Autism vs. Asperger's Syndrome - We have the answer!

In December of 2009, Stephen was diagnosed with Autism Spectrum Disorder. This is a VERY broad diagnosis which includes Autism, PDD-NOS, Asperger's Syndrome and more. When I announced to friends and family that the results were ASD, but not specific, I did say that figuring out which part of the spectrum Stephen fit into would be a long process that could take months. At first, I was sure it was autism. Then, I saw another side of Stephen that was more aspie (nickname for a person with Asperger's). We did have a doctor say that is was more than likely PDD-NOS if we could not pin down which side of the spectrum Stephen was on, but the doctor made that assumption based on history only.

To our relief, Stephen has finally started back to seeing his occupational therapist. He spent 1 year with her when he was in the first grade. He went the entire year of 2nd grade with no O.T. at all. He does work with a speech therapist at his school, but we saw a rapid regression. I made the call a few months ago to get him back in, and our first appointment was yesterday.

I was very comfortable with his O.T. giving a definitive answer of Asperger's Syndrome or "AS." Although we have heard it from others, it was never from a specialist that treats these kids every day and has worked with Stephen every week for a year. Ms. Terry confirmed that Stephen is DEFINITELY an aspie, which is good news. It's the highest functioning form of Autism Spectrum Disorder. Stephen is very bright and makes really good grades in school - especially math. He could talk to anyone all day about video games and his favorite comics. He has a very rigid routine, much like a person with Obsessive Compulsive Disorder. I don't know if that will develop into that particular diagnosis or not. Right now, we are treating his symptoms and difficulties, rather than the name behind this "beast."

The main things we will soon be working on are sensory processing integration, communication between his left and right hemispheres of his brain, motor coordination, social skills and working well with others as he will be doing more and more in school as he moves up through the grades. I can see now that his love and fascination of mathematics could lead him to a very successful career in technology, programming or engineering. He's going to be the brains behind the business, but will not be the one to manage others, make presentations or be forced to work with a team of people - and that's okay.

We are trying to teach Stephen that Asperger's is not a bad word. It does not mean that he's a bad kid or a stupid person. It's just part of his personality and what makes him tick. I try to tell him every day how smart he is and we practice social skills often, although he is resistant right now. I know that will get better with time and therapy.

He's doing well in school this year. 3rd grade is a difficult one, but he has a very patient and loving teacher with peers who know he's special that try to help him out and accept him for who he is. They know that Stephen is just... well... Stephen. And we love him for who he is - the whole package - Asperger's and all.

Tourette's Syndrome Youth Ambassador Program & MORE

Check out Phillip's absolute favorite presentation of Tourette's Syndrome. The program was started by Tourette's Syndrome Youth Ambassador, Jen Zwilling, who won the 2007 Brick Award. This is a MUST see - seriously! It would be so cool if Phillip got the info and training to do this program with his class. I bet he would love that, too!

Also, Discovery Health is about to start Adventures in Parenting Week. First is Tourette's Uncovered, airing on Discovery Health Monday, September 13th, at 9/8c. Along with the television special, there's great info on Discovery Health's How Stuff Works website about Tourette's Syndrome. Finally, we've got some education about TS getting out!

So, check out all this awesome stuff! I don't know much about Discovery Health's Tourette's Uncovered, but I can say it would take a LOT to top Zwilling's TS Youth Ambassador Program as my ultimate favorite educational Tourette's Syndrome video. Enjoy!

School is in Full Swing Now!

It's been one crazy month! The boys started back to school about 4 weeks ago. I'm doing a lot of reflecting today on past school experiences, what I've learned from our trials and tribulations and how I can use that to better the experience of public schooling for my boys.

I would put communication with teachers and specialists as a very high priority. So far.... eh. It's not so bad with Stephen's teacher. I seriously need to get (or find) her email address. I think she did give it to everyone, but there are so many forms and papers to fumble through that first week! I've already let her know that an informational conference would probably be a good idea since Stephen's IEP is not up for review until October. It's like torture to wait because I would love for everything to have been in place and ready to go by the first day of school. I had to request a peer helper again, give suggestions, etc. I thought she had this info, but I guess I was mistaken.

With Phillip (going by "Phil" now), it's a bit more complicated. He's in the 6th grade & has 3 teachers. I would love to give him more freedom and independence - not having to see his mom up there every-other-day, BUT I have got to talk to his teachers. I didn't know until the Parent/Staff Organization (PSO) meeting & Open House that Phil's teachers did NOT know of his special needs! The counselor assured me that the teachers have his information. I became suspicious when Phil came home from school upset that he got in trouble for drifting off to sleep. For Phil, this is a medication issue and he's going through some adjustments right now. I sat down and quickly scribbled a letter for all of his teachers one morning before school. I gave everyone my contact info & requested their email addresses in return. So far, I've gotten a response from ONE person. Crap. And, again I say - CRAP. I cannot sit and write letters all the time. PLEASE God, I need their email addresses! That way, they all get the same message at the same time and can reply to all, plus copy the counselor, etc, etc.... If I can't communicate with these folks, we're going to have a tough year. At least they know now that Phil has Tourette's syndrome. I hope they read the info I wrote down carefully. I told them I'd like to have a conference to discuss his special needs and accommodations. I shouldn't have to do this, though. They should have this info already, but better to be redundant than take the chance that they are in the dark on this issue. It's just frustrating.

I can't really go and peep in on the teachers like I could last year. I don't know why. I could pop my head in Stephen's classroom at any time! I didn't so much with Phil, but I did show up to lunch sometimes and ended up checking in with his teachers. I helped them out on certain occasions which opened up an opportunity for better communication.

I just have get off my lazy butt to initiate these conferences with all the teachers. It's a matter of just doing it, but the motivation is not really there right now. I think I'm just tired of telling our story so many times. I would love to email links to all of the teachers about my boys' diagnoses and their medications. That would be helpful, would it not? I cannot possibly relay all the info I need to relay in what will probably be only 30 minutes allotted for these meetings.

Sometimes I just want to take a break from being "mother of special needs kids". I want a day to not think about it, but it's the reality of my life, their lives, how I think and why I do what I do, why I say what I say - so ingrained in me that I cannot escape this stress and responsibility to care for my boys while keeping myself emotionally healthy. Is it so bad to want a "normal" day? We have good days and bad, but never "normal." I know - there is no normal - except one of the settings on a washing machine. That's it. What about average? Can I have an average family for a day? Oh, but wait... that would be boring, wouldn't it?

So that leads me to what I tell so many people who ask, "How do you do it?" and "You must be so patient," and "You must stay tired." I tell folks that an average family with an average life is boring. I love my kids - the way they are, special needs and everything. Sure, it's tiring and stressful, but rewarding to know that God chose me to raise these boys. And, I can definitely say there is not much "boring" going on in the Lane Gang.

I guess I just have to take on each day as a new adventure. I have to start with a deep breath and prayer for sanity to get myself mentally and emotionally ready for the tasks that lie ahead of me every single day. I'll make it my goal to get these meetings set up this week & will let you all know how that goes. Until then... keep sending me those good vibes!

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?

I Just Don't Blog Much Anymore

Okay. So I use Facebook to keep in touch with most people now, but will keep the blog up. I will try to remember to update the photos on here soon. So much has happened - I just usually share it on FB. So, don't think we've fallen off the face of the earth. Link to my FB profile on the right if you are not already following the Lane Gang there! Love you all!