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.

Little Bits of Light: Raising A Son With Special Needs

"Who am I kidding? I thought. Why did I even think about writing this post? In my world you only have to wait a few hours and the sky will turn cloudy again. I guess that's why we need to document and savour the little bits of light, whenever they come."

The above is an excerpt from Louise Kinross' post from BLOOM - 
Parenting Kids With Disabilities, a Special Needs Blog.  https://mail.google.com/mail/u/0/#inbox/1493756f2acc81d2.

I love this blog and read it every day.  This particular entry touched me due to it's brutal honesty.  My blog seems dark and I struggle with the extent of my public negativity. But Louse Kinross was able to illustrate both the happiness and the hardship of raising a child with Special Needs.  I love how she explains both ends of the feelings spectrum as 2 truths you are forced to juggle and embrace as a Special Needs parent.  

Lately, as Willie has been struggling, I too have been feeling low, despair, and defeat. I seem to have lost the ability to remember and hold-on to all of Willie's strengths, abilities, and gifts. I feel guilty about this. Yet I feel stuck. All I see is grey.

Louise's mention of those "little bits of light" pierced my grief.  Those words captured my attention. She helped me to remember that not all days with Willie are so gloomy. That some days, I will see bright yellow, powder blue, and deep red. Some days, I do revel in the lessons Willie teaches me.  Some days, like yesterday, I received a report that Willie is improving.  That the hug he gave a co-worker yesterday made that co-worker's year. That Willie will not always be so depressed, frustrated, and anxious.  And that, as Louise says, I need to "savour" the little bits of light, for they are fleeting, but seem to always return.

So today, when I think about and ponder Willie, as I do endlessly, there is a rainbow of colors amidst words like adjusting, resilient, and loving all swirling around in my brain. I hug, embrace, and taste those "little bits of light" as I know they are delicate and temporary. 

Rehab: Raising A Son With Special Needs

We took Willie's computer away.  He is in withdraw.  Literally! He calls me now: he never initiated calls before. YAY! We talk endlessly about his computer. Willie asks me when he is getting his computer back. Over and over again.  The first call came 2 days into his withdraw. Willie said: " I am doing everything you said. Going to classes, sleeping, taking showers...now when can I have my computer back?" (It had been TWO days!) I explained to Willie, calmly and clearly, that he was doing great but he needed to keep this up and we would consider his request after some time.  His immediate response was: "Ya right, 3 days or 3 years...." This comment both showed Willie's inability to process and understand time as well as his extreme thinking: all or nothing!

The definition of rehab is "the process of helping someone (such as an injured patient or drug user) to become healthy again." Synonyms of rehab include healing, mending, and recovery.  The idea that Willie is in rehab now that we have taken his computer away is not far from the truth.  But this is rehab for his broken brain more than an addiction.  For most 21 year olds can regulate their computer use.  My 21 year old cannot as his brain is damaged.  

The verdict is still out whether Willie can learn to manage his computer, even with support. There is no real recovery from Willie's Brain Injury.  Willie's rehab has been centered around helping Willie to reach his potential even with his brain damage. We have helped him learn compensation strategies, given him accommodations for his deficits, and put a safety net in place when things have fallen through "the brain cracks." Willie's whole life has been a type of rehab really. And truth be told, there has been enormous growth, healing, and improvement.  

I hope I can answer one of Willie's phone calls one day with: "You can have your computer back." 

THE INTERVENTION: Raising A Son With Special Needs

I told Willie yesterday that I was keeping his computer at home; that he could no longer have it with him at Soltane.  He flipped out. We, his Counselor, His Outcomes Facilitator, Willie, and myself, were in his counselor's small but very cozy and safe office.  It was planned that I would deliver the news. Planned meaning everyone knew but Willie.  I ambushed him. It was an intervention of sorts. He fought me like a true warrior. That office became smaller and smaller as Willie spiraled through his typical pattern.  First primitive anger including yelling and swearing. Next lashing out at me.  Yes, he squeezed my finger so hard that I thought he would break it.  Then the anger was directed towards himself, as he bit his own hand and drew blood.  Finally, the tears.

I don't even know how long that part of the hour took. Could be 5 minutes or 20.  It all was very intense, draining, and scary.  In the end, Willie allowed me to hold him, right there in that tiny room, in front of 2 people who clearly love and care for him.  I can only imagine how exhausted Willie felt/feels from the encounter, as I am still reeling.

An hour later, after the intense emotions had passed, Willie was full of self-recriminations, another typical pattern for him.  As always, I told him we had moved on and accepted his apology and now it was his turn to forgive himself.  I know for sure his self-loathing is still there as "forgiveness-of-self " is a challenge Willie has yet to meet.

The part that surprised me is that Willie, once calm, seemed peaceful with our decision to take his computer away.  What I mean by this, is he did not argue or bully me into discussing the issue endlessly, as his usual pattern.  I don't know for sure, but I guess and certainly hope that Willie feels relieved and rescued.  You see the computer has become an addiction. It is interfering with his daily living.  It is keeping him from sleeping and eating properly, even bathing.

Was our intervention successful? I don't know yet.  On Sunday, as he leaves after a hopefully awesome weekend at home, we will keep his computer and he will go back to Soltane without it. Will Willie join the community more? Will he sleep? Will he venture out of his room more as the allure of YouTube is gone? Time will tell. But we took the first step. PHEW!

It's Just A Computer: Raising A Son With Special Needs

We bought Willie his very own laptop for his graduation from 5 wonderful years at The Camphill Special School.  It made sense as Willie loves browsing on the internet about his intense interests. It made even more sense as his school didn't allow use of electronics and Soltane, Willie's new program, does.

Who knew it would come to encompass Willie's struggles to a tee? You see, Willie cannot and will not turn off his computer at night and thus is not sleeping.  Because individual rights are a priority at Soltane, Willie is not losing his rights to his computer.  Recently, after a team meeting, the folks at Soltane decided to turn off the House internet connection at 10 PM.  I thought that was brilliant and am not sure how Willie has made sense of this.  He still is super tired, indicating he still is resisting consistent sleep.

My husband and myself have almost decided that after Willie visits next weekend, we will keep his computer at home for a while. I don't want to do this as I would prefer Willie really gain enough self-regulation to give his body the sleep it needs. But I worry too much about Willie's overall well-being to wait him out.  If he doesn't sleep enough, his mood is particularly impaired.  If Willie is too tired, he will be more susceptible to getting sick.  And of course, Willie tends to have seizures when he is sick.

This computer issue holds much meaning.  Will Willie ever be able to regulate his basic need for sleep with his very real rights and desires for other activities? As Willie transitions to an adult community whose main emphasis is on teaching self-advocacy skills, the computer gains even more significance.  I don't want to treat Willie like a child and take his things away. I can tell I will learn much from Soltane about Willie's emergence as a young adult. But for now, I just want my son to sleep.

After all it's just a computer! But I know it's one of many future struggles we will face as Willie moves closer to true adulthood.

Imaginary Role-Models: Raising A Son With Special Needs

I've said it before and I'll say it again: Willie uses make-pretend role impersonation to deal with his Special Needs.  I get it. It all makes perfect sense. It started when he was little and became fascinated and obsessed with Darth Vader.  Willie's 8 year-old self was grappling with simple good and evil themes. By then, Willie had begun having tantrums.  During the tantrums, he would scream terrible things.  After he calmed down, Willie would be filled with remorse.  I know he was drawn to Darth Vader, as he also said and did terrible things.  Darth Vader used to be good but turned bad.  He became a role-model of sorts.

Through the years, Willie has continued to take on other personas:  Darth Sidious in Harry Potter, the Phantom from Phantom of the Opera, Batman, The Joker, and even Slash from Guns and Roses. Willie has continued to have self-regulation issues, always feeling terrible about himself after regaining control.  These fantasies of becoming these "heroes" help Willie to reconcile the "good" and "bad" sides of himself.

Up until last night, I instantly played right along.  We have our roles and I am usually Helen Keller,who randomly runs into one of Willie's heroes.  We always talk about deep and meaningful concerns and themes. Willie is transparent, getting right to the heart of the issue. There is usually a problem, as his character has done something bad, or encountered someone doing something bad.  Willie always wants my help, forgiveness, or guidance.  It all feels therapeutically positive.  I get what Willie is trying to do, even if he doesn't.

But last night, the rules changed and I wouldn't play along. Willie decided to be Hannibal Lecter from The Silence of the Lambs.  First of all, I don't know how Willie even knows about that evil character, as he has never seen the movie. But Willie has an awesome grasp on popular culture, so I am not surprised he found out about Hannibal. But I am surprised that he adopted him as one of his characters.  I will admit I know little about Hannibal, except that he is a serial killer. So I guess I better google him.  But in the meantime, I am disturbed that Willie would adopt him into his psychological role-playing.

The only thing I can imagine is that Willie feels disappointed and mad at himself, as his transition to his new program has been a tough one. Perhaps Willie's own anger and frustration feel so out of control that he imagines himself to be as evil as Hannibal.  Either way, I will not play that game.  Dig deep Willie and find another role-model. I will wait for you.

That YEARNING: Raising A Son With Special Needs

I MISS WILLIE!

I haven't written this Blog in a while or done much besides meet the basic needs of my family. That's how difficult it was to deal with Willie these past several weeks while he awaited the BIG CHANGE. Meaning Willie was moving to a new and wonderful Residential Program called Camphill Soltane. His behavior regressed so much in these last few weeks that I didn't even pick the bath and sleep battles, as I knew I would lose. I felt both lucky and blessed that Willie was able to walk out the door on that Saturday, August 30th, to get in the car to go to Soltane. (He was in fact clean, having bathed!)

Then there was the 4 hour overlap while we attended a family meeting with Willie and the other residents, ate a group lunch together, unpacked him into his own room, and met with his Residential Manager, aka Laura. The feeling in the room during the meeting was hard to describe.  Sitting with families of young adults who share the same sorrows, tribulations, and joys was a feeling you could almost tangibly hold in your hands. The smiles and knowing glances shared around that circle in the beautiful Whitsun Hall lent me strength, when I felt weak. Watching Willie sit with 4 other young adults at lunch, only 1 whom he had known before, chatting as if they had all seen each yesterday, gave me courage where I had only fear. Setting Willie up in his first private room in 5 years reminded me of sending my College Sophomore off earlier in the week.  And finally sitting in the calm, peaceful, and very beautiful Emerson House, sharing emergency seizure directions with Laura among other things, forced me to trust.  Her eyes, fairy-like and belonging to an old-soul, gave me a connection I could rely on.

And now I am back in my life without Willie.  He is doing well.  It's not perfect at all. There are plenty of wrinkles to iron out. People who need to get to know him. Strategies that need to be learned. His comfort and trust have to be earned and expereinced. So much growth ahead of him. Again I feel blessed and lucky to have found Willie a perfect home for the next 7 years.

But there there's this YEARNING.  It always comes.  It doesn't make sense as Willie was so draining to be around these past few weeks. I wouldn't want him here: there's no purpose or structure. He needs to be at Soltane to grow, learn, gain confidence, develop, become independent, and mature. Yet I yearn for him.

And every night I go in his room and close my eyes and just smell him.  It is just plain comforting. I wrap my yearning in this wonderful, musky smell and then I feel better.

It's Normal: Raising A Son With Special Needs

My two oldest boys (18 & 21) are three years apart and in some ways mirror reflections of the Developmental Tasks of young adulthood. They both have to hate me and my husband in order to become independent and truly grow up. It just stinks and hurts so bad.

But of course there is a "Willie twist" on this idea. It would just be so easy to blame Willie's nastiness on his Special Needs. I LOVE to blame most things on Willie's Special Needs. The rude comments, the negativity, and the rebellious nature are especially harrowing from a 21 year old boy-man with limited cognitive reasoning skills and a lightening quick propensity to anger. Going to sleep at night can turn into a major meltdown, is a constant stressor, and sometimes doesn't happen until he's ready. (Even if the clock says 6 AM!) I want to attribute this is all to Willie's Special Needs. This is my fallback position on the hardships of raising Willie.

But then his younger brother is in the other room displaying all the same type of behaviors. Sure, he can self-regulate better and doesn't have meltdowns. But that doesn't stop him from storming away from the dinner table when I ask too many questions. (Who knew 2 was too many?) Sure he does go to sleep at night. But that doesn't stop him from coming home at any hour he pleases and not waking me up. And I know in my heart these behaviors are normal and necessary.

So in the end I am grateful for this other son, who is so different from Willie. This boy-man who goes to college and thrives. This person who holds a steady summer job. This boy-man who has deep, meaningful relationships. All of these accomplishments are so divergent from Willie. But I see his icky behaviors at home as a necessary step in making him successful in college, work, and connections. And then I see that Willie, although not as successful at these relationships of work and love, yearns for all the same things. I know (and am relieved by this knowledge) that some of Willie's despicable behaviors are just a normal boy-man's attempt to grow up.

And for that insight I am grateful to my second son. Because it's just too easy to blame all the hardships from Willie on his Special Needs. Thank you dear son for you have lifted some of my burden unknowingly. Now hurry up and turn nice!

Willie=Litmus Test for Human Connection: Raising A Son With Special Needs

This is Willie: the inspiration for this Blog.  I know I am partial, but look at that face.  Doesn't  he just inspire goodness? Maybe you just have to spend time with him to actually "get it." He is just so friendly. Willie never met a person he didn't want to talk with. He exudes friendliness, openness,  and connection.

I had the opportunity to travel alone with Willie this past weekend. Never have I had this chance, as we have a large family. And frankly, I am afraid to take Willie out in public alone.  I never know what will set him off and how bad his meltdown will be.  I have avoided this scenario for many, many years. This weekend was an opportunity I didn't choose but decided to risk, for there was no other option.  And guess what? It was the best 24 hours I have ever spent with my Willie alone, ever!

What I noticed as we traveled from Massachusetts to New York was Willie's zest for connection to others. Everywhere we went he had something to say to whomever was there.  His comments, an attempt to build a friendship of sorts, were not inappropriate. Sure, they were unusual from such a young man this age, but they were mostly "on topic" and meant to forge a commonality.

And I saw something I never noticed before. Willie was able to capture the attention and friendliness from most people he ran into. It is true he would continue talking even after the initial conversation was over. Willie was attempting to re-connect, so to speak.  By then, most people  had walked away. But it was awesome to see most others either smile or respond back to Willie's initial comments.

So I decided that Willie is a litmus test for "Human Connection." And the good news is most humans will connect with Willie, if only briefly. It warmed my soul to observe this. I am so lucky to be the Mother of such a friendly guy. Someone who truly touches others just by being himself. This is Willie.

                *Dedicated to Tamara Sheen, for teaching me how truly wonderful our Willie is.*

To The Man At The Hampton Inn: Raising A Son With Special Needs

I have been thinking about you all day. You are haunting me. Your conversation with me and my Willie was more powerful then you will ever know. You have gotten under my skin. I don't know why you said it. I keep wondering about your motive. Regardless, you did damage today at that Breakfast Buffet.  You snuck into my fragile son's mind and made him feel like a freak. You will never understand how impossible that is to undo. You just should have kept your mouth shut!

Here's the part I cannot understand: Why did you say anything at all to my Willie?  You are about 25 years old, in town and in that hotel, for a wedding. I know you had to have grown up in school around people with Special Needs. Sure at first glance, Willie, standing about 5' 11" dressed in yellow plaid shorts with a light blue tank top, helping himself to food at the Breakfast Buffet, may have appeared to be your peer. But if you had looked carefully, you would have seen the other plates he had already filled with food. You would have seen his hands trembling as they do, either from his cocktail of meds or the Brain Damage itself. If you had really been paying attention, you would have seen me and him whisper fighting about the amount of food he was shoveling onto his 3 plates.

But why did you approach Willie in that rather aggressive posture you took and rudely ask: "Did you just put that French Toast back?" What was your point, as you obviously saw him do that. And then when he said "yes," for he doesn't lie, why did you say "That is wrong." Are you the French Toast Police? Do you suffer from such bad "Germaphobia" that you needed to lash out at my Willie.  Don't you think that if he was a typical 21 year old eating breakfast in the hotel lobby, as you assumed, he would have known that it is wrong to put food back from the buffet? So why did you ask him?

And it just kept getting better. For I lashed out at you. I told you that Willie has Special Needs and was on the verge of a Meltdown. A potential doozy. I truly can't remember what else I said as you really rocked my world. And you never apologized. In fact, it took you too long to walk away, as if you wanted to argue with me. Or worse, him.

Then you ate your breakfast at the next table for over 20 minutes while Willie crumbled. You had to have seen him. You had to have heard us talking and talking and talking all about you for the whole time you just sat there. You had to have heard him say, "I guess I just don't belong in hotels!" But you did nothing. Said nothing.

And what I know you didn't hear or see was the recurring conversation that lasted throughout the day about you. How I had to tell Willie over and over again that you just were not a nice person. That we both had to "let you go." And I know you didn't see me cry after I dropped Willie off at camp, which is by the way, where I was taking him that day. The tears I rarely let fall just kept coming and coming. You helped me shed them.

And you certainly have no idea how your 2 sentences this morning to Willie are embedded in his self now forever. For his memory is as sharp as a tack. And lately, as Willie is maturing, he is thoughtfully and constantly wondering why he has to have Special Needs. And we work so hard to help Willie see his strengths and gifts despite the Special Needs. But then someone like you comes along...

What Willie Taught Me: Raising A Son With Special Needs

Many years ago, my sweet, perfect 2 year old Willie went to a Gymboree Birthday Party and had a blast. Two days later, he developed an ear infection, not uncommon for 2 year olds. Did he pick up that germ at the Party? Probably. Why do I even wonder? Because 3 days later, he was in a Coma, diagnosed with Bacterial Meningitis.  That Bacteria made his ear throb and his body sick and somehow wandered into my toddler's otherwise healthy bloodstream. Unfortunately, that persistent Bacteria then found it's way into our son's cerebral spinal fluid and then up to his Brain. As we sat there for 7 endless days and long nights waiting for our Willie to either die or wake up, we thought a lot about the origin of that Bacteria. The Bacteria that wrecked our son's life.

My sister's son, Zack, came home from Israel yesterday. He was on a capstone group tour with his camp that got stranded in Israel for an extra week due to the war. I watched my sister sit there helpless and beyond worried for 7 days and nights waiting for that precious 16 year old son of hers to come home or.....The alternative was unspeakable but never far from our sealed lips and vivid thoughts. Many times over the past week I tried to help her by sharing my unique way of dealing with potential tragedy that Willie taught me.

What I learned while I waited for my son to live or die was you never know what's going to "get" your kids? Kill them, maim them, harm them, sicken them, disable them....Whatever evil you imagine. And I shared my knowledge from Willie with my sister. I told her she can and should worry about her son, Zack, stranded in Israel but most likely he will be fine. My lesson from Willie was to try to breathe through the fear and hang onto hope.  Willie taught me that I shouldn't try to predict and then worry about the unknown harm that may or may not come to him. That I may as well choose hope and non-worry. Either way, the outcome will be the same.

Throughout the years, I have chosen this unique path, mostly free of fear.  I don't worry like some parents.  I don't fret or stress over most things. I know I am completely helpless and unknowing. I know my imagination can not even conjure up the potential terror that could grasp one of my kids and take them down.  I just mindfully choose to live in the present, not afraid. Now if you met me you would laugh as I am not a particularly calm or zen-like person.  But deep down I am grounded and wise. These traits are taught to me loud and clear from Willie's terrible journey. Willie, as he suffered debilitating Brain Damage, gave me a gift.  For that I am forever grateful.

As we are all grateful that Zack is back in the USA, safe and sound from that particularly, scary war.

Sexuality and People With Disabilities: Raising A Son With Special Needs

My dear friend asked me weeks ago if I wanted to go to a workshop on Sexuality and People With Disabilities. Hmmm, I know I should do this as Willie's parent and hmmm, I guess so.  I acknowledged my reluctance but decided to do the "right" thing and attend.  Little did I know the Speaker, David Hingsburger, was clearly world renowned in the field but was also a gifted speaker. He only spoke for 2 1/2 hours, but his words moved me to tears, laughter, joy, sorrow, and total exhaustion.

(By the way, in the last 4 days, Willie has explored all sorts of new "Sexually" motivated topics on his new computer in the privacy of his room.  The history button on the computer is oh so revealing: who knew Willie found pregnant women sexy? I certainly wasn't used to this and couldn't wait for the workshop to guide me as Willie's Mom. )

David Higsburger spoke from his heart about Sexuality and People With Disabilities, from over 30 plus years as an expert in the field. His real and very funny stories left me on the edge of my seat waiting to hear what would happen next. His observations, epiphanies, and true wisdom gleaned over the past 30 years taught me more about Willie and his Sexuality than I had known before. Please visit David's blog to learn more about him and this crucial topic @ http://davehingsburger.blogspot.com/.

What David taught me today was what I'de intuitively known all these years but hadn't found the words. The grief I had to endure to celebrate and love my Willie had obliterated the Willie that had Sex, had a girlfriend, and got married.  I had to grieve the loss of my normal son many years ago, and unfortunately am called to do so again and again. That Willie that was going to grow up and be a fully Sexual Being was gone.

Mr. Hingsburger challenged me today to cherish and celebrate my adult son who is Sexual. Willie yearns for a girlfriend. He obviously has a Sexual Identity that prefers pregnant women. It's all right there for me to see. I just didn't want to. I couldn't. That Willie was buried.  Now I will slowly unearth that version of Willie. It is painful as I cannot control whether he gets a girlfriend. But now I know I have no choice. I must encourage and acknowledge the Willie that is an "Individual With Disabilities With a Sexual Identity." WOE!

Thank you David Hingsburger!

Willie is HOME: Raising A Son With Special Needs

I wanted to write about Willie last night so badly. He just got home for his 6 week Summer Vacation.

I wanted to explain the meaning and heaviness of 5 years worth of his stuff on our Guest Bed. I wanted to talk about the horror of going to Bamboo, our Do-It-Yourself Yogurt Shop. I needed to write about how happy he was when he arrived home for Summer Vacation with no siblings home. I had to share the joy and beauty of his last Ceremony at The Camphill Special School. I needed to explain that the reason Willie bites his nails so brutally is because he just likes them smooth; no sharp edges allowed. (He finally told this to me after 21 years of constant biting.)

But Willie was on the Computer. Yes, we had just given him his first Macintosh laptop computer of his very own. (Not loud enough, he now tells me, for his YouTube surfing.) Sure there was an iPad around. But NO, Willie was on THIS computer with THIS keyboard where I write THIS BLOG and he WASN'T budging.

And things were already so tense and tricky that he wasn't moving and I certainly wasn't asking him to move. So as I was bursting to blog about Willie, I was frozen off the computer by him. The very episode at that yogurt store that I yearned to speak of was stuck in my head. It haunted me, paralyzed me, and kept me from doing anything at all for several hours until I went to sleep.

But today is better. Willie has processed the Yogurt incident and put it behind him. I was dramatically reminded to pick my battles very, very carefully.  (Yogurt is not worth it, ever!) Willie is definitely home and now the computer IS free.

Selected: Raising A Son With Special Needs

Today I opened a letter addressed to my son, who was 18 last October. It was from The Selective Service informing him that he needed to register with them. The first sentence said: "Our records indicate that you are a man..."

Willie never got that letter. Until today, I wasn't even aware that 18 year old boys were still required to register with The Selective Service. And why is it called the Selective Service anyway?

Sure, the letter took my breath away for my son who is required to make himself eligible to go to war, if one should arise. But after that feeling, my next reaction was all about Willie.

Willie receives Disability from the Federal Government and I had to work very hard to establish this for him. But I don't walk around thinking much about how our government views Willie. And then smack, there it was: HE IS DISABLED, exempt from registering with The Selective Service, and quite unable to fight in a war. It was a knife to the heart visceral reaction. A slap in the face. As if a loud megaphone was resounding: WILLIE IS DISABLED, NOT SELECTED, INFERIOR....

And another thought I have is that this other son of mine, 3 years younger than Willie, is referred to as a man in this letter from The Selective Service. And I know as well as other Mamas out there, that my 18 year-old, although 6 feet tall, is definitely not a man yet. But what about Willie, who is turning 22 in 4 months. Is he a man?  Not according to The Selective Service. According to them, his is another category, DISABLED, and not truly a man.

My reaction of course is tainted and weighed down by years of navigating this non-disabled world with Willie. Day after day I have had to advocate for him and explain him to the world as a capable, smart, funny but limited child. And now as he ages out of the School System in 13 days, he is not a child anymore. But neither is he a man.

I am left feeling grateful that we are not in wartime for my 18 year-old boy-man. And left feeling uneasy for my Willie, as he transitions from his School-Age Program to an Adult one. I am proud of Willie as he evolves into a wonderful, kind, competent, sensitive, loving and disabled 21 year-old. Moreover the Government will care for and protect him, not the other way around. So why does that knife wound sting so?

SOCIETY and DISABILITY: Raising A Son With Special Needs

I am consumed with Willie's latest quandary. Who will pay for his new program, Camphill Soltane? Is it our societies' responsibility? Is it ours, his parents? I don't have the luxury of pondering these issues because on July 16th, the School District's financial support ends. FOREVER!

As I navigate Willie's journey to true adulthood, I am forced to wonder about and advocate for societies' financial responsibility in his adult life. A wise man and mentor explained to me that our society made a moral commitment to care for those unable to care for themselves. He explained to me that in the 1970's, the "De- Institutionalization" of our Developmentally Disabled citizens began. Our society committed to supporting and absorbing the Disabled populations into our culture.  I embrace and understand this principle.  However, this idea that society somehow must care for or really pay for my disabled son's life, now that the school money is over, is super provocative.

My husband and I yearned for Willie 23 years ago. After he was born and suffered seizures and then meningitis, it never dawned on us that anyone else would be responsible for his well-being and care. This of course included how much money it costs to feed and house him, and the endless medical and therapy appointments he required. (There were numerous battles with the Insurance Company, but we payed our premiums to receive these services.) Of course, as Willie started the Public School System, we entrusted them with his medical, social, emotional, and academic care; as scary is that was. After we ran into deep trouble and were unable to create a program that best suited his needs, we pushed the School District to the limit of the Individuals With Disabilities Education Act (IDEA became a law in 1975). It was clearly the School District's responsibility to educate Willie. It was the Law! Sure he was still our kiddo, but the School had to provide him a fair and adequate education. This made sense and I fought for Willie with my heart and soul.

But now? And if I do come to accept that society has a commitment to care for those who cannot take care of themselves, why do I feel so unsure? Why do I have to advocate again for Willie's rights? And yet here I go again, discussing Willie's limitations, his disabilities, all of the painful parts that make him one of those people who cannot take care of himself. The parts of Willie that make it unsafe for him to stay alone. The parts of Willie that are emotionally volatile due to the Brain Damage. The parts of Willie that make it that he is unable to have and do a real job. The parts of Willie that are fraught with years of grief regarding the child he might have been. But no time for grief. I am in a new battle. But the ground under my feet is just not as firm as it used to be.    

Siblings: Raising A Son With Special Needs

All my kids were together at home a couple of weeks ago. Like any family, as kids grow-up and go off to college and such, this reunion is rare and usually takes planning. Like regular families, this gathering carries expectations and excitement from all persons. Like all families, the dynamics are rich and complex. For the Special Needs Family, it is even more complicated and plagued with what-ifs.

As I drove home with Willie for that weekend, he enthusiastically spoke about one of his younger brothers, the one who is away at college. Willie knew Teddy would be home that weekend and you could tell he was psyched. When the two of them came together that weekend, there was a calm, a knowing, and a joy you could pick up coming from both of them.

And probably like most families, they, brothers home for the weekend, didn't spend too much time together. But I will never know. As Willie was drawn to his routine on You Tube in the Computer Room, Teddy was hanging out with HIgh School friends. As Willie went on an adventure with Dad, Teddy remained asleep and then thoroughly engrossed on something on his computer screen. And I wondered all weekend, if Willie was without Special Needs, would they be inseparable on this rare reunion? Would Teddy look up to Willie as the older brother, instead of the other way around?  Would they share deep secrets and private conversations I would never know about? I wonder what their relationship would have been like.

The last day that our family of 6 was together, we went to the pool. Teddy never joins us at the pool. And Willie loves to swim. But this afternoon, everyone showed up at the pool. The brotherly/sisterly connection was strong and superseded special-needs. The companionship was fierce as they all sat together schmoozing, complaining about me, deciding what snack they would order from the snack-bar. I watched them out of the corner of my eye, my 4 children, all in one space, and smiled big. It was a rare and happy event. Special needs or not!

But I will always wonder, what if?

An Amazing Book for Siblings!

That Dreaded Phone Conversation: Raising A Son With Special Needs

When your child has a Disability, you have to spend time talking to The Insurance Company, The School District, Various Government Agencies, The Social Security Administration, etc, advocating for your child's rights. All these conversations end up etching a familiar pathway in your brain. Your pain and sorrow bursts forth and your anger spills over that you even have to do this type of advocacy work. Your entitlement and rage rear their ugly heads as these institutions are blocking your child's need for such services. It is true there are plenty of Customer Service Specialists and School Administrators that are empathic, but even they are limited. The norm, however, is Mike Nelson.

I spoke to Mike earlier this week from The Social Security Administration. I had a simple question for Mike. What would Willie's payments be once he moved to Camphill Soltane, now that he has turned 21? Our conversation definitely began badly. If your Special Needs kiddo receives SSI, you know how complex and confusing the language is for the benefits your child receives. I referred to Willie's benefits as Social Security Disability and Mike abruptly and dismissively corrected me with a canned script correcting my error.

I will not go on about how Mike ended up telling me that I needed to stop talking over him. In the end I asked for his Supervisor and we even had a fight over what Mike's name was. When I asked him his name, he responded: "I already told you." I didn't pay attention to that opening line of our conversation, as I have been there so many times before. When I asked him to repeat his name, there was literally a 30 second pause.

After I hung up, I was a mess. Having to defend myself to Mike when all I wished at that moment was that Willie didn't have to receive SSI. All  I wanted to do was scream/cry to Mike that my son had Meningitis that caused Brain Damage, and that I wish he was like my other children and didn't need this assistance. I wanted to tell Mike how his combative attitude towards me just re-opened wounds I try so hard to keep covered. That the minute he stared being nasty, my brain reverted back to the hundreds of conversations I have had in Willie's life begging for what he rightfully deserved as a vulnerable human being. I wanted to tell Mike how tired I am of advocating and fighting for Willie. I wanted to tell Mike how our conversation had broken my spirit.

Mike Nelson's Supervisor has yet to call me back, as promised. I am not even sure I want to talk to him. I can't see a Sensitivity Training being offered at the Department of Social Security's Disability Division. Can you? And anyway, my spirit is slowly mending and almost back to my status-quo of loving, accepting and being OK with Willie. Why risk that?

The Music Recital: Raising A Son With Special Needs

Every May, we are cordially invited to Willie's Music Concert by his teacher, Elsbeth Sunstein. If you cannot already tell that a music teacher from The Camphill Special School must border on magic, you must be able to by her sunny and welcoming name. Elsbeth is a beautiful, lithe woman with soft long white hair, which she wears up, and is always dressed in soft, muted, flowing white, pink or yellow attire. She is able to teach even the most disabled students to play the piano. Her voice is calm, quiet, and captivating. You just want to be near Elsbeth.

This was to be Willie's fifth concert, but his first playing the Guitar. The actual guitar playing was miraculous and full of spiritual energy. However, what I will always remember is NOT sitting with Willie, for the first time ever.

When I finally found a seat amongst the bustle of the rest of the audience, I, of course, saved one for Willie. But 5 minutes later, I finally realized that he had found his own seat, right smack in the middle of two old friends. It just so happens that both these young women are now living at Camphill Soltane, Willie's new Fall Program/Home.

As I watched him navigate his way through the concert, whispering to his friends, in an easy posture with legs crossed, I suddenly knew Willie was growing up. That his nervous presence consistently next to me during the past four Concerts, that required me to calm him down, was no longer necessary. Willie was coping with his nerves in a much more appropriate and independent manner.  Oh, I was thrilled to watch him play that guitar, but watching him sitting three rows ahead of me was the real Concert!

The Last IEP: Raising a Son With Special Needs

Willie and Tamara, his Co-Chef/Instructor

Willie's last IEP has come and gone and I am still here to tell the tale. What implications there are in such an event. NO longer guarded by the School District. NO longer told what to do by the School District.  NO more data taken to ensure the goals are being met. NO more sitting at that long table every year learning all about the ways in which he is limited, deficient, disabled. No more IDEA Law protecting him. It is both a relief and oh so scary.

This IEP was worth noting as it was different from all others. I never even looked down at those piles of white papers listing progress monitoring, SDI's, goals, and weaknesses. Willie's last IEP was a true celebration of him in all his glory. It was such a phenomenal 90 minutes that it counts as one of my best Willie days in 21 years.

At that long table in that conference room, my husband and I sat and were mesmerized by and serenaded with the narratives of the three people that over the past 3 years have lived with Willie, worked with Willie, taught Willie, and loved Willie. Their words were music to our ears. Phrases were thrown around such as "I have never seen such growth in such a short period of time in any student." One of Willie's teachers spoke of the moment she became captivated by him 4 years ago. The following quote is lifted right out of this IEP from Willie's houseparent: "When agitated, Willie will fabricate a complex verbal smoke screen (a veritable dense fog) which frequently disorients and flusters his adversary, especially when his adversary's first language is not English." Besides the obvious fact that this man has missed his calling as a writer, this sentence speaks to the depth and complex understanding of Willie. The emotional equanimity that is spoken about in the next sentence is the area Willie has grown in and continues to need improvement. But the phrase emotional equanimity, and all that implies, demonstrates the remarkable and meaningful program Willie has been a part of for the past 5 years.

As I have recounted this 90 minutes of joy to my friends, they have all said that is what all IEPs should be like. And as I have attended 14 others that were nothing like this, my hope for you is to have at least one celebratory IEP, even if it is the last.

Willie and Andreas, his Houseparent

Epic Family Gatherings: Raising A Son With Special Needs

To bring Willie to Noah's Bar Mitzvah or not to bring Willie to Noah's Bar Mitzvah? That is the million dollar question! And it is a loaded one.

Three years ago, Willie came along with us to Zack, Noah's brother's,  Bar Mitzvah. This involved a wonderful opportunity for Willie to bond with his four Aunts and four Uncles as well as his fourteen first cousins. They all adore him and he they. Willie was able to be included in our luscious extended family. He supported his cousin through the celebration of his Bar Mitzvah. He ate gourmet and traditional Jewish food. He swam in the hotel pool with his cousins. Willie had the opportunity to get dressed up and attend Synagogue and then a fun Bar Mitzvah party. If you asked Willie, he would say it was a great time. If you asked Willie if he wanted to attend Noah's Bar Mitzvah, he would most definitely have said "YES!"

But we did not ask Willie. And we did not bring Willie. And here is what I didn't mention that Willie didn't get to re-experience: The awful car-ride with normal fighting siblings that sent Willie over the edge. The "Scary Main Sanctuary" at the Synagogue that Willie felt unable to remain in, probably due to his auditory sensitivity. The extended fight Willie had with that six-year old cousin, on the other side of the family. The arguing over how much food Willie could eat. The arguing again over how much food Willie could eat. The meltdown Willie had at the party because it was just too loud and too long. The family fight we all had during Willie's meltdown at the party. The tension in the hotel room at night as we all tried to settle down to sleep. And I will stop now for this is just the beginning of the negative parts of that Bar Mitzvah three years ago.

And Noah's Bar Mitzvah weekend was plain fabulous. Sure there was sibling fighting, but not nuanced with the threat of Willie having a giant meltdown.  We never saw our kids as they were enveloped in "that cousin bliss." We were able to totally be present at the Synagogue, with our nephew's Bar Mitzvah journey, and the very long but fun party. We slept soundly in the hotel room. There was little stress.

However, and I haven't asked my husband if he felt this way,  I felt like a limb was missing the whole time. I missed Willie.  Moreover, I missed him interacting with his warm and loving and very accepting extended family. I can't help but think we acted selfishly by not including Willie. He will not be in the family photos. He didn't get the opportunity to make those kind of memories.

Work=Life: Raising A Son With Special Needs

I have noticed and remarked upon the fact that lots of Mommies of Special Needs Kiddos work in the field of Special Needs. It is a seamless extension to our lives with our children.  We are pre-occupied with, perseverate upon, these kiddos. For without our constant vigilance, who will advocate for them and make sure our children become their best selves?

Most times I find the connection between my role as Willie's Mom and my professional one, in the Autism Classroom I support, complementary, overlapping, and helpful for both worlds. Until yesterday, when I opened up my email and read Willie's Behavior Support Plan.  Then my acute understanding and implementation of such Behavior Plans sent me reeling. Somehow reading about the antecedent strategies to help Willie stop self-injurious and aggressive behaviors hurt too much yesterday. As I brainstormed these same antecedent strategies for one of my students, reading the same about my Willie was just too stomach turning.

It is still too raw for me to figure it out. I need time to process why I am so provoked. Just when I thought I was "uber" accepting of Willie's limitations, that familiar pain that comes from being smacked in the face by Willies limitations visits me yet again. I know that acknowledging that Willie needs a Behavior Plan at all is tough, as this is his first ever! Not that we haven't had intolerable behaviors at home and at school in the past.  And the ironic part of reading the plan is that these strategies will help him now AND as he transitions to his new community. I should be embracing the Behavior Plan. But I hate it today.

My role as A Special Educator and a Mommy of Willie is challenging today. "Willie Pain" has seeped into my professional life. All the lessons Willie has taught me are still present and crucial as I help others. My empathy for my students' parents is as strong as ever. My intuitive understanding of my students is deep and rich from years of living with Willie. But today I am mostly a hurting Mommy. Tomorrow will be easier, I hope.