IEP - transition

Today is the day of the IEP transition to Kindergarten and I wrote this letter to be used as a document providing some insight information for the new teacher and school aide about my awesome child.
Attachment to IEP-Letter to Paraprofessional/Aide

Hello!
My name is Sophie...

A little background information about my condition:

I weighted just two pounds when I was born. I was premature and spent three months in intensive care at the hospital before I was allowed by doctors to go home. I went home on a heart monitor which I wore 24 hours/7days a week for several months. The machine alerted my parents if my heart stopped beating so that my life could be saved. Fortunately, my heart problems resolved in the later months before I turned one year old and then I was diagnosed with cerebral palsy, CP for short.

CP is a neurological condition that affects my body and daily living in several ways. In my case, CP causes muscle spasticity which results in some impairment of certain motor skills such as the ability to walk.

Spasticity: A condition in which certain muscles are continuously contracted. This contraction causes stiffness, tightness, and sometimes even involuntary movement of my legs and hands.

Due to CP:

1- I CANNOT walk, kneel, stand, or sit independently without support.

2- My muscles are much weaker than those of other kids my age.

3- At times I may drop items on the floor unintentionally simply because my hands get tired.

4- I do not enjoy most foods so my mom packs my lunch everyday which always includes a nutritional shake (known as BOOST). I drink it with a straw because it is much easier for me. Covered drinks are best for me and can help to avoid unnecessary stress and cleaning due to spills. I do not like to be forced to eat.

5- I also need help opening and closing bags, containers, etc...

Due to my limited mobility I need help reaching for items on the floor or otherwise out of my arm's reach. Items can include, bottles of water, lunch, pencils, crayons, paper, books, etc...

I am 100% dependent on someone for my mobility. What does this mean?

I need someone to help me:

1- Get into and out of my wheelchair.

2- Carry me to the toilet.

3- Get into and out of chairs and playground or other equipment.

4- Clean up items out of reach such as on tables or floors.

When I feel happy or scared my muscles may become spastic. My legs may stretch out involuntarily and I will need help getting my feet properly placed back on the footrest.

Sometimes I slide to the front of my seat due to spasticity so I need help or to be reminded to slide to the back of my seat to feel comfortable and maintain proper posture.

It may be tempting to adjust my chair or other assistive devices to make improvement, however not adjustments or additions can be made to my wheelchair or devices without written authorization from Mom, Dad, Therapist, and/or Doctor. Everyone of my devices and each piece within them is custom made for me by medical professionals and cannot be altered without consulting one of the people above mentioned.

Sometimes I become scared and need positive encouragement. I thrive on positive encouragement because I am a happy girl.

My Moto:  "EVERY DAY, IN EVERY WAY, I AM GETTING BETTER AND BETTER".

My parents' and doctors' goal for me include increasing my self esteem and independence in order to become a successful and independent adult in the future. Please do not exclude me from activities that other kids my age are enjoying. Instead, look for ways to adapt those activities to my abilities and increase my success. Do not tell me that I CANNOT do something because of my disability. Instead, look for alternatives that could satisfy my need for adventure and to have fun.

I am very smart and CAN/SHOULD follow school rules. These rules may include staying quiet when necessary, taking tests, writing, reading, playing, and sharing toys with others.

I am as NORMAL as any other child and I have never been told otherwise by parents or anyone else. I am NOT sick and do not like being called disabled. I enjoy being read, coloring, and talking up a storm about all that is going on in my amazing imagination. In my mind, my possibilities are endless. In my mind I CAN and WILL become anything and everything I desire.

How I am curing psoriasis...

If you or a loved one suffers from psoriasis you probably heard that it has no cure. I struggled with psoriasis for about 15 years, since my early twenties. My skin seemed to get worse when I was at my heaviest. Just three months ago my weight and my skin were out of control. On thing was to feel fat, but another was to feel ugly and fat. My arms and hands were covered in oozing blisters. One of my knees had a huge patch and there was another on my foot. To make matters worse, there were patches beginning to appear on my face. I was desperate. I had used steroidal creams in the past and they would remove the small red patches but this time things were worse. I am also still breastfeeding my two year old daughter, so steroidal creams were out of the question.

Armed with hope, I went to the dermatologist, hoping to be prescribed something that would remove psoriasis from my skin even just slightly. I was itchy all over and in pain. By now, my knee and elbows were beginning to hurt as well, which probably meant that I was developing psoriatic arthritis.

I was devastated when my dermatologist told me that I had to stop breastfeeding in order to receive any treatment at all. I made a plan to stop breastfeeding and return in five weeks.

I was not ready to stop breastfeeding and neither was my little one. I felt horrid when I had to refuse giving her milk. I felt sad, depressed, and hopeless. The dermatologist had also suggested biologics. After researching online, I found out that biologics suppress the immune system, essentially shutting down psoriasis but also shutting down the immune system completely. This meant that if I chose the biologics treatment, I would become a welcome house for any and all viruses available in the environment. I have three kids, no help from family, and I one of my kids needs my help at all times for mobility.  I cannot afford to get sick. I knew that there had to be another solution to clear my skin. I looked at pictures from before and saw my beautiful skin. That became my focus in order to help myself improve my health.

I researched online forums, and libraries when I came across Dr. John Pagano's book, Healing Psoriasis. I read other people's success stories and became inspired to follow Dr. Pagano's diet exactly. That was no easy task. My weight was out of control and so were my eating habits. I was having ice cream and sweets like there was no tomorrow. I was completely addicted to sugar and sodas. Since pretty much every diet I had ever done in my life had been a failure, I did not even bother to buy the book. I researched what was on the book online and began my journey to "try" this new diet plan. Little did I know then that I had underestimated my self esteem and that what pushed me over the edge would bring my healthy body back. What was happening to me, was actually a blessing in disguise.

I began the diet the next day, and then we went to South Beach and I had a burger and a shake. There went another failure. I looked at my skin, I saw my fat self in the mirror and I was not having it anymore. I began the diet again the next morning. For the next three months since then, I have eaten the same thing for breakfast with some variations in toppings, one cup of cooked oatmeal topped with one teaspoon of honey or agave nectar. My journey to healing was about to begin.

I completely removed all white and brown bread from my diet. Food such as pasta, white rice, pastries, ice cream, and desserts were completely out of my food choices. The diet was very restrictive, even more than Atkins, or Keto. Following the plan was not easy but I was determined to feel great and have beautiful skin again so I stuck with every single recommendation regarding food choices. I did not drink the recommended teas, because of breastfeeding.

Three weeks had gone by and no results. Every day was a challenge. I cooked yummy foods for my family. I could not even have a little taste. My skin was actually getting worse. I went back online for answers and found out that it was normal for skin to flare to its worst before beginning to clear up. I was still very itchy and in pain but one day I decided to get on the scale and boy did that encourage me to keep on going. I had lost 20lbs! My clothes began to feel loose and I was feeling great in the inside. My knee an elbow pain had completely disappeared. My skin will clear up soon, I knew it would. Worse case scenario, I would lose a lot of weight and feel healthy inside. People began to comment on my appearance and how great I looked, despite of the psoriasis in my skin.

After two full months of following the healing psoriasis diet plan by Dr. John Pagano, I still had not read the actual book. One day, I saw my hands had begun to clear up. Two days later, finger by finger and all over my hands I saw completely clear skin. My skin was still pink from the scars but it was free of psoriasis. The patches on my knee and foot were now white, no longer red and looked like they were about to disappear any minute now. My elbows and arms were no longer red. Psoriasis was almost a thing of the past and I was already planning on eating my first sweet meal too test it out.

While on vacation, we went to a Brazilian, all you can eat restaurant and I finally had a delicious meal after two months of starting the diet. I was surprised that my skin was still looking great the next day. I began getting back to my old ways and making milkshakes at home. Although I was more aware of my eating habits now, I still craved sugar. My knees began to hurt again. A few days later, my skin began to itch again and I could see a glimpse of patched red skin coming back. It was time to stop and heal myself again.

This time, I have purchased the book for motivation. My skin still looks really great, compared to how it all started three months ago. This time, I am determined to change my diet for good. I am planning on cheating on my birthdays and maybe some holidays. All and all, I have lost 25lbs. Surprisingly I did not put on any weight at all. For food choices or recipes, comment below. If you suffer with psoriasis and obesity, give this diet a try and you may be surprised and amazed at the results. I will make another post with the list of foods allowed and some recipes.

Thanks for reading...

While you are five...

Dear daughter, you are five years old. Many years ago you were born premature. At 27 weeks gestation, you were only 2lbs at birth. you spent many days in the NICU and somewhere along the days, not sure when, your brain failed to turn on the walking switch. At first, it was really hard at to accept the fact that you could not sit, or crawl, or walk. But we don't really care now about the fact that you are five and at confined to a wheelchair full time. I have read what feels like a million books, looking for help and answers. From helping you improve your physical ability to helping me accept your inability to be independent, and everywhere in between. We have traveled to many places over the years, looking for help. Today, I lean more toward helping you achieve the absolutely amazing girl that I know you will become, whether you walk or not. A few years ago, I began to teach you to read, and at three years old, you read like a first grader. You are truly gifted, no one can believe that you are only five and everyone is delighted to hold a conversation with you. We are truly blessed to have you, we are blessed that we can hear your beautiful voice every day.

Dear daughter, you are a bright girl and I am thankful that you are in our lives. You are absolutely perfect! I will continue to teach you everything I can, so that you can become an astronomer, and veterinarian, just like you want. One day you will roll your wheelchair, or walk down the red carpet to receive your college degree at Harvard University and then I will cry tears of happiness because a world of opportunities will open up for you. We talk about it all the time. You will go to Harvard and then you have decided that you will live in England. You are just five but your already made up your mind about this and also the fact that you will have three kids named Summer, Winter, and Peter. The world is yours and I will help you become a successful woman and to raise awareness so that any parent of a child who is confined to a wheelchair will think that walking is over rated and not at all necessary to achieve success and happiness. I will continue to educate myself in order to help you become independent. I will continue to read books on physical therapy, brain plasticity, research, and scientific breakthroughs. Most importantly, I will educate myself on how to believe in our abilities to overcome adversities and seeing the possibilities in every one of life's situations. It is my job to be positive and be happy and teach you to do the same.

Dear daughter, you make us the happiest people in the world. Thank you for being perfect, thank you for being you!

Love,
Mama

Shriner's Hospital for Children in Tampa, FL

Contrary to what many people believe, individuals with disabilities do not automatically qualify for monetary benefits and/or Medicaid (no cost medical coverage). We are a family of five with one income earner, and believe me when I tell you that our monthly income is just enough to cover our expenses. Our child is one hundred percent dependent on others for care and mobility, and yet, she does not qualify to receive medical care through Medicaid or any monetary benefits at all. Thankfully we do have private insurance, which we pay for (over $500 monthly, in Florida). Our insurance does carry very expensive deductibles for assistive technology and basically all the equipment that is absolutely necessary for my daughter. For example, I was quoted $950 (out of pocket) for orthotics (AFO's) that she absolutely needs. We were not able to cover that cost at the time, which is why I began to research and look for help. This is when I found Shriner's Children's Hospital. I am sure you have heard about them on TV. They help kids like mine get what they need at no cost to us. Unfortunately, they are located four hours away, but the trip was definitely worth it for us. Through Shriner's, we have been able to obtain a wheelchair and orthotics, that my daughter desperately needed. We were not charged a penny for these items, thanks to donations from various organization and even regular people like ourselves! The service at Shriner's is really great! The physical rehabilitation doctor was the best we have ever seen. He was very knowledgeable in the diagnosis of cerebral palsy and was very much pro SDR, which is always great (if you are a parent of a child with CP, you know what I mean).

At Shriner's Children's Hospital, Tampa, we were able to do in just one day, what usually takes months in South Florida (at Joe DiMaggio's Children's Hospital) and the best part: we did not have to pay anything at all. Sophie was able to be seen by the Orthopedic and physical rehab doctor, and get the equipment necessary. The Physical rehab doctor even understands our insurance situation and worked out a plan with us to come visit every other month to have Sophie evaluated for Physical therapy and see her improvements. We have been on a hiatus from private therapy due to lack of insurance coverage, so the physical therapist at Shriner's will make a plan that we can follow at home and then revisit every other month.

I highly recommend visiting and donating to Shriner's Children's Hospital. They have been a life saver for our family.