#CpEmpowerment Movement

Remember back to my childhood, I really thought I was alone in the world that was filled with Down Syndrome and Autism kids. I had met some kids who had CP like me. However, they couldn’t speak or walk sitting in their wheelchairs.  To this day, I get tears my eyes just thinking about them. Yet, when I was three, a doctor told my family that I would lifeless in a wheelchair, Let’s say that I overcoming improbability. It wasn’t until I was in six grade that I met another likewise boy with CP.

I was watching TV a few weeks ago, when a long inform commercial came on telling about this new hair re-grower, and it made me kind-off mad that we are using a lot of money to regrow our hair loss instead using this money for the greater good, for research and development analyst, finding a cure for CP. Sometimes I feel like the world forgets about us, disabilities people.

As CP Gal, my lifelong passion burning in my soul is to help to make lives better for people, yet I’m taking baby steps. On July 10, I’m starting the #cpempowerment moment. Telling a different and incredible story of a person living with Cerebral Palsy every Wednesday on my own Blog and my Facebook Group CP Gal Reader Nest.

One could write about their life, living with CP, or do an interview. One can even take over my group for a day to post whatever you feel like. I want to encourage all the parents with CP children to join as well. One would never know where #cpempowerment will lead to, and that’s the pure beauty of it.

As Told By Tylia: How I Discovered That Impossible Doesn’t Exist

From the time I was born I have faced many challenges and obstacles due to my cerebral palsy. Today I want to talk about the day that I learn that the word impossible does not exist.

We can talk about many experiences I had that taught me that the word impossible doesn’t exist.

At the age of 7 while watching Spongebob I laughed for the first time.Cerebral Palsy Author Tylia Flores
At the age of 12, I had the opportunity to copilot an airplane and fly over the Everglades.Cerebral Palsy Author Tylia Flores Copilot Flying Over Evergaldes

At the age of 13, I started playing softball for a special needs softball league where I got to play my favorite sport and be a part of something beautiful which was life-changing.Cerebral Palsy Author Tylia Flores Softball Player

At the age of 14, I had a youtube video that went somewhat viralCerebral Palsy Author Tylia Flores Youtube Viral Video

At the age of 15, I hit a rough patch in my life where I was trying to discover who I was as a person with a disability. This is when I discovered I had a passion for writing.Cerebral Palsy Author Tylia Flores Writer

At the age of 16, I published James Ticking Time Bomb.Cerebral Palsy Author Tylia Flores Author James Ticking Time BombAt the age of 17, became a part of the Facebook community started to share my story on disability sites.Cerebral Palsy Author Tylia Flores Disability Support Groups

At the age of 18, I became a contributor for several sites including Project Wednesday.Cerebral Palsy Author Tylia Flores Project Wednesday

At the age of 19, I got my first pair cowgirl boots and my first cowgirl hat. This is something I never thought I would be able to do because of my cerebral palsy in the way my feet are when it comes to boots.Cerebral Palsy Author Tylia Flores Cowgirl Boots and Hat

At the age of 20, I finally accepted my disability and I truly began to live my life to the best that I could.Cerebral Palsy Author Tylia Flores

At the age of 21, I had my first real alcoholic drink and realize I hated it and I’ll never drink again.Cerebral Palsy Author Tylia Flores 21st Birthday

At the age of 22, I officially was able to feel what adulting is and how it never stopsCerebral Palsy Author Tylia Flores Adulting

At the age of 23, I started my podcast As Told by Tylia and many of my articles have touched many people. I’ve also started to model.Cerebral Palsy Author Tylia Flores Podcast As Told by Tylia Model

When did I learn that the impossible doesn’t exist? From the day I was born. Throughout my life, my dad and mom have always taught me that the word impossible does not exist. To me, it really never existed and I’ve always looked at what the word really means: ”I’m Possible”

Changing the word impossible to possible.

Throughout these life experiences that I’ve had as a woman with a disability, I learned as I’ve guided myself through life with the support of my friends and family that nothing is impossible. Don’t let your situation stop you because you are in control of your life. No else could control your life and what you do with your life. Nothing is impossible unless you make it impossible. That is the key to living an inspirational and happy life each day. Try setting a goal for yourself each year when you turn another year older. Set the main goal for yourself and you will soon learn the true meaning of the word impossible means I’m impossible.

I’m Living My Best Life. Are you?

I think by now we have all heard, at least the chorus, of the popular song “Smile” by comedian Lil Duval and Snoop Dogg.  He says, “I’m living my best life, ain’t goin’ back and forth with you,” you know the rest, it has some expletives, but we are going to sing the clean version.  He also says, “you got a lot to be smiling for,” and “it’s evident, I’m hot as a crock pot.”

Sometimes, no, most of the time, we get caught up with the day to day routine of life, being a parent, daughter, son, friend, caregiver, wife, husband, and all the other titles that are placed on us, we forget “we got a lot to be smiling for!”

Chile, I’m hot like a “crockpot,” but I didn’t always think this way, as a matter of fact, I have to remind myself of this daily. Hey, I’m a work in progress, for 20 years, all I’ve looked at myself is…as a mother. Don’t get me wrong, that title means the world to me, I cherish it. It is the most important title that God could ever bestow on me.

Being a mother of special needs twins, I am always in fight mode, in champion mode, advocate mode. Fighting the school system, the doctor’s, the insurance company, hell, the world. You stay in that stance constantly, carrying the world on your shoulders, so this world will be better for your children, someone else’s children, for fairness, for justice, for equality. But during these battles, you often lose yourself, you get swallowed up, you forget you only pass through this here life one time, and forget you should be “living your best life.”

 

I woke up one morning and realized, you are more than a conqueror, have some fun, laugh out loud, live life to the fullest, (you know that cliché), it’s passing you by. I want you to fight for your kids, that’s what we do, but I want you to have some fun, live a little, you deserve it.

This is what I did. Switched up my routine. I signed up for school, some said I was crazy, I just kept going.  I stepped way out of my box and joined a couple of organizations, a new church which lead to new ministries, new people, and newfound interests. My circle of influence changed, which brought on new ideas and improved my self-esteem and mental health. I gained new ideas and treaded into territory that improved my life and my daughter’s lives. I even had the opportunity to travel to Ethiopia for three weeks (which truly changed my life) and my family survived without me!

So I want you to do this, say no to some things without feeling guilty (I haven’t quite mastered that, I said I am a work in progress), you don’t have to go to the grocery store every Saturday at 10:00 a.m., instead grab a sandwich and your favorite magazine and head to the park, window shop, sign up for a cooking class, buy a bike a ride it, join an organization, meet new people, switch up that circle of influence, some of those folks are sucking the life right out of you anyway. It is perfectly fine to make new friends. You are already the best caregiver there is, but just remember to take care of you, your mind body and soul, and remember you are “hot as a crockpot!”  Live your best life!!

 

Connect with Carol at advocate4youblog.wordpress.com or advocate4you17@gmail.com

The Diagnosis isn’t the End

Being a parent to a child with special needs sounds complicated. When someone on the outside looking in hears that, the 1st thing I get is "God Bless You". I laugh internally when I hear this because you are right GOD did bless me. He gave me a human that would challenge everything I thought I knew about myself.

Anthony Jr. was born December 15th, 2005 to Libra Smith and Anthony Hicks Sr. He had a very complicated birth which led to an emergency C-section which led to me being knocked out to repair my cervix which led to him being in the NICU for 3weeks.

When I brought my muffin home, I surely didn't know the rollercoaster I was getting on.  I brought him home to a house that was in the process of being foreclosed on and we had to move ASAP!

I went back to work 3 weeks after having Anthony because we needed money and I had to take care of my son.

During this process, we moved into an apartment I secured so we would have a roof.  Not the best area, however, it was home for my son and family.

When I found out Anthony who I affectionately call Moo, would have a difficult life I refused to believe it. I absolutely wouldn't accept that he wouldn't have typical functionality. You know you go to the hospital to have a baby thinking all would be well and that's not the case.

It was a very hard time to hear so many tell me something was wrong, I was struggling to process all of that. At the age of 25 years old I was still learning life and here I was being told shit wasn't right with my son, my 1st born. How is this even possible.

Fast forward to now, I am accepting and open to all diagnosis. I have learned that the diagnosis means nothing. It's what you make it, yes, there are challenges that come with the territory, HOWEVER, I would've never found myself had I not had my son. I wouldn't even know who Libra is. I went through the difficult periods just to get to the other side of pain.  It was grueling and sometimes I wanted to quit, however, when I looked at my son, who doesn't get to quit, I knew I had no right to insult him in that way. How dare I quit when he doesn't get to quit.

When we hear the diagnosis, we instantly have a funeral, mourning the fairytale we've created. We then implement the very things that come with the diagnosis. For instance, with my youngest son Lyric, he has Autism and because of the diagnosis, he will experience sensory challenges. This doesn't mean I need to handicap him by watching him like a hawk, what it means is be aware of it so you can help him through it. We stop the natural order of process, to protect our children. Let them fall and hurt themselves so they can learn.

Don't take away the human experience from your children with a special need. Treat them just like you would any other child as long as it's not causing harm or discomfort.

Allow your children the space to develop. When a baby learns to crawl they learn to stand then walk. Our special babies can do the same if you believe in them and allow them the space to do it. Otherwise, you are developing the diagnosis instead of correcting the symptoms of the diagnosis.

As Told By Tylia: Everyone has a story

Everyone has a story to tell whether your disabled or not everyone has a purpose everyone has to story to tell about their struggles and challenges.

although we may not realize it as we’re going through the struggles that made stronger in life that makes the chapters of our lives great and real like for example I grew up with having cerebral palsy and facing diversity within our society . 

not understanding why I was chosen to face those struggles and challenges not realizing that years later as a young adult that those will become the stories I would tell in order to help others with Cerebral Palsy succeed in life.

That’s why when I was asked to start this blog segment I gladly came on aboard because every child has the story that could change the world no matter what back from you come from no matter what region you live in everyone needs to have the opportunity to spread awareness on what they’re passionate about and share their stories with the world .

cause everyone could make a difference .

Accepting DIVA’s Diagnosis

Diva is deep thought about her next move

Anyone that has been on Facebook or Instagram has already seen the infamous phrase “God never gives you more than you can handle.” 

I personally can’t stand this sentiment and often frown when its shared. I’m freely admitting I often have more than I can handle with DIVA and often find myself seeking solace in my husband’s arms or calling my mother or brother.

The poem Welcome to Holland by Emily Kingsley, more accurately describes what my life has become. I really thought after the birth of my youngest I would be flying to Italy first class.

Diva is my youngest child and has mommy’s heart. She often is the source of most of my stress (good or bad).  I come from a long line of over achievers and was taught never to give up despite my circumstances.  Raising a child with Cerebral Palsy and Epilepsy was not in my carefully laid out plans for my life.

I’ve struggled for years to confront my discomfort of DIVA’s diagnosis. In the midst of asking others to be accepting and inclusive of her, I’m still struggling to accept her condition.  As her mother, I want only the absolute best for my child, which can’t always be achieved in an instant. Instead I have to the patience of Job. I have to sit back and watch the magic of DIVA happen.

I can’t change her diagnosis BUT most days I wish I could.  After almost 11 years on this journey I find myself still crying some days as she struggles to transfer from her stair lift to her wheelchair.  I watch and offer encouraging words, so she doesn’t give up.  Some days she’s successful other days not so much. Then she flashes that SMILE and I melt and say “Come on Pumpkin just a little more you got this, push back and turn and sit.”

Working each day to combat her never ending tightening muscles of Cerebral Palsy, I’d trade places with my child any day of the week. I can’t change her condition, I can’t change her continuous struggle to move, I can’t change her.  I CAN’T CHANGE HER.   Some days I repeat this with a smile and other days I repeat this and cry.   

Love my DIVA 

AS Told by Tylia ​: if you want my handicap parking take my disability

I can’t tell you how many times over the years in my childhood that I had some pretty interesting encounters when it comes to handicapped parking and the people that I’ve gotten to me through my experiences with handicap parking.

My opinion about handicap parking spots is that they’re great and it’s being for people like us who have a wheelchair and let who have a disability get you to need to get to quickly but and some cases people that aren’t handicapped still parked in a handicap spot.

for example a few years ago, I was living in a condominium type of community and to give you a picture on how the parking lot as they only had one handicap parking for the whole community which in my opinion was stupid because there was more than one handicapped person living in the same condominium complex.

so one day, I was coming back from physical therapy and I noticed this flooring company van parked in the handicapped spot and as I saw a man coming out I went up to him and I told him some very unfriendly things and I said to him why did you park in my handicap knowing that my mom was trying to get that parking for us so that she can get me out faster and he said all because the office told me to park here sir if you really want this parking then you should take my disability just for a

day so you can see how hard it is for a citizen like me to transfer in and out of vehicles then you will think twice about parking in the handicapped spot when you’re definitely able to get up and walk.

That’s like people that park close to handicap assessable Vans to point where they can’t get in the vans because people park so close to the vehicle cause people park so close to the vehicles
So please be considerate if you’re able body person parking the handicap and just think about this if you’re willing to take a handicap parking would you want our disabilities.

As Told By Tylia :D​isability and Toys

It’s no secret that I was very unique as a child with having cerebral palsy and everything but I still had many toys and I was into many things as Legos that were Harry Potter theme and garbage patches but they all had to be boys with blonde hair and blue eyes

I wasn’t really a huge fan of Barbie, in fact, every year on Christmas when somebody gave me a Barbie I would pretend that I like it and then, later on, give it to Goodwill.

But there was this one Barbie that I’ve absolutely loved as a kid from the minute my mom brought her for me while away on a business trip and her name was ”Becky ”and she was in a wheelchair just like me I used to play with her all the time and I would take her on adventures with Tommy Pickles and he would push her wheelchair and play with her hints how old I’m I right 😂 .

But anyhow I’m so happy that Mettel has decided to bring Becky back for the new generation of little girls who have a disability and for those who don’t as well that way we have better tools to educate young children in disability awarenesses and how it’s okay to be different from others!

Grief

Grief, what is it?

Grief is a feeling of deep sorrow, especially that is caused by someone’s death. Why do we have to acquire so much pain from death? It comes from knowing that a loved one is gone. You will not be able to touch, hug, kiss or talk to them in the flesh. I could imagine the pain but I never quite understood it or truly knew what it felt like. That it was an unbearable overwhelming, can’t breathe type of pain. When I met my husband I learned more about it than I ever could imagine. And didn’t realize God was preparing me for that pain.

When we started dating in 2007, it had been 6 years since he had buried his 5-year-old son, who also had been diagnosed with Cerebral palsy. He would sometimes break down in tears, saying how much he missed his son. Of course, I would comfort him, but in my mind, I was thinking, “Dude really? It’s been 6 years why are you crying”? I am just speaking my truth because I didn’t understand that something so painful as the loss of your son could go on forever. I had never lost someone that close to me so I was oblivious to his pain. This is why it is so important for me to touch on this subject.

At one point or another, we will all go through grief. There are 5 stages of grief and they can come at any time during the grieving process. Grief doesn’t follow a timeline that is one thing people who have never grieved don’t quite understand.

-Five Stages:
1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

Everyone grieves differently, but at some point, we will feel each one of these emotions. Although I don’t know if I ever felt the denial stage, then again maybe I have. I never could form my lips to say my son is “dead”. That just seems so final or made it seem real. So instead I always say that I loss my son. Just recently I have started saying he has “passed” away. 3 months after he passed away, I found out I was pregnant with my daughter. I remember looking at my mom and husband and saying, I have no idea where this little baby is going to sleep because she can’t have Tae room. I was in denial; I refused at first to move his things to make room for another baby. Moving his items would feel as if I was forgetting about him. As if I was trying to erase his memory and I couldn’t do that. Eventually, as my due date got closer I was able to rearrange his room for her. One side had his name on the wall and I refused to paint over it, so one wall had his name and the other wall had her name on it.

A lot of the anger comes from wondering what could I have done differently? Why did God take my son away? Why me Lord? And for me, I feel angry because at the time of my son’s death he was in a facility. I had told him in December that he was coming home soon but January he passed away and never made it back to our home. So I hold a lot of guilt, which can turn into anger for me.

Months later after feeling fine and going through life, the grief process hits you again. And don’t let someone who doesn’t “get it” come in contact with you when you are feeling any of these emotions, then they start to say the dumbest remarks, like. “ “He is in a better place” or “he was sick right”, or “Its been 6 months you still grieving”? “Think about the good times”

I get it you mean well, but sometimes being silent is more helpful than those comments. Seriously, and it’s not me being mean or sensitive it’s me being real. We don’t want to hear that our loved one is in a better place when we prefer him/her to be right here with us. We know we have great memories, but we want to make more! I want to hug and kiss on my son and tell him in his ear how much I love him.

People think that you only grieve right after a death and then it should be over. Negative! My son passed away 8 years ago and it feels like yesterday. That day replays over in my mind more than I want it to. The pain/ grief hits me when I least expect it. I can be driving in my car and bam, tears start rolling down my face, and then depression sets in. I can be cooking dinner for my family and then an overwhelming feeling of sadness hits me.

I cry, scream, pray and then the acceptance that my son is gone sets in. For me, bargaining usually comes around the same time as depression and acceptance. I ask God, “ Why couldn’t my son be here for me to live out my purpose”? “Why couldn’t he be here with me”? “Why did he have to move on for me to have a testimony?” “I wish his sister could have met him” etc.

So I am saying all this to say, grief has no time limit. I will always feel the emptiness of my son not being here and the pain in my heart. What I can say is, as time goes on those who have dealt with a loss, will learn how to deal with the grief better. Every day gets better, and you may go without any feelings of grief longer than before. I just want people to understand that they should always be careful with their words and be more sensitive to those who are dealing with a loss. That pain of a loved one is strong and it never goes away, some of us learn how to cope with that pain and others allow that depression to set in. We are all different and we all handle situations differently, so please be kind. You never know what we are feeling, just because we are smiling on the outside our insides are crying. Try to understand. Call us. Check in on us, especially on their birthdays, holidays and their anniversaries.

Grief is a forever process, don’t you forget that. The better you understand it the more you can help us. Don’t be afraid to ask questions, but do be afraid to say dumb remarks like the ones I mentioned above because we just might snap. LOL

GRIEF will forever change a person. Never expect them to be the same afterwards. 

To learn more about how I have dealt with the loss of my son or my husband please order a copy of our book, “Life Before and After Cerebral Palsy, We Are Their Voices”
Available on Amazon, Barnes& Noble, Google Play or iTunes

As Told by Tylia ​: How Stanley brings awareness to Children​ about Disabilities

When I was a child, I loved watching Cartoons my favorite network to watch was Playhouse Disney now known as ”Disney Junior”like any normal child who grew up in the late ’90s early 2000’s .

One of my favorite shows to watch was Stanley that’s based on the series of children’s books written by “Griff” (as indicated on the cover of the original book), also known as Andrew Griffin. It was produced by Cartoon Pizza and was developed for television by Jim Jinkins (the creator of Doug, PB&J Otter, Allegra’s Window, JoJo’s Circus, and Pinky Dinky Doo) and David Campbell.

Stanley was a young boy into animals in every time he would want to learn about an animal he would grab his great big book of everything that was like an encyclopedia that would teach him about the animal and he would dive right into the adventures of the animal he was learning about within the episode but what made Stanley so unique was that with every episode but he was taught something new about an animal there was always a life lesson behind it all .

Which brings me to one of my favorite episodes out of the whole entire series entitled, Look Who’s Helping where Stanley meets his cousin Max who is in a wheelchair and has a Service Dog to help him adapt to his life has as six-year-old in a wheelchair. while Stanley hangs out with Max he dives into the Great Big Book of Everything where Max and Stanley learn about Monkey who to learn how to adjust to being their environment just like Max does but that doesn’t mean they’re any different from one another.

I totally feel as Stanley hit it out of the park when it comes to bringing awareness to children about differently able- children and how we could all be the same although we have different abilities we just all have to come together and adjust to our environment and as a child, I think it’s about you will listen that we could all learn from