By Dr. Kathy Allen
State Director, Louisiana Black Advocates for Life

Raising and caring for a child with special needs means embracing a lifestyle in which there is a constant stream of “new” things. When my child was born I joined a special “members only” club. I became the parent of a child with Down syndrome, a medical diagnosis that was completely new to me. I needed to become familiar with a set of supports and services that were necessary to strengthen my child’s physical and social-emotional capacity. Like many mothers of children with special needs, I became somewhat of an expert on medical terminology and could memorize and explain medical procedures, medications and dosages with ease. I had to develop a new view of “privacy,” since the wonderful people who were providing early intervention services had to come into my home even before I had a chance to get to know them.

But through it all, Joshua and I developed a joyful life in which I learned to expect the unexpected. As I watched Joshua learn to walk, talk, and show his own unique personality, I became aware of my role as his greatest advocate, the “expert” who was responsible for helping his doctors, therapists, teachers and the world “out there” connect to “Team Joshua.” Although we have certainly had challenges along the way, we have been blessed to have a strong support network and a relationship in which we look for joy in every moment.

The current COVID-19 crisis has become another unexpected new thing for me, and for Joshua. We still need a support network, but we’re now physically isolated from family and friends, from our church, from school, and from many of our usual activities. Joshua is asking every day about school. I try to give the best, most upbeat answer possible, usually, “School is out right now, but we can still do your reading and writing and math, and other fun things, and we can go outside, OK?” My child, who is usually at school all day, is now home 24/7, and I’m his source of comfort and emotional and physical support. I have to continue to be Joshua’s advocate, and a huge part of that is taking good care of myself.

So, the latest “new thing” for me is to remember that God is in the middle of our lives right now and that there is still purpose in every day, even in these days of social distancing and staying at home. We still have to keep “Team Joshua” intact and function with joy. Prayer, for both of us, is even more important every day. Sometimes it’s praying the rosary, or watching a live stream of the Mass, or reading a devotional, but sometimes it’s simply saying “Thank you, God, for today” before we go to sleep. I’m probably letting Joshua spend more time than usual on his electronic devices, but since he loves Christian music and singing, and it keeps him lifted up, it’s OK.

Here’s what “Team Joshua” is doing to make it through these days of COVID-19:

• Remembering that God knows about this virus, and He sees us and knows our needs. Even if Joshua is not expressing everything he is thinking, God knows all his thoughts and will meet his needs, sometimes through me, and sometimes through speaking directly to Joshua’s heart.
• Explaining as many times as necessary why there is no school and why we can’t go to Maw-Maw and Paw-Paw’s house to visit.
• Keeping our daily schedule as regular as possible, but not rigid. I’ve learned to be OK about eating meals at different times, taking a bath in the morning instead of at night, letting Joshua have time alone (with supervision) if he wants to be alone, and resting if I need to rest.
• Knowing that if we don’t get school-type work done every day, that’s OK, as long as Joshua is happy and enjoying the day. There are many ways to learn about life and the world.

We try as much as possible to stay connected to family by telephone or email or social media, but limiting social media time has been very helpful in keeping a joyful, hopeful attitude.

So, advocacy for my son these days, like every day, is embracing the unexpected with determination to be joyful, regardless of circumstances. We’re all going to make it through this moment in time, ready for more new things!