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Diane M Renna

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About Meghan & Her Triumph over Sensory Processing Disorder
By Diane M Renna
Tuesday, September 11, 2007

Rated "G" by the Author.

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Read about Meghan's long journey to wellness and triumph over her Sensory Processing Disorder. Learn about the early signs and what helped Meghan.

MEGHAN’S WORLD:
THE STORY OF ONE GIRL’S TRIUMPH OVER SENSORY PROCESSING DISORDER
By Diane M. Renna, Illustrated By Regina Stark, With Illustrations By Meghan Renna

* About Meghan *

I first noticed something was different about Meghan when she was one year old. I can remember telling the pediatrician that her socks had to be just so. He felt there was nothing wrong. She was a happy child. Meghan spoke early. She never really crawled and walked at ten months. You could have a conversation with Meghan at two years old. She wrote like a kindergartener by age three. Meghan was a smart child.

After leaving my job as an administrative assistant in NYC to become a stay-at-home mom, I decided to make the day go faster by “playing nursery school teacher” with Meghan. I always wanted to be a teacher, so we spent the day reading, coloring, drawing, painting - doing anything and everything creative. We went to the park and for walks around the neighborhood. We had play dates with my friends and their children.

When I became pregnant with my son Michael, my sister, Nancy, suggested putting Meghan in a summer preschool program where she worked. My sister is a Speech Pathologist and had worked for an integrated preschool at the time. There were no kids in our neighborhood to play with, so I thought this was a great idea. Meghan was two and a half years old.

On Meghan’s first day at preschool, she bolted from the classroom in search of my sister. She was hysterical. The second day, Meghan was hysterical again and was told to stay on a blue mat. When I picked her up, she was curled up in the fetal position on the blue mat. Needless to say, there was no third day. I felt maybe she was too young. I did not like the idea of the blue mat and the fact that they did not hold the children when they got upset.

Soon after, I sent Meghan to a preschool where a childhood friend was sending her son. The teachers were very loving and affectionate with the children. I was able to stay in the classroom, and then later, the hallway until Meghan felt comfortable with me leaving. She liked going to this preschool. She was almost three. Meghan was shy, but she seemed to be having fun at school. She loved to learn and do creative activities. However, at the school’s spring concert, Meghan could not handle the whole situation. The lights, the noise, the people, walking close in line. She acted-out during the show. She hit herself, pulled at her dress, covered her ears, stood up and yelled “Stop!”. It was very upsetting to watch. I remember another mom in the audience saying, “It looks like she hates herself.” People were laughing. This experience was not what we had envisioned earlier that day – none of us.

At home, Meghan could not sit still. She was always on the go. She did not interact with the TV. She only ate cold broccoli and pasta and she ate it on the go. She drank milk all day long (later we found out she was allergic to milk). She had some issues with her clothes, but not too bad. I thought some of her fits were due to having a new brother around. Meghan also had problems with understanding emotions and body language.

At this time, my sister gave me a book about behavior, and in this book, was a small paragraph about Sensory Integration Dysfunction. I thought, “I think Meghan has this”. I told my sister, and then called the local school district and made arrangements for an evaluation. I did not think she would qualify for services, but wanted some direction. It turned out that the evaluating occupational therapist did not specialize in Sensory Integration Dysfunction (now labeled Sensory Processing Disorder – SPD). In fact, later I learned that she did not believe in SPD. Needless to say, she was denied services and I did not get much help. The evaluating psychologist understood SPD and gave me some information.

Time past and Meghan got worse. She continued in the same loving preschool. However at the next spring concert, she sat in the back row with tears in her eyes, holding everything in. I did not know what to do. The summer went by and in the fall, she started the same preschool again. She was four years old. Her birthday is in December, so she just missed the Kindergarten cut-off. Intellectually she was ready for Kindergarten, but socially she was not.

Meghan’s sensory issues started affecting her every-day life. Meghan could not tolerate many clothes and it took hours to get dressed. She bumped into things and would not feel it or she would scream in pain. At this time, we moved into a new home in a nice development with tons of kids. She was sick often. She had many earaches, had skin rashes, and eventually wound up with asthma and food allergies and intolerances. One winter day, I went outside and Meghan was playing in the sandbox with sunglasses on, a short sleeved shirt, and no jacket. When I went over to her and felt her arm, it was hot. We did not go out to eat because Meghan could not handle the noises of the restaurant – she would hide under the table and cry. Life was becoming unbearable. She could not handle birthday parties, family parties, and school. The teacher started noticing things as well. She told me that Meghan was not enjoying the activities she used to. At free time, Meghan would sit at a table in the back of the room and only interact when a child came up to her. She was constantly clearing her throat.

At this point, my sister, Nancy, gave me a report written an occupational therapist (OT), Jeanne Ganz, about Sensory Integration Dysfunction (SPD). The more I read, the more it described Meghan. I realized she had problems with sensory modulation, sensory processing, visual processing, auditory processing, and that she was tactile defensive and auditory defensive. I felt she had Sensory Integration Dysfunction (SPD) and bad. I contacted the Special Education Director at our new school district and made an appointment with her. I told the Special Education Director my concerns, showed her the video of Meghan’s spring concert, gave her a copy of Jeanne Ganz’s report, and requested that Jeanne evaluate Meghan. Jeanne specialized in SPD. It was then that Meghan started receiving help for her SPD.

Eventually, Meghan started a new integrated preschool. Her school OT told me about therapies that would help Meghan. Meghan saw Jeanne Ganz as a consulting OT along with Michael because he started presenting some sensory issues as well. Michael was more of a sensory seeker; Meghan was an avoider, but seeked the things that comforted her. I went to a seminar given by Diana Henry MS, OTR/L and learned how to setup an OT Room at home and learned helpful strategies. I joined an on-line support group. I read many reports and many books. I learned all I could. My sister called me an “OT Wannabe.” It was a lot of work, but soon Meghan started feeling better and we were able to have a normal life.

I need to mention that we had rented a house for two years (when Meghan was 2-4 years old) and we did not realize it was infested with black mold. I believe this gave Meghan (Michael and I) a leaky gut, which leads to food allergies and intolerances and made Meghan’s sensory issues worse. When you take antibiotics often, you can get an overgrowth of yeast or bad bacteria in your digestive system and this causes food allergies/intolerances and can make some kids hyper and/or aggressive. Karen DeFelice’s website and book (http://www.enzymestuff.com) explains about this in detail. Karen actually e-mailed me when I joined the on-line support group and explained this to me. The information in her book was very helpful. Another Mom from the on-line group, Mary W, was helpful as well. I learned a lot from other moms and their support was great. Meghan also had a reaction to the DTP shot. We went to a nutritionist to heal our guts, detoxify, and to balance the vitamins in our systems.

However in 2006, we went to an acupuncturist and did the NAET allergy elimination technique (http://www.naet.com), since we still had issues with foods and allergies. I highly recommend the NAET. It balanced our systems and changed our reactions to foods and outside allergens.

Children and adults with sensory issues often have food allergies/intolerances, which present themselves in behavior, earaches, sinus problems, eczema, headaches, and/or asthma. As an infant, Meghan was lactose intolerant. Presently, my son, Gavin, is allergic to milk. He is on soy formula. Some people are just more sensitive to foods and additives in them. Kids with sensory issues need diets with wholesome/organic foods because their systems are sensitive and can not breakdown the additives and hormones. Many children with sensory issues, autism, PDD, ADHD, etc. have sensitivities to casein, gluten, wheat, food additives and dyes. A lot of their behavior is due to these allergies/intolerances. We still take the digestive enzymes and they have been a great help. In the future, we hope to take the enzymes only once or twice a day, like a vitamin, instead of with every meal. We eat organic foods as often as possible.

Meghan transformed little-by-little, like a butterfly coming out of her chrysalis. You would never know she had any issues. We look back in amazement at how far she has come. This is why I decided to write Meghan’s World. Meghan has seen great success and is very happy and healthy. We wanted to share her story so that others can become healed as well.

Meghan’s World describes the therapies Meghan did to help her and has a “Therapies and Helpful Information” section where you can learn more about these therapies. SPD is often misunderstood, misdiagnosed, and hard for people to understand. Many family members are not supportive or in denial that there is a problem. My father wanted me to mention how he was in denial and how he gave me a hard time. It took a while for him to come around. It was not until he saw some improvement that he realized how bad Meghan really was.

Children can learn to manage their sensory issues. They can learn what they need to do to self-regulate themselves. They can learn to advocate for themselves. They can have a normal life; a life that makes them proud, confident, and happy. They are special and will make a better future for themselves and the world around. They know it is time to change old systems and create new systems that work for everyone.
 

       Web Site: MEGHAN'S WORLD official website

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Reviewed by Mary Coe 2/4/2008
Thanks for sharing Meghan's story and her success. Very interesting story. Enjoyed the read.
Reviewed by Diane Renna 9/11/2007
The story about Meghan describes what Meghan experienced with her SPD (sound sensitivity (she couldn't tolerate the classroom or restraunt because of the noise), not looking people in the eye, tactile defensive (had problems with clothes - tags, seams, jeans, underwear, etc). Kids with autism and other social and learning disabilities have dysfunctions in sensory integration - most kids with autism severe - this is why they are not social or get overstimulated. SPD is a very complex, misunderstood and misdiagnosed neurological disorder. Not all kids will look the same or act the same - it is ever changing - one minute the kid might be blaring the radio and the next, covering their ears and complaining because of the noise from the lights. In the beginning of my book, I have "A Brief Explanation", which I got permission to quote from Meghan's OT's book, "Including SI for Parents" by Jeanne Sangirardi Ganz, OTR/L BCP (which is a great book for understanding and ways to help your child) - I will post her quote below for better understanding:

"Sensory Integration is a normal process by which the senses provide information about our bodies and the world around us. The brain and the rest of the nervous system take that information and organize it so that we can learn, move, and behave normally. This is sensory processing, or sensory integration. All people process sensory information, some more efficiently than others ...

"When the normal process of sensory integration is not efficient, we label it sensory integration dysfunction. This simply means that parts of this processing system are not providing information reliably. Sensory Integration Dysfunction (often labeled DSI or SPD)can interfere with an individuals ability to attend, develop motor skills, regulate behavior and organize tasks, complete self-care skills (for example, dressing and eating), devlop visual and auditory skills, and to feel comfortable in the environment."

The book I wrote, "Meghan's World" is a story based on my daughter's first preschool show. It shows how she can't find anything comfortalbe to wear, has a meltdown, can't sit at the dinner table and only eats cold broccoli and pasta, then how she is excited for her show, but is scared, a kids bumps her arm, it hurt, then the noise hurts her ears, she has a meltdown - it basically validates kid's feelings and shows parents/teachers all of the outside stimuli that contributes to the child's breakdown or withdrawn behavior. The other part of the book briefly mentions the therapies that helped Meghan and it has an section with links for parents to learn/investigate more. Meghan is perfectly fine now and we want to share her success. There are many alternative therapies available, but not widely known by parent, teachers, therapists.

Other examples of autism spectrum disorders are dyslexia, hyperlexia (can read young, but not understand what they read), ADHD, OCD. Many kids will bang their head because of sound sensitivity. It all is very complex and hard to explain.

I hope this helps. Thanks for your interest.
Reviewed by Karen Lynn Vidra, The Texas Tornado 9/11/2007
I still don't understand sensory processing disorder or all the disorders tied with autism. While this is a very good article, I am still confused about autism and the spectrum disorders. Enlighten me.




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