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...

Willie's People: Raising A Son With Special Needs

When you lose a friend, grief stirs up more than you bargain for.  This certainly isn't a blog about grief, but as a Mom with a Special Needs son, I am all too familiar with Grief and all it's nuances. For no matter your child's disability, you, at some point, must grieve the loss of your typical child.

So my very good friend passed away 12 days ago.  It was not unexpected as she fought Stage 4 Breast Cancer for 12 long years. Her youngest daughter and my daughter are best friend.  Best friends since they were babies.  A recent Facebook post from my dear friend attested to this friendship, when she posted a darling photo of our girls hugging, and commented such: "These girls have been "cooing and drooling" on each other from birth! GREAT Besties for 13+ years!! So thankful for their love for each other!! Love me some "Heidi Hope"...what a lovely friendship God has supplied!"

As I grieve my friend, I recognize all the stages, phases, and feelings that come along with this terrible process. I focus on her husband and children's sorrow and needs and try to stay away from any focus on myself.  I try so valiantly to hold this special family up. But my own issues creep in, of course. And one unexpected feeling has been the loss of one of Willie's "people." For as he has grown-up, his support system seems to have gotten smaller and smaller.  His challenging behaviors have successfully alienated many family friends. Willie's development into an adult with Special Needs is not easy for most.  

But you my friend never left his side.  You believed in him and held him up through the years.  I never had to apologize for him when your daughter was at our house and Willie exploded.  You always wanted your kind daughter to tag along with mine as we visited Willie at his Special Needs communities. Your daughter mimicked you and saw these folks and my Willie as just people. People to be loved and to spend time with. I never had to feel embarrassed when Willie wouldn't look at you when you talked to him lovingly and patiently. When he still wouldn't look up or answer as you continued to have a Willie conversation with him.  As you laughed and even hugged him.  I never cringed when you spoke to Willie as it was always with respect towards him as a wonderful and whole human being. I will miss your enthusiasm, acceptance, and that sparkle in your eye as I shared with you another Willie story, for you always made me feel heard and understood. 

I will miss you my friend for so many reasons.  And again all things return to Willie in my life.  I will miss your unconditional love for Willie that you so naturally gave him and us throughout the years. Thank you for that rare gift that you graciously shared with our family. Good bye sweet girl and may all the Special Needs people you share heaven with surround you with that same kind of love and acceptance.