It’s now a sandwich press…

I don’t think I’m quite to the point that I feel like a panini, but it’s getting close. I’m in the press but the heat is not on yet.

Many parents, particularly Mothers, of children with disabilities choose self-employment or part-time work in order to accommodate the demands of meetings, doctor’s appointments, and so on. Currently, I’m looking at statistics that illuminate the cost of this on families. It is interesting (more on that another day).

The cost that I believe is missing in statistics is the lack of paid time off when one is self-employed.

My Mother’s journey with cancer is in it’s final weeks. She has entered hospice care, there’s nothing more that can be done to battle this or keep it at bay. My father has really risen to the occasion in caring for her. He is, however, experiencing my life when Andy is ill. The difference? His situation may go on for a couple of months. So he needs release time, the ability to go out and get food and do his banking and so on.

I spend around two hours a day over there, if not more.  Some days I am there with Mom so  Dad takes advantage and goes to take care of life. Emotionally, I’ve been absent from my jobs since Mom went in the hospital in mid February.

The guilt is now settling in. And the lack of billable time is hitting me hard.

Thus the beginning of the sandwich press – financially.

This is the statistic not included in reports about the financial impact of having a child with a disability. Not only is there loss of potential income due t the choice to work part-time or be self-employed, but there is the impact of not being able to take family leave at a time like this.

When my brain is back at work, I hope to really look at this in a more educated fashion. For now, it helps to share the fatigue of it.


About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at
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One Response to It’s now a sandwich press…

  1. Tamara says:

    Sorry to hear about your mom, Joan. My dad passed away almost 2 years ago. Now my mom is having problems with her memory – We’ve just asked her to quit driving and I’ll have to do more for her as I’m the only one nearby.

    Even though I’m not self-employed, I’m still feeling the sandwich press as Shawen’s needs, my mother’s needs and the rest of the family meet the currently high demands of my job.

    I always liken it to a peanut butter sandwich. Get squished hard enough and some parts are likely to fall off even though it’s pretty dang sticky!

    And my list of what’s falling off is mounting! 🙂

    Hang in there – prayers for your family.

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