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.

21=Adulthood: Raising A Son With Special Needs

"What does 21 mean?"

"The number?"

"Ya, it means I'm an adult. But I want FREEDOM!"

This is part of a conversation I had with Willie today. He is 21 and is struggling with the meaning of and balance between independence and responsibility. He is grappling with typical developmental issues all young adults encounter.  However, Willie's version is characterized by his unique Special Needs.

Willie would like to be able to go where he wants when he wants. He only wants to shower when he feels like it.  Willie craves to eat what he wants and in any portion size he decides. Finally, Willie wants a Credit Card so he can buy whatever it is he wants, no limits attached. He is lacking the executive functioning skills to competently make these decisions, but that makes it even harder for him. Willie ends up feeling dissatisfied, frustrated, and confused. For the law says he is an adult. His body tells him he is an adult. But as he told me today, he feels like a child! Moreover, he informed me that I will need to always take care of him, even when I am dead. Oh, his angst!

What do you say to your 21 year old adult son with Special Needs when he so eloquently describes his dilemma?  Isn't it my responsibility to foster independence, good decision making skills, to help my Willie achieve his potential?  But sometimes, I want to wrap Willie up in my arms like the boy he sometimes is, tell him that I will do everything for him, and keep him as sheltered as he will allow. This however is not what Willie needs. Or wants! His yearning for independence is popping up everywhere. He is pushing the limits in all categories. But his maturity and level of responsibility has not caught up.

So what does 21 mean? For Willie, it means a contradiction, a struggle, a paradox. His interpretation of growing up is typical in some ways: Who Am I? What Will I become? Will I find love? What meaning will I find in my work? Am I a Child or a Grown-Up?

As for me, I will listen, support, and encourage with lots of prayers thrown in. Will Willie ever be an adult? I do not know, but sure do hope so!

Too many books: Raising A Son With Special Needs

Willie loves books. He always has. The feel. The smell. The look. The potential. His desire for them fueled our constant purchases.  His Brain Damage left him very able to read. Reading is one of  Willie's greatest strengths. Through reading Willie has become an expert in Animals, Cooking, Under the Sea Creatures, Mythical Monsters, Star Wars, Pokemon, Harry Potter, and Batman. As a parent of a child with some very significant deficits, I celebrated Willie's reading with "too many books."

 Some of Willie's Books

When Willie was 16, we were lucky enough to have found him a Residential School called The Camphill Special School. As this was a traumatic but life-saving transition for Willie, we packed up all his favorite things to ease the move. Blankets, pillows, clothing, toys, and many, many books. For books are Willie's security blanket. He holds them, carries them, sleeps with them, and brings them everywhere. We knew Willie's books would give him safety, comfort, and consistency as he ventured to his new school.

About 10 weeks after Willie started school, we were having our weekly talk with Willie's House Father when he dropped the phrase "too many books." By then Willie had transitioned nicely to his new school and very different living arrangements. He had been home once and seemed remarkably lighter and less sad and mad. Willie was beginning to thrive both in school and work at this very Special place.

So Robin, Willie's House Father, continued on with his description of the problem of "too many books,"along with a solution. He described Willie's insistence on carrying piles of books from place to place, his inability to keep these precious books organized,  and his very odd process of reading these books. Robin said his idea was to put all of Willie's books in a library in Robin's room, giving Willie rights to take out 6 books at a time. He hoped Willie would not only be able to keep his books less scattered but that Willie would perhaps read them in a more in-depth and sequential manner, from beginning to end, with greater concentration?

My reaction was as if I had been turned inside out. As if I was a slug and Robin's words were salt poured all over me. For 16 years, I had taken salvation in Willie's interests in books and all that this encompassed and implied. For all of Willie's limitations, I always knew Willie's books made him Special, made him interesting to others, kept him from being too disabled, made his horrific behaviors bearable, made all my work for him somehow OK. To hear Robin suggest Willie had "too many books"was unfathomable and his solution devastating.

But you see when you get to the point of needing to find your disabled son a Residential School and you win the Jackpot with discovering a Heaven on Earth, you cannot say NO. I had to give Robin's library a chance. I hated it.

And in the end, Robin's system resulted in everything he hoped it would. It was the beginning of Willie learning that less can be more. Willie started to get that he needed to keep his STUFF in order. Willie learned how to spend more time on his books.  He learned to read from beginning to end and to stick with one book longer than ever before. It was a mini-miracle. The results were essential, crept into other parts of Willie's habits, and have lasted to this day!

And I learned a comforting and invaluable lesson. Never before had any school, therapist, institution, or individual taught me anything about Willie. I was always the Willie expert armed with explaining him everywhere he went. But Robin showed me that he could teach us something about Willie and improve his life. It couldn't have come at a better time. For we had finally found a place where Willie could grow without me always interpreting, explaining, advocating, and enlightening. Five years later, this place, The Camphill Special School, has never stopped teaching me and insisting on Willie's phenomenal growth and maturity.

There is such a thing as "too many books." Thank you Robin!

Robin and Willie today

The Hat Lady: Raising A Son With Special Needs

Writing a Blog sounds romantic and exciting as a concept. The actual act is more challenging than I imagined. Sure I have lots to say about raising Willie; but some stories feel too sad, too raw, too exposed to share. I am working on that as a blogger and will write about our most recent dilemma another time. But in the meantime, I want to share the story of The Hat Lady.

I work in our local Elementary School in the Autism Support Classroom. I have found that many Moms of Special Needs kiddos find their way into the Special Needs work world. Cathartic, giving back, sharing knowledge are some motives to name a few. But that too is for another time.

So, this knitter drops off these ten hats for our Classroom yesterday. She is known at The Hat Lady, a local legend who knits beautiful hats and donates them to the deserving. Her intention is to touch lives in the community in some small way. Upon dropping off the hats at the School Office, she explained that she met a nice Teacher at the local Coffee Shop in December.  She was so inspired by the fabulous classroom this teacher described, that she chose us as her next recipient.

This action created quite an uproar in our school community. Who was it that inspired this Hat Lady to give like this? Emails were sent asking to solve this enigma. Texts inquired who was the mystery Teacher. Why was our classroom the lucky one?

In the end, it really doesn't matter who, why, when?  The gesture made us feel special as Teachers. We happen to work in a very intense classroom with 8 rather needy, challenging, and remarkable kiddos. We dream about these students...become obsessed with them...worry and love them. We admire and appreciate the Hat Lady because she "gets it." She understands that our kids require great effort, patience, and the necessity to dig deep. The Hat Lady is telling us Thank You. She is recognizing our students and their families as deserving of a warm and colorful hat. A gift given for free. A gift honoring our community. Thank you Hat Lady.

To read more about The Hat Lady, go to:

http://www.pennlive.com/midstate/index.ssf/2013/03/camp_hill_hat_lady.html