The World According to COVID-19

Since covid-19 hit, I’ve shared how it interrupted my life from a person with a disability perspective. I often don’t think about how it may affect my family, especially my mom, who has and always will continue to care for me until she can’t. Although I thrive to be independent, I must not forget mom wants the best for me and whatever I go through not only affects me, but it also affects her. A parents’ job is to make sure their children are ok no matter what age they are. When one of their children has a disability, the job becomes a lot more deliberate and determined. I’m thankful for my friend, co-worker, and today’s guest-blogger Cindy, for broadening my awareness and to look at things in a different light. I am forever grateful for her courage to share.

Shari

The world according to COVID-19

The world sure is going through many changes.  Some would argue for the good and maybe not so good. But change is inevitable, if it wasn’t for change, most of us would not become the person we are today or will be in the future.

Sometimes I can fall into the negative side of the situation, but then life happens to remind me that we are all here to try and make things better for the next generation; and that is what I hope I can do for my children and their children.

I specifically want to make it a better world for my adult son, Kyle.  For those of you who don’t know my son Kyle, he was born with Fragile X.  What is Fragile X?  Well, it is a break down of your X-chromosome and causes many different side effects.  One being intellectual delays and sometimes behavioral issues.

COVID-19 has had an impact not just on my life, but also Kyle’s.  He has had to endure the mask mandate, the closures and shutdowns, and for Kyle, this just rocks his world upside down and sideways.  Kyle does not handle change very well.  It can cause behaviors and mental instability. He has handled it better than we thought, but a few weeks ago, Kyle had an outburst and started to melt down.

During this outburst, Kyle’s caregivers needed a break.  Why?  Because the current situation with COVID-19 has brought about a change that has really interrupted his livelihood. That change is…… there are not enough Direct Support Professionals to assist Kyle in his home.  They have been overworked and underpaid for many years and COVID-19 has accelerated a shortage.

Kyle stayed with us that weekend of his melt down, but what would happen if he did not have a family?

There is a national crisis right now, at least in the state of Ohio, for Direct Support Professionals. Kyle doesn’t understand why one staff is gone and then a new staff comes into his home.  For Kyle, it is all about structure and the less change the better. Well, we all know that the past 2 years have been nothing but change.  Kyle has a support system and siblings to help him when I leave this earth, but there are many persons with disabilities that do not have that luxury and are left behind.

With the current staffing issues and shortage of Direct Support Professionals, many persons are needing to find care elsewhere than in a home environment.  It is very sad because some are actually needing to go to a nursing home setting at the age of 40.  This is a tragedy.  What would happen if Kyle did not have our support?  He probably would have been abandoned and god knows where he would have ended up.

This is a crisis, but my hope is that I can help change the “system”.  A system that should change so that the people who need help get the quality care that is needed.  And that the caregivers, Direct Support Professionals, are appreciated for the work they do for such a vulnerable group.

My hope is that the change happening right now makes the world a better place to live, even if it is painful to go through.  History has shown that we come out a better society, let’s just try our best to be who we can be.  I know I am trying, some days better than others, but I also think about how I can make it better for Kyle.

So here is to a COVID-19 fatigued society, sending you the hope and dreams for  be a better world and place to live for all

3 comments on “The World According to COVID-19

  1. Vonciel English on

    When you see people day to day, you never know their story. Thank you for allowing us to see a glimpse into your life and how the pandemic has affected your family. There is definitely a need for those who are gifted caregivers to pursue their calling. We all have innate gifts that can bring positive change and purpose to the world. I pray that God will strengthen you and your family as we all continue to face challenges due to COVID-19. I hope that one special caregiver will come and bring the stability and comfort that Kyle needs.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *