When My Daughter With Down Syndrome Sustained a Traumatic Brain Injury

My husband, 20-year-old daughter Yassy, and I were riding our bikes on a well-known Williamsburg, Virginia Trail. The trail was brand new to us. My husband and daughter were in front, and I was behind them. We were going down a fairly big hill, and my daughter yelled “Whee!” with pure childlike glee. I remember thinking, “This is a perfect moment.” Then I saw her feet slip off the pedals, she was going so fast she lost her balance and in the blink of an eye – crash! It was a bad crash. She had her helmet on, but she was pretty banged up. I was afraid she had broken an arm or a leg. We checked her out and saw multiple areas where she needed bandages, but nothing seemed broken.

That evening my daughter was resting in her room after having about 15 areas bandaged. She seemed battered and bruised, but we were so grateful nothing was broken. I went to check on her and she said meekly, “I can’t look at my iPad. Take it now.” I called my husband right away and we decided to take her to the minor emergency center to be checked. They checked her and recommended we take her to the hospital to make sure she did not have a concussion. This was Labor Day weekend 2020 — right smack during COVID, pre-vaccine. We had no choice, we had to go.

After x-rays, the doctors said our daughter had bleeding in three areas of her brain, and bruising in two others. They wanted to keep her overnight, take more x-rays and see if she was getting worse, or was stable. She definitely had a traumatic brain injury. The whole scenario seemed surreal, it could not be happening. Thank heaven the hospital allowed us to stay with Yassy all night. She slept, and we prayed.

In the morning the doc said she could go home. Her second x-rays were the same. He told us to see the neurologist in a few days. They gave us some printed instructions and sent us on our way. That was it — our introduction to this area of disability. Traumatic brain injuries. Anyone can become someone with a disability at any time — they are just one accident or illness away. Our daughter already had a disability. She has Down syndrome. Now we had a whole new world to navigate.

Here are some things we learned.

1. Electronics can be very painful to people with concussions.

Our daughter stayed away from electronics for at least a month. She wanted nothing to do with her phone, iPad, computer, or watching TV. I had to ask people not to call, and explain that she was not using her phone. Life got very simple for all of us, cold turkey. Because it had to. We were very fortunate that she is not addicted to social media.

2. Always follow doctor’s orders.

The neurologist told my daughter that if she were a football player she would be out for the whole season. That was a great analogy for us. We knew then and there she would not be riding her bike again until sometime in later 2021. We also knew that getting her back to horseback riding was not an option, and other things were now off the table. We also knew not to tax her brain too much. She had just started an online college class on the anatomy of the brain, ironically. That was shelved.

3. Always wear a helmet when riding a bike, a horse, etc.

The doctor said she would have been in much worse shape without her helmet. We are grateful. And just like car seats—throw a helmet away once it has been in a crash. Get a new one.

4. Maintaining a safe routine is comforting and healing.

Yassy was about to start her Project SEARCH school year, which was online for two months. I reached out to her teacher and explained the situation. I reached out to professionals at the Department for Rehabilitative Services and Aging. They put me in touch with an occupational therapist who was very helpful. We worked together to come up with ways to help Yassy slowly be able to participate online with her classmates. She was only able to be on a few minutes at a time for a long time; things progressed slowly.

5. Theraspecs can help people with TBIs, migraines, etc.

These glasses with pink-tinted lenses are a wonderful help to people with TBIs, migraines, etc. helping them deal with sunlight, screens, etc. We are forever grateful to the OT for recommending them. He also recommended taking brain breaks often with special blindfolds to block out all external stimuli.

6. You can still have fun.  

We went back to some very simple board and card games. We drew. We colored. We painted. We took daily long walks. And we had a blast! It was also a great way to gauge how our daughter was coming back intellectually. These times of close interaction were also chances for close observation. That was needed because our daughter’s expressive language is delayed, and she has a very high pain tolerance.

7. Gratitude, gratitude, gratitude.

We were grateful for the good medical care our daughter was able to get, even during COVID. We were grateful none of us got COVID while she was in the hospital. (We definitely masked and wore shields.) We were grateful for the circle of love that formed around her made up of friends and church family. And we were beyond grateful that she fully recovered in time.

8. When it is safe, get back on that bike. Both literally and figuratively.

We all know that saying about getting back on the bike after a fall. It is true. And as a parent, it is important to not command your child to do that, but to instead give them the encouragement and love they need to know deep inside they can indeed get back on again. In June 2021, Yassy was back on her bike! Recently we passed the one-year mark since her accident. It seems like it was just yesterday, and a lifetime ago all at the same time.

I have had friends whose children experienced TBIs from car accidents, sports, and falls. Some of them had disabilities, and some of them did not. Every single family was forever changed, in one way or another. Traumatic brain injuries are indeed disabilities, and the disability community must always remember that and include everyone.