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.

Eight tips to raise an extraordinary child. Labels out the window!

I began teaching my daughter to read when she was eighteen months old. The fact that she could not hold herself in a sitting position, she could not stand, and that her head dropped from side to side often (poor head control) did not stop me from feeling that she was a smart little girl. I treated her as the smart toddler I knew her to be.  I had already taught my oldest (typically developing) to read at two years old by using my own special reading program (easy and totally free). I knew that my little girl had all the potential within herself too because I have always believed that every child has the potential to achieve anything, given the right tools.  I taught her the letters and simple words, every day, five to ten minutes a day. I did not see results immediately, but I never stopped trying because I knew that she was always observing, and learning. And so, between doctor appointments, therapies, surgeries, and caring for my other two children, I took moments to teach her as much as possible. By the time she was three, she was reading full words. Although she just turned five two months ago and still cannot walk, my little girl who many see as disabled is more abled that any other five-year-old I know. She can read at second grade level and speaks many phrases, numbers and songs in Spanish, Russian, French, and Mandarin. She is fluent in her native language (English) and Spanish. She wants to be an astronomer and a dentist when she grows up. It is my job to make this a reality for her! I am very excited to share with you how you can help your child become extraordinary and even gifted, just like I did with my daughter. What would happen if you stop seeing your child as broken and start seeing your child as EXTRAORDINARY? What if you stop asking WHY your child is disabled and why this happening to you? Imagine just for a moment that you stop comparing your “disabled” child to other children? Years ago, these tasks seemed flat out impossible to me. Today, my daughter and our family, live a true magical story of triumph and bravery. And the future is yet to come. What if there was something you could do to help improve the quality of life for your child? How do you help your disabled child become extraordinary? You already go to countless therapy and doctor's appointments. Is there anything more you can do?What if you STOP asking why and figure out how to unlock the blessing that you have in your hands and prove to the universe that “disabled” is nothing more than a label? what if you realize that she CAN and WILL make a mark in the world, in her life, in the lives of others?

How do you begin to embrace the blessing that you have in your hands and find possibilities that are unimaginable to the parent of a “typical child”? For one minute, think about this: Your "disabled child is extraordinary! Say it out loud repeatedly until you truly believe it in your heart.  As the parent of this child, you are the most important person in her world so if you don't believe in her, she will not believe in herself, and no one else will believe in her or her unlocked potential.
During our latest dolphin therapy trip, we met a family from Iceland. They had traveled all the way from Iceland to Key Largo, Florida to experience the magic of Dolphin Therapy. The entire trip had been planned by their twenty-one-year-old son. He was diagnosed with quadriplegia. He is unable to speak and uses a communication device. I was talking to the mother, as much as I could communicate to her in English. I was excited to learn that her son has surpassed all educational obstacles that could be associated with being disabled. This summer, he will graduate college and receive a bachelor's degree from his local university, with honors! It was a refreshing story. Here was this boy, fully confined to a wheelchair and he was about to achieve something that many typically developing kids are not able to accomplish, graduating from college with a remarkable grade point average.
Do you think that your child can accomplish this someday too?

What can you do, daily to help you live this extraordinary, joyful life with your child that is “disabled”, has “special needs”, etc. (per society).

Remember how your world was turned upside down when you learned of your child’s diagnosis? Did you cry, or scream, or asked why do these things happen to me? Did you grieve normality? Grieving is normal and even necessary as you are an emotional being. However, that time has passed and now you have in your hands a wonderful opportunity to help your child become not just a normal person but an extraordinary one. Here are some tips to help you see the extraordinary in your “special needs” or “disabled” child.

1.       Change your vocabulary.  In this amazing journey, we get used to the labels, even worse, we use those labels ourselves. The school calls our kids disabled, special kids, kids with special needs, different kids, etc. All those labels change not only our perception of our child as different but also their own perception of who they are, and what they can do and achieve in the future; that is, what contributions they can make to their own lives, to live happy and contribute to society and become the productive human beings that most people all dream of becoming.  2.       Stop comparing your child to others. My daughter told me “mommy, I am sad”, my immediate reaction, as you might expect was asking her what was making her so sad. She told that she was sad because she could not walk. At her response, I did not feel heartbroken or incomplete. In fact, her response triggered thoughts of all the things that she was great at, all those traits that make her so extra ordinary. I wanted her to feel that her lack of walking did not make her imperfect. I wanted her to know that she is perfect in every single way, so I began listing for her all the things that make her great like her kind heart, her love for pink unicorns, what a great friend, daughter, and sister she is.3.       Focus on the ABILITIES and mitigate the disabilities. Yes, I know that we go to the doctor often, go to therapies, and know more medical terms than any of the other parents of so called “typical” kids. But doesn’t that also make US extra ordinary? There are so many things that our kids can do. Maybe they are not good at gymnastics, or anything requiring strength in the upper torso but there are so many other talents that we can foster and develop in our kids. Research about things that they can do. Just like athletes require years of training, don’t forget to go step by step, and never give up on the new discipline. Whether it is art, painting, music, writing, science experiments, pick one discipline that your child shows the slightest interest in and stick with it. It will take time and practice but just like an athlete needs proper training, your child needs and DESERVES proper guidance and training in whatever new talent you wish for him to develop. Come up with a simple plan or small routine.4.       Call them by their name (not my child with special needs) in public in front of teachers, doctors, other kids and not by the code “special needs” or “special child” all children are special and children do not want to be labeled. Your child is no exception. Often, other kids ask my daughter why she is sitting on that “thing” (her wheelchair). I always answer for her and/or ask her to answer the following: "Because I cannot walk so this wheelchair helps me to get around so I can play and do lots of fun things".5.       Treat them like you would any other child.  If they do something that they shouldn't be doing, point it out to them.  Teach them what you would teach any other child. Believe that the are no limits. Have you even heard of the famous Helen Keller? As a young girl, she lost her sight and hearing but still managed to learn to read and make many meaningful contributions to literature. Her books became best sellers and she became famous. It all came true because she had the support of her family and a life time coach that never gave up.

6.       Even if your child cannot talk, believe that they can learn to read, count, any comprehend any subject because they can! Remember that a lot of abled bodies do not explore and use their brain potential. If you have a child that has any brain damage but you work with them to reach their full potential, they will grow and achieve the unimaginable.

7.       Take small steps.  Set small goals, after all, you must climb one step at a time to get to the top of the staircase. You must learn letter before you learn to read. Make sure that enough time is allotted for each activity. Never underestimate their ability. Always reward with love and affection. Always speak kind words and tell them how much you believe in them, love them and most importantly that they are PERFECT in every single way.

8.      Read books, even if it is for just 10 minutes a day. Read about neuroplasticity, read about teaching, increase your knowledge as you become empowered to better help your child. Reading online doesn’t count as a lot of information online has been altered or offers misinformation. It is easy to write online but it is harder to become a published author and even more difficult to write a good book. So find a good book and read as much as you can about the potential of the human brain. TED talks also provide very useful information. Focus on finding positive information that can help your child improve. Stop reading negative information that draws out into a negative state of grief. Only you can help your child overcome any obstacle and rise above the labels.In an age where everything seems to have been discovered, the potential of the human brain continues to amaze scientists. Its exponential growth begins at conception and continues throughout childhood, growing very rapidly in the toddler years. During the first years of life, the little human brain can attain amplified intelligence but only if it is exposed to an academic and environmental atmosphere that will foster and stimulate new neuron connections resulting in increased gray matter. As new networks of neuron connections are built, the brain becomes more agile, or capable of working at a higher, better capacity. And this is how our big question begins: nature vs nurture. In my humble opinion, based on my experience with my kids, I say nurture can override nature.If a child who does not have any brain damage does not receive the nutrients and stimulation necessary, they will not be able to develop to the best of their potential. What if you provide the stimulation, nutrition, and education necessary to your child, who has been diagnosed with brain damage? What if you nurture their need for good nutrition, love, and learning, the potential for success would be far greater! The results would be like nothing you ever dreamed of, even before your extraordinary child was born!

Resources which I am in no way affiliated with:Website:https://iahp.org/

Selective Dorsal Rhizotomy - A whole new body

For  four years I have been researching and investigating about SDR (selective dorsal rhizotomy) a procedure that, according to parents, changes lives. Follow on  #sdrchangeslives
I read the facts, the success stories, and saw the videos. I was convinced that SDR could change our lives too!

We finally decided to schedule an appointment to see a neurosurgeon at the local children's hospital. We contemplated going to St. Louis to have the great Dr. Park evaluate Sophie but with three kids and a small budget, that was going to be a very difficult task. I was feeling somewhat guilty for not going above and beyond in order to get Sophie to St. Louis but then somehow I convinced myself that it was best to find a local option and fast. At last, I decided that it was best to stay in town if I I could manage to feel comfortable with our local doctor. We saw Dr. Hertzler about six months before deciding to do the surgery. If you are considering this surgery for your child, please do not delay. I wish that I would not have waited this long.

So back to the story... Sophie was admitted to the hospital at 6 a.m and provided a gown and glass slippers upon arrival. ok, just kidding, just some plain green, hospital socks. By this time, I had gone into a little trance I that usually put myself into when things are about to get tough. It is like a natural drug that my brain manufactures so that I can endure difficult situations. As soon as the nurse began to work with us for height, weight, etc... she realized that this girl was no ordinary child. She immediately became the talk of the nurses and doctors who were slowly getting to know her. She began to tell everyone about her twin sister who passed away. She also spoke about how much she wished to be a ballerina and that the reason that she was having selective dorsal rhizotomy, and yes, she said "selective dorsal rhizotomy" and she knewexactly what that meant. Her vocabulary left everyone in awe. Although she was just four years old, she reads like a first grader and speaks two language fluently (English and Spanish). She can also say many words in phrases in French and Russian. How is this girl so smart? you will have to read my next post about how I took my daughter's brain development into my own hands!

So what does this mean for a child with cerebral palsy diplegia or quadriplegia? During the rhizotomy, a neurosurgeon selects nerve roots that are causing spasticity and cuts them, removing spasticity forever. Sophie was diagnosed with quadriplegia, although she has always had good use of her hands and arms, because "some spasticity" was present mostly in her left hand. Her left hand was fisted for probably the first two years of her life. She improved that greatly with the Anat Baniel Method (RESEARCH ANAT BANIEL METHOD)  that cost us an arm and a leg (thankfully paid through fundraising).

So... around 7am, the nurse started some meds that were intended to make Sophie drowsy. Then, she was almost asleep, she was taken inside to the operating room and next came what would be the longest four hours ever!

At about  noon, the doctor came out to give us the good news! The surgery was a success and Sophie was doing very well. The doctor told me that her lips might appear swollen because she had been on her belly for the length of the surgery. I was called in to see her. She was still asleep when  walked into the recovery room. She was lying on her back. I looked at her lovely face and her closed eyes. I did was most parents probably do after a surgery like this. I uncovered her feet and tried to bend one of them. All her toes were now relaxed. Her feet had the ability to bend back without bouncing back like they had springs inside of them. I felt like a miracle was happening right in front of my eyes. After so many years of seeing these two little legs, always stiff, always in pain, I began to see all the possibilities that would now become a reality for my daughter. And she was still asleep, just about an hour after surgery and her life had changed, our lives had completely changed.

Recovery was much easier than I imagined. Sophie was so brave, she did not even cry once. The key was making sure that she received pain making exactly at the right times. The first three days, she was on morphine. By the fourth day, she was on alternating Tylenol and Ibuprofen. She was so good taking her medications, so different from we are at home. After surgery, she was transferred to the Intensive care unit for twenty four hours, then to the rehab floor.


To be continued...

First Day of Developmental Pre-school at 3 years Old

Dear daughter,
Let's talk about your first day of school. I was overjoyed that you entered pre kindergarten. However, aside from the usual worries of whether you were ready for school or not, I wondered how much help you would need. I sat you in the yellow chair shaped like a bee that we brought from home, then I said good bye and you seemed happy. I left your school wondering, worrying, and afraid.


I had no idea what you would need for school, aside from school supplies. Pre-school was not only new to you, but also to me, although I had already been through it with your older brother. I kept thinking about you would get around in your classroom. I kept thinking about how you would defend yourself if another child tried to bite or attack you in any way, as it is usual with toddlers your age. What if you needed something you couldn't get to, how would you get around?


The morning went by and it was time to pick you up... I got to the classroom window to pick through and there you were. My beautiful princess, sitting in your bee chair while the other kids played and ran around. You seemed so content and that made me feel so happy. All the kids started to get their backpacks while you waited patiently trying to figure it all out. Then, I couldn't hold back my tears when kids came running to the door as their parents picked them up. You sat in your chair and waited, then you saw me and got so excited that I was there. You told me what a great day you had and how much you played with your friends. Your teachers said that you were such a happy girl! They made some changes and accommodations to make easier access for you, just like the other kids. Your cubby was made accessible so that you could place your backpack and lunchbox inside all by yourself. The next day, you were the first one to come out of the classroom with the help of your teachers, that was very special.


When I left you in school on the first day, I was wondering, worrying, and afraid. Today however, I am no longer worried or afraid because I see that you love school. It was a very hard decision to get you started by now I know it was the best choice I made. You love your teachers and friends. I am learning what you need as we go along so that I can be a better advocate for you.