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: She sounds a lot like my Jaimie. WOW! Thank you for the link to more information on your website. 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.
Eventually, 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: Your father’s reaction must have hurt. I completely understand what it’s like trying to explain to others about SPD (or that there’s a problem) and feeling as though no one can see it but you. But it’s wonderful that they came around and are so supportive. 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 Henry 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, 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: Your tireless strength and determination in finding the best treatment route for Meghan is so inspiring, Diane. I too felt overwhelmed at first until I found other parents out there who understood. 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: That’s fantastic advice, Diane. Something I think all parents seeking therapists should bear in mind. 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 II 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: Thank you for your insight. Honestly, these are very important things for parents to research and be willing to stay open-minded about, even if they seem overwhelming. There are some cases of children who have SPD or sensory sensitivities that are triggered by the very things you’ve mentioned. Let’s talk a bit about school. Jaimie had very similar experiences to Meghan’s 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 giving 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.
http://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: Great advice…all things we’ve tried practicing through Jaimie’s school. 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: What an awesome idea! Stickers can be a great reinforcement, especially when they pick out the ones they really like. 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: The book is fantastic and when I read it to Jaimie, she loved it. She keeps it right beside her own book! 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: I’ve heard wonderful things about the Reiki practice. (Sigh up for our latest issue of "The Gift" for an insightful interview on the subject.) Thank you for going over a lot of the natural approaches for our parents who are interested in that route. I know you touched on this a bit earlier but, I have to ask, 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 how well she’s doing. Good for her! 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.
CHYNNA: We thank Diane for her wisdom, her inspiration and for her candidness on Meghan’s journey to recovery. Please be sure to check out her website to learn more about their beautiful story. As well, we’ve created a page for her family and Meghan on our “Inspirational People” section on our website. We’ll definiately be keeping up-to-date with Diane, Meghan and the rest of the Renna family.
Presently, the Renna family is happy, healthy, and enjoys doing the things they were not able to in the past. SPD is no longer a jail-keeper to their lives. Diane and her family hope Meghan's story will inspire and heal other families dealing with SPD.
In addition, I wanted to let you all know that my memoir called, "Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder (SPD)" went to the printers on Friday and should be released within the next week. We'll definitely keep you all posted. (And, yes, that is Jaimie on the cover. =) )
