HOLIDAY CHEER: Raising A Son With Special Needs

Below is part of an email I sent to the Directors of Willie's new program.  In the spirit of the holiday season, one of good cheer and honesty, I share a vulnerable slice of my Willie life. The names have been changed to protect the innocent...LOL:

"I want to share some thoughts and observations I have about Willie.

First of all, Willie seems completely oblivious of problems within his new home, including any issues with Jake or Matthew. (Jake is one of Willie's new housemates and Matthew is a staff member.)  As you know, Willie tends to perseverate when things are upsetting him, so his optimism about his new house is hopeful and genuine. Willie says that he and Matthew got into a fight: that is all. I want to be clear that neither my husband nor myself hold any grudges against Matthew.  We are completely aware that Willie can push people's buttons and we completely "forgive" Matthew for anything he may have said. My husband felt a warmth and positive authenticity yesterday from Matthew when he picked Willie up. Moreover, he described Willie to appear to be comfortable at the house, seemingly fine with Jake as well.  Which brings me to my next thought, which has to do with Willie and his "reputation."  I know you all have to take things that come out of Willie's mouth seriously, especially threats to others. But I fear that because of the one incident with his old housemate, Willie's reputation has been marred. I would offer that it is possible that we all need to ignore any threats Willie may make or did make towards Jake. I know this may be difficult but my guess is that this type of language will go away if ignored.

My other observation about Willie is that he seems calm and more even then even last time he was home.  I would suggest that Willie's new medicine is doing it's job.  However I am acutely aware of how Willie perceives most words and actions now based on the Behavior Plan Meeting we had. I have noticed that Willie hears my words as criticism and that if I first approach him with a loving or kind comment, he is much more responsive.  I guess I didn't ever realize or want to accept how poor Willie's self-esteem is and how distorted or paranoid his hearing and thinking can be.  

So I guess my message is that I feel hopeful about Willie's success in his new home, despite the issues that have arisen.  In the spirit of infectious positivity, I encourage you all to do the same. For as we know, Willie feels our vibes more then we know."

The Death Penalty: Raising A Son With Special Needs

I don't normally have a thought that includes both the Death Penalty as well as my son Willie. But this piece came on NPR about whether or not those with Intellectual Disabilities could be eligible for the death penalty, and Willie immediately popped into my head. A sad indictment on his current state. This issue is being heard before the Supreme Court currently and is really about how to define Intellectual Disabilities, by state or federally.  Read more here in this USA Today article about the current controversy in Texas. But what caught my attention was the statement about the high or borderline individuals with Intellectual Disabilities, those with IQ's in the 70's. And I immediately knew that Willie is considered high, for so many reasons, among them his eloquent ability to speak and interact with others, as well as his strong reading skills. And the idea that those with Special Needs may not be responsible for killing someone caught hold in my heart and thoughts and hasn't yet let me go.

If you read my blog regularly, you know that Willie is in a dark place.  Read this post to catch up on his latest struggles that unfortunately include harming another individual:  http://whoishetoday.blogspot.com/2016/11/willie-trumps-all-raising-son-with.html
We have been considering how responsible Willie is for all his actions as of late.  For we thought we had all the supports in place, the social stories, the parent check-ins, the prompts, the extra staff, etc, yet Willie still charged his housemate. I realize now that we can talk to Willie till he is blue in the face, and sometimes it just doesn't matter. Willie said he just couldn't take living with him anymore and he just snapped.

This is the type of statement I imagine someone with Intellectual Disabilities might say, after they killed someone.

What I wonder about Willie is if he is not at fault for hurting his housemate, whom he despised, pushed his buttons, and clearly bullied him, then where do we go? For if Willie cannot be held to a standard of personal responsibility, how can we help him, prevent this from happening in the future, and keep him safe? And if God forbid, he ever truly harmed another person, what would happen then? For if Willie is not accountable for his actions, who is? The Brain Damage? And if so, can we give it the Death Penalty?

Ambivalence: Raising A Son With Special Needs

Willie just left yet again. He was home with us for 14 out of the last 18 nights. It is a similar cycle every time we do it. The yearning for him to go. The desire to get your regular life back. The multiple burdens that are uniquely Willie, lifted.  And then he goes. The ambivalence sets in immediately.

Is he OK? How does he like his new bedroom? How hard was it to get him to take that shower? How bad was his mood when it was time to get up at 8 AM, as opposed to no schedule at all? The dread that he is coming home again for the holidays. The yearning when you watch the special needs adult working out at the Y.  The wondering if he is at his local Y doing the same? The relief that you don't need to provide those 3 gourmet and hearty meals for him every single day. You can unhide the candy jar. You can finally attend to your 13 year old's need to have more of your attention. You scour his bedroom. You get it ready for the next time. The dog is just so sad that Willie is gone. And you tell her, he will be back soon, with joy in your heart. The mixed emotions are overwhelming.

 I am left with the image of my 24 year old boy-man, becoming more and more disabled as he ages, while simultaneously becoming more and more independent. Perhaps I am full of ambivalence because that is what Willie is as well.  And as my husband says, it is much harder for him. It must be. Poor guy.

Willie trumps All: Raising A Son With Special Needs

Our sweet Willie is in trouble. He crossed that invisible line. He has now harmed another individual. He has a new history: one marred with violence. Sure, there was no real harm done. No hospitalizations. No charges pressed. But it is a scary new world we have entered in with him. One with real possibilities of very dire scenarios one only has nightmares about. And of course it doesn't matter that the other individual he pushed was pressing his buttons, even bullying him.  And it doesn't even count that Willie has Neurological Disabilities. The shove, the charge, the head-butt, the offense, that is all that really matters now.

My friend explained it perfectly when she said: Things are different now. Much more serious. For although there is a low probability of such violence against others in the future, the consequences are quite high.

So our life comes to a halt. Everything else is pushed aside. The Early Decision College Application due tomorrow. The sick 13 year old who stayed home from school today. The relative's Hip Replacement Surgery. The jobs. The regular "everydayness" that is oh so sweet. Except when it is smashed to bits with this new living nightmare.

Willie has trumped us all, as he has done for the past 24 years. And unfortunately, as he celebrates his Birthday today, he even trumps himself.

Friendships: Adults with Special Needs: Raising A Son With Special Needs

If you are like most parents of those with Special Needs, friendships are a hot topic, a source of pain, an overarching goal, a moving target, the Million Dollar Question. Instead of describing Willie's long history of friendships, let me launch into a rather uplifting story of such.

Willie and Will hated each other when they first met, back when they were 16 and 17, respectively. Who knows why. But they had to live in the same house, which was trouble. Willie's siblings, after meeting this infamous Will, were so impressed that there was actually another person who had Special Needs who was like their brother.  It's true, they were both handsome, well spoken, engaging, interested/obsessed with many topics,with unique senses of fashion,but they still butted heads.

Flash forward 3 years, and there these 2 Williams were again, finding themselves as roommates in the Farmhouse. We all doubted yet held our breathes with hope. It was almost magic.  For somehow in the quiet wee hours of the morning, when they were supposed to be asleep, these 2 wonderful young men, wove each other into one another's hearts. The amazing camaraderie that evolved from then on would take your breath away. Will, an artist, would continually create objects of art for Willie.  And Willie, with his gift of language, would support and validate Will.  Willie truly saw Will. It was every mother's dream come true.

And then Will had to move away.  His funding was up as he turned 21, and could no longer be at The Camphill Special School. The Williams were sad, but of course you could not see their sorrow, as both of the ways these young men showed emotion was irregular. But the boxes started coming from Will to Willie through the mail.  Trinkets he found, those he created, sent to Willie over the miles. Willie, unable to reciprocate in kind, said very little. But he would talk about Will at times with a longing and melancholy in his voice. They spoke on the phone sometimes too and that was quite a conversation to observe.  Both of them trying so hard to connect, trying hard to find that place of intimacy once again.

Recently, the idea of a visit out to see Will in California has blossomed.  Both boys, in their ways, are super excited. Now it's up to us parents to facilitate such a reunion. Not so easy, as Willie can't just jump on a plane and fly out to the West Coast. And so even though Willie is almost 24, I am beginning another journey advocating to help 2 good friends see each other again. For friendships between Special Needs Adults takes a director. Out come my batons!!

Food and Letting Your Child Grow Up: Raising A Son with Special Needs

When I called Willie this afternoon, Daniel said he was out to eat with Miles. As I have discussed in earlier posts, Willie and food are a hot issue. Willie loves to eat. He especially loves to go out to eat. This can be a contentious issue, as going out to eat presents more unhealthy food choices then eating at home. When Willie is home, I try to limit how much he gets food, either to-go or at a restaurant. If Willie had his druthers, he would eat all 3 meals out every day. And subsequently weigh 300 pounds, at least that is my fear.

Willie has recently moved to a new program where his rights as an individual are especially valued and emphasized. Going out to eat at a restaurant appears to be a more available option then in the past places he has lived.

A good friend of mine who works with Disabled adults and I chatted today about this very issue, as we hiked along the trail this beautiful Fall morning. She explained that one of the Disabled individuals she supports had a major breakdown when she wanted to grab a burger for dinner from the restaurant down the street, but was denied that right. They were serving soup at her home that evening. My friend suggested that she should have been allowed to get that burger, as after all, she is 45 years old, Disabled or not. This scenario developed into a crises, as her Residential Manager dug her heels in and pushed this woman to the edge.

This story made me truly ponder Willie and his choices and rights. I want to control Willie's food intake and preferences, as he tends to make poor ones. But truth is, he is almost 24 years old. And would I actually tell his new program that he is eating out too much? Will I try to micro-manage Willie's caloric intake from 90 miles away? Or will I hear my friend's message and let him design his own world without my very controlling instincts? Will I realize that Willie is an adult and gets to create his own life, which includes his desire to frequently eat out? I guess that is truly my only option, to let go and let him grow up as he wishes. Disabled or not, Willie is an adult now. I must let him grow, evolve, and initiate his own routines. And although it goes against all my inclinations to allow Willie to make his own choices, especially when it comes to food, I need to bud out. This is every parents' task as their children become adults. Disabled or not.

The Loss That Keeps On Giving: Raising A Son With Special Needs

Having our child with Special Needs be the oldest, the first born, creates a certain set of circumstances that haunt me. If you google the personality of the eldest child, you will find qualities such as high achievers, perfectionists, and responsible. Anecdotally, I have observed oldest kids to be the leaders in the family, those that set the tone for the sibling relationships. Moreover, they tend to take a care-taking role over the younger Sibs, not always willingly.

I try hard not to focus on how different Willie is from the typical oldest child. How he has set the tense atmosphere in our family, but it is not the one I had hoped for, imagined, or certainly ever wanted. Most days, I try to embrace the joys that Willie has brought us including wonderful caregivers, other Special Needs peers, and a whole new philosophy of seeing the world. I even work in the field of Special Needs so I can make "lemonade out of lemons," so to speak.

But Meningitis stole my oldest child. Instead of responsible, Willie is eternally dependent and sometimes powerless. Instead of high achieving, Willie is quite limited in those conventional success abilities. Instead of being a perfectionist, Willie is just plain frustrated at his incompetencies. I try hard to bury and ignore this type of loss, as it is especially painful to imagine what Willie might have been like as the eldest child.

The thing about loss though is it finds you even when you are hiding and have your guard down. And it gave me a good punch in my tummy just the other morning.  I am still reeling.

I am lucky and blessed to have a large extended family and was recently attending a Bat Mitzvah. My 13 year old cousin was beaming as she led a beautiful service. The luncheon afterward was just as happy, for a Bat Mitzvah is a joyful occasion. My cousins and I were talking about our children. This particular family has the same exact birth order and age configuration as we do, 3 boys and then a girl at the end. Those girls are both 13 and are handfuls, as most 13 year olds are. And as we were commiserating, my cousin explained that when she is just "done" parenting her little contrary teen, she hands her over to her eldest son, who happens to be living at home post college-graduation. And he swoops in and diffuses the situation, helping with homework or the fashion crises of the moment. For he is the eldest child.

Down I went. My soul was knocked over with my loss. I continued to smile and talk but inside I was one imploding cyclone of pain.  If only Willie could ever help out with our daughter.  If only Willie didn't create the stress that he does in our family. If only my 13 year old daughter didn't have to be Willie's caretaker. If only Willie had never had meningitis in the first place. Oh what a different family we would be.  Seems to be that this loss is the "gift" that keeps on giving.

Man's Best Friend: Raising A Son With Special Needs

There is a cliche in the Disability Community that all people with Disabilities love animals. In Willie's case, it is true. He always has loved animals and has quite an encyclopedic knowledge of them, from Armadillos to the Giant Squid.

Lucky for Willie, we are pet people. We have always had dogs and cats. Willie still mourns the death of our canines, Luck and Asha, for he likes to ponder the dark side. Our latest dog, Lana, however is his all time favorite. She just happens to be super connected to humans. Willie is drawn to her, just like the cliche infers. Lana calms and soothes Willie, she keeps him company constantly, and they are truly best buds.  When Willie is home, Lana likes to spend her time, in Willie's room, preferably with him in his twin size bed!

Willie was home for the whole month of August. Lana and Willie bonded even more then ever, if that is possible. As Willie was getting ready to move into yet another new house, he asked if Lana could come live with him. It was sweet.

When I spoke to Willie on the phone last night, he sounded glum. He told me he missed home, which breaks my heart. Then he said he missed Lana. I felt even worse.  For I think I know that Willie does best in his community away from us.  I hope that Willie has the broader opportunities to grow and evolve away from us at Soltane Bridges.  I usually know that Willie is supposed to grow up and move away from us, as all our other children are in the process of doing. But from that tiny glimpse into his heart, as he was truly missing Lana, I doubted all my assumptions.

Later that evening as my heart was hurting, wondering if our choices for Willie were good ones, I glanced Lana laying in the hall, looking as sad as ever.  She truly misses Willie as much as he misses her.  Maybe she should go live with Willie? Or he should live here at home with his "Best Friend" Lana?

Mucous Paintings: Raising A Son With Special Needs

There are so many dirty little secrets we parents of Special Needs people do not talk about.  Frankly, I am a bit tired and worn down that some of my loved ones wonder why I get so sad about Willie, why the burden of caring for him becomes so daunting at times. So today I am going to reveal one of those nasty secrets so maybe others can get a small glimpse into why I don't feel so grateful that Willie is as awesome as he truly is and maybe why I am so grumpy these days.  My hope then is to make those other parents in my club not feel so alone and ashamed. And of course to help those non-Special Needs people out there to be a tad more empathic.

The topic today is Mucous Paintings.  We named Willie's masterpieces this years ago.  It is rather disgusting truthfully.  But Willie literally takes his mucous and smears it on the car window, the house window, or lately his bedroom wall.  You may wonder why after 2 decades of Mucous Paintings, we haven't nipped this one in the bud. Well, it's just not that easy. Kleenex available doesn't stop them. Verbal prompts do no good. Social stories to no avail. And honestly Willie's other nasty behaviors are much worse so I tell myself, hey what is so bad about Mucous Paintings?

Last night I was cleaning Willie's mucous from his walls.  I know, it is disgusting! And I thought to myself, I have finally found the perfect technique.  Because as you most likely cannot imagine, mucous is very hard to remove.  As I sat there with my the scrubby side of my sponge, my paper towels, the butter knife and some soap, I just couldn't get it out of my head that I so needed to tell someone, anyone, that I knew the perfect solution for cleaning Mucous Paintings. It was as if my brain had created a jingle for a commercial on TV.  Then it dawned on me as I angrily scrubbed, that this issue isn't talked about, so clearly there was no audience on TV for my technique.  And then my mind went to all the other secrets we keep as parents of Special Needs children. And then I realized that those secrets just get more humiliating, uglier, more embarrassing and super more inappropriate as your Special Needs child grows into a Special Needs adult.

I wanted to cry. But I can't right now, for sometimes I am just too shut down.  So I scrubbed and scrubbed and got Willie's wall sparkling.  I stuffed my secret cleaning tip back into that hidden file in my brain.  Except now I share it here.  And I am mortified to share this story but am too compelled not to.

My wish is that we parents would share our secrets like Willie's Mucous Paintings, as it eases some of the pain. Maybe we could make an Infomercial at least? Or chuckle?

More Onions Please!: Raising A Son With Special Needs

Willie loves to eat.

I've noticed almost all people with Special Needs have a "thing" about food. It makes sense, as having a Disability implies a lack of control over some part of your life. So to turn towards food, a daily and necessary need, as something to control, is a natural consequence.  It is a battleground we parents know all too well.

When we were out to dinner the other night, Willie ordered a Cheeseburger, his favorite.  After the Waiter brought our food, Willie, very politely, asked for a side of mayonnaise.  This is typical, for Willie was dipping his pancakes in Green Goddess salad dressing since he was a mere toddler.  However, after the Waiter left, Willie then decided he needed onions on that Cheeseburger too.  At the time, we told Willie "NO," he couldn't then ask the Waiter for just another thing.  Willie argued. But when the Waiter came back, he said: "Anything else I can get for you all?" It was Willie who quickly replied: "No, but thank you very much."

Victory!  At least that it what I thought at the time.  In the past, Willie would have not been able to let it go.  Several bad outcomes could have happened regarding these onions.  We've seen all variations of meltdowns around getting more or the right food.  But this time, Willie complied. It felt glorious. And I knew I'd blog about this.

But when I sat down to write about Willie's self-control regarding the onions, I realized I was wrong. Willie, who can't be like his younger brother, who was sitting at the table, and have his same type of freedom that comes with his type of adult responsibility, had every right to get those onions.  And seriously, it is the Waiter's job "to wait on" the customers, even if they may have a Disability, and not think of all the extras they may need for their hamburger all at once.  Who am I to take that away from Willie?

One of the lessons Willie is continually teaching me is to let him grow up, to be an adult, to make his own choices.  I struggle with the these concepts because, you know, Willie has Special Needs! But as I have come to realize, it is exactly because of his Disability that Willie should be encouraged to ask for and get those onions.

That New Meningitis Vaccine: Raising A Son With Special Needs

They didn't think it was Meningitis. For Meningitis is so rare. Plus he already had a Seizure Disorder so that's what this was. He just lay there in the hospital bed becoming more and more non-responsive. Finally, my Mother-In-Law Doctor pulled the million dollar diagnoses out of the bag and suggested perhaps he had Bacterial Meningitis.  But by the time they got him into the procedure room to do a spinal tap, the test for Meningitis, he was falling into septic shock.  They called us into said room to say goodbye while they continued the procedure. I looked down on myself sitting there, knees pulled into my chest, shaking, while my little sweet 2 year old son slipped away.

And that type of drama continued for another week as that fighter son of ours lay in a coma for over 7 days. No one dared speak the words "critical condition," but we never wanted to leave his side in case...I told myself then, it was in case he woke up.  But it was equally for the other scenario...in case he died.

We are all lucky and blessed for he, our Willie,  lived. He is 23 now.  I write this blog about him. He is both my inspiration and my bondage.  For Willie developed profound Special Needs from his bout with Bacterial Meningitis.  Those Special Needs mean he will never drive, marry, or have children. He also cannot be left alone in public for he could either go with a stranger, get hit by a car, or do something socially disastrous.  Willie just stopped wetting the bed at the age of 23. He cannot do any simple math. He can barely write. His dream is to be an electric guitar musician, like Slash from Guns and Roses. Meningitis took that dream away and so many others.

Read my Blog for all of the most spectacular, fabulous traits and gifts Willie has brought our family. But when my second son was born, the Meningitis Vaccine was new, and you can bet I was first in line.  Just the other day at the Pediatricians' office, I asked if my 13 year old could get the new Meningitis Vaccine and unfortunately she has to wait until she is 16.

Get your children vaccinated. The new Meningitis vaccine is a gift. Information about that Vaccine can be found here:  http://www.meningitis.org/menb-vaccine. For Willie is one of the lucky ones. He survived Meningitis.  Most do not.

That Leather Jacket: Raising A Son With Special Needs

Willie has been mad, sad, frustrated, difficult to be around, hard to help, worrisome, and I could go on.  It's been a couple years now like this. But he is coming out if it.  Just this week, he was happy, light, fun, pleasant, easy to talk to, a pleasure to be with. This is a welcome change.

As he walked into Rockrose House in that stunning new, black, leather jacket, I could feel his lightness. I know that jacket isn't why he is happier. But it sure does represent that beacon of hope we are always on the lookout for.

If you read my blog regularly, you know that Willie loves costumes.  They help him define himself. They help him come to accept his many faceted moods and behaviors.  They are almost like a shield or a blanket that protects that tender little boy that is still so prominent inside our Willie.

Throughout the years, we have had to help Willie find socially acceptable costumes.  Truth is that a 190 pound, 6 foot tall man/boy walking around in a Batman costume is just too scary for today's world.  But a leather jacket, with all the frills, is OK.

Willie has been talking about this leather jacket for years.  But because he is more even and patient now, he actually could help me pick it out on the many, many Internet sites we scoured last time he was home.  In the past, his irritability would have prevented him from even being able to sit with me through this process.  But I pushed him, as I knew I could, to help me find the one that represented the right image of himself.  It took a while; over 20 minutes.  And when we found the one he agreed to, I could tell it would be important.

So the awesome leather jacket came to him through the mail.  And I heard he was liking and wearing it.  But when he walked through that door, I wasn't expecting that. There Willie stood, with a very cool leather jacket on, with some faded jeans, and he just was happy.  You could feel it across the room.  And he stayed that way for the next 3 hours of our time together.  I savored every minute as I wafted the fabulous new leather smell coming from my son.

Leather pants next on the agenda...

Hope: Raising A Son With Special Needs

I absolutely hate when people say "Oh yeah, my son does that too." Or "yup, all kids have special needs of some sort or another." Or another common response that rubs me the wrong way is "I know exactly what you're talking about." For those people are talking about their typical children. And throughout my life I have come to know that Willie and those typical children are far, far apart. I know I am right, as I have three other children and the challenges that they face although real, sometimes quite difficult, and important, are nothing like the ones that Willie faces.

Yesterday I was talking to Willie's psychiatrist. Willie is doing badly right now with daily behavioral and emotional outbursts. We are worried about him. My monthly visits with his psychiatrist are much-needed.

Halfway through the session, the psychiatrist said one of those comments that I absolutely hate. But somehow, in the context, and how he said it, made all the difference. We were brainstorming ideas of how to help Willie feel happier in life. This psychiatrist stopped me and said: "Willie is going through a developmental stage. The issues he is struggling with are quite similar to other 23-year-olds. He is wondering who he is? Separating from you all, his family. He is questioning what his role in life is? What he is to do with himself?" Surprising myself, I breathed a large sigh of relief and felt a beacon of hope I haven't known for quite some time.

For I am one of those people who compare my son Willie to other young adults regularly. Those with special needs. Those without special needs. And to hear that he is in the middle of all the angst that other 23-year-olds are struggling with, from the psychiatrist who talks to 23-year-olds daily, felt like things would get better one day. Sure the psychiatrist was referring to typical or non developmentally-disabled young adults. And believe me, I am well aware that Willie has some giant limitations. But somehow, comparing Willie to that typical young adult gave me all the hope I needed.

Nothing To Say: Raising A Son With Special needs

Willie is struggling currently.  He reports that he doesn't like himself. The other day he told me that he fears he will become his animalistic self again.  Furthermore, he wonders why he is feeling so sad, angry, confused.

These feelings made for a difficult and depressing 2 weeks during the Holidays.  Willie's feelings manifested themselves into an angry and oppositional young man.  He refused to get out of bed most days and didn't want to participate in much during this time.  

We are seeking help and trying to help our sweet, troubled young man. Visits and communications with his Psychiatrist to adjust meds, conversations and brain storming with his house parents to get him up and moving to increase endorphins and health, and lots and lots of worry.  And a muteness. 

SO I have nothing to say, hence my blog is empty these days.  When I am in one of these "Willie crises," I cannot talk about it. Ask any of my friends and family.  When we have these troubling Willie periods, I retreat and am silent. It is a predictable cycle.  

Here's to hoping I can write a fun and happy or at least an expressive and tantalizing BLOG entry soon...