Every parent is probably nervous when their kids go to another school and / or change teachers. The reason behind my nerves with Jaylen is this, I'm not sending him to school with just a backpack full of school supplies, I'm sending him with a basket of meds and supplies.
I'm leaving him in the hands of someone who probably doesn’t know the different types of seizures he has. Someone who doesn’t know the difference in the way he whines for different things he wants. Someone who would probably get upset because he fights when he gets tube-fed. Someone who doesn’t want to feed him by mouth because of the way he chews or swallows his food even though his favorite thing to do is eat.
It's a lot that goes through my head especially with his behavior being the way it is lately. Who's to say someone won’t get upset and put their hands on him? However, we all know where I’ll be if that happens (lmao)
I said all of this to say, if you happen to see a parent crying today while leaving their kid to school don’t just think they are overreacting it could possibly be they have a child with special needs who are overprotected and hate to leave their special angel in the hands of others even if they are qualified for the job.
Those of us who have a disability or care for someone who is disabled and travel around our communities know how difficult it can be. We must look for smooth pavement or aprons if we use a walker or wheelchair, we must search out handrails, ramps and avoid large curbs and steps. Sometimes there are no sidewalks at all and heaven forbid no elevators, only stairs or escalators. Want to set me off real quick, let me pull up to a doctor’s office or any other establishment and they have no apron in the parking lot, I’m going to hear my girls groan, because I’m looking for the manager to tell him/her how dumb it is for them to have handicapped van parking with no apron.
When we first began this journey, if it was a place I was not familiar with, I would call to see if they were handicapped accessible. On some occasions, I would go there beforehand and see for myself, because my definition of handicapped accessible may not be the same as theirs. It is a bad feeling when you get ready and arrive at a destination that is not accessible. For example, we attended a production at a neighborhood theatre who said they were handicapped accessible, but actually only had room for her in the aisle which had a steep incline, she said she felt as though she was on a rollercoaster and held her arms up as if she was at Six Flags throughout the whole play. Once we attended a leadership meeting held by a sorority where we had to clear the bushes to reach the ramp. Once inside, to enter the building, they had one step. I asked the group leader, you told me you were wheelchair accessible, she says we are, we have a ramp, duh?
One way I prepared my girls is by applying for them a paratransit card when they were 14 years old. Paratransit is special transportation services for people with disabilities provided as a supplement to fixed-route bus and rail systems by public transit agencies (GCRTA.com). Dominique began working a summer job, and because I don’t have a wheelchair accessible vehicle, I had to figure out a way for her to get there. I would book a ride and teach them how to wait for the bus, enter, pay and exit. If they were going somewhere new, I would go with them the first time, check out the scene or drive and meet them there and show them what to do and see the drop-off point. Their first trip was to the church, which was about a mile from our house. I told them to call me when they got there and told them what to do when they got there. I was so nervous, I drove there and hid in the parking lot and watched them. When they saw me hiding, Jasmine said: “for real Mom, for real!”
Another trip I planned for them was to the grocery store, about 20 minutes from home. I gave them a note and money for three specific items. Again, I was really nervous! They called me in no time and said, we finished a little early with money left over and have time before our bus comes, so we stopped next door at Subway and are sitting in here eating a sandwich.
Slowly, steady, but surely, we are changing the world and making it more adaptable to our needs. When we are visible, when we make suggestions, when we complain, we make a change. Keep changing the world!
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.
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”
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 was nineteen when I had my first child Jaylen. He was born with some medical complications. The hospital where I had him transported him to another hospital that specialized in neonatal care the next morning.
Jaylen was in the NICU for 1 month while they ran several feeding tests. 2 of the test performed gave an indication that a G-tube along with the fundoplication was necessary. These test also indicated that Jaylen was experiencing REFLUX aka GERD and Aspiration into the airway.
(A Nissen fundoplication is basically a procedure where they wrap the stomach around the esophagus to stop you from aspirating)
Prior to the surgery, an NG tube was placed as a temporary solution so that nutrition wouldn't be lost. Once the GTube was in, I was taught how to care for it. I will not lie, I was scared to death of hurting my son. I had to stay overnight at the hospital to be monitored while feeding him. They had to make sure I knew what I was doing before discharging him.
After getting Jaylen home I had to show my family how to feed him. For the most part, I was the only one to feed him because just like me they were afraid of hurting him.
Fast forward, Jaylen is on his way to being thirteen years old and he is still tube fed. Each year Jaylen has to repeat a swallow study to see if there are any changes to his swallow ability.
Right now, he still can’t get thin liquids by mouth, but he can eat some foods by mouth. I am very proud of his progress! Most people think because they are g-tube they won’t be as healthy as other kids. Well, Jaylen is now eighty-two pounds and has always been chunky. The best thing they could’ve done for him was to give him that tube. And I am a happy g-tube MOM!
I’ve always enjoyed going to the movies especially now that all the latest Disney movies are coming to the theatres and to be honest I’m looking forward to Toy Story 4.
Although I’m about to be 24 years old in a few weeks I still watch Disney movies from time to time which brings me to this article topic going to the movies with Cerebral palsy.
Now I don’t do good with loud sounds meaning I jumped every single time I hear any loud music or audio which is part of my Cerebral Palsy which makes it hard for me to go the movies .
So how do I cope with it and the issue the truth is I don’t cope with it at all or make a big deal of it I just laugh it off and say to my self it’s apart of me and I’m going to embrace it all in a positive way vs the negative way because
I choose to be who I’m as a person that what I want people to know about having traits that we don’t about ourselves embrace who you are or who your children are with ABILITIES NOT disability because we don’t have disabilities We have many abilities along with flaws in our lives but it doesn’t mean it should stop us form doing anything
Sorry it’s been a while since I’ve been on here just a lot of brand-new stuff going on in my life for starters I have started my own radio show and I’m
continuing my writing career an advocacy career in full force so I apologize if blogs become little from me but I haven’t forgotten about you guys.
So you’re probably wondering what I’m going to discuss in today’s blog post I’m going to be discussing the latest news about the animated preschool show that airs on the Nick Jr. Papa pig Papa pigand the reason
why I want to discuss that shows because today Dan announced that they’re going to be introducing a character that is in a wheelchair named Mindy mouse
My first initial reaction when I heard the news about the news in addition to the papa pig family I was jumping out of my chair because I said finally because I said finally we’re getting somewhere in a society where animated TV shows and sitcoms are opening up doors for people with disabilities to have a voice
Now most of the time I would not get excited for a preschoolers show since I’m 23 years old and do not watch Nick Junior anymore but since I have a nephew I’m really excited to show him Mindy Mouse and what her abilities are plus I feel like we could use Mindy mouse as a tool to explain to children what a wheelchair is and how it doesn’t define what child can and can’t do !
Making friends can be tough for our Diva. She loves to touch and hug and pull on people. This doesn’t always go over well with everyone. Two years ago our family was given the opportunity to meet Lava, a Canine Companion who hasn’t left her side since day one.
Some of the programs that offer Service Canines are expensive and have extremely long waiting list. Usually 5 or more years. Some canines are specifically trained to detect seizures, low sugar, and self-injurious behaviors. Each program is different and should be researched for individual needs. Our family applied to www.CCI.org (Canine Companions for Independence). After two years of waiting we were blessed with our newest family member Miss Lava.
Lava continues to amaze our family on how smart she is when it comes to our Diva. When she initially came to our family she knew well over 80 commands. Since arriving in our home, our non-verbal daughter now commands her to eat and drink in a language all her own. Watching these two will have you in stitches some days. Diva is always getting into trouble whether its with flour from the kitchen or unrolling tissue from the bathroom. Lava is always right beside her.
To our amazement and delight Lava will now find mom & dad if Diva is not safe. We didn’t teach Lava that she has developed this connection with our daughter over the years. During what I call “hospital 101” period in our lives. There was a year our family seem to always be at Children’s Healthcare of Atlanta. Whether it was for tests, therapy, operations or an emergency admittance, Lava laid right beside our girl on the floor as she slept in her hospital bed. Any time Diva would move Lava would stand and check on her.
During our hospital stays the medical staff taking care of our daughter didn’t even realize Lava was in the room until she stood or moved. Which is exactly how a service canine should be. I love how these two are in sync with one another which melts my heart.
Lava participates in all things Diva. I do mean EVERYTHING. Halloween costumes (yes we put Lava in a ridiculous outfit), opening birthday presents, bath time, dinner time, Thanksgiving & Christmas. Our Diva expects her friend to be with her as soon as her eyes pop open in the morning . Lava expects to be with Diva. That type of love can’t be taught.
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 .
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.