IT has been a minute or two...

 A lot of time has passed since I have written on this blog. Maybe I have not had the need to express myself about our unique and fantastic life, or maybe I have not had the time. In all these years, I have worked and graduated with a degree in exceptional student education and a masters in education. Yes, I have been very busy making a future for ourselves and building a career that I can be happy and proud of.  And best of all, my career has been a product of my inspiration: my daughter. I wanted to be savvy enough to help her live the best life possible and that has been my driving motor. I found it appropriate to write tonight because my heart is broken into pieces. So much has changed since I wrote here. It seems as thought it was only yesterday that our lives made a turn and we were forced to learn all about what it was like to raise a child who has different needs, which we are still joyfully learning every day. Do you know that feeling when there is a kind of emptiness in your chest that reaches all the way to your stomach? That is what I feel today when I hear my child tell me the story about her best friend having a birthday pool party and how she did not get invited to it because her friend's family "did not know how it would work." Why didn't this mom reach out to me and asked me for advice or at least tell me the reason why the child who my daughter considers her "best friend" did not invite her? What is worse or sad is that my little one said that she "understands." I asked her to be honest, to tell me how she felt. I did not want her to hide disappointment in her heart without being able to talk about it. She said that she is fine because her friend explained to her the reason why, which is  that they did not know how a person in a wheelchair could get into a pool. I am lucky that she is so innocent. Innocence is a bliss in this moment because she is not heartbroken as she should be. Here she is, planing her own birthday party which will happen in a few weeks and all she says is how she is going to invite the little person that she considers her "best friend" in school. The same little person who had her own pool party last week which my daughter found out about through other kids who DID go to the party because they are not in a wheelchair. I wonder how anyone can think that this is ok. I wonder why the mom did not even try to reach me to ask me. All I can do is wonder, but just for a moment because I need to move on. I don't tend to dwell on things like this because it is waste of energy. I will be heartbroken tonight and then we will move on. I pray that things like this don't ever happen again, but who am I kidding. I cannot prevent heartbreak for her All I can do is prepare her to be strong enough to keep going despite situations like this. How to do that? I am not sure yet, but I know it will come to me. 

I am tired, not that kind of tired.

I just want to say that I am tired of fighting. Not tired like giving up. Just tired like I need to vent. I don’t want. I would never give up. Why do we have to fight a constant battle? For parking spaces, for school accommodations, for people to treat our daughters the same way they treat other girls. Everyone has a fight so I understand that my daughter’s needs are not on everyone else’s priority list. But I wish people could be just slightly more understanding. I wish the Principal at the school understood how hard it is when someone who doesn’t need a handicap space parks there and why we need a designated unload area that it not those spaces because they are not always available. I wish that they would not have discriminated my daughter and placed her in the academically lowest class, even though she is three grades levels above, just because she is in a wheelchair.  I wish the ballet school understood that my kid needs a little pick me up to keep up. I wish they wouldn’t just give up on her when she says she wants to quit. I wish that the Girl Scouts were nicer and more helpful and more inclusive in their activities. I have to work harder and figure out a way to make a better future for all girls.

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.

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.

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...

Diary of Baclofen - started at 3 years old - DX Spastic Cerebral Palsy

Today we gave in. At three years old, we have finally decided to start Baclofen, given orally. We gave the first dose of 2.5 (1/4) tablet dissolved I water and this will be the dosage for the first week. The second week, we will go up to two dosages per day. Her doctor say that it should help with:
-pain and spasms while sleeping due to spasticity.
-Better muscle control
-Maybe sit better.


I will document all about our journey with Baclofen.


Stay tuned....


Update#2- two weeks into Baclofen
Dosage- morning and night 2.5 each time.
Changes- very slight changes, legs re less stiff, slight changes in sleep pattern, no longer complains about pain at night.

Final update- Baclofen did not work! The side effects were awful (weakness all over her body) moving on to SDR... No matter if the rehab doctor thinks it will not work.