|©2007 Diane M. Renna * Indigo Impressions * All rights reserved *
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
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.
now available on
and at Amazon.com
or your favorite
bookstore...just ask if
you don't see it &
they will be able to
order it for you.
|©2007 Diane M. Renna * Indigo Impressions * All rights reserved *