Meghan's World is a true story about one girl's triumph over Sensory Processing Disorder. The story validates children's feelings and offers parents and teachers a look into the world of a child suffering from SPD. Meghan's World was inspired by Meghan's first school show and her behaviors before, during, and after the event. The story briefly explains the therapies Meghan did to help her overcome SPD and lists resources for reference. Meghan's World ends with an "About Me" page so parents can start a dialogue with their child - leading to insight about their own child's needs and wants. Meghan's World is a great book for children diagnosed with autism, PDD, ADHD, ADD, dyslexia, Down syndrome, and other social and learning disabilities. Learn how to help your child grow into his or her own accomplishments, and see how Meghan has dealt with the following issues: * Sensory Modulation * Sound Sensitivity * Social Insecurity * Hypo/Hyper-Responsiveness * Tactile Defensiveness * Visual Perception * Sensory Processing * Allergies/Food Intolerance Publisher: Indigo Impressions PO Box 501, Speonk, NY 11972-0501 E-mail: meghanspd@yahoo.com Phone: (631) 926-8572 Consumer Info: Meghan’s World The Story of One Girl’s Triumph over Sensory Processing Disorder ©2007 Diane M. Renna Price: $17.95 US $20.95 CAN E-mail: meghanspd@yahoo.com Website: www.meghanstriumphoverspd.com Target Audience: Children diagnosed with SPD, autism, PDD, ADHD, ADD, dyslexia, Down syndrome, and other social and learning disabilities. Ages two and up. Major Distributors: Amazon.com Baker & Taylor Books School Specialty |
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| ©2007 Diane M. Renna * Indigo Impressions * All rights reserved * |
Written by Diane M. Renna
Illustrated by Regina Stark
With Illustrations by Meghan Renna
Illustrated by Regina Stark
With Illustrations by Meghan Renna
| Meghan's World The Story of One Girl's Triumph over Sensory Processing Disorder Giving inspiration & hope to children living in an over stimulating world. |
Below is an interview Diane did for Chynna Laird of LILY WOLF WORDS. Since Chynna's daughter, Jamie, has SPD, she decided to re-direct her focus from the subject of writing to providing a resource for children and families living with SPD. We decided to add this interview and part of Chynna's newsletter because it is an informative interaction between two moms regarding their daughters and SPD. It also gives an update on Meghan since the book was written. Chynna has also written a children's book about SPD and a memoir about her and her family's journey with SPD. For more information about the LILY WOLF WORDS Newsletter and Chynna's books, "Not Just Spirited - A Mom's Sensational Journey With Sensory Processing Disorder (SPD)," "I'm not Weird, I have SID," visit http://www.lilywolfwords.ca. Chynna and Jamie are quiet inspirational themselves. January 2009 Lily Wolf Newsletter As a lot of you know, I have a daughter, Jaimie, who was diagnosed with SPD when she was only two-and-a-half years old. Since then, I've done everything in my power to bring serenity, happiness, health and, most importantly, understanding for Jaimie. Unfortunately, there are still a few people who tend to judge Jaimie--and many children like her--for her external behaviour before they try to understand where it's coming from. Several experts on the subject of SPD, such as Dr. Lucy Miller and Carol Stock Kranowitz, have said SPD is "an invisible disorder" because it isn't obvious on a child's face or on their bodies. The only indication is when they react to their surroundings or the people in it and even then are labelled as "difficult" or "spoiled." Our only desire for this newsletter is to reach out with information and to help others reach out to one another. So, if you have any suggestions, any stories to tell, any "Applause" you'd like to give, any 'brain friendly' recipes to share... anything...please email us. In this issue, I have an interview with a mother with Diane Renna. She is a true inspiration for any mother with a child living with SPD. She wrote a wonderful book called, "Meghan's World: The Story of One Girl's Triumph Over Sensory Processing Disorder." It's a story about what it's like to be a little girl in a big scary world that causes her pain. The story is told in an informative way but in language everyone can understand. We also highlight the book in our "Product/Book Review" section. Of course, we have our "Talking with Dr. Lucy Miller" where we answer questions you want to know. Do you have a question? ASK IT!! And in "Parent's Eyes" I've talked about some important information parents need to have when helping their SPD child prepare for and cope in public school and everyday life. Enjoy the premiere issue and your feedback is so important (and it counts!) so please email us and let us know what else you'd like to see. Thanks so much for signing up. Peace, love and cyber hugs, Chynna (and Jaimie) Inside Scoop: An interview with Diane Renna: Author, mom and activist. I am excited about the interview for this issue. Diane Renna is a truly inspirational woman. She saw that something was truly wrong with her daughter, Meghan, and did everything in her power, not only to figure out the root of the problem; but also did everything holistically to save her. Enjoy this interview and I challenge you not to need Kleenex by the time you get to the end. Please read about Diane's book in the review section for details on how to get your own copy. Or, visit our resource section on Lily Wolf Words. ********* CHYNNA: Diane, thank you so much for finding some time to chat with us today. How old was Meghan when she started displaying struggles with her surroundings? What were specific things (behaviors/reactions) she displayed? DIANE: I first noticed something was different about Meghan when she was one year old. She had issues with her socks. When I asked the pediatrician about it, he just dismissed it. Looking back, there were many pieces to the puzzle that slowly started to add up. For instance, she would have trouble winding down and never really sat still unless she was coloring or painting. When she did sit down to watch TV, she would push her feet against the entertainment center. My husband had to take her for rides in the car to fall back asleep in the middle of the night often. She loved the swing. It wasn’t until her first preschool show at age three that we realized Meghan had a serious problem. It is this school show that was the inspiration for “Meghan’s World.” For a detailed account of Meghan’s journey to wellness, you can go to our website and read about it under, “About Us.”(http://www.meghanstriumphoverspd.com) CHYNNA: Thank you for the link to extra information. I hope our readers check out the details in Meghan's story. It's extraordinary. Was it difficult getting people to listen to you when you expressed concern for Meghan? What was your personal route in getting her into initial treatment? DIANE: My sister is a Speech Pathologist and she is the one who gave me the initial information on SPD. She told me to call our school district to schedule an evaluation. Meghan was denied services at her first evaluation, which was done when she was 3 1/2 years old. The evaluating OT did not specialize in SPD and I was not given an SIPT parent form to fill out. Eventually, her SPD got worse and started affecting her everyday life. We moved and got a new evaluation through our present school district. I brought a report about SPD my sister gave me written by Jeanne Ganz and requested that Jeanne evaluate Meghan. I also brought the video of Meghan’s preschool show to show the special education coordinator. Meghan started receiving help for her SPD when she just turned five years old. Luckily she missed the kindergarten cut off. At first my parents gave me a hard time about Meghan’s SPD. My father was in denial. I gave them a paper about SPD and my dad actually wrote comments on it saying things like, “no, not Meghan.” As you know, SPD shows many faces – your child can be fine one minute or day and then fall apart the next. Eventually, my parents came around and are presently supportive and proud of Meghan’s accomplishments. I never really asked or at least I don’t remember asking the pediatrician about SPD with Meghan. I kept our new pediatrician informed of the evaluations and everything we did. She listened and was supportive even if she didn’t quiet understand or agree with what alternative stuff I was trying with Meghan and my son, Michael. She did however, write an RX for Michael to get an OT evaluation. At the time, Meghan was always sick and had allergies and asthma…the doctor was more involved with this. Our website explains all of this. CHYNNA: I think it's so important that you found a supportive pediatrician--that is very important. What form(s) of therapy/treatment did you try for Meghan? What worked for her and what didn’t? Can you tell us why things worked or didn’t? DIANE: After Meghan’s second evaluation, she started receiving help for her SPD. She started an integrated preschool (from Jan. – July before kindergarten) five days a week, for half a day. She received OT and play therapy there. Her OT started her off with the Wilbarger Brushing Protocol and gave me some sensory strategies/diet for home. She also gave her the Therapeutic Listening Program to do at home. The OT tried to explain about the cod liver oil, but I wasn’t really too receptive. At the time we had many allergies and were on a restricted diet, not by choice. We were allergic to many foods. (Later, we decided to try the enzymes because we had nothing to lose.) When she graduated from preschool, I happened to have to take my son to an audiologist for a hearing test. I got to talking to the technician and decided to have Meghan’s hearing tested since she was still auditory defensive. Long story short, she evaluated me as well and Meghan and I did the Berard Auditory Technique in August before kindergarten. This training was amazing. It retrained our hearing and we still have positive effects from it seven years later. In kindergarten, Meghan continued OT once a week in school and saw Jeanne Ganz with her brother as a consulting OT. Jeanne was nice to fit us into her schedule when she could and she gave me things to do with the kids at home. Also, I went to a Sensory Integration workshop given by Diana Henery and learned strategies for home and school. I then made an OT room at home in a spare bedroom. Furthermore, I joined a parent on-line support group and learned more from other moms. I learned about leaky gut, diet, Epson salt baths, food allergies/intolerances, digestive enzymes, mercury toxicity from vaccines, etc. Back then, I did not concern myself with the why/how/when – my focus was on helping my daughter and my son. I will not go into detail here, but it is all on our website. Parents can get overwhelmed with too much information. You have to take it slow and at one step and sense at a time. Many traditional therapies, like OT and vision therapy, and many alternative therapies, like detoxing the toxins and yeast from my kids’ bodies, diet, enzymes, nutritionist, supplements, Epson salt baths, acupuncturist, and Reiki helped. You should try a therapy and if it doesn’t work for your child, it doesn’t work; but, if you try and it does work, you gain so much more for trying. At least you know you tried everything you could for them. CHYNNA: What profound advice. I hope our readers go to your website to get the complete story. What should parents look for in terms of therapists/treatment/tools when considering a route for their child with SPD? DIANE: Parents should definitely find an OT that specializes in SPD and that is SIPT certified. Yes, there are good, dedicated OTs who are not that extensively trained in SI who understand and make a difference, but I feel for the initial evaluation, it is important to have someone who is trained extensively and is SIPT certified. Once you have the evaluation, a dedicated OT who knows what they are doing will be able to help you. When considering a therapy, do the research beforehand and ask other parents/therapists who have done these therapies and then make the decision if it is worth doing with your child. CHYNNA: Thank you for saying this, Diane. Jaimie had three different people give us three different opinions of what direction to go in. In the end, we chose what was best for Jaimie and what worked in her comfort zone. What strategies did/do you practice with Meghan at home? At school? DIANE: Presently, I do not practice any strategies with Meghan at home or school. This is what people don’t understand. I wrote the book to validate children’s feelings and to show how Meghan overcame her SPD, because she truly has overcome her SPD. She is like a normal 12 year old, like night and day. She has been fine since First Grade, now she is in Sixth Grade. We actually cried at her first Kindergarten show because she was happily participating. She still takes digestive enzymes and will for the rest of her life. Recently, I realized at a workshop given by David Kirby (Evidence of Harm) that we have a mitochondrial disorder, which is a genetic disorder where the body has problems with its enzymes and digesting some proteins as well as detoxing toxins out of the body. The digestive enzymes help with this and so does OT/PT. Everything he discussed in this workshop is what I did with the nutritionist to help my kids detox, and I noticed some similarities in blood work that was done long ago, etc. It was like a bus hit me. All the knowledge I had accumulated over the years made sense and it was upsetting for me. I never chose to look into the why/how/when, but when my youngest son (now 2 1/2 yrs old ) started to get sick after he was healthy after each vaccination, I had to stop and think. He reminded me of Meghan and Meghan did have a reaction to the DTP vaccination. He actually got whooping cough after his second Dtap vaccination. With that, I went and looked back at Meghan’s records. One day after her reaction to the DTP 11/2001, she was diagnosed with severe SPD…hum, so I thought well, that couldn’t have been it if she just had a reaction the day before…I went back further and noticed that she had the MMR and only the MMR 1/2201 and then in 4/2001, she had peed a funky thing and started to get sick, etc. Her SPD and health started to get worse after that. Mind you, I don’t feel that the vaccinations were the total cause. I had tuna fish almost every day when I was pregnant with her, I had mercury filling, we lived in a mold infested house for two years. All of these factors, I believed triggered the mitochondrial disorder in Meghan, Michael and myself. I never could understand why all of a sudden I had food allergies/intolerances like my kids and why I had to take enzymes as well. Gavin also takes digestive enzymes. After this workshop and some researching on the internet, things just all came together and made sense. There are over 40 mitochondrial disorders and they can be triggered at anytime in a person’s life. People have noticed a family connection with SPD and Alzheimer’s, Parkinson’s and these are mitochondrial disorders and genetic. Thyroid, heart disease and type two diabetes are also types of mitochondrial disorders. I believe more research into these mitochondrial functions will prove something. I have a feeling, and this is just my opinion, that this mitochondrial dysfunction/pathway has something to do with SPD – if not the detoxing part, something with the functions of this part of the brain and connections within the brain. They are researching mitochondrial disorder and Autism Spectrum Disorder. The recent Hannah Polling case in which it was conceded that vaccination reaction caused her mitochondrial induced autism is only the beginning. Please realize that the above are just my hunches on the subject. I encourage people to educate themselves about vaccination, therapies and any other important decisions in your life…if one thing I learned, is that it is best to make educated decisions about the important things in your life. I debated whether or not to mention this, but this is the newest edition to our journey. Whether SPD and mitochondrial disorders have any relations, I don’t know. But, I know that Meghan had SPD and was very sick at the same time with allergy induced asthma, food allergies/intolerances, skin rashes, etc…whether these were just two coinciding events that happened at the same time or somehow related, I couldn’t tell you. CHYNNA: Wow, that is very information. I appreciate you sharing all of that with us. Let's discuss school for a moment. Our girls had very similar experiences in preschool (meltdown and curling up in a ball to “escape”). What can teachers do to help our children to attend more and feel better in school? DIANE: Teachers can try and give kids a heads up of the day’s events. SPD kids do better knowing what is expected of them throughout the day. They can put them in a suitable seat in the class – perhaps next to a quiet child or near the teacher’s desk. They can also take frequent breaks to the playground with the class, etc. www.ateachabout.com is Diana Henry’s website and it has excellent strategies for the classroom and home. I am happy to say that she is coming to our school in March to give our teachers a workshop about bringing SI into the classroom. CHYNNA: Thanks for the link. One thing I’ve found that’s so important is focusing on the positives; things they are good at. I know you did this with Meghan too. How did this help her in therapy, at school and in regular life? DIANE: SPD comes with many gifts. They usually are more perceptive and aware about the world around them. Just encourage, support and listen to what interests your child – whether it be sports, dance, music, art or whatever. Meghan is gifted with music and plays the flute beautifully. She also draws and paints very well. Sticker charts and positive reinforcement worked well with Meghan. Any time I wanted to change a behavior or to encourage her to try something new, we would make a sticker chart and when she filled up the chart, she received a surprise. CHYNNA: That's wonderful! Jaimie also has incredible artistic and musical talent. Amazing, isn't it? Okay, please tell us about your fantastic book, “Meghan’s World.” Why did you decide to write it when you did? Where did it sprout from? DIANE: “Meghan’s World” was inspired by Meghan’s first preschool show and her reactions before, during and after the event. I wanted to give a voice to SPD kid’s feelings. I wanted to validate what they were going through and give some insight to parents, therapists and teachers. I wanted SPD kids to feel that they are not alone and that there is hope and help for them. I wanted to give parents information about the traditional and alternative therapies that helped Meghan overcome her SPD. I wanted to put all of this information in a simple book that gives parents the tools to investigate at their on pace. Way back, I had to read so much to learn one thing about SPD. There wasn’t as much help out there as there is now. I wanted to share the resources I have learned over the years and keep it in one spot. We wanted to give hope and inspiration to children living in an over stimulating world. SPD can be a jail keeper to a family’s way of life – we wanted to show others how to break free and be all they can be. CHYNNA: I hear you, Diane. I wrote my book after one child teased Jaimie for reacting adversely to sand and another child's voice at the playground when she was younger. The child in question even called her "weird." I wrote the book to help Jaimie find the words to explain her disorder, and her feelings, to others. BRAVO on your book too! You know, when Jaimie was re-assessed at three-and-a half, we were told to put her on anti-depressants and anti- anxiety medications. Of course, we chose not to. I applaud you for using natural, holistic approaches for helping Meghan. Can you tell us why you chose this path and how it’s helped her? What specific things did you do? DIANE: You asked before what worked and did not work. What did not work, for us, was all the antibiotics, steroids, allergy shots, allergy medicines. I would read the ingredients and see the side affects and I was not happy. I never could understand why people would not want to try a more natural route before going to drugs. Most SPD kids get worse with some of those drugs. Some kids they help. In the end, it should be an educated decision made by the parents and their doctor. When you are at your wits end, you either become an alcoholic or become more spiritual. We became more spiritual. I followed my gut and guidance from God. Many kids with SPD, autism, ADHD are sensitive to environmental toxins, food additives and dyes, gluten and casein. It is as if these kids want a natural and whole environment. I never understood why humanity thinks they can make things better than what God has created. Do we really need bigger and better apples and modified corn and wheat? Why are we shooting antibiotics into our meat sources?? These kids do better with wholesome, organic food without dies and unnecessary additives. They have a hard time breaking down these unnatural products and do much better once they are removed from their diet. It wasn’t until we detoxed and healed our digestive system, started the enzymes that we became healthier. Meghan started to grow and gain weight and much of her anxiety went away when she started the digestive enzymes. The psychologist she was seeing at the time told us that she did not have to come any more. I think she saw her four times before starting the enzymes. Meghan sees her pediatrician regularly. She supports my decisions on how we raise our children. She may not have always agreed with or understood our decisions, but she was respectful and supportive. She has witnessed Meghan’s transition first hand and has a close relationship with us. We are lucky to have her. We go to the acupuncturist, naturopath and opt for natural choices. We eat organic food. I am also a Reiki Master, which is hands on healing and energy balancing. We keep healthy; we take digestive enzymes and exercise. We listen to our children and they can come talk to me or my husband anytime. We listen to their fears, joys and accomplishments. CHYNNA: FABULOUS! I admire you so much. We too are taking more holistic approaches by slowly changing/adding to Jaimie's diet. But she's so picky and eats so little we're trying to be careful so she won't refuse to eat again. But your route is inspirational! Can you tell us how Meghan is doing today? DIANE: Meghan is doing great today. She is in Sixth Grade and is enjoying all the special things the school has planned for her class before they move on to middle school. She loves to dance, play the flute and be with her family and friends. So far, so good, if in the future we need to revisit a therapy, we will. I am not sure how long the Berard AIT lasts, it has been seven years…if this is something we need to revisit in the future, we will. CHYNNA: I'm so happy to hear she's doing well. One last question, Diane. Can you offer other parents any pearls of wisdom for who are right at this moment at the beginning stages of getting help? What do you want parents to know who’ve just heard the words, “Your child has SPD.” DIANE: First thing, there is hope. When you first hear those words, you are overwhelmed. You are also told that there is no cure, only treatment. We are evidence that you can overcome SPD. You are in the driver’s seat of your life. Educate yourself via my website, there are tons of helpful links here, http://www.meghanstriumphoverspd.com I am always meeting new people and adding new things. Take a deep breathe and take things one step at a time. Ask questions and put the time into helping your child. It is a lot of work, but worth it in the end. There is a rainbow behind the cloud and you will see it some day. Try and take some time for yourself as well to recoup. These children are special and have many gifts. Our family became closer and we learned to appreciate the simple things in life. We became more spiritual and this journey has taught us a lot about ourselves and each other. I have learned to trust my motherly instincts and guidance from God. If it doesn’t feel right, don’t do it. If you feel a strong pull and warmth/presence in your heart to try something, then try it. ************ Phenomenal advice from a mom who's been there. In our case, Jaimie still struggles with many sensory issues, even with all the changes we've made. But, as Diane said, SPD is different for each child. One thing you can hold to your heart from Diane's words is that there is hope. You just have to keep searching and trying things until something works for your child. Please visit Diane's site and learn more about what she's done to help Meghan. And, if you can, add her wonderful book to your library! Talking With Dr. Lucy Miller Here's some awesome insight into a DSM committee meeting Dr. Miller went to in June of this past year. If you have a question you'd like to ask Dr. Miller, email us and we'll see if we can get it answered for you. June 2008 We have just received feedback from the DSM committee. The good news is that the committee is obviously taking our application for recognition of SPD very seriously. The long and extremely detailed letter from the DSM committee chair, Dr. Danny Pine at the National Institutes of Health, clearly showed that we are regarded as credible scientists who have submitted an important application to consider as a separate and valid diagnosis. At the same time, it is evident from the committee's letter that the standards for recognition of new diagnoses in the DSM are much more rigorous than they were in the past. Dr. Pine's preliminary letter suggested that the DSM committee will need to see much more science before they will include the disorder in the next edition. Fortunately, we probably have until 2010 to conduct the studies they want to see. Also, because of the collaborative work groups we have mobilized in the last several years, we are no longer alone. Ultimately, however, funding (money!) will determine how much research is completed and how thoroughly we satisfy the DSM committee's requirements. We can get a lot done in a couple years if we have enough money. Overall, we are encouraged. We never expected the committee to embrace SPD without asking for more research. They could have rejected our application out of hand, and they did not. Yes, they raised the bar, but at least we're still in the race. We know that they are taking the application to recognize SPD very seriously, and we know what we need to do next. Onward and upward! Parent's Eyes: This month, I wanted to focus on what parents can do to help their children in the classroom--for those who plan to send their children to public school. The week before Christmas break began, I volunteered in Jaimie's classroom to help with gingerbread house making. With Jaimie's tactile sensitivity, I knew it would be a challenging day for her but I thought she'd be able to do it. Her teacher made me help only Jaimie and basically gave her the model house she did half of when showing the students how they were going to prepare their houses. I got the impression this was a regular way to "help make things easier for Jaimie." There are days when Jaimie's sensitivity is through the roof even before we leave the house to walk to school in the morning. Our house is busy, loud and nuts...we do have four children in total, after all. And if Jaimie doesn't get enough sleep to boot, things can be rough. She's never had a full-out meltdown in school--that is one thing she fears even more than certain tactile or olfactory sensations: losing control. The second we walk out of her classroom, she speeds off to the field we walk across to our townhouse and spins, does sommersaults, and rolls in the grass. This is how she releases some of the anxiety she's kept in from her morning. Although these are great coping strategies, it shouldn't have to be like this. It doesn't end when she gets home either. She can be rather aggressive and introverted until her insides are calm again. So, what can we do? Tell the teachers. First, leaving the child completely alone doing only what he or she is most comfortable with isn't helping them much. Yes, they'll be calmer but they won't learn how to cope with new sensations because they aren't being introduced to them. But there's a way to do it. Teachers should talk to the class, telling them about the upcoming event: what will happen, the entire process and what tools will be used. It's best to direct the entire class instead of only the effected child in order to avoid isolation or embarassment. Jaimie, for one, likes to be included with everyone in this way and not singled out. Next, get the child to ask any questions he or she may have. Getting them to "use their words" is very important. Teachers should be sure to talk to the child the day of the event to check in with how he or she is doing to be sure they can handle the sensory stimulation. A great way to put the child at ease is to get her or him to watch other students to before them to see how the event is done. If the child feels uncomfortable, see if there's an alternative way to participate (eg: using plastic gloves for a wet clay project may be good.) Finally, the teacher should be sure the child has a way to "come down" from the stimulation. Whether it's quiet time with a book , floor activities, running around in the gym or, as Jaimie does, sitting in an IKEA egg with the door pulled down to calm her insides down. Most importantly, parents should know what events will be coming up so it can be discussed at home. Having that strong communicative connection between home and school is vital and is so helpful. |
| January 2009 For an update on Meghan & to read an interview Diane did for Lily Wolf Words, scroll down after the "About the Book" information. |
A must read for parents! "Meghan's World"
validates children's feelings and "Not Just
Spirited" validates parent's feelings. Both
books provide great information for all. Both
books were inspired by the love these moms
have for their daughters and the compassion
they feel to help others.
validates children's feelings and "Not Just
Spirited" validates parent's feelings. Both
books provide great information for all. Both
books were inspired by the love these moms
have for their daughters and the compassion
they feel to help others.