Tourette's Syndrome - Chronically Misunderstood

Here is an image of the Schematic representation of the clinical elements of Tourette’s syndrome:

The main thing that most everyone I know thinks about when I say "Tourette's" is the tics. Tics are movements that one cannot control. People with Tourette's have what's called motor tics and vocal tics. Motor tics can range in degree from excessive eye blinking to violent head jerking. The same goes for vocal tics. Phillip sometimes does humming sounds or something like clearing his throat. Some people with Tourette's make louder sounds or say words. Some people think that all people who have Tourette's yell out obscenities. This is very rare & is what people sometimes see on television about the disorder. This extremely rare type of tic is called "coprolalia." You can learn all about tics at: "Tourette's Syndrome - Now What?"

I have to say, dealing with the kids at school last year was probably the most difficult thing for Phillip to do so far regarding his Tourette's. He started a new school. When the other students asked why he was twitching and making noises, he said he had "tics." Most of the kids thought he meant "ticks" and ran away in fear. My brave son stood up in front of the entire class about a week after he transferred to this new school. He told the other kids (5th-graders) about Tourette's. He explained about what tics are - that they are not bugs, but twitching that he cannot control and that cannot be spread to others. He told as much as he knew to tell and then took questions. The kids seemed genuinely interested in what he had to say. There were some questions, and then phillip ended with, "Okay, so, no more questions or staring. You now know all about what I have, so you can choose to accept it and be my friend or you can leave me alone." What a trooper!

One last thing to mention about Tourette's is that there is much more than just tics, as you can see in the chart. We constantly are dealing with Phillip's OCD (Obsessive Compulsive Disorder) issues - plus, there's the ADHD and moodiness side to it, too. One of our biggest hurdles right now is balancing medication. The problem is that most medications that help ADHD, OCD and mood can also increase his tics ten-fold. Talk about frustration!

So... the journey continues. We are still figuring out Phillip's medication. It seems we are always at the doctor's office. Some of these medications scare the crap out of me. His blood pressure went too low on one of them & he fainted. I thought he'd had a seizure! We just continue to pray for Phillip - and trust that God knows what he's doing!

We Have a New Look - and a New Purpose.

The Lane Gang blog has been redesigned and rethought. It was more of a journal of the funny or exciting things that were going on with us - accomplishments or just stories. The focus of this blog will turn in a new direction. For one, we'll take you through what it's like to be the parent of a child with autism. Our son, Stephen, was diagnosed as being on the "spectrum" less than a year ago. We will also use this blog to talk about Tourette's Syndrome. Our son, Phillip, has this diagnosis and it is SO misunderstood. We'll take you through some of the trials Phillip has faced and how much he's accomplished despite his diagnosis. We look forward to sharing with you and receiving your feedback. Most of all, we hope we can help others out there that may be going through similar situations.

My experience with an Autism support group and the writings of Jenny McCarthy

I am the father of an Autistic child. We found out the day before Christmas break of 2009 that our younger son is on the spectrum. Per his diagnosis, he is Autistic, but also displays Asperger's tendencies. To help understand what I am going to deal with as a parent, I have joined several support groups on the web and occasionally research the topics in an effort to know more. I ask questions of other parents, and on occasion I solicit the advice of a very old friend who is a pediatrician and a professor of pediatrics at a very well respected university.

A couple of weeks ago, I posted on a support group about the Gluten Free Casein Free (GFCF or GF) diet. Some people in the group locally were touting the wonders of the diet and how it had helped their child. Lisa and I had already looked into this diet and had even tried a couple of things, with less than stellar results. I e-mailed my pediatrician friend about the GF diet, and he explained to me that the studies performed and evaluated so far were flawed (small sample size, no blind testing, etc), and that there is one study that was recently completed with results still being compiled. In an effort to discuss this, I posted a message about some of the concerns of my friend along with our results from our little experiment.

With some of the responses I saw, you would have thought I had put a picture of the Pope on a Crucifix at the Vatican and then insulted the church. Some folks were very civil and related similar experiences to mine, but a few insinuated that my pediatric friend, who I would trust my child's life to, didn't know what he was talking about.

Celebrities in the United States have a very unique position in society. Because they are well known, always in the press, and make more money for showing up to take a picture than most of us make a year, they are automatically considered authorities on anything they wish to talk about or write a book on.

In 2007, Jenny McCarthy published a book titled Louder than Words: A Mother's Journey in Healing Autism. In this book, which I admit I have not read, she apparently discusses her experiences as a parent of a child on the spectrum, her beliefs on what causes autism, and how she has "cured" her son.

As a response to my post, at least one parent, if not more, referenced Ms. McCarthy's book and stated that she knows more about ASD than the pediatrician I consulted. I cannot speak to Ms. McCarthy's experience with her own son, but just because she has had success with her own son does not make her an expert on the subject.

In the summer of 2004, I had the privilege of taking American Literature II from Dr. Barber Bancroft at Troy University, Montgomery Campus. As part of the class, we were required to write a paper on an author of our choosing from the course material. I chose to write on Sylvia Plath. I didn't choose her because I liked her work. On the contrary, I couldn't stand any of her writings. The reason I chose her was because I knew that she suffered from depression and had committed suicide. I felt that since I knew people who suffered from depression and other mental disorders, that I could write a paper about her. Dr. Bancroft quickly corrected me. Just because I had known a few people who suffered, I was not an expert on the subject, just as Ms. McCarthy is not an expert on Autism.

One of the parents in the discussion group made the comment that I was doing my child a disservice by not implementing a GFCF diet until credible research has been validated. She was not only touting Ms. McCarthy's work, but was also discussing how the GFCF diet had helped her child. I am glad that the diet may have helped her child, but I am not willing to risk the long term health of my son on something that may or may not work. My research and understanding is leading me to believe that the short term, possible benefits, of the diet do not offset the potential long term effects. As an example, children on the Spectrum tend to have thinner bones than neurotypical children, and that those on the GFCF diet that are Autistic has twice as thin bones as Autistic children on a normal diet.

Ms. McCarthy's work not only discusses the wonders of the GFCF diet, but also states that vaccines cause Autism. Her claims fly in the face of known scientific fact. As a parent, I can understand her concerns. For example, when H1N1 was all over the news, my wife and I chose not to vaccinate our children because we felt the shot had been rushed to market and that not enough research on the vaccine had been performed. However, numerous studies have been performed that show no links between vaccinations and the occurrence of ASD in children.

Is Ms. McCarthy right? Am I right? No one knows right now, but given the choice of following the advice of a woman I have never met, whose greatest accomplishments in life are posing for Playboy magazine and hosting shows on MTV, and the advice of a pediatrician I have known personally for 30 years who has been in the medical field for 10 years and practices/teaches at a major university hospital, I will choose my friend. He has never met my son, but I know that when I talk to my friend, he will give me the straight truth, watered down enough so that those of us not in the field can understand. I feel that like me, he hasn't dismissed the claims, but is waiting on concrete proof, no matter the result. Once the results are in, then maybe I will be willing to try such drastic measures. Until then, I'm following sound medical advice and doing what I know right now is best for my child.

It's AMAZING How God Crosses Two Paths for His Purpose!

Story from 8/6/2010 -

I was out and about this afternoon - had to drop Phillip off at his dad's office. As usual, Preston told me before I left, "Just call me when you get downtown, and I'll meet you when you get here." On the way there, I realized I had left my cell phone at home. This wouldn't have normally been a big deal, but I had our dog in the van and leaving her in the heat would be deadly. I wasn't willing to leave the van running to bring Phillip inside. We were downtown, and I didn't want my van stolen! I kept on saying, "Oh my goodness! I don't know what to do!"

By the time we got there, I had decided to just wait. I thought, "Preston will figure it out. He'll wonder where we are, try to call me, won't get an answer and will come down here to check. Then I can tell him I left my cell phone at home charging." I spent the time cleaning out my van, putting the third row back up and organizing the back from our out-of-town trip last weekend. I cleaned up the trash and toys laying around, put up the travel DVD players and all the charging wires draped everywhere. Once I finished all of that, I realized it had been about 15 or 20 minutes and the gas gauge was inching closer and closer to empty. I had to figure out something soon. I was out of ideas until I saw a lady walking out to get in the vehicle parked next to mine. Time for my backup plan!

I rolled down my passenger window to get this stranger's attention. "Ma'am? Ma'am? May I please borrow your cell phone? I'm meeting my husband here, but I forgot mine. He doesn't know I'm here and we've been waiting for a long time now." She turned to me with a look of relief - like I helped her in some way. Then she said, "Sure. I'd be glad to loan you my phone. I didn't need to drive away just yet anyway. I was very upset and should try to calm down a little first." I thought this nice lady had just had a bad day at work. We talked a little while I was trying different numbers, attempting to get hold of Preston. I felt like I was being a bother when I asked if I could try one more number. I explained that my husband is in I.T. and there's no telling where he is at any given time. She replied, "Well, mine's just died yesterday."

I was shocked. Did this lady just say what I think she said? I replied, "Your HUSBAND?!" She nodded yes. I was leaving a voicemail for Preston, but cut it short and hung up as I got out of the van and walked around to her. I didn't know what to do or what to say. All I knew is that this nice lady's husband died yesterday and that she needed some time to gather herself before driving away. I gave her a big hug and said, "I don't know you, but I do know you are hurting." She hugged me tight and cried on my shoulder. With tears welling up in my eyes, I told her I would pray for her. I don't usually just come out and say stuff like that to strangers - nor do I just hug people I don't know. Some people are not fond of hugs, and I'm aware of that, but I just felt so compelled to reach out!

This recent widow looked at me and said, "I'm Gwenette. I know you will pray for me. You don't know how much this means to me that God put you in my path." She continued to explain that her husband was killed in an ATV accident yesterday - that he was thrown off and landed in a way that killed him instantly. I was shocked. She said she was only there to pick up a few things from his office. I thought, "How painful to have to do this the day after he died - with no one to help or drive her!" I responded, "I'm Lisa, and I guess we helped each other. Thank you for letting me use your phone. May God bless you, Gwenette. If you need to, just sit in your vehicle until you feel ready to drive." We looked at each other in a sisterly way, and she gave me one more big hug.

She turned away to get in her vehicle. I just stood there for a few seconds to catch my breath. "Our meeting each other just now was no accident," I said to myself. I walked around the van to get back in. I watched as she attempted to regain her composure before driving away. My heart sunk and I just looked down in sadness for her. I realized just then that I was wearing my shirt that says, "Jesus has a place in my heart." At that moment, I knew for sure it was the Holy Spirit that made all this happen. Everything from leaving my cell phone at home to bringing the dog along and even the time it took Preston to come out (about 1 minute after she drove away). This impromptu meeting was actually arranged.

It's AMAZING how God crosses two paths for His purpose, isn't it? Next time you leave something behind or feel prompted to speak to someone, think twice about the fact that it may play some part in a greater plan.

Oh, and please keep Gwenette in your thoughts and prayers.

Knight Rider Car!

So... we've gotten an '86 Trans Am for Phillip and Preston to work on together. The goal is to restore the car in time to give it to Phillip when he turns 16. That's in about 5 years. So far, the guys are still pulling things apart. Today we made the unfortunate discovery that there's a lot of rust in the floor panels - a costly repair. I'm excited to see how it goes! The guys hope to get this car as close to looking like K.I.T.T. from Knight Rider as possible. We're such geeks! Isn't it great?