I remember someone said to me that my life was very easy. I looked at them with a puzzled expression because I'm not one to complain, but easy isn't what I would describe my life. I asked them for more clarification on why they would say that. Their explanation was quite simple but extremely surprising to me. My life is easy, according to them, because I have personal care attendant services and they do everything for me. This was also said at a time when I was a single mother to my baby daughter after my husband had unexpectedly died. They went further to say that I wasn't a true single mother because of my attendant care.
I would like to take this opportunity to shed some light on the reality of personal care attendant services are like and the regulations in my state of Pennsylvania. I, and the thousands of others that need personal care, are truly blessed to have services that help us not only be independent, but to be healthy, safe human beings. Without attendant care, I would fend for myself while my husband would be working which means I would go hungry, thirsty and not be able to use the bathroom. I am pretty sure that I would manage to survive, but my quality of life would greatly diminish.
However, personal care attendants aren't maids that just do everything for you. They're people that are like anyone else that work to assist you in what you can't do. Everyone has a different personality, work ethic, strengths and weaknesses like any employee. But these employees work with you on just being you. They help get you ready, feed you, help with your house and all that comes with it. With that being said, I live a much more structured life than I might like. If your attendant is coming in at a certain time then you best be awake no matter how bad you slept before. You want to do something out of your routine, you best be ready to justify it and hear about it if they might not agree.
Communication starts from the minute you wake up to the minute they are done your shift. It doesn't matter if you're groggy or in a quiet mood because you are the boss. You need to be as present as you would if you're a boss of any company because the company is very important, yourself. I'm not saying this is all bad, but being a good boss from sun up to sundown can tire someone out. Not to mention that you need to be ready with what you want done that day, how you want it done and oversee it being done.
Having a personal care attendant isn't luxury, but it is a necessity. Being a mother also adds another dimension because it doesn't just become you and your children. There's this whole other person who has their own ideas, feelings and thoughts that you need to incorporate into how you handle your child. In a way, you're always on display in a sense. So, yes, if you're a single mother with a disability, it doesn't matter if you need personal care because you're still your child's only parent.
In getting and keeping attendant care going smoothly isn't easy where I live. Every year you are given a certain amount of hours to use and a payroll company handles the pay checks. If there aren't any problems, this method works great. However, I'm going through a situation now that is very stressful. My hours for 2017-2018 were approved back in April, but I just found out that the hours aren't in the system. Therefore, my attendants haven't been paid and won't be paid until they are! No one seems to be able to tell me what the problem is because it has been approved.
So imagine now having attendants that work hard for you not being paid for their job due to unknown reasons or no fault of your own. Stressful for my attendants and on me because I care about my workers. I am also at a risk of losing them because they do need money to live.
Tomorrow I will be back at trying to find answers and praying that my attendants get paid on time. The next time that you might want to think people who have personal care attendants is so easy, please think again. We are all just people trying to weave through this life.
First published on cerebralpalsynewstoday.com by Jessica
January is a new month and year which makes a whole new start. Having cerebral palsy shouldn't stop anyone from making new year resolutions. I like Christmas time, but I also always liked opening a brand new calendar to write down my New Years resolutions. I rarely complete all of them, but writing my goals down helps keep me on track. Having goals keeps you moving ahead and obtaining achievements. Big or small resolutions doesn't matter as long as you make them and not give up when they start being difficult.
Here is a suggested list of new year resolutions that might inspire you to make your own. Don't ever be afraid to reach high for goals. It doesn't mean you have to complete all of them, but puts you on the fast track of success.
Look back at the previous year and see what you can improve on or complete. Is there a bad relationship or unhealthy friendship that you should end? A bad habit that you are ready to drop? Maybe you have things that you need to finish but you kept putting it off. Now is the time to tie up any lose ends so you can move on to a new beginning.
Not being able to walk or physically do something gives people the perfect excuse to not exercise. I know because I've done it too but as long as you can move at least one body part, you can exercise. Call your local gyms and YMCA to see if they have any exercise equipment that you can use. Perhaps they can order it for you. Join an exercise class and do what you can. Stop the excuses because we all know having a disability doesn't mean you can't exercise. It only means that you need to adapt your routine.
Get all your medical appointments scheduled and actually go to them. Having cerebral palsy can make going to the doctor feel exhausting. However, putting off serious tests can have very dangerous results.
What are your professional goals? Sometimes disabilities can make us forget that we do have value aspects to contribute to society. Technology and the Internet has made career goals so much more obtainable. Ignore the fear and just do whatever it is that you love. No more excuses because life is too short to waste.
Love more. When I say love more, I'm talking about loving others and yourself. Are you in a relationship that gives to you what you deserve? Are you giving to the relationship what they deserve? Thinking about others, making time and helping others are the way to happiness.
Get aquatinted back to physical, occupational, and speech therapies that will improve your life. Therapy might be hard work, but it also pays off. No pain, no gain and that is the simple truth.
Choose happiness. Getting wrapped up in self pity and laziness are just too easy to do. Happiness isn't a gift from someone else. Happiness is a gift you give yourself every day. If you're a miserable person, then you tend to attract miserable people into your life. However, if you choose to find joy in life, you'll attract joyful people. Do things that make you feel happy. Let go of thinking everyone is out to get you. Look for the good in people instead of the bad. Drop drama and make the right choices so you avoid drama. Be happy.
I hope you have a pleasant, successful, friendly, and happy year. Focus positively and look on the bright side. Smile and open your hear to love, forgiveness, and hard work.
originally posted by Jessica Grono on Cerebral Palsy News Today
Preschool age children are so much fun, and their little minds are going full blast. When a child has cerebral palsy, the fun doesn't need to stop. In fact, they need the stimulation and experiences perhaps even a bit more than someone without cerebral palsy. Love, time and creativity always goes far with children.
Being a parent to a child with cerebral palsy can leave you wanting ideas to help your son or daughter. I compiled a list to help give you some ideas to use with your child as soon as possible. My main bit of advice is to use trial and error. Sometimes what doesn't work one day will work the next day, week or month. It can take awhile to get muscles and brain working together. Have patience, flexibility and commitment to make this process enjoyable for the both of you.
Any time that you can give to your child is so valuable. Activities that keep them moving, reading, and mind stimulating are brilliant to use. Giving them an abundance of love and room to grow are the main things preschoolers need no matter the ability.
originally published by Jessica Grono on Cerebral Palsy News Today
I didn't know a whole other community existed of people who had disabilities played competitive power wheelchair hockey. I didn't know that I would play as hard as I do. I didn't know I would enjoy every second of my playing time only to try to do better the next. I didn't know I would meet some of the best friends I could imagine that accepted me for who I was and not what I'm not. I didn't know until the day I joined Philadelphia PowerPlay.
I met Pat Hilferty shortly after I joined hockey. He gave me a big, warm smile and made me feel welcome. I was in awe watching him play goalie only to hope that one day that I'd play as goalie too. He always asked me about my children and liked to talk to them. He encouraged me to do my best but don't worry about the mistakes. I liked playing defense when he was goalie because he taught me skills and we had awesome teamwork.
I admit that I'm not a huge sports fan, but I love to be apart of a team, be judged on my playing ability fairly, and to make friends. I didn't know of all the players as the other team members talked about national teams and sports conversations. But when they say that it's my time to play, I give my absolute best and learn from my mistakes (or at least try.)
I thank Pat Hilferty for founding such an awesome organization. He was the rock, the support , the role model and biggest fan to all of the players. He has made an incredible difference that will be well felt in years to come.
During the last few weeks in the news, there has been an increase in stories featuring children and adults who have cerebral palsy being horribly abused or their rights being limited. Finding the right words to portray how I feel about these issues aren't easy for me, but abuse needs to be addressed and seriously worked toward finding a better solution. People that abuse or take advantage of people with disabilities have some serious issues that should not ever be ignored.
Let's start with Alex Scott who is 44 from Virginia who has non verbal severe cerebral palsy, and he takes time to eat his food. The group home where he has lived for twenty years is denying him access to live there anymore until he has a feeding tube according to the Washington Post. His family and medical team doesn't believe Scott needs a feeding tube but just patience in feeding him. Scott has been in the hospital since because he doesn't have any place to go.
Having a feeding tube installed is a surgery that includes risks, uncomfortable times and recovery. But most importantly, Scott enjoys food and eating. Once a feeding tube is in place, eating orally is no longer an option. Also, this surgery isn't necessary. As a person who has severe cerebral palsy and takes longer to eat, this situation is very scary to me. I don't think anyone who has a disability should be forced into a non medical surgery just to make a caregiver's job easier. This is a human rights violation.
I also, unfortunately, just read a horrific case of a father who murdered his four year old daughter who had cerebral palsy. Her murder happened in 2015, but he just pled guilty to her murder. Her death is obviously very upsetting and tragic. Four year olds can't defend themselves to begin with but having cerebral palsy on top of that makes the situation even more disgraceful that anyone could harm her let alone kill her. But the most frustrating part, in my opinion, is that the father had already been investigated and known to abuse. So, my question is how was he ever allowed to be alone with his daughter in the first place? I would think that one incident of abuse would prevent anyone from being alone with any child.
There has been several different cases of abuse and extreme neglect of children and adults who have disabilities including cerebral palsy. I believe that society has a way of honoring those that care for people who have disabilities that sometimes without realizing it, it can devalue the person living with a disability. If abuse happens, society somehow tries to justify that the caregiver or parent was under stress or felt hopeless. However, feeling stressed or hopeless doesn't give anyone a right to hurt someone, abuse someone or kill someone.
Society needs to take the attitude of the "hero" caregiver or parent and focus on the unit as a team. The child or adult who has the disability is an individual with feelings, intellect, and rights to safety as anyone else. They need advocacy that if abuse is suspected or documented then it's time to help and not wait until someone dies. Punishment for abuse or murder doesn't need to be less because the victim has a disability. Value of human life needs to be put back in its rightful place.
If you suspect abuse, please do something to help. Don't look the other way or try to forget. This is about someone's life, and they deserve a safe environment to live.
Originally posted by Jessica Grono at http://cerebralpalsynewstoday.com
People with cerebral palsy and other disabilities would like society to see them equally. Society has a way to give people with disabilities the term "special" when all we really want is to be seen as normal but needing to do some things differently. Depicting people with disabilities has been lacking in television and movies. But, finally there is a new sitcom on ABC that now sheds a whole new light on what having a disability is really about. Speechless is on Wednesday 8pm ET on the ABC network. I, and several people with cerebral palsy, couldn't be more excited.
When I was growing up, I longed to see someone in a wheelchair star in a movie or television show. Yes, I could relate to characters that didn't have any disability, but it's important to see someone with a disability. It's important because they teach indirectly that having a physical disability is also normal. Perhaps if media saw people with disabilities more than someone that was dying, incoherent or also mentally challenged, then they would expect them to also be just like themselves.
The show, Speechless, depicts a family that include a mom, dad, two sons, and a daughter. One son is JJ and he has cerebral palsy that affects his ability to walk, motor control and speak clearly. The actor who plays JJ is Micah Fowler, and it's really cool that he actually does have cerebral palsy. Many times Hollywood casts people without disabilities to play characters that are disabled. Fowler's cerebral palsy isn't as severe as JJ's so he has to resist the urge to use his hands.
JJ uses a computer to communicate with a laser pointer. He isn't sick, mentally challenged or suffering in any type of way. He's just a normal kid trying to navigate his way in school like everyone else.
His mother, Maya, is played by Minnie Driver. Maya is JJ's biggest advocate and support. She does everything possible to give him an equal playing field in life. She also has to learn how to let go a bit and tend to the needs of her other two children. She adequately depicts what most parents of children with disabilities do for their children on a daily basis. Her love and support of her son is right on point and hits a soft spot in many parents today.
I am very happy with the show overall. My parents also had to fight for me to be in a regular classroom. The fight was even a bit harder back in the 1980s when inclusion was still very much in the infantile stages. My parents fought for me, but I also had to learn to fight for myself. I knew what I'm capable of more than anyone so I needed to let others know as well.
Like JJ in Speechless, I also had an aide in school. She helped me write, fed me lunch and any other physical aspect that I needed in my school day. Luckily, I was fortunate to have the best aide that I could imagine. I realized this whenever my aide needed a day off and they would send in a substitute. Having other clueless aides made me appreciate who I had!
One of the best things about the show Speeches is the use of humor. It is relatable and very much real for those of us who have disabilities. But the humor is for everyone. I love to laugh and sometimes in situations that seem unreal, all you can do is laugh. Sometimes the every day challenges can be the most hilarious. For example, people who don't know me that talk to me like I don't understand anything do make me feel frustrated, but it can also be humorous.
originally written by Jessica Grono published by cerebralpalsynewstoday.com