Work and the special-needs family
ESPN commentator and former tennis star Mary Joe Fernandez remembers the day she learned her son had asthma. “It was like a wake-up call that threw me into action,” Fernandez said.
She realized she would need to become ultra-organized to keep up travel for her broadcasting job, find the best asthma treatments and manage her son’s medical needs. “I came up with an action plan that I leave behind with his school, or baby-sitter, or my parents so when I travel they know what to do.”
Fernandez just recently started to talk openly about her son’s illness, even during a recent tennis clinic for children at the U.S. Open in New York to raise awareness and empower other parents.
Despite their fears about job security, more parents of children with chronic illnesses and disabilities are opening up — even at work. What they have going for them is strength in numbers: One in seven children under age 18, or approximately 10.2 million children in the United States, have special health care needs, according to Department of Health and Human Services.
Read more here: Work and the special-needs family – chicagotribune.com.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I have been out of work since my ex-wife left me and Didder Bodder; prior to that I was a draftsman in mechanical engineering. In addition, I wrote custom software applications for the companies I worked for and made many improvements to systems that saved those companies a lot of time and money. However, none of what I could do, or what I had done was taken into consideration when my attendance became an issue due to having to take care of my little one. They simply get rid of you and replace you with someone new, and move right on along.
I need a job bad right now, I’ve been trying to find a way to make something work for two years and I still have no idea how to make a full-time job work. I don’t even know how to make a part-time job work.
I think we need a work group — do you think you would mind starting one? Because employment issues effect a lot of our families and it’d be nice if the community could help each other problem solve. Here’s how you start a group:
https://supportforspecialneeds.com/site-how-to/creating-groups/
My heart goes out to other parents with special needs children when I hear/read stories like this.
I’m fortunate enough to live in a state (NY) that has many resources but I know how difficult it can be. While I am employed, my husband is not and money is sometimes tight. My only hope (and a great big one) is my faith in God. He can and will meet your needs.
Michelle
I agree with you Michelle; that is all we can do is turn our hearts and souls over to God. I too have great faith and attend church. I am constantly reading the Bible, which in a way is a small miracle in itself because my parents are not devoted Christians. I owe my faith, in a large part, to my grandfather on my mom’s side who was a Baptist minister and a well educated man; he was also disabled for his whole life, though his was strictly a physical disability.
My daughter and I are actually staying with my parents right now, and even my devotion to God and to the Bible sometimes presents its own challenges, because while my father is a good man, I do not know where is heart is concerning the Bible or Christianity. I could best describe him as “John Wayne”; he is a hard working man with strong moral values, and he believes in treating people the way they should be treated, but in my opinion, he isn’t particularly fond of the Bible — not to say that he dislikes it, he just doesn’t understand how important it is.
My current situation is very stressful because I know I need a job, but I also have so much to take care of with Didder Bodder; if I devote my time to a job, my daughter and her needs are neglected. If I devote all of my time to my daughter and don’t get a job, then my daughter’s future is at risk and again, she is neglected. If I get a job and try to take care of the things she needs taken care of while I’m working, then work is neglected and I end up losing the job. This is something that has consumed my thoughts for more than two years now, among many other issues that need attention and I’ve simply patched up and kept moving forward.
I think a lot about what is going to happen when I can’t patch things up any longer and it all comes to a head. Eventually all things will add up to something that will cause everything to crash. I will keep my faith in God because I do believe that things will work out when that day comes and God will provide something for us, and I believe that, what that will be, is going to be based on the amount of that faith.
Casey