An Angel

October 18, 2014

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•  September 2009. My mom came to Nashville to stay with the kids so I could go to Vegas for the weekend to see Cheap Trick do Sgt. Pepper Live at the Las Vegas Hilton. On the flight to Vegas, an article in the airline magazine caught my eye. It was about a child with autism, and it sounded a lot like Liam. I was sort of in shock. I didn't want it to be true, but I knew.

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My good friends will tell you I will research the hell out of things, and that is exactly what I immediately went to work on. I got online and spent countless hours trying to make sense of what may be going on with Liam. It was all I could think about. There was a lot of information about the signs and symptoms of autism, but I was very confused by it. There were some things about Liam that seemed like autism, and other things that didn’t.

I distinctly remember the one thing that hit home to me was the affinity for water. Liam, who's was 18 months old at the time, would stand at the sink endlessly and watch the water from the faucet. He was kind of obsessed. Liam also didn’t always respond to his name when you tried to get his attention. He was kind of aloof. He didn’t complain or cry that much. He was pretty easy going and content. But he wasn’t really antisocial, a symptom they look for with autism. That was one of the things that threw the therapists and evaluators off about him. He didn’t spin the wheels on cars or line things up. He actually didn’t play with toys that much. He didn’t flicker things in front of his eyes and look off to the side. But he was in his own world, a world we didn’t quite understand.

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That weekend I attended a friend’s birthday party in a restaurant on the Las Vegas strip. I was seated at dinner next to a very nice man named Alvin. We started talking and I found myself talking about Liam. I was struggling to process what was going on, and pretty soon I was in tears. I explained to him that I was trying to make a deal with God. “Just please let Liam be ok and let this not be his fate, and I promise I will do something to give back to help people with autism.” Alvin looked at me directly in the eye and said, “You are going to do something for people with autism.” But the way he said it struck me. He said it like he knew, like there was no doubt about it. I continued talking to Alvin the entire evening. His spirit helped to uplift me at a difficult time, and I still remember it vividly. I later heard that Alvin was a spiritual advisor. I don’t know if it’s true, but it sure felt that way.

During that first year, I spent countless hours researching everything I could find about autism and other developmental disorders. There was plenty of information online about symptoms and lots of theories about what may be causing such an epidemic in numbers. But a lot of it sounded like quackery to me.

What I really wanted to know more about was what life was like for families with autism, and there wasn’t really much out there on that. I read plenty of books. I read all about the various biomedical “alternative” treatments. But what I wanted to know about was what life was like as these kids get older and become adults. I also couldn’t understand why more celebrities weren’t speaking out on behalf of autism. Given the statistics, there had to be plenty of famous families living with it. But there wasn’t much that was very personal, and that’s what I was struggling to process. What was our life going to be like?

Today things are very different than they were then. There are lots of wonderful blogs written by parents of kids with autism. I read several of them daily. I find that other parents are the best resource for advice. It’s also comforting to know there are other people out there dealing with the strange and stressful behaviors that we are.

When the opportunity to do the documentary film came along, we didn’t hesitate very much to say yes. Although my husband is a well known rock star, I have never been comfortable in the limelight. I have always avoided the cameras and attention that are often on Tom. But somehow the opportunity to tell our story felt like the right thing to do. It felt right because it was the kind of thing I would have appreciated seeing when I was new to understanding autism. I hope that people will find our story uplifting and realize autism isn’t as devastating as it may sound.

A couple of weeks ago, I reached out to my friends who had the birthday party in Las Vegas. I had often thought of Alvin along the way. The further along we got with Rock Your Speech and then the documentary film, the more I thought about Alvin’s words to me, “you are going to do something”. I hoped we could reconnect and I could let him know about what we were doing. I really just wanted to thank him for making me feel better and let him know I never forgot it. My friends gave me Alvin’s phone number and I sent him a text. I wasn’t sure if he would even remember me. A week went by and I never heard back from him. I thought I probably sounded like a nuisance. Then I got a phone call from my friend Roger, letting me know Alvin had died a couple of days ago. Shiver. Life is certainly strange, and I am so sorry that I was never able to reconnect with Alvin. I’ll never know if he was well enough to see my message. But I do know I have another angel to call on when I need a lift from this roller coaster of parenting a child with autism.

So here’s to you Alvin. Thank you for your kindness and rest in peace.

 

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•  As is the case with most families, there are several medical conditions that touch us closely. For us, those include not only autism and epilepsy, but also diabetes, cancer, multiple sclerosis, alcoholism, drug addiction and depression.

Today, there is some great news about type 1 diabetes, something I have been living with for 18 years.

http://www.cbsnews.com/news/possible-breakthrough-in-treating-type-1-diabetes/

I spend so much time focused on Liam’s health, I sometimes forget about my own. Then you have days when you can’t forget your own illness. Because there is some really great news about a possible cure in the pipeline, I want to take the opportunity to talk about my life as a diabetic.

Yesterday I spent an unexpected half day at the doctor’s office after waking up sick to a bloodsugar of 415. It doesn’t happen that often, but it sucks when it does. I have been wearing an insulin pump for about 15 years now. An insulin pump is a pretty amazing little device for type 1 diabetics like me. The technology has gotten so good that it’s almost like having an artificial pancreas. But it’s not a cure, not by a longshot.

Diabetes is a daily battle of balancing the food you eat with just enough insulin to cover it without giving too much. Too much is scary. Overdose yourself on insulin and you can find yourself having hypoglycemia, a life threatening state. I have to make a judgment about everything I eat, an educated estimate of how many carbs there were, and dial in a “bolus” to my pump, to deliver enough insulin to cover what I ate. It’s far from an exact science. It’s my best educated guess. I’m pretty good at it after 18 years of doing it, but sometimes when life gets busy, you forget to check your blood sugar enough times in the day, and it can creep up on you and go out of whack. High blood sugar makes you feel very sick and nauseous. Low blood sugar makes you feel nervous, shaky and you cannot think clearly. The frustrating thing about low blood sugar is it first effects your brain and your ability to help yourself. You are too foggy to recognize you are going into hypoglycemia. Just like constant nervousness about Liam having a seizure, I carry around a little bit of fear about hypoglycemia all the time too. That’s because it happens so rapidly, and if it’s severe enough you can lose consciousness. At that point, if you are not found and brought to a hospital quickly, you can fall into a coma and become a vegetable or die. Scary right?

Another aspect of having diabetes for a long time now - I am starting to have some little signs of long terms complications. I have not had the best control the last few years. Because of being frightened by the immediate dangers of low blood sugar, I am a little gun-shy about getting too much insulin. So my bloodsugar is high a lot of the time. The bad part is the long term damage that is done by high blood sugar. Think of the extra sugar as like sandpaper in your blood, slowly damaging all of your organs and vessels. I have been lucky so far. No signs yet of eye damage or kidney damage yet. I do have some neuropathy creeping in though. A little numbness and tingling in my extremities from time to time, no big deal yet.

But the biggest problem I am facing is my abdomen has extensive scar tissue from the insulin pump. I change out pump sites about every 3 days. Insulin has to be injected into your skin to get into your bloodstream, and the abdomen is the most convenient location for the infusion set. There is a small needle that goes in to inject a tiny plastic cannula, then the needle comes back out. The sound of it makes some people cringe, but it is a lot better than the multiple injections I once gave myself, up to 12 per day. The problem is insulin can’t absorb into scar tissue, so if you hit it, you won’t realize it until you have an extremely high blood sugar like the one I did yesterday morning. I wonder how if I manage to keep myself alive for another 40 years what part of my body won’t be used up. This is a big reason I am excited about a real potential cure!

Luckily, I have never lost consciousness from my diabetes. But I have come pretty close a few times. When my kids were younger, I worried about this a lot. That’s one reason I stopped drinking alcohol completely a few years ago. (Alcohol also makes blood sugar go haywire.) I had a few close calls, and I just decided it was too risky. With Tom being on the road so much, I have to keep it together for my kids. This was not a hard decision for me because alcoholism is another horrible disease that has touched my family.

Sick days for me are hands down the most difficult part of parenting a special needs child. I can never afford to be “off”. You have to always have your guard up because autistic kids are constantly getting themselves into dangerous situations. Sick days are the rare days I feel sorry for myself and wish my husband didn’t have to be away so much. It doesn’t matter how awful I feel, I still have to get up and make sure Liam gets his medicine and everything he still doesn’t know how to help himself with.

Luckily I have in my life my savior, Lilah Peterson. She's only 10, but Lilah always comes through and handles these situations with so much maturity. I couldn’t be more proud of her. Yesterday when I was feeling terrible, she very calmly told me to take my time. It was ok if they were going to be late for school. She knew I had to get my blood sugar back down to a certain level before I could even drive a car. She helped watch Liam and get him ready for school. She was ready to call 911 should anything happen.

Since this is my first time to talk publicly about diabetes, I want to also thank a couple of dear friends who have helped me when I was sick or having hypoglycemia. The first time I had a severe hypoglycemia was backstage during a Cheap Trick show. Lilah was an infant and I became very “out of it”. I think Cheap Trick tour manager Carla Dragotti thought I was on drugs. That's what hypoglycemia looks like. She found Pam Zander to come and help, and thankfully she did. Pam immediately recognized that I was going into insulin shock on and helped me get sugar. There were also several incidents when I was pregnant that my friend Jen Bowden had to bring me to the hospital late at night when I was sick from stomach flu. Stomach flu is also very dangerous for a diabetic. If you can’t hold down food, your blood sugar can drop and you have to go to the hospital for fluids. This happened a few times during my 2 pregnancies, and Jen was always the one who was there to get me to the hospital. Thank you so much to all of you who have been there for me in these situations. It is an embarrassing and depressing state to find yourself in.

Last, I want to say that Tom has had such strength through having two people in his family with chronic illness. He used to be so squeamish at the mere sight or thought of blood. I think he has worked through that now. Tom has a way of bringing humor to things. He used to kid me about what he would do if he had to give me my insulin shots. He jokingly threatened to inject it into my eyeballs. Ouch! But when things get bumpy around here, as they often do, he is such a source of strength. No doubt, I am a lucky girl.

 

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Introduction

September 25, 2014

2 comments

•  I want to start by introducing our family. We have all had a role in creating Rock Your Speech. We all have a passion for great music, and we believe music has the power to heal.

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My name is Alison. I consider myself a “warrior mom” - meaning I am passionate about fighting for my kids. Special needs moms are tough cookies. Every day there is a different kind of battle. We have mastered the art of staying calm in tough situations. Thanks to the internet, we know we are not alone. We can turn to a wonderful network of wisdom, from other parents who have been there.

I grew up in North Carolina in a home where music was an important part of life. My mom is a concert pianist and teacher. My dad was a lover of rock music, and I have so many wonderful memories of fun times singing and dancing with my family.  I have a love for crafting and all things artistic. I have a bachelor’s degree in fashion design and merchandising. I worked for legendary western wear couturier Manuel for several years while I was in college. It was an unforgettable experience, designing embroidery, working side by side with Manuel, and hanging with many of his country music clients.

I met Tom while I was working for Manuel and in my senior year of college. Life was crazy chaotic for me at that time. I lost everything I owned in a house fire, including all of my senior design work that I had to redo. I had a very difficult time with redoing everything, feeling extremely tired all the time and dropping weight. I was soon diagnosed with type-1 diabetes at age 22. My father moved to Nashville to try and help me rebuild my life, but unfortunately he was battling severe depression and alcoholism. When Tom came along, he was like my prince charming. He was the one who rescued me from all that craziness.

Right after I graduated from college, we moved to New York City. I was anxious to work in the fashion world. I gravitated toward computer graphics, doing production design in the children's apparel business. I didn’t love the corporateness of the business, so I found a job in a small art studio doing CAD design for home textiles. It was really fun, designing again for babies and children.

Tom and I were in NYC on 9/11/2001. We stood on the street at the corner of 14th street and 5th avenue and witnessed the tragedy of the world trade center crumbling to the ground. It was both heartbreaking and heartwarming at the same time. 9/11 impacted the economy and therefore our the design business where I worked. When my employers decided the next year to relocate outside of NYC, we moved upstate near a close friend to try and decide where life would take us next. We eventually decided to move back to Nashville.

A founding member and bass player of rock group Cheap Trick, Tom has spent the past 40 years touring with the band. Tom’s passion is vintage basses and guitars. He loves instruments that are rare and unusual and he has a very interesting collection. He is known for inventing the 12 string bass, which he plays exclusively on stage with Cheap Trick. Tom is thrilled about his new collaboration with Gretsch and will be premiering his own signature line at the NAMM show in January 2015. One little known thing about Tom is his artistic talent. He has a unique artistic style with crayons, and we hope to work some of that side of his creativity into Rock Your Speech. Tom is a great dad. Although we miss him a lot while he is out on tour, he loves spending lots of time with the kids when he is home, taking them to music classes, playing ball, training the dogs and playing Liam’s favorite, the Wii.

Our daughter Lilah was born in 2004. Lilah is a born performer and is SO MUCH like her dad. She has a huge heart, she loves to be on stage and entertain, and she is very funny. Lilah shines under pressure and is always at her best in front of a crowd. She wrote her first song at 6 years old for her dad’s birthday. She continues to write from the heart, showing she is wise beyond her years. She’s also an accomplished pianist. Lilah is great with her little brother Liam, often interpreting him for other people who may not understand. She has great empathy in her heart for people who are disadvantaged, and she has a great deal of patience to deal with the challenge of having a brother with autism. Tom and I are very proud of Lilah.

Liam is a wonderfully sweet and happy little boy. He’s had extensive medical challenges since birth, but he has always tried really hard to meet every challenge along the way. Liam has had intensive speech, occupational and physical therapy since he was 18 months old. He was evaluated for autism when he was 2, but he did not get a diagnosis until he was 5. Liam was a mysterious case because he was pretty social and he did not have some of the warning signs they were looking for in autism at the time. We did everything we could to find out what was holding him behind developmentally, including MRI and genetic testing. But nothing else was found.

When Liam was 3, he started having seizures and was also diagnosed with epilepsy. Although Liam’s seizures are well controlled with medicines, it is one of the most frightening aspects that we live with. Gran mal seizures are terrifying, and no matter how long we go without one, I have a little bit of a pit in my stomach with worry all the time about the epilepsy.

Liam is doing really well in mainstream school in second grade. He has aides there for support full time. He absolutely loves school, and he has flourished with learning and with his speech since he started. I don’t know what the future will bring with his education, but I am hopeful that public school will continue to work for him.

I could have never imagined what it would be like parenting a special needs child. It has transformed our family in so many ways. It is incredibly challenging. I worry A LOT. But it has also brought a purpose that we embrace wholeheartedly. Tom and I both want to do anything we can to share our knowledge and raise awareness about Autism Spectrum Disorder.

This is the path our lives are on now. It is fulfilling for us to be creating something with the potential to help other families, hopefully in an uplifting and fun way. We are bursting with creative ideas, not only about music, but also about fashion, technology and education. We are only limited by our time and money. We hope to find other creative partners along the way to help us pursue these things. I look forward to exploring these ideas right here on our blog and getting feedback from other parents. I have found other autism blogs to be invaluable resources for parents. The numbers with ASD are staggering, 1 in 50 and rising. There is so much work to be done. We hope you will follow us on this journey. We welcome your feedback and your ideas.

 

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