It would seem that I cease to be surprised these days but it is never ending. Just when you think you have it all figured out you face challenges from an unexpected angle that blindsides you.
For me this time it was all about work. I've fought very admittedly about issues of agencies telling us that we must be present for all therapies and in defense of other families as well. No one should feel like they must give up their livelihood or financial well being because they have a child with disabilities.
In all my professional life, I've worked for supportive and understanding organizations. My children have never been an excuse for not showing up, doing my job or doing the best I knew how. The last 3 years has been spent in the realm of Human Resources (HR), and working with these teams very closely. To say it has been eye opening would be an understatement - but a learning experience nonetheless.
I came into my most recent job with high hopes and expectations and with some concessions as a family that there would be more demands, and travel, but more flexibility and time working from home as well. The past 18 months has gone well, or so I had thought until last week when I was approached my my HR representative about my excessive PTO and Performance. Earlier this year our firm implemented an "Unlimited PTO" policy, which sounded great.
As I discussed the concerns with both my HR rep and Manager, the issues at hand and the time off were addressed, and I attempted to explain at some level these partial days off that were directly related to IEP meetings, therapy meetings, doctors appointments, and the like I was flatly met with the response of:
"We all have our cross to bear. I'm sure you don't have any more responsibilities that Sally* does".
*Name changed - another parent of 2 typical children
Upon hearing this I froze. I've openly shared within the firm from the moment I interviewed that I have 4 children, 2 of which have special needs. Our own CEO and his wife have a child with autism, and yet I was hearing that there was nothing that made me any different from anyone else who was a parent or an employee.
This has been devastating to me as well as eye opening. I had a false belief that there was some level of understanding of the demands of this part of my life. Everyday is an uphill battle to ensure scheduling of therapy, services, payments and progress in our children and our family. Not to mention the long term emotional and psychological demands of having children with special needs and the elevated levels of stress that we as parents harbor.
As for my personal situation - I choose to work - I like to work. The reason I sought a masters degree was not so I could sit home, but to have a career. Just like I don't want to be judged for working by agencies that feel I should be home with my child, I do not want to judged or made to feel guilty for the time necessary to take care of my children. This scenario has only added to my stress levels and has led to the realization that so many parents in this situation still sadly face. I know that we as a family are not alone in this battle, and many families face these challenges everyday - but still so much must be done to create awareness.
ADA protects us as parents as well. Read more at Wright's Law.
