Rex By: Kathleen Lewis

A story about a young boy who used the Grace of God and his exceptional talent with a piano to overcome the challenges of being multi-disabled. His mother, Kathleen Lewis, tells their story of the many challenges that were ahead, and the miracles of hope to come.

She was a single mother when amazing Rex turned two years old, adding to the trauma of being told her son was blind and later autistic when he couldn't develop any speech among other autistic traits.

I was asked to blog about a book and receive a copy to have as a gift. When I opened the envelope after being so proud it finally came, I saw a picture of a boy playing a piano. His eyes filled with the love he had for it's music. My heart melted and I instantly knew I would have a sense of understanding of this boy. Little did I know, it was on a much grander scale of my everyday life. I felt the pain that Kathleen was experiencing, yet a much differently emotional scale.

As I started reading, I learned of a child who was autistic and blind. And with me not knowing of this boy named Rex; I had no idea he was blind as well. Adding to the mysteries I would encounter next.

Kathleen had recognized his musical effect on her son when at age two when his father gave him a keyboard; therefore, becoming his love for music guiding his way to being "free to fly" as Kathleen had mention in the book. Together they learned their true purpose in life even after the trouble she had brewing with his schooling, piano teachers, doctors, and even television. Airing on a 60 minutes segment on Rex and his talent. Link to video is down below. Playing the piano was the one thing that made Rex feel alive...his music, the world and people who watched him , his ability to play. Kathleen stated in her book and I quote, " For those brief moments, it was as if the piano had freed him from the constraints of his body. It became his eyes, and the notes became his voice."

I absolutely fell in love with this book, and I know that you will too. Reading it before I even knew who Rex was except that he was autistic was the way I hoped it to have happened. The book made me feel as if I was watching along side Kathleen as she was living her life with Rex. It is a beautiful book indeed! "Go, Rex Go!" You are amazing!

Buy the book...Really,check it out
Amazon.com

View 60 minutes video
09/28/03: Musically Speaking

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A Child's Plea For A Change

My little Dev had some ice cream, which I knew was a no no for some reason. He said," Mommy my tummy hurts. We need to take out all that bad stuff." I had told him that it was probably the milk. It was Breyer's chocolate ice cream. Once an active milk drinker is suddenly turned away from it because he ended up in the bathroom with a sick digestive system. A few days ago, He had some orange juice that was not on the Feingold diet. He was now complaining of it hurting him as well. I had showed him a bag of Doritos that was a big no no for the Feingold diet and GFCF diet. He said he didn't want those either. He is now sitting at the table drawing on a piece of paper being very good. As the days went by, I've noticed that he is learning what is not good. He is starting to realize all along what I've been telling him. These foods are obviously bothering him, and he just doesn't want anything else to do with it. I hope so anyways at least for home if not for school. Then again he is always full of surprises, and he may stay away since he knows what it makes him feel like. I'm not sure what Ed thinks about it. He never really said, but I can tell a difference when he isn't flooded with all the bad ingredients. Unfortuantly, I am having a hard time getting my husband to understand that modern day foods are filled with many toxins that can alter a persons behavior causing a variety of symptoms. I believe that it would help the entire family, but when you can't agree on something then there isn't much you can do. As far as the children goes, I don't think that it will be too hard to eliminate some if not all of the ingredients. I do have a list of all possible problems with chemicals from the Feingold diet. I will be more than happy to provide you with that list if you are wanting to see what is on it. Thanks again and see you all soon.

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How We've Been...

This week has been a busy one for us. Christmas is coming and the boys can't wait to see what they have gotten for Christmas this year. We did have a mishap with "Ed" at school one day this week. We had forgotten to give him his ADHD medicine that morning, and by the time he was a school for no more than two hours. His sensitive to sound struck him awful that day. He was having problems with the noise in the classroom during spelling as he sat at his desk with his head down and his ears covered. The intercom had interrupted his sensitivity as well. The teacher had to call in his therapist to the school to remove him from class. She immediately called me once she had talked with him for a few, hoping to relax him to where he was able to function again in the classroom. She asked me if anything was wrong at home. I said "no" as she explained to me what he was having difficulty with. I immediately went to the school with his medication, to meet with her about the situation. I instantly saw the difficulties he was having that day. He was twisting his hands together in his lap and moving his legs back and forth. As he was asked to talk about thinking about going back to class, he replied, "I don't want to be here." I explained to him how important school was and that he needed to try again once he felt calm enough to return." He didn't really have a reply to speak of. After we had sat talking for a while, it was time to go. She took "Ed" back to her room to finish playing hangman, and then allow time for his medicine to take effect. She had told me that she wasn't sure if she'd be calling me back. I went home in the rain and braced myself for another call that never came. I was happy to feel that somehow he was able to relax himself from all the noise for just a moment. "Ed" has always been the touchy type. Sensory issues that I felt were there from the time he was born or at least six months of age. Laying him down when he was asleep only left him to awaken as soon as I even tried to remove my hands from his body. His difficulty in sleeping took a toll on us all. Back then, we had no idea what he was really going through, and that made it hard for anyone to understand what was really going on. He still has problems relaxing to go to bed. Like now.... it's 10:40 p.m. and he will not accept the idea that it is way past his bedtime and all he can think about is the candy he couldn't find. How long have I been doing this...every night seems like. He has become an excessive talker even more so now than when he was younger. He will repeat what he says now stumbling somewhat over words until you answer him or pay attention to exactly what he is wanting you to know, hear, or see. I'm not sure if his stumbling ex. I...I..have....and so on is much of a concern, because most of the time he can speak normally. "His ADHD medication is helping with the ADHD, but it could be aggravating his autism symptoms." Lately, he's been very annoyed at the presence of loud noise, that interferes with what he is doing. Lot's of agitation and bickering. The boys are in desperate need to visit the DAN doctor and for me to come to terms on how I am supposed to transform their diets hoping that some of this would be put to rest. I'm trying to come up with a mental plan of my own, but it falls apart as my mind goes blank due to my own unique differences from the world around me. I feel like my mind is struggling in a way similar to the boys, but I'm not as broken as they are. I'm an overly emotional person, who finds it hard to comprehend text without reading the same sentence over and over again to try and understand it's meaning. I never learned how to multiply like most kids. My brain just couldn't absorb the memory necessary to complete it. It's the little things that I find in myself that allows me to put myself in their shoes with an understanding of how hard it is for them to deal with life and all it's fragile moments. I'd have to say they are doing well, if ADHD/autism could somehow be controlled to the point where they can deal with the difficult times. Hyperactivity is a major challenge for them, and they have a long way to go before they could even stay in a calm mood without being agitated with themselves to the point that they break down into a depressed state of mind. Their emotions still run high, and controlling those emotions will take time.
"Dev" has a new challenge now with a tooth. The poor dear. His bottom teeth (the first ones to come out) is just beginning to get loose; however, his permanent tooth is making it's way through the skin right behind his baby tooth. I can just imagine the pain he is in, but he doesn't seem to react to it much. I've been using orajel to help, so maybe it is more easy for him to deal with it. He's only requested it once since the first time I gave it to him, and I plan to have been handed the tube to help ease the pain. I haven't gotten a hold of the dentist yet, and hoping that he doesn't have to have it pulled out. Maybe it will continue to get looser and falling out on it's own. Only timing will tell, and I hope that it is on his side. Not having to go through that trauma would be a blessing.
Well, I guess I'll be signing off to regain my ground to fall asleep, and say good bye to this long day.

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A Monday Night And ADHD

Unfortunately, the kids had candy. Only 2 suckers, 2 jaw breakers, and 2 now and laters that only "Ed" had. Yet, it was a night of total chaos. Since the boys are diagnosed with HFA/ADHD, I feel it is sometimes difficult for me to distinguish the difference between the two, so to me I feel that they just go hand in hand. So what made them explosive...sugar or the colors added to the candy. I'd say both, but more so the colors. It was just one thing after another. Either we didn't have what they wanted to eat to being completely unable to be disciplined. "Ed " was upset from the start because he wasn't wanting to be line leader anymore at school. He said he couldn't hear because he was so far away. Guess that meant that he would keep walking once the teacher told him to stop. Not sure about that one. Took awhile for him to calm down and regain control of himself. Then he had candy to make it worse. After a while, I had calmed him down enough to get him on the computer to play a game to keep his attention on something while I was dealing with "Dev". He is another story in itself. "Dev" is the one who will go around bugging you I guess. He likes to be right by my side all the time and is frequently being somewhat of a bully. He will come up behind you poke on you, push you, and hit on you. I understand that he is only doing it because he thinks it is funny, but sometimes I feel like it's to the point were I say enough. It can be quite painful and with me suffering from undiagnosed joint pain it really takes a lot out of me. I'm having to watch out for scratching as well when I'm physically moving them ( yes, both) from one place to another to avoid more dangerous situations. This is pretty much how the entire night went until they were in the bed asleep. I see a lot of hyperactivity around here, and the autism silliness just flows around along with it. So I am doing a lot of overlooking with behaviors as long as they are not trying to hurt others which does happen frequently. It's always been that way around here even since they were little. I just pull myself together and hope I don't go nuts as well.

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Salicylate.... A problem among us all

I was lucky enough to receive a packet from the Feingold Association Of the United States. Inside I found a whole new perspective on how companies alter foods with modern technology. Salicylate sensitivities also a common with children who have ADHD and/or autism, but anyone can have a sensitivity to it. My children suffer from both ADHD and autism. There are many symptoms of a salicylate intolerance. I found a good list of them at SalicylateSensitivity.com
Do you or your child ever have any of the following: Gets upset to easily; Distractible/short attention span; Impatient, doesn't seem to hear you; Aggressive or disruptive; Irritable, Difficulty sitting through a meal; Doesn't recognize danger; Nightmares/sleep difficulties; Bedwetting, daytime wetting; Runs, doesn't walk; Doesn't finish projects; Compulsively repeats actions; Talks too much or too loudly; Fights/argues; Overreacts to touch, sound, and lights; Accident-prone; Frequent or chronic physical complaints, such as headaches, stomach aches, asthma, hives, ear infections, or constipation and/or diarrhea. The list of symptoms I have provided to you is from a booklet I received from The Feingold Program, "This Child Needs Help." www.feingold.org 1-800-321-3287. Also, The Feingold Program uses foods and other products that are free of the following: Synthetic (artificial) colors: Synthetic (artificial) flavors; Aspartame (artificial sweeteners): Preservatives BHA, BHT, TBHQ; Aspirin and food which contain aspirin-like compounds called salicylates (such as apples, grapes, oranges, tomatoes). Yes, even too much vegetables and fruits can be harmful due to naturally occurring salicylates. After a favorable response has been established, the salicylate-containing foods may be reintroduced one at a time and tested for tolerance. As always, consult your doctor for more information. Something else I want to mention about food colorings. Most food colors are derived from petroleum, and contain lead, mercury, arsenic and a variety of other harmful chemicals. Research shows that all the artificial colors cause DNA changes at low doses, and can damage nerve development dramatically when combined with other additives. Again, this is taken from the booklet from the Feingold Association of the United States. You may also become a member of the Association if you wish to get total access to all of their information you may become a member at their website: Feingold Association of the United States
Have a wonderful day and I hope you will consider what you put into your diet when there is so much out there that can harm us. Please keep researching this subject elsewhere on the web and you will be amazed at what you find. Thanks for reading as always, and I hope to turn on a few light bulbs with such a dangerous subject.

I am updating on the Feingold diet. Talking with the national director of the Feingold Association, I am understand that this diet is a choice for you and your family. There are no reports of a test to calculate probable sensitivities. She has told me by email that and I quote," The essence of the Feingold diet is that you ingest more of the good stuff and less of the bad." The bad being the food colors, additives, salicylates, preservatives, and other modern day technological advances in enhancing a foods taste, texture, or life of the product. Up coming post will include some of the behaviors my children are having problems with. See you all soon.

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Christmas Joy For The Boys

The boys have received some Christmas joy this year when grandma, great-grandma, and an uncle came to visit with a big tree including the lights, and decorations. The boys had a wonderful time helping put it together. Here is "Ed" doing his part. He was the one who worked on it the most putting all the decorations on except for what he couldn't reach. "Dev" helped too, but his attention span fell short so he just ran around the house. He is very good at that, and always pretending to be a car running up and down the hallway. It took us a good 3 or more hours to get it all done. To bad it was so big I couldn't fit it in the living room, so it sits in the kitchen. Strange place for a tree; especially the big one. I kept the small one in the living room and added another strand of lights to it so it looks even better now. Mom will be coming out next week I guess to see how we did while she heads south to pick up my sister's twins for Christmas. She will be very happy to see what the boys have done. This is our first year with a big tree so it really caught the boys eyes. It kept them very busy until it was bed time, and that made me very happy. Mom has also given me a singing Santa Clause that sings "Here comes Santa Clause..." "Dev" LOVES him very much and always wants to hear him sing. He goes around the house snapping his fingers in a unique way and dancing around the house. He is so cute be-bopping to music he likes. Well, I guess I'll be closing now since everyone else is in bed. Maybe I should be as well, take care of yourself and may all your dreams come true.

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O' Little Tree

Happy Holiday's from out family to yours. I would like to thank all of the wonderful people who are helping us out this year for Christmas with the boys. So thanks from the bottom of my heart to all the teachers, their school therapist and her little helpers, and the Angel Tree (Salvation Army) donors. Christmas is hard to come by for some of us who live on a budget with nothing to spare. We have a small tree, but the love, help, and support makes it feel 10 feet tall. I am excited to see what they will receive from their true Santa Clause. They are two very lucky boys to be loved by so many. Boys, I hope that you get everything that you want for Christmas this year and so much more. We love you two very much, and hope all your dreams come true...just don't break anything. LOL

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Feeling Lost With Doctors

As many may know, my boys are dealing with rashes (eczema and psoriasis). I have taken the boys to a pediatrician hoping I would find the help that I need so much. Didn't get to far with that one, just learned I need to find a DAN(Defeat Autism Now) doctor. I turned to my yahoo group ASD-MS, and was told of one in Louisiana. I am not able to travel so far, so now I really feel lost. Before I just jump in to putting them on the GFCF diet, I need to know what they are allergic to (if anything). As far as the Fiengold Diet goes, removing the colors and dyes in their diet seemingly means that it would be my choice in doing this. I believe it would help them as well. I have asked a few people what my options are now with finding a doctor. Maybe they will help. If anyone who reads my blog knows of any options that I might have, please let me know. I am just wanting to care for them the way I should, and finding the right doctor to test them is my top priority. I will search the web and hope to find something, but I just don't know. Thanks for reading and I'll be happy to hear from you.
Amanda

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Food Additives and Your Child's Behavior

I was searching something to write about today and I found something on the food additives that so many companies put into food. So how bad it is...I'd say very. I came across the Feingold Diet .
I've never heard of this diet, but it makes such obvious sense. Part of the overview is this, and I quote,"Numerous studies show that certain synthetic food additives can have serious learning, behavior, and/or health effects for sensitive people. The Feingold Program (also known as the Feingold Diet) is a test to determine if certain foods or food additives are triggering particular symptoms. It is basically the way people used to eat before "hyperactivity" and "ADHD" became household words, and before asthma and chronic ear infections became so very common.
The Feingold Association believes that patients have a right to be given complete, accurate information on all of the options available in the treatment of ADHD as well as other conditions. Sometimes, the best results come from a combination of treatments. This might include using the Feingold Diet plus allergy treatments, or plus nutritional supplements, or plus a gluten-free/casein-free diet, or even Feingold + ADHD medicine. We believe that it's useful to start with the Feingold Diet since it is fairly easy to use, not expensive, and because removing certain synthetic additives is a good idea for anyone."
As I have addressed in previous posts that my children's therapist has always suggested removing the colors from their food and drinks. I suggest as well removing colors from other products as well. From medicines to play-doh. These colors really affect my kids in my own opinion. They usually get even more hyper when they eat or drink something with any colors in it. Talk to your doctor about removing colors from your/their diet. Explore all the possibilities of allergies and their source if possible. Every child is different so getting them tested will help you know what types of allergies they may have. Explore the Feingold Diet and see if you think it is right for your loved ones.

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