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?

A Charlie Brown Thanksgiving: Raising A Son With Special Needs

In A Charlie Brown Thanksgiving, Marcie says to Charlie Brown:

"Thanksgiving is more than eating, Chuck. We should just be thankful for being together."

This message is the true meaning of Thanksgiving.  No wonder Special Needs Moms everywhere I turn are wrought with angst, anticipation, and bittersweet hearts.  For when faced with Marcie's message to Charlie Brown, we are punched in the gut with the difficulty of being together, when this together involves our kiddos with Special Needs.  Because it is a consistent truth that most people with disabilities are certainly NOT their best with crowds, aka: together.

I was struck with the responses on a Special Needs Blog earlier this week asking parents how they best handle Thanksgiving with their Special Needs children?  So many people talked about inviting family and friends to their houses.  For another disability universal truth is that being with lots of people, especially being with them in a traveling situation and not in one's home, is a recipe for disaster.  We, Special Needs parents out there, who have invited our entire family to our houses are sighing with relief. (Sort of)

As I am one of those who invited 20 or so family members over for 3 days of Thanksgiving togetherness, I also feel afraid and full of ANGST.  Afraid of what Willie will do, say, and act like in front of all his aunts, uncles, and cousins. Afraid that he will make others afraid.  Worried he won't have fun. Afraid he won't feel the love and connectedness that is family.  Afraid that Willie will wreck all the typical family members chance at togetherness. And then I feel torn as being together is not really fun for me, Willie's Mom.  I am too braced for the worst possibility of Willie.  It is a bittersweet dilemma that repeats year after year for every holiday and celebration.

So to those parents out there, enjoy the moments. Try to stay positive.  Remember you are not alone. And if you strive for togetherness over Thanksgiving, you are brave, noble, and courageous.  Of course, there's always the delicious food! Happy Thanksgiving!

Letting Your Special Needs Child Grow-Up: Raising A Son With Special Needs

We all know those Helicopter Moms: You can spot them a mile away. Here's what those Mamas do: they dote, live through, control, get way too involved, interfere, forget their own selves, take away natural consequences, and try to remove all pain. You see these Mamas on the Soccer Field at every game with pins of their kids smattered all over their belongings. They yell loudly from the sidelines: too loudly. You see these Moms in schools: emailing, calling, and arranging conferences to meet with teachers to argue their child's grades, bad behaviors, and what have you.  You see these Hover Moms on Facebook, posting achievements after accomplishments after amazing feats their kids do. We all know them!

I disdain these Helicopter Moms.  I vow never to be like them so I barely cheer for my kid at his Lacrosse games, I am intentional in my Facebook posts about my children, and it takes a lot for me to get involved in my kids' academic issues. I am just "so proud of myself." (sarcasm, please)

Guess what though, I am ONLY not a Hover Mom for 3 of my 4 kids. But I am one of those Mamas to Willie. Yikes.

In the world of Special Needs Moms however, we are advocates, healers, devoted, sacrificing, and all around pretty amazing. And until now, I was proud of my roles in Willie's life.  But he turns 22 on Friday and things are changing. For one, he is pushing back against me.  He wants control in all things Willie. Another thing is that he is maturing and thus able to better learn from natural consequences, no matter the suffering.  And there is also Willie's physicality: He is almost 6 feet tall, 185 pounds, broad shouldered, with a demanding presence.  Just being with him now makes you back away.  He is grown now and demands more freedom, less hovering.

And so I walk away.  I purposefully let things go. (SOME THINGS!)  I force myself to trust Willie and his demands for independence.  I patiently and painfully let his new Caregivers guide me through this separation. I am attempting to relinquish my Helicopter Mother status.

In the meantime, when Willie comes home on Friday for his Birthday, I can't wait to shave his fuzzy and scraggly beard!  UT OH!

The LIST: Raising A Son With Special Needs

This list actually happened.  Just the other day, 15 of us sat around a long, rectangular table, and wrote what we liked and admired about Willie. The fresh, new Sharpies combined with the different color sticky notes made this exercise even more precious then it already was. It felt festive! This was the standard process for the beginning of all new student's Biographical Timelines at Soltane. The meeting lasted 4 hours. More on that in another post.

So we sat around this table, scribbling away with our perfect Sharpies.  Every now and then we would look up at one another or stare into space for inspiration.  The room was silent except for the precious documenting. It was genuine and inspiring as everyone kept going and going, recording never ending things they liked and admired about my Willie. But this wasn't even the best part.

After the piles were gathered, the Facilitator of the meeting said something like "this is a great indication of Willie and his strengths, as there are so many sticky notes." The people around the table, except for myself and 2 others, had only known Willie for 5 short weeks.  Yet they all seemed driven to get down on paper what can make him so delightful.  I will never forget the kindness and love in the room that day, even before those sticky notes were revealed.

Next, this wise Facilitator read each and every note with great expression and even started grouping the common themes.  We all just smiled and beamed with positivity.  I know I blushed, as this took what felt like a very long time and was so personal.  All of Willie's strengths read aloud and then stuck to a large paper for the group to  know, process, and inhale.  It was overwhelming and humbling. And I joked that we didn't need to have the next 4 hour meeting after all, as everyone already knew Willie so well.  The group laughed.

I have imbedded those 30 minutes into my heart and soul forever.  I catch myself revisiting this list more often then not, to remind me that Willie has many fabulous qualities indeed. Perhaps that was the purpose of the list?

Guardian (Angels): Raising A Son With Special Needs

One of the perks of being Willie's Mommy are all the wonderful people I get to meet.  Through the years, a handful of these teachers, therapists, mentors, and coaches have become my good friends. These are people who see the true essence of Willie.  They cannot get enough of him.  They "get" him. They learn from him and in turn teach him.  These special folks help me to remember and see the pure spirit of my Willie.  They remind me that he is special in a way that has nothing to do with Special Needs.  For Willie is an old soul.  He touches people's hearts.  He has an ability to deeply connect with others with few words.  Through Willie's struggles and victories, others are drawn to the lessons he teaches.  One of perseverance, humor, life's universal struggles, compensations, and love.

The other day, I was lucky enough to have lunch with one of these fabulous ladies from Willie's life.  She worked intimately with Willie every day for three years.  She taught Willie how to be on a team, how to be silent, how to chop safely, and how to be a true friend.  This mentor and coach loved Willie so completely that she asked me if she could go on a Sumer Vacation and journey with him. And they did. Willie gave back to her too, clearly.  Their connection illustrated Willie's abilities to work and to bond,  and I am still mourning it's end.

So at coffee, we were talking about Willie's future.  All of a sudden, she blurted out "I will be Willie's Guardian."  I laughed and said that wasn't necessary as I was Willie's Power Of Attorney.  So then she smiled this beautiful and magical smile and said "then I will be his Guardian Angel."

And that was it for me, not being a cryer, my eyes swelled with tears. And I remembered that of course she already was Willie's Guardian Angel.  For Willie has and always will attract a few very special people that are intuitively drawn to him and watch over him. As he lay dying for that week when he was in his coma, I believe he made a deal with that mysterious upper world. And somehow, he was granted his life back, with the support and love of a select few.  Those are his Guardian Angels.

I am lucky enough to know them all. Thanks Willie.