on the audiences' faces as Adam would talk-whisper someone through their lines, so they could actually say them independently. There were the curious staff children trying hard to be still and quiet, as they too sat rapt watching the play. The audience filled with parents, community members, nearby Camphill community members, just watched, embraced, and supported the brave souls on stage.

For me it wasn't the  actual play itself that left me feeling grateful and full of peace. It was imagining how important and valued each member of the play must have felt to have had this opportunity. It was their expectation that, of course, they would be in the Community Christmas play. It was Adam's understanding and loving smile when he explained it was the process that mattered. It was the pride and joy on some of Willie's friends faces during and after the play. Finally it was knowing that Willie was truly part of this genuine community. 

And as I sat there in that audience, next to Celine, one of Willie's good friends, I too felt included and important.  For in order for this community to really work, to share lives together abled and disabled, total acceptance is a prerequisite. And it is infectious. 

As Willie and I walked back to Emerson House under the sparkling stars on that cold, crisp evening, I was left with a gift knowing that Willie is part of this unique community. One connected to a higher purpose, where all people within the grasp of  it's love are respected, valued, and perfect just the way they are. That is the true meaning of our Holiday Season!

Special Olympics: Not so Special After All: Raising A Son With Special Needs

Willie doesn't like to do any exercise, participate in any sports, or use his body much at all.  So when he perked up and said "Yes, please" to my suggestion that he try skiing though Special Olympics, my heart soared.  The back-story is that he has skied three times with an instructor at our local mountain, using adaptive tethers and hula hoops to get down the mountain.  He loved it.  Willie has always loved the snow and the cold doesn't seem to ever bother him.  As this Fall has been a tough time for Willie with real bouts of depression, I saw golden endorphins flashing through my head as he skied down the mountain.

Not so Fast! There was a true administrative error on the part of Willie's new program.  The person in charge had suddenly left to care for her sick mother on the other side of the country. Special Olympics had been alerted that Willie wanted to ski but their emails went unanswered. Willie needed to be fitted for skis and boots and his medical form was way past due.  I got involved as I was informed that Willie couldn't ski. I realized that deadlines are deadlines and Willie had failed them. But I wasn't about to let those happy hormones away without a fight. After all, I thought, Willie had already been dealt a harsh deck in life, couldn't there be an extension, an allowance, or an exception?

Many emails later, some unanswered to the Director of the local Special Olympics, I decided to use the old fashioned telephone. I am not wiring to complain about the unfriendliness of the Special Olympics Sports Director.  I am not even writing to express my dismay and disappointment that she bashed Willie's program at least 6 times for failing to follow the rules. And although I am not a rule follower, I can accept, with sadness, that Willie cannot be granted a reprieve from these rules.  Willie will not be allowed to ski with Special Olympics this season.

It was the comment this Special Olympics Director made when I explained that Willie needed assistance to get down the ski slope.  Her immediate response was shock, a long dead pause, and then immediately she said he won't be able to ski with us.  The implication was that how dare he sign up for this program and need that level of help, help they don't even offer or recognize. With further prodding, she told me in no uncertain terms, that she had never even heard of tethers to help people with disabilities down the mountain.  (I quickly checked with his former ski instructor who reassured me how common that type of assistance is. ) I even said to this Director "well, why is it called Special Olympics then?"  By then the conversation had turned sour and she didn't respond. But I am still baffled why someone in the field of disabilities would make me feel that there was something wrong with my child for needing assistance to ski down a mountain.  Her words are stuck in my head and combined with my sorrow and anger at their decision preventing Willie from skiing with their organization, I am left with a poisonous taste in my mouth.

I do not want to abandon or bash Special Olympics.  After all, Willie has participated happily and successfully with them in the past. But my gut is to turn away from them for I sense that they are too rigid for my son who needs extra special care.  I wonder if they are so married to the rules that they are unable to attend to his very unique and individual needs.  And although I hope I am wrong, I reject any organization that implies that my Willie is less for needing physical, emotional, or any type of extra assistance.  I am shocked that the organization of Special Olympics has left me feeling these terrible things. Perhaps they are not so Special after all?