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.