Sometimes ignorance is a choice that has nothing to do with bliss

Me and my "normal" kid who happens to make odd sounds

Warner recently shared with me a conversation that he had with a person who posted a comment on our first Tourette’s interview. More often than not the comments are positive and supportive. However, there will always be ignorant people who just don’t get it despite our best efforts to educate others and encourage an attitude of acceptance.

This particular viewer questioned our decision to call Jacob “normal”, and proved to us that some people just aren’t worth engaging.

*Ignoramus: Why call him normal if he has a disorder?

warner13: I call my son Jacob normal because he IS normal. Yes, he has Tourette’s, but that does not define him. A lot of us have problems. Tourette’s is his. What is yours?

I think it’s important to recognize and appreciate that we are all different, and it’s these differences that make us who we are as a society and culture. Hate and intolerance are things we learn as adults so we have a lot to learn from our children.

Ignoramus: My problems are unimportant. I find it strange that you would consider him normal when his disorder keeps him from being just that.

We’re all a little different in our own ways, and I don’t think that anyone is normal. I have nothing against your son and I find it extremely offensive that you would associate my comment with hate and intolerance.

warner13: I find your comment about Jacob not being normal equally as offensive as you find my comment about those that hate or are intolerant. You are right about one thing. We are all different in our own ways, so why make the comment in the first place if you feel like no one is “normal”?

Ignoramus: My point is this: If you keep telling your son that his behavior is “normal” he’ll find himself in multiple situations where people aren’t so accepting, and when he ends up having one of his tics people will see him differently.

By telling him he is normal you are telling him he can act like everyone else, which is false. Your son needs to understand that.

warner13: We don’t tell Jacob that his tics are normal. He knows they aren’t. What we DO tell him is that everyone has challenges. His are more obvious than others because he has tics. You’re not qualified to talk on the subject of what my son needs. Maybe when you become a parent of a special needs child you’ll understand…or maybe not. Until then I encourage you to build kids up rather than attempt to tear them down. We teach Jacob to accept others how they are. Why can’t you?

Ignoramus: I accept him as much as any other person. You, on the other hand, are an idiot. Why can’t you understand what I’m trying to get across? The doctors must have fed you all this P.C. lingo, huh?

warner13: Disappointing. I was hoping you wouldn’t take the low road by name calling but I guess I should have expected it. Too bad you feel the way you do. I understand what you’ve been saying. I just don’t agree and think it’s easy to talk about things you know nothing about. Our goal for posting the video and for being active in the TS community is to educate and teach intolerance to people. Sometimes it works and sometimes not.

Ignoramus’ comments confuse me. Why can’t Jacob act normal? Should he go around acting as if he doesn’t fit in anywhere, therefore making him stand out even more? Clearly this viewer has issues of his own.

Why in the world would I choose to focus on those things that make Jacob different in a potentially uncomfortable way, rather than encourage him to live his life like every other 12 year old?

Sometimes ignorance is bliss, but sometimes it’s nothing more than self-inflicted stupidity.

*Name has been changed to protect the ignorant.

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Yoga + Tourette’s = A Powerful Lesson

photo credit: h.koppdelaney

I’m pleased to have this guest post from my friend Jennifer McIlvain.  I had the pleasure of meeting Jenny at last year’s Camp Twitch and Shout family weekend.  After reading this please pass it along to someone and spread the chain of awareness.

mantra:         a word or formula, chanted or sung  . . . as an incantation or prayer.

By this time of year, many of us have given up on our New Year’s resolutions.  Although getting in shape is a great notion, I suggest that we try to make the most of 2010  by resolving to accept diversity in our daily lives.

I am a person living with Tourette’s Syndrome (TS), a neurological condition that results in involuntary movements and vocalizations called tics. During the past few years, I’ve made an effort to educate others on the value of diversity. Earlier in the year I decided to venture out of my comfort zone and try yoga. I was quickly reminded of how much opportunity there is for others to embrace a tolerant attitude.

Members of my family have often spoken about the benefits of learning and practicing yoga. Before I made my appointment at a local yoga studio, I informed the owner about my situation. When they assured me that there wouldn’t be any problem, I began to look forward to the class. However, after taking a few classes, I received a call from the owners. They asked me not to attend group classes again because my tics were disruptive.

Of course I was upset – not just with the business owners who had insisted that I was welcome in the yoga class. But I was also somewhat upset with myself. I asked myself, “What could I have done differently so that I would not feel excluded — again?” In the end, I realized that I had done what I thought was right. I talked to the owners about Tourette’s in advance. I described my tics and explained TS in detail. They still welcomed me to the class.

Tourette’s is my constant companion and has taught me many lessons.  This experience is another lesson that I can honestly thank TS for teaching me. In hindsight, the business owners could’ve asked me more questions. I could’ve gone to meet them for a few minutes. No one really understands diversity until they experience it face-to-face.

I do not consider myself disabled.  Neither do my parents, my siblings, my husband, my son or anyone who knows me really well. I wake up every morning and try to embrace what the day has to offer – my tics are with me for the ride. However, that ride did not extend to a particular yoga studio.

Ultimately, I believe that it’s only when people take the time to educate themselves about TS that the pointing and staring will decrease. Whether a person vocalizes Tourette’s tics, grows a long beard due to religious reasons, or uses a wheelchair, he or she has probably been on the receiving end of a confused look or not-so-quiet whisper. There are alternative and more effective approaches to take – for individuals and for business owners.

Like any other type of self-improvement, keeping an open mind and educating yourself about the differences — and similarities — among others is rewarding in countless ways. I have hope for 2010. It’s only April.

A Hopeful Guide for Business Owners:
Here are five simple tips for business owners who may be approached by individuals with special needs.

1.   Please ask questions – lots of them. We don’t mind. We prefer that you ask us as many questions as possible rather than promising something that you can’t deliver. We can talk (face-to-face, preferably) for as long as needed until you are comfortable with the situation.

2.   Do a little research. Simple resources like wikipedia.org, offer plenty of easy-to-understand information. If you don’t do the research, ask someone to do it for you.

3.   Make sure that your staff is on board. Employees who smirk and stare can undermine your efforts at welcoming a  diverse base of customers.  It’s critical that employees understand and support a company’s efforts.

4.   Ask around. If necessary, offer a recommendation. Find out if there are others in your area who can accommodate individuals with special needs. If you are unable to help, become a resource. The word of mouth advertising you’ll receive will be worth it.

5.   Keep an open mind. Don’t assume that because you haven’t worked with someone “different” before, that you won’t ever be able to. Be creative with your programs and think of the possible solutions and benefits for all involved.

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He’s Not Broken

Me and my inspiration

Hello everyone. My name is Michelle and I’m addicted to trying to fix my son.

It’s been nearly 6 years since my son’s diagnosis with Tourette’s Syndrome. Five of those years I spent moving through a series of emotions that I now realize are very much like the 12 step program that groups like AA rely on. I realize now that I had an addiction that took me years to overcome.

Even before Jacob was diagnosed with TS, thanks to the powerful and sometimes destructive voice of the internet, I knew. I knew that Jacob was behaving in a way that fit the criteria for Tourette’s. I knew but I wouldn’t let myself believe it. I figured if I believed it then I was sealing his fate and condemning him to a life of never fitting in and being bullied, a life plagued with low self-esteem. I spent hours online searching and searching for something that would justify my denial. I was exhausted emotionally and mentally from spending so much energy on fixing Jacob.

When Jacob was diagnosed I went into immediate panic mode. Did I give this to him? Was it my fault?  What did I do wrong?  I hated myself for the future I had given him. With this thoughts reeling through my mind, I began to slowly disappear into my son’s TS, and it consumed my every waking, and sometimes sleeping, moment.  I searched for answers, cures, solutions – anything to take this away from him.  Anything to fix him.

We tried vitamin therapy and behavior management.  But nothing changed. Jacob still made funny noises. He still moved his body in odd ways. He still fit the criteria for Tourettes.

I became furious.  Furious at myself.  Furious at God.  Furious at parents who had kids who didn’t have Tourette’s. My anxiety fed Jacob’s anxiety and many days were spent in a very dark place within myself.  My anger and resentment were stealing my life with my son.  I was mad at the world and yet, still my son ticced.

I spent many nights bargaining with God.  If you take this away I will take whatever you give me.  Make me tic.  Make me suffer, but not my son.  I’d wake up hopeful, until I heard the snorting and I would crumble inside.  Another bargain denied. I begged for a miracle, and yet still my son ticced.

I began to withdraw from life.  I was so sad for my son.  But I was also sad for me, for what I had lost.  I had the child I always dreamed of, but he wasn’t the child I had expected.  And now, I lamented the son I would never have.  This made me even more depressed because certainly I was an awful mother for feeling like this.  I didn’t love my son any less at all, I just wasn’t prepared for this particular child.  I cried all the time.  And yet still my son ticced.

Then something started to happen.  I began to meet other people with similar kids.  I also met adults, successful adults with Tourette’s.  I began to accept things as they were and trust that this was the life I was meant to have.  I could continue to live in misery and defeat, or I could embrace this and make a difference.  I started really looking at Jacob and I noticed the darnedest thing.  His Tourette’s didn’t bother him.  It didn’t stop him from being a “normal” kid.  So why did it bother me?  Once I started paying attention to how life really was for Jacob and not how I perceived it to be, once I started accepting things the way they really were, my life changed and so did I.

I finally realized something that took me 5 years to learn – my son is not broken.

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Acceptance – It is what it is and what it should be

photo credit: SDCDeaCerte

I have learned that when I surrender to the reality of a particular situation – when I don’t continue to resist, but accept – a softening in my soul occurs. Suddenly I am able to open up and receive all the goodness and abundance available to me because acceptance brings with it so much relief and release.  – Sarah Ban Breathnach, from Simple Abundance

I’m on a personal journey these days – a journey to the center of myself and my bible is the book Simple Abundance.  And lately I have learned that acceptance is not the passive dance of giving up and letting someone or something else lead that I once imagined, but rather a very active tango of push and pull that results in a pretty amazing, dynamic performance.

Many times in my life I have gotten stuck in the toxic rut of regret and fear. But as I get older I see that there is nothing to be gained from this and everything to be lost.  I’m learning that those negative emotions do nothing but attract more of the same and I’m ready to break that debilitating cycle.

I’ve decided that I am going to accept things rather than fight them. I’m going to project positive rather than attract negative.  I’m going to live rather than exist.

In the past few weeks I’ve practiced this new attitude of mine and I am amazed at the difference it has already made in my life.  I feel happier.  I think it’s the idea that I don’t have to micromanage my life and try to control the big picture anymore.  That’s a lot of pressure.

I am happy to have found some help along the way in books that have fallen into my hands at the right time with the right message.  And some pretty amazing people have been there to ease my transition and help me along. None of these things happened by chance. The time was right.

If you want to join me on my journey, check out some of my resources and let me know what you think.  You might just uncover something in the process – the authentic you.

Simple Abundance Online – a website dedicated to topics such as gratitude, self-acceptance and harmony

Simple Abundance – the book – 366 essays on topics such as gratitude, self-acceptance and harmony

Unfinished Business – James Van Praagh – what the dead can teach us about life

Easier Than You Think – Richard Carlson – 39 small, simple adjustments for making positive changes in all aspects of your life

Neat Mom – Teaching you ways to keep life simple – a great blog about finding ways to simplify your life

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