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Cerebral Palsy does not Define her

As most of you all know, my daughter Ciara has Cerebral Palsy, but that is not what defines her.

Cerebral Palsy is defined as “a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.”

Because of her disability, she cannot walk out talk, but she does not let that stop her. There is so much more wonderful things about her other than her disability.

Here is a list of what makes Ciara so special and proof that cerebral Palsy does not define her.

She loves EVERYONE!

She has a special excitement for life.

She takes pride in everything she does.

She loves her job and never complains.

She enjoys it when she is given responsibilities or chores, so she can prove she can do it.

She loves to cook!!

She has the biggest heart and really does care about everyone she knows.

She worries about her friends and prays for them.

She is obsessed with music, her favorite singer is George Straight.

She listens to everything she hears and absorbs every word like a sponge. She can know a song after only one time of listening to it.

She knows and understands her disability.

She knows how to work her disability and is quick to tell people “I am handicapped“, as a rebuttal.

She is a sensitive soul and can get her feelings hurt easily.

She sometimes feels sadness because of her disability.

She wishes she could do what others her age can do.

She longs to be a mother.

Her maturity level is that of a 12 year old.

She has a special innocence about her.

She hates her hands and feet, because they don’t do what she wants them to do.

She feels embarrassment from her disability, such as drooling, having an accident or because of the lack of hand control.

Her “best friends” are people who treat her like a regular human being.

She doesn’t like being spoken to like a “baby”.

She has an “attitude“.

She startles easily.

She can read and communicate via messenger.

If you are one of her “best friends”, she will text you every day.

She loves attention.

She tries her best at every single thing she does.

She always wants to help others.

She loves sweets!

She loves coffee!

She smiles through the pain.

She struggles every day but remains happy.

She loves Disney and is saving her money to go to Disney land.

She has an old soul and enjoys watching old murder mysteries.

She loves going to the lake and camping.

She gets so excited when she learns something new or masters a new goal.

She forgives but she doesn’t forget.

She loves the Lord and looks forward to the day she will “walk” with Jesus.

She is my hero.

She has so many people that love and adore her.

She has a mom that will advocate for her everyday of her life.

Of course, there is so much more I could share about my sweet girl, the list could go on and on.

CP may affect her body, but it can never take away her beautiful mind and heart.

I encourage you to get to know people with disabilities and don’t let their diagnosis define them.

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Why I Love Bitty & Beau’s Coffee Shop

As some may know, my daughter ,Ciara, recently started her very first job.

In summer of 2021, I heard about a coffee shop called Bitty & Beau’s was coming to Waco and they were going to be hiring people with disabilities.

Ciara and I decided to attend the job fair, just to check it out. We didn’t get our hopes up, in fear of the job not being accommodating to her needs.

We soon realized they were interviewing applicants that day.

Ciara was doing so good in her interview, without my help. That’s when it sank in that this could happen, my baby girl, could get this job.

A few weeks later, I received THE e mail… Ciara got the job! They wanted to give the news to all the employees together at one event. They disguised the event as a wiffleball tournament at Katy BallPark in Magnolia Market.

When we arrived at the event, we were greeted with popcorn and lemonade.

Ciara was a little confused but was excited to see what a whiffleball tournament was.

The field was bombarded with people holding signs saying “You Got the Job“.

Mark and Amy Sauer (the owners of the Waco location) and Grace Casper (general manager of the Waco location) entered the field holding Bitty & Beau’s aprons.

They called each employee, one by one, to come up and receive their apron.

To say Ciara was excited is an understatement.

It was such a special moment for all the employees, families, and friends.

Ciara has started her new job at Bitty & Beau’s, as the drink caller. They have a very unique way of calling their orders. After you place your order, you are given a playing card, when your order is ready the caller calls your card.

Ciara couldn’t be happier with her new job. They have accommodated all her needs and made her feel like an adult.

We really never knew if this could be possible for Ciara. For her to be independent at her job and in a safe work environment.

I feel like Bitty & Beau’s made a dream of Ciara’s come true.

I can never thank them enough but I would like to to say thank you to Mark and Amy Sauer (the owners of Bitty & Beau’s Waco) and the Founders Ben and Amy Wright.

If you want to learn more check out their website https://www.bittyandbeauscoffee.com or come by one of their many locations. I promise you won’t be disappointed.

You will be greeted by some of the most amazing and dedicated employees and some pretty amazing drinks as well.

They also have merchandise you can purchase that has their slogans “Not Broken” and “Radically Inclusive“. You can even purchase Bitty & Beau’s aprons.

You may even catch them during a dance party and join along.

“It’s More Than a Cup of Coffee”.

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My Accessibility Dreams

When you have a child in a wheelchair or if you yourself are in a wheelchair, you notice accessibility problems in OUR World.

Most people never notice these problematic situations, unless you have experienced such problems. I know that I never noticed accessibility problems until I had a special needs child.

In a perfect world, everything would be accessible for these amazing people, people that have to face struggles everyday. Why should they have to struggle with accessibility.

My dream would be that every business, house builder, and individuals in the community would consider people with disabilities and make every place accessible.

Here are a few of My Accessibility Dreams.

More Ramps

Every business should have ramps for wheelchairs. When Ciara is in her power chair, there is no way to lift it over a curb, it is extremely heavy.

You would think every place of business would have ramps, but we have ran into obstacles at places such as Churches and older buildings.

Automatic Doors

I wish every place would have automatic doors or a button to push that allows the doors to open and stay open long enough for a person in a wheelchair to get into building.

Ciara is fortunate enough to have me accompany her to open all doors for her, but I can’t imagine how hard it is for independent people in wheelchairs to open the door and to maneuver into the building. People are not always nice enough to open doors for people with disabilities, and automatic doors give people with disabilities the freedom to be independent.

More Accessible Parking

So I know everywhere we go has accessible parking, but sometimes there is only 2 or 3 spots which makes parking hard for people in wheelchairs.

We have a van with a side wheelchair lift, which requires us to park in wheelchair van accessible spots, the spots with lines on the side, to be able to lower the lift and safely unload a person in a wheelchair.

If there were more van accessible spots, that would make life so much easier for people who have to depend on those spots.

Save Handicap Parking for the Handicapped.

Now, I know a lot of people have disabilities without being in a wheelchair and depend on the accessible parking, but if you don’t require a wheelchair, please save the van accessible parking spots for people in wheelchairs.

If you are not disabled, please don’t take the accessible spots, if I can’t find a spot to park to unload Ciara it leads to us either parking way out in the parking lot so that nobody parks next to us, so I can lower the lift to unload her. Or if that’s not an option, sometimes we just have to leave that place off business.

Think About Your Guest in Wheelchairs

This is one of those you don’t think about it unless you have been, there kind of requests.

If you are planning a big event, think about your guests that require a wheelchair. Make sure there is spots open for a wheelchair to maneuver and park.

There has been so many times we attended weddings where Ciara literally had to sit in the aisle, that the bride walks down, because there was no place to park her chair other than the aisle.

I know sometimes that’s impossible to do, especially places that have bench seats, but if there is a way to remove a chair for a wheelchair to be placed, they would greatly appreciate it.

Adult Changing Tables and Accessible Bathrooms

Most places have that one stall that is accessible. It’s bigger and has bars installed. It would be nice if there was more than one accessible bathroom but a changing table for adults and children would be wonderful.

There are times I need to change Ciara’s pull up while we are out and I have to do it from her chair. If you have never changed a pull up from a wheelchair, it is challenging for sure.

Cooks Children’s Hospital has a bathroom with a big changing table, with controls so you can lift it and lower it, which is extremely helpful for transferring. But why only have them in hospitals, why not have them in stores and doctors offices as well.

Accessible Seating

In a perfect world, every place of business would have seating for wheelchairs.

Restaurants are terrible about not having wheelchair seating. We remove a chair for her wheelchair to fit but there is never enough room. We are always cramped and feel overcrowded.

Also, why do theaters always have one wheelchair spot right in front of the screen?? We break our necks looking up at the screen, it is not a comfortable experience. I have found only one theater that has a wheelchair lift to take people to their seat. It was wonderful! The Hippodrome in Waco is by far our favorite place to watch a movie.

Amusement Accessiblity

If you ever had to tell your child “No, you can’t do that because it’s not wheelchair friendly” you know the heartbreak you feel. Having to tell your child they can’t do something because of accessibility. We tell our kids they can do anything, but then you have to explain to them they can’t do it. That’s the worst feeling in the World.

Now, I know not every amusement park, Waterpark or Parks in general can have everything wheelchair accessible, but why not have some things that people in wheelchairs can enjoy.

One of the many reasons I love Morgan’s wonderland in San Antonio, is that everything in the park is accessible, they even have a Waterpark and photo props that a wheelchair can go behind. Sea world was also surpringly accessible.

These are just a few of the struggles people in wheelchairs face, the list could go on and on.

We face struggles everyday with accessibility, if more people put themselves in the shoes of a handicapped individual, we could make this world accessible!

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Make Your Own Rules

Having a Special Needs child comes with its own set of difficulties. There is no rule book for how to raise a child with disabilities. Books about reaching children’s milestones do not apply to your child’s specific special needs.

Even learning about your child’s diagnosis does not help prepare you, because every disability is so different. For instance, Ciara has Cerebral Palsy and cannot walk or talk, but there are others with CP that can walk and talk normally. So finding the right information or help, can be exhausting.

I have learned that we have to make our own parenting rules and go by our own knowledge.

After 21 years, I am still learning about Ciara. I am still trying to figure out what I am doing and questioning if I am doing the right things for her.

I thought I had everything figured out and then..she became an adult! I thought getting her through school and puberty was my most difficult challenges. I was wrong. Now, I am learning how to transition her into adulthood and prepare a future for her. I feel as if her whole future depends on the decisions I make now for her.

There is no manual to tell us what to do to prepare our kids for the future, so we have to what we feel is best for our children.

On top of all the stress of raising a special needs child, there is always judgment and pressure coming from professionals. “What are you doing for her future?” “What is your next step?” The questions never stop coming! Seriously, I don’t know what I am doing with my life, then I have to tell them exact plans for my daughters future!

People never stop judging, you just have to get past all the questions and realize you are doing whats best for your child. People can make you feel like you are not doing enough for your child, but you are. You cannot completely exhaust yourself trying to be perfect, you just have to do what you can do.

There was a point in my life where I let Ciara’s disability control my whole life. Everything I did in my life was directed towards Ciara. I was was consumed in therapy appointments, Doctor appointments, special needs conferences, and lots of research.

I still do what needs to be done for her, I just don’t let it consume me. We have a life outside of her disability and we also have a nice balance of special needs activities. I feel she is happier now that I am not obsessed with her disability. She is not reminded constantly of her disability and it helps her to feel more normal.

People may judge me that I don’t have her in tons of therapies and Doctor appointments to consume our weeks, but I make the rules and do what is best for my family.

She still sees her Doctors when she needs to and I am still working on preparing for her future, but we are going to enjoy life in the process.

Make your own rules for your special needs child. Do what you think is best and forget about the judgments and questions. You know your child better than anybody, so you will make the best choices.

Don’t let your child’s disability consume you, enjoy life with your special needs child.