A Mother's Journey to Acceptance
The story of how one mother learns that her special needs child, who has Tourette's Syndrome and Obsessive Compulsive Disorder, is the special child she didn't know she needed.
Ended
Something happens to a mother when her child is diagnosed with something. It's like she becomes the pilot of an airplane that is headed for the Bermuda Triangle - a strange and unknown dimension that thrusts her into this whole chaotic world devoid of normalcy - whatever that is. I don't care what anyone tells you, when you find out your child has a condition or disorder, it's devastating. It changes things inside of you.
When Jacob was diagnosed with Tourette's Syndrome (TS), I went into immediate panic mode. Did I give this to him? Was it my fault? What did I do wrong? With these thoughts reeling through my mind, I began to slowly disappear into my son's diagnosis, and it consumed my every waking, and sometimes sleeping moments. I searched for answers, cures, solutions - anything to take this away from him. Anything to fix him.
Then something started to happen. I began to really look at Jacob and I noticed that his TS didn't bother him. It didn't stop him from being a "normal" kid. Even Nicholas, our youngest, didn't seem to notice Jacob was different. So why did it bother me so much? 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, life for Jacob, and for all of us began to change.
He's Not Broken: A Mother's Journey to Acceptance provides parents of children with special needs validation for the emotions that come flooding in when you realize your child is "different". It offers encouragement and proves that one can rise above challenging diagnoses, and use the full force of emotions to make a difference.
Ultimately, He's Not Broken is a book of hope - a book about the spiritual and emotional journey with my son. It's a book about realizing that sometimes you don't get the child you expected and prepared for. But in my case, and I suspect many others, my special needs child turned out to be the special child I didn't know I needed.
He's Not Broken is a book about a remarkable child who believed in himself and who taught me to believe so much more than I ever thought possible.
He's Not Broken is a book for any parent who has felt challenged in the role of caregiver. It's a book for any parent who worries that she has made a wrong decision as to what is best for her child. It's a book for any parent who has ever worried that her child would never fit it. It's a book for any parent who has ever felt that her child is broken in some way.
Simply put, He's Not Broken is a book for parents.
Foreword by Brad Cohen
Chapter 1: Jacob is born.
Chapter 2: Realizing that Jacob is very gifted and needs constant stimulation, we decide to homeschool.
Chapter 3: Jacob begins to exhibit odd behaviors such as sensitivity to sounds and smells, and an aversion to getting his hands dirty.
Chapter 4: My intuition is throwing up red flags, and I am terrified by what it's telling me.
Chapter 5: Jacob begins to feel overwhelmingly sad, and starts to worry about death so we seek the help of a psychiatrist who diagnoses him with Tourette's Syndrome.
Chapter 6: Jacob's tics worsen. I try a vitamin regimen for kids with TS.
Chapter 7: I'm pregnant, and the stress takes its toll on Jacob. One of his new compulsions lands him in the ER.
Chapter 8: Jacob is diagnosed with anxiety, depression, and OCD, and put on medication. I I feel like I've failed him.
Chapter 9: Jacob's defiance and worsening rages, make me question if our family will ever by "normal". We enroll Jacob in school.
Chapter 10: A Tourette's Association print-ad features jazz musician and TS advocate, Michael Wolff, who just so happens to be the father of Nat and Alex from Jacob's favorite show The Naked Brother's Band. I reach out to Michael to thank him for raising awareness, and am shocked to receive an email inviting us to NYC.
Chapter 11: Our flight to NYC is cancelled, setting into motion one of Jacob's biggest meltdowns ever.
Chapter 12: Needing more of an academic challenge, we enroll Jacob into a new school. Things do not go well.
Chapter 13: Jacob and I go to the movies, and he is the target of bullying. Jacob handles it much better than I do.
Chapter 14: Front of the Class, the movie based on Brad Cohen's book, airs. I reach out to Brad who visits us and tells us about a new camp for kids with TS.
Chapter 15: Jacob is ticcing thousands of times a day. I struggle with accepting that I cannot help him.
Chapter 16: Jacob attends Camp Twitch and Shout, and it is a game-changer for me.
Epilogue: Where are we now?
The primary market for He's Not Broken is parents of children with special needs. The following statistics show the continued growth of this market, and the escalating numbers for
Autism Spectrum Disorders
Children with Disabilities
Tourette's Syndrome (TS)
While He's Not Broken is not specifically written for mothers, it is important to note that 68% of book buyers are women, according to Publisher's Weekly Further statistics show that women are emotional readers with non-fiction books representing 36% of what they are reading.
Lauren Elkin (July 2018, Why All the Books on Motherhood?) says, "It seems to me that all of this looking to manuals will not help us with what we really want to know. We want to know not only how to do it...but to enter the intimacy of another mind that has felt the same hopes and fears as ours."
Mary Karr, three-time memoirist, states in The Art of Memoir (2016), "Memoir as a genre has entered its heyday, with a massive surge in readership in the past 20 years."
Simply put, He's Not Broken will provide comfort and validation - two things most parents seek.
Social Media Numbers
To further promote the book I will approach the following markets, many of whom have already expressed an interest in the book:
I will also be promoting it on my website, creating a solid email list, and filming a book trailer.
In addition, I plan on attending the National Tourette's Syndrome Conference in 2020 - "The National Conference offers sessions to hundreds of adults and teens with TS, parents, and professionals on a variety of topics grouped by track."
I have already submitted my application to be a presenter.
Finally, I plan on applying to do a TedTalk, both locally and nationally.
I will continue to seek out other speaking opportunities.
Tourette's Memoirs written by parents:
Other TS Books:
Front of the Class: How TS Made Me the Teacher I Never Had by Brad Cohen and Lisa Wysocky St. Martin's Griffin 2008 "Brad Cohen's story is not one of self-pity. His unwavering determination and fiercely positive attitude conquered the difficulties he faced in school, in college, and while job hunting." Amazon
Getting Personal: Stories of Life with TS by Michael G. DeFilippo 2nd Chance Publishing 2002. Twenty-two stories depicting life with Tourette syndrome.
He's Not Broken stands out among these books because of it's raw honesty, and its ultimate message of hope.
An active voice in the TS community, Ginger is known for her authenticity. She has offered support to others through videos, interviews and published articles.
250 copies • Completed manuscript.
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First two chapters
Dear Author,
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After our visit with Dr. Kelly, not much changed. Jacob still had his habits, but now we called them tics. Now we understood that he couldn't help it, so we began to work on our level of patience with him. Some days I had the patience of Job, while other days I was ready to fill the car up and drive as far away as I could. Feeling that way hurt. It went against everything I believed a mother should be. And yet here I was feeling like I had been cheated. I didn’t ask for this.
Most days I walked around the house—the house that seemed to grow smaller and smaller each day with Warner working at home and us homeschooling—with my fists clenched and my teeth locked together in an effort to prevent myself from screaming, "I CAN"T TAKE THIS ANYMORE! THIS IS NOT WHAT I EXPECTED!" And then the guilt that those thoughts even crossed my mind, hit me like a punch in the stomach. If Jacob could hear my thoughts, he would feel terrible. He would think I was mad at him. But I wasn't mad at him, I was mad at TS. Tourette’s had turned Jacob into a walking time bomb—tic, tic, tic. But I was the one exploding.
Outings became a nightmare. It felt like a spotlight followed us wherever we went. I hovered protectively, rarely letting Jacob out of my sight, especially on days when his tics were more obvious.
I constantly scanned the places we went trying my best to avoid crowded, or quiet stores. People looked at Jacob as if he was a freak as he snorted, and stretched his jaw. I even noticed some parents pulling their children closer to them, as if he was contagious. There were others who looked at him with pity. What I didn’t realize at the time was that I had begun looking at him the same way.
One thing I learned that year was that an anxious frustrated mother, plus an anxious frustrated child mixed with a work at home dad made for a very volatile homeschool environment. On an average day, Warner got up, drank his coffee and retreated to his studio. I got up, attempted to have a cup of coffee without forgetting where I put it, and having to reheat it five times, while I got Jacob ready for the day. Then we went to the kitchen table to begin school.
Whether it was a lack of discipline, or yet another TS by-product, I wasn’t sure, but Jacob’s attitude started to decline and most of our homeschool days were spent arguing. One of our biggest arguments revolved around his poor handwriting. For him, writing was a very tedious, frustrating process. I learned later that dysgraphia—a condition that causes trouble with written expression—was yet another tag-a-long condition of TS. It wasn’t that he was being lazy or careless, he had genuine difficulties that made writing a very trying process.
"Jacob, your 'm's' look great and your letters are just the right size, but I can't read this word." I always tried to preface any corrections that needed to be made by pointing out the things that were strong about his work.
"I just need you to erase it and rewrite that one little word, Jacob. It’s no big deal."
He pushed his paper across the table and threw his pencil down. "I'm stupid. You think I'm stupid, don't you?"
"Jacob, it's just one word. The rest looks..." Before I could finish my sentence Jacob started to hit his head on the table. "What are you doing? Stop it, you're going to hurt yourself."
"I don't care if I hurt myself. I deserve it because I'm stupid."
In order to avoid more of these tantrums. I decided that maybe a change of scenery and a bigger piece of paper would help Jacob. So we moved our handwriting and math exercises out to the driveway where I would write his math problems in chalk on the driveway. Jacob would ride his scooter up and down the driveway, chalk in hand, pausing here and there to bend down and write his answer.
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But the good days never seemed to last for very long. The tension was still there and I was beginning to feel like we weren't getting enough school work accomplished because of Jacob's increasing anxiety.
One rainy day he was practicing his writing at the kitchen table when I noticed his hand shaking. He stared down at the pencil in his right hand, his left hand pinned his wrist to the table. Thinking he was just goofing off, I said, “Come on Jacob, get to work. The longer it takes you, the less time you have to play.”
“I want to stick the pencil in my eye. I can’t do that, can I?” His words were measured and spoken in a low, monotone voice. The absence of emotion was what scared me most. He kept his gaze on the tip of the pencil the entire time.
I lost my grip on the bowl I was washing and it splashed into the water sending a wave of suds all over my shirt. Never taking my eyes off of him, I calmly walked over, took the pencil out of his hand and threw it in the garbage can. I pulled him to me as I whispered, “No more pencils, buddy. Okay? No more pencils.” I stroked his thick hair. “It’s going to be okay.” I had to force the words out because I wasn’t entirely sure I was telling him the truth.
After that we stopped with handwriting for awhile. I was stumped once again. I began to think that his mental issues were bigger than I thought, but I still wasn't ready for us to consider medicine. I could still get this thing under control, I thought.
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I was very excited about our upcoming trip to NYC because Jacob had never flown before, and I was going to have the chance to share my favorite city with him. Warner would be busy most of the time with work, so I had all sorts of things planned to keep us busy—hands-on science museums, FAO Schwartz, and Central Park to name a few.
The flight went well. In fact, when we first boarded the plane, the attendant made an announcement to everyone that this was Jacob's first flight, and even invited him to the cockpit to meet the pilot. I have a photo of Jacob in the pilot's seat, his hands on the controls, with the pilot's hat perched on his head. It's one of my favorite pictures of him because you can see how happy he is. His face was alive with excitement, no trace of anxiety or sadness to be seen, no sign of Tourette’s. In that frozen moment, he was just a regular kid having the time of his life.
We got in on a Thursday and everything was going fine. By Thursday evening Jacob's mood darkened. As we were getting ready to go to dinner, Jacob started crying.
"What's the matter, Jacob?"
"Momma, I can't not love you and Daddy, right?"
“What do you mean, Jacob?” Warner asked.
Jacob’s voice cracked and his eyes darted frantically from me to Warner.
“Right? Right? Tell me. I can’t, right?”
Warner and I exchanged a confused look. I walked around the bed to Jacob. Before I could reach out to him he dropped to the floor and buried his face in his hands. He began to rock back and forth and between sobs he repeated, “Right? Right? You know that, right?”
At that point it became pretty clear that he needed a definitive answer to put his mind to rest. He looked up at us, his face a sticky mix of snot and tears. Warner knelt down on one side of him, me on the other. He wiped Jacob’s face gently and assured him, “It’s okay, Jacob. Of course you love us. You have to.”
“And we love you too. So much,” I added as I wrapped my arms around him.
He wriggled out of my embrace, stepped around Warner and began to pace the floor.
“But my head is thinking things I don’t mean.” He began to hit the sides of his head. “AHHHH! I CAN’T MAKE IT STOP. THEY WON’T GO AWAY.” He fell to the floor once again.
Warner and I stood over him, wiping away our tears and searching for composure. We were lost. How do you explain to a seven-year-old child that his mind is screwing with him? I sat down on the floor and held him while he cried. Warner sat with us, his arms around me. And we sat there, the three of us in our buttoned up coats, locked in an embrace and an emotional battle we didn’t understand.
After 30 minutes Jacob had calmed down enough for us to go to dinner where we sat trying to forget the scene that had just played out—trying to blend in with the other families that we saw—the families whose lives seemed so perfect.
Jacob's intense emotions were scaring me. I never knew how to deal with them. On one level I completely understood how he felt because sometimes my feelings were too big for me also. But how was I supposed to help a seven-year-old control the intensity of his emotions.
I believed there was something out there—something that could help. And it was my job to find it because I was Jacob's mother and that's what mothers do, we fix things. So it was no surprise that on one of my worst days, my own mother called me and shared something that she thought might help.
"Turn the TV to channel nine. There is a someone that I want you to listen to."
"He's talking about expectations. Please just listen to what he's saying. He also mentioned something else..." There was a pause as she tried to stay composed.
"He said that there was a boy named Jacob out there somewhere who was having a hard time. He said the boy is seven-years-old and is dealing with something he doesn't understand. He said a prayer for the boy, for Jacob, and said that God would help him."
Although I'm not a religious person, I needed something like this, and I knew my mother wouldn't make it up. I also knew that I have always believed in miracles and signs. This was a sign, and it was my sign.
He talked about moving from believing to expecting. He explained that when you expect something to happen, you tend to prepare for it rather than just sitting back waiting and hoping. "God listens when you expect things," he said.
This new year, I had high expectations of God. But sometimes you have to fall hard enough, in order to have a reason to be picked back up again.
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$25
21 readers
1 Copy autographed
1 invitation to book launch
Includes:
$50
4 readers
2 signed copies of the book
1 signed copy of "All These Things" my debut book of poetry
1 digital copy of book
1 invite to the book launch party
Includes:
$75
4 readers
3 signed copies of book
1 digital copy
2 invites to book launch party
2 signed copies of debut poetry book All These Things
Includes:
$150
0 readers
6 signed copies of He's Not Broken
1 digital copy
2 invites to book launch party
3 signed copies of debut poetry book All These Things
Includes:
$300
0 readers
12 signed copies of He's Not Broken
1 digital copy
3 invites to book launch party
6 signed copies of debut book of poetry
Includes:
$500
0 readers
20 signed copies of He's Not Broken
1 digital copy
3 invites to book launch party
12 signed copies of debut book of poetry All These Things
1 print copy (11x17) of original artwork by author
Includes:
$1000
0 readers
40 signed copies of He's Not Broken
1 digital copy
4 invites to book launch party
24 copies of debut book of poetry All These Things
1 piece of original artwork by author
Motivational speaking engagement with Ginger and Jake (minus travel costs)
Includes:
