Showing posts with label joe DiMaggio. Show all posts
Showing posts with label joe DiMaggio. Show all posts

Monday, May 1, 2017

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.

Monday, December 26, 2016

Gifted: Born or raised?

"talk to those who will listen"

As many other moms, I actively search for books and online help.  I hope to find other moms that I can relate to. I believe in nurturing children to become great, no matter what their abilities are. I am raising three kids; their stories are as unique as their personalities and their abilities. One thing is common among them; they are amazingly bright. They are in fact, considered gifted by the standards of many other parents. The oldest, who is nine, always scores in the 99% percentile in standardized testing, since he was in kindergarten. He always score the highest in his "gifted class", in public school. He is fully bilingual. He also knows basic greetings and household phrases in French, Russian, and Mandarin Chinese. He is an active swimmer. 

The second child is 100% wheelchair bound and has been reading at first grade level since she was three years old. She now reads at second grade level. She is still in pre-k. She knows basic phrases in five languages and is fully bilingual. She attends public school.

The third child just turned two. She can sing songs in four different languages and is fully bilingual.

They did not self-teach. Everything they know, they learned step by step, day after day, since the day they were born. Their skills are the direct result of daily routines and hard work, not genetics or natural causes.

I have been looking for anecdotal and research evidence of how actively teaching toddlers basic academic skills can influence their future academic achievement. Even before having my first child I knew that I would teach my kids to read early. In the gifted world, I am known as a "hot-houser" The definition of "hot-housing" is to increase the degree of education to a very high level, at a younger age. In other words, teaching a child the alphabet at eighteen months or teaching multiplication at five is considered hot housing, in groups and websites for parents of gifted kids.

Hot housing is viewed as a negative thing. I have lurked on the gifted parent’s groups for about a year now recently removing myself due to a loss of interest in the posts and comments. I could not relate to those parents. To them, I am a hot houser, and hot housing is like cheating the "truly" gifted. Truly gifted children are said to be born with a natural ability to read, and are self-taught many things like math, physics, chemistry, and languages as young as a year old. 

How does hot housing compare to teaching sports at a young age? What does a community of parents of the gifted think about training a child from the age of three to become a professional ballet dancer, or a gymnast, or an Olympic Swimmer?

Are Michael Phelp's parents, hot-housers? How about Michael Phelps, himself? His small baby is being taught how to swim by a professional coach (Phelp's very own coach). Michael Phelps began swimming at an early age. Phelps feared the water and could overcome his fears by floating on his back. His love for swimming was something that developed because of exposure to that discipline. Had it been genetics, he would have never made it into the water out of fear.

In search for information about gifted children, I joined online groups to learn more about gifted children. I hoped to learn more about books and resources that were out there for gifted kids as it was getting obvious that my first child was very advanced in academics. I never actually considered that my child could be gifted. I was terrified at the thought of having my child tested. I could never put him through the stress of a two-hour test, just to know his IQ or to have a professional tell me that my child was extremely smart when compared to his peers. I already knew he was very smart. He started reading and spelling at two years old. 

I wanted to read about what other kids that were my kids' ages were reading or doing. I hoped to find resources that could help to continue to foster their bright minds. After a few weeks, I began to feel out of place and It hit me. I realized why I didn't fit in. Most of the posts seemed to be made by moms who believed that their kids were born gifted. They were offended if anyone thought otherwise. They spoke of hot-housing, and not being able to control their kids giftedness or the behavior that came as a result of their child being gifted. I even read posts about moms who saw their children's brightness as a negative thing of sorts. Some even posted that if they could choose between their kid being gifted or not, they would probably choose to have a "normal child". I read stories about children who were lonely because of being gifted, I heard stories about other kids who were bullied as a result of being gifted, I also heard stories about kids who were under performing, had behavioral issues, and had a hard time at home with their siblings as a result of being gifted.

The fact that a parent joins a group to learn how to raise their gifted child, shows that the parent cares. Parents that care that much about their kids, help their kids excel academically.  

The more I read, the angrier I felt. I have three kids and one of them struggles physically to get around. She really struggles. I felt that these moms were being shallow. I have seen how it can be difficult to make friends for my oldest. As he talks about electrons and the elements in the periodic table, his peers talk about spider man or batman. However difficult it may be to socialize for gifted children, any kid can feel like an outcast sometimes. All kids can be bullied at times. Furthermore, 100% of the parents I know struggle with their kids' behavior at different levels, especially as they grow into individuals with different wants and needs from their own parents'. 

The "struggles" stories I read, did not seem so far from the ordinary. There was the kid who continually fought with his siblings. There was the kid who sat alone at lunchtime. There was the kid who all the other seven year old kids didn't care to hang out with, because he was talking about Picasso. These struggles are nothing far from the ordinary life of a regular kid. I could relate to many of them at times. I even shared a few posts. I could relate to the whole behavior thing, and probably the lonely aspect too. When my son was in Kindergarten he was reading Wimpy Kid and Harry Potter. In first grade, he decided that he was taking a trip to the Soccer World Cup in Russia in 2018, so he decided that he wold learn Russian. I supported him 100%. He also learned some French in the process, in addition to already being fluent (reading and speaking) Spanish as well. When he was in second grade he learned the elements and how they react to one another. So he had a little bit of a hard time making friends that wanted to hear about his stories and plans for the future. However, any child this age could have bad behavior, tantrums, and be bullied. So naturally, you could not attribute those issues to being gifted. My second child is so socially adept that she makes friends the minute she enters a room. As bright as she is, she has no social struggles. Her personality shines a positive light among any crowd. 

Aside from the struggles of parents with kids on the autism spectrum or twice exceptional kids, the struggles seemed typical. Yet, lots of moms wrote that their gifted kids should be segregated because their intelligence could suffer if they were in a regular class with regular kids. Although I understand that kids need to be challenged according to their knowledge and abilities, kids must also learn to interact with others of varied abilities. Just because my daughter is unable to walk, I would not want her to be in a class where all kids are in wheelchairs. We all live together in one society, and I want my kids to be able to talk to the President as well as the street sweeper. 

Although I believe kids should learn together, it is the responsibility of both teachers and parents to challenge children to achieve their full potential. There are endless tools and technology available that can help complement the education of both the gifted child and the underachiever. Enrichment can also be achieved with the creation of after school clubs and activities. Segregating students only ensures that the kids who struggle continue to feel inferior and reach a "learning ceiling" while the gifted kids get the education that they so deserve for being the smartest of the crowd. 

Contrary to what many believe, it is my opinion that all children are born with unlimited potential. That is, every human being is capable of excelling in any or all areas. Whether they are born with a genetic disorder, physical limitation, or with no medical diagnosis. I firmly believe that all children are BORN with the potential to become GIFTED! I have read the biographies of many great geniuses. From Einstein to Steve jobs, and Bill Gates, even Leonardo Da Vinci, these bright minds had a mentor or many mentors who nurtured their minds. This is a fact. 


The key to raising a child who excels in academics or sports is consistency and early intervention. I have heard and mothers say that a child that has learned the alphabet at an early age is a bright child, but not necessarily a gifted one. After reading my post, you be the judge of that. Although many people seem to firmly believe that being gifted is the result of genetic predisposition, and that nurture does not play a part in achieving gifted potential, I believe that anyone can become gifted. Could genes help in the process? Maybe so, but those who may not have the genes to learn easily and self-teach complex processes, can be taught those processes and become equally adept or even exceed the capabilities of another child who has "good" genes.









Tuesday, October 18, 2016

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...