Parenting with a disability.
One of the hardest things to deal with is a chronic disease that continues to debilitate you, not caring who is watching including your children. According to the National Council on Disability, there are 4.1 million disabled parents in the USA and I’m one of them. A concerning thought most disabled parents worry about when getting diagnosed is their children; will I be able to provide for them? The answer to that question is not that simple but I know that as a parent, we fight hard especially for our children.
Now everyone’s case is different so I will only be writing on my experience.
COVID-19 has changed everyone's parenting style in some form or another. Due to COVID-19, I’m always with my children(not a bad thing), but I can no longer hide my struggles and emotions with this awful autoimmune disease. Before when my children were physically attending school, I use to take my children's school hours as my time to get myself together; meditate, exercise, cook, get my mind right. With the pandemic, I’ve had to sit down and figure out how to time manage myself so I can be the best mother I can be while taking care of children.
On my bad days, I use to be able to breakdown and cry during the day while my kids were at school, now they watch me cry. I don’t even hide from them anymore because it is important to me that I show my children the good and bad sides of nmo. Children sometimes forget that adults are just as human as them. I believe it’s very important to show my feelings alongside a conversation to be able to explain what’s going on. For example, when my 5-year-old son sees me cry, I can tell he feels compassion towards me, giving me hugs and kisses (which I love). My 10-year-old is very understanding, a good listener, and helps me out tremendously with house chores because he knows I can’t. They get weird out when I’m emotional but it’s necessary to be open with them. They need to know that it’s ok to express your feelings in all their stages.
Communication is key! My children are understanding of my needs and don’t hesitate to help me when I need it (well sometimes lol). I suffer from severe spasticity, fatigue, and weakness in general so chores, stairs, and physical activities are very difficult for me. They understand that when Mami (me) is not feeling well it’s time for some space which usually means video games for them (smh). I’m not going to lie there were times when I’ve lashed out at my children because of my state of mind; most like due to physical limitations, depression, etc. I’ve learned to say sorry to my children, control myself and explain why I was wrong; another lesson within itself. This has been a learning path for both my children and me. I’m forever grateful that boys have been nothing but understanding to their level of comprehension.
Thankfully I have a very supportive spouse that allows me to parent my way. Parenting is not easy and with a disability, it gets even more challenging. I know some people aren’t as lucky and have their children taken away due to their disability. Fact: In 35 states in the USA, physical disability is a legitimate reason to take full parental rights away and 2 out of 3 cases fought in the court is favoring the able parent (www.ncd.gov). I take every day as an opportunity to work at being a better mom and teach boys something new. Parenting with a disability is challenging but not impossible. Remember to breath and enjoy the ride.
