Happily Ticked Off — The Book, Part 1: Dedication and Intro

Here  is the dedication and the first part of the introduction from my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to her from you, too!

TOC

Dedication

This is for you, Mamas

When my son was diagnosed with Tourette Syndrome seven years ago, I encountered loads of disheartening information on the internet about tics, ADHD, OCD and disturbed children with behavior problems.

I found blogs full of victimhood stories and medications gone wrong.

I found a few helpful but ultimately dry informational books written from medical and nutritional view points on how to suppress tics through natural or pharmaceutical means.

What I didn’t encounter, however, was a book on humor, support and most importantly, hope.

So I wrote one.

This book is not just for mamas dealing with Tourette Syndrome. It’s a love letter for all you moms dealing with an unexpected diagnosis. It’s the book I wish someone had written for me when I was hopeless, angry, and feeling so very alone.

It’s my sincere hope that this book will serve as one giant hug for your fears. May it whisper into your heart, “You did not cause this disorder. You are strong enough to handle it. Your child is perfect despite some medical challenges. You are not alone. I am here. YOU CAN DO THIS.”

For all you mamas out there who are hanging by a thread, I’m asking you to tie a knot and hang on. Happily Ticked Off was written for you.

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The social stuff

One night on a recent vacation, I met a couple of other mothers and I was asked what kind of work I did. I told them about volunteering with Camp Twitch and Shout and working with Camp Twin Lakes in the summer … which I tend to babble on about these programs frequently.

As I described what type of programs are held at CTL, one of the moms opened up about her daughter being diagnosed with high functioning Asperger’s at the age of 18. She described how after high school her daughter had lost touch with all of her friends – I think she is in her early 20s now. She felt that her daughter had alienated any of the friends she did have because she has a habit of saying whatever comes to her mind – no filters … appropriate or inappropriate, sensitive or insensitive … her honesty and openness are never a challenge.

What I saw on this mothers face was a lot of pain and sadness … even though her family was terrific with her daughter … she had no friends.

Of course being a great 3 a.m. thinker … I don’t think I was very reassuring at the time. In trying to reassure her, I had opened up that my son was diagnosed with high functioning asperger’s also around the age of 10. My son has a few diagnoses … this is one of them.

I described an event that happened at home that makes us all smile when we think of it – this happened right around the time of his diagnosis. We were running around like our usual crazy selves getting ready to go somewhere. I was barking out my mommy orders before leaving.

I asked my son to get in the shower and at least wash his hair before we left. A few minutes later he walks in to our room … fully clothed and completely soaked … he just looked at us and said, “I think I forgot to do something first” … yes son … getting undressed before you get in to the shower might be a good idea?! But here it was … all we had asked him to do was wash his hair? My husband and I both looked at each other and just giggled … oh my goodness.

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“Tourette Syndrome: Coping With Difference” — Reflection

The following is the 6th and final part of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.
Read part 5 here.

Many times throughout this inquiry, I wanted to give up. I was overcome with emotion because we’re still new to Jacob’s diagnosis. Doing research is one thing; inquiring is another. I could research all day and crank out a paper full of facts about what Tourette Syndrome is.

If I had chosen to write about the specifics of having TS, I could have easily typed a hundred pages of facts. My paper would have definitely been so much easier to write, but it wouldn’t have made me see myself as the person I want to be.

This inquiry did something for me that nothing in my entire college education has done so far; this inquiry made me realize how I passionate I truly am about becoming a special education teacher. I wanted so badly to create an inquiry that would be able to explore the sides of Tourette Syndrome that I was the most unfamiliar with.

I, with all honesty, know that I did not meet my goal of finding that “magical” answer. There is no one answer to teaching Jacob to cope. I searched through several perspectives and not even my interviews proved to be “golden keys”. What I learned is that those things do not exist. Continue reading

“Tourette Syndrome: Coping With Difference” — Perspectives

The following is part 5 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.

Two women who shared their children’s stories with me told me that their husbands had not been diagnosed until their children had been diagnosed. Karen’s husband was 42 at diagnosis and Tanya’s husband was 38. I wondered about how both husbands dealt with this disorder growing up, not realizing that there was a name for their behaviors.

Karen didn’t have much of her husband’s history to share, but Tanya’s husband had been misdiagnosed since he was 4 years old. For many years he was treated for seizures until two of their five children were diagnosed with TS. Her two sons and her husband William were all diagnosed within just a few years of one another, with not only TS but Asperger’s as well (Tanya Lackey, personal communication, November 2012).

It was quite difficult for me to gain a better picture of what the historical implications were for the older individuals with Tourette. Lorenzo had been the only one to share his full story with me. Three other adults, much older than Lorenzo and in their 70s, were only willing to give me their symptoms and didn’t want to share much else. I imagine their stories were much more painful than the rest of the stories.

When someone is ridiculed for a condition that is beyond their control, it’s sad and unacceptable. When someone is ridiculed during a time that such conditions were treated as an atrocity and a “sickness”, it moves beyond sad…it’s deplorable.

The educational perspective is merely an extension of the historical perspective. Before TS was first introduced as a medical condition, what were the implications for students who displayed the symptoms and tics during instruction? What will the educational implications for Jacob be? Continue reading

“Tourette Syndrome: Coping With Difference” — History

The following is part 4 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.

My first interdisciplinary perspective is historical in premise but follows, not only the history of where TS originated, but the social aspects that have hindered upon the understanding of TS.

Martinello’s article The Case of the Carousel describes her inquiry into the Brackenridge Park carousel in San Antonio, Texas. Martinello begins her inquiry after one particular pony on the carousel caught her eye. She could tell by its appearance that it had not been a favorite pick. “I wondered about all those ponies, but especially this unwanted one.” (Martinello).

My own inquiry into TS had started from that one area of TS that had not seemed of particular interest in the information I had previously found. I have no doubt that individuals affected by TS have often wondered how they relate to one another, but I wondered how much research has been done by “outsiders” that has focused on the individual differences in demeanor, emotional state and coping skills.

Like Martinello, the books on the library shelf didn’t give me much of a head start. I knew that being an “outsider” myself, I would have to find others who will lead me into the right direction. Martinello was able to gain ground for her inquiry once she spoke to the operator of the carousel and was able to find out the company that made the carousel.

I hadn’t initially intended to go for the historical perspective, but in an individual by the name of Lorenzo changed my mind. Like Brad Cohen, Lorenzo had grown up not knowing that it was Tourette Syndrome that had inflicted him with those movements and sounds. He was in his 30s before he was officially diagnosed with Tourette Syndrome. Continue reading

Cancer provides good perspective for dealing with Tourette Syndrome

Ladies and gentlemen, we have had two weeks of nonstop excitement from birthday parties to sleepovers to Wii time to pool dates and, lo and behold, the tics are back!

Introducing, the squeaky gulp. It is happiest when interrupting Stink’s sentences at a rate of 20 times per minute, but it will make its appearance during quiet times, reading, chewing and teeth brushing.

While it is doing its best to unnerve me – and trust me – it’s doing a great job of it – I am hanging in there. I make no apologies for having my husband read bedtime stories to my little dude, wear ear plugs when needed, or just go for a walk (or 10) when I find myself losing it.

I refer to episodes like these as ”Silver Bullet Denied”, for while I had hoped that the Intuniv would just blast these suckers away all together, alas, such is not the case. It is what is.

God, grant me the serenity to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

And really, although I’m entitled to my pity party, I have so much to be grateful for. Just three hours earlier, my friend of 40 years asked me to visit her in the hospital. Continue reading