Parents of Children with Disabilities Have Been Socially Isolated Prior to the Coronavirus Quarantine

I hope you all are finding ways to maintain your peace at the current moment. Social media, specifically Facebook has been a place of stress for me lately, so I haven’t spent a lot of my time online. I’ve been attempting to do things that offer me peace. Cooking and spring cleaning, evening walks with my husband, and spending time with the kids. I’ve attempted to maintain my mental health by praying, practicing meditation, and taking herbal supplements like 5-HTP and Kava when necessary. I see a lot of people having a difficult time with social isolation during this global pandemic. A human need is social interaction. Having friends is very important. Something I haven’t seen a lot of people address are the people who have felt socially isolated prior to all of this happening. One of which is parents of children with disabilities…….

Ayyoub has had epilepsy since he was 3 years old. He’ll be 13 in a couple of months. There were years where his epilepsy was quiet, and managed with and without medication. In the past 3 years, his epilepsy became intractable. That means resistant to treatments and medications. There are nights that my husband and I have had to take shifts of sleeping and staying awake to keep an eye on him. Times where we haven’t been able to leave home because he’s been seizing every hour and being outdoors is just unsafe.

During these years, it’s been difficult to keep and maintain friendships. A lot of friends don’t understand what goes into having a child with a disability. They think that your cancellation of getting together is something personal, when it’s not. Caring for a disabled child for years has been mentally taxing. I’ve gone to therapy to find coping mechanisms so that I don’t have an anxiety attack every time my son has a seizure. These things aren’t easy to explain to people and I don’t seek pity from others, so you won’t see me talk about it a lot.

I’m grateful that with new medications, homeopathic remedies and vitamin therapies, Ayyoub has been seizure free for about six months now. In the epilepsy world, that’s not a long time but definitely a blessing to us. We are just starting to feel some normalcy in our home. We have just began to feel like we could go out again to parks and playgrounds. Ayyoub hasn’t been able to participate in extracurricular activities like his brother has. Maybe in a few more months when things return to normal we can explore that possibility.

If you know moms who have children with disabilities, don’t forget about them. Reach out to them to say hello and ask how they are. When the quarantine is over, don’t ask if they can go out, just ask if you can come over. It’s not always easy to leave home when you have a disabled child. Let’s all be a little more mindful of others in certain circumstances during these trying times.