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
Free time doesn't come to me very much. Or, I should say that I don't let it happen to me. I often feel like I should be having free time because I should be working. However, when I do take the time to relax, these are the things that I enjoy.
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
If you know me, you might think you may know everything there is to know. But everyone has a few things that you might or might not know about them. Here is a top ten list of things you might not know about Jessica Grono.