Jayden's Story: A Lover of the Outdoors and All Things Water

By Chrisha Pool

My name is Chrisha Pool. I live in Louisiana with my three-year-old son Jayden and my husband’s brother, who is blind. Jayden is autistic, and my experience with him has had a huge impact on my life. I’m proud to be part of the group who pushed for a “Bryan's Call” law in Louisiana to send out a local push notification when any child or adult with an intellectual developmental disabilities is missing. Unfortunately, that law came about because a 12-year-old autistic boy went missing and was later found in the lagoon very near my house. I want to make sure that never happens again.

Jayden’s favorite foods are chicken nuggets and French fries from McDonald’s. Like a lot of kids, vegetables are not his favorite! He also loves the outdoors, he loves being outside, swimming, and playing in all things water. He’s getting very into baseball too, he really enjoys watching baseball.

When Jayden was younger, I noticed that he wasn’t meeting all his milestones, especially when it came to learning to walk. After his father was incarcerated when he was 11 months old, he just kind of shut down. His pediatrician thought that he might have autism and recommended testing. With his autism diagnosis, he has access to services like occupational, speech, and physical therapy.

For now, I’m planning to homeschool him. Jayden is an eloper, and I worry that his school might have trouble keeping him safe. We had an IEP meeting and when I expressed my concerns, the school and I couldn’t come to an agreement. I’m also worried about the funding cuts and everything else going on right now.

Jayden taught me that not everybody has a voice, and some people who want to have a voice are scared to have a voice.

He receives primary Medicaid coverage and everything Medicaid does not cover, I have to pay for out of pocket. For example, his Medicaid coverage for therapies isn’t enough, and I have to pay for his diapers out of pocket. I’ve heard about waiver programs, but not everyone is eligible. Even when filing for Social Security disability for Jayden, I was afraid I wouldn’t get the help I needed. It was a two-year process, I had to go to so many doctors, it takes a lot out of you. And then also, what a lot people don’t know, is that if you’re a single parent, once you get Social Security for your child, you lose food stamps because you’re over the limit.

But you’re really not, because you need that money to cover basic needs. It’s very hard. Nowadays, gas is $4 a gallon, so do I put food on the table, or do I put $4 in my gas tank so my son can make it to therapy today? Sometimes we have to delay treatments or cancel medical appointments. Right now, I am Jayden’s only caregiver, in addition to supporting my husband’s brother. Without any Medicaid coverage at all, I don’t know what we would do.

I don’t know what the future holds for Jayden. His dad and I have agreed that if they bring back institutions, he will not go into an institution, he will be home with us. He is an only child, and we definitely worry about what would it would mean for Jayden if something were to happen to his dad or I. Who would be there to take care of him?

Jayden taught me that not everybody has a voice, and some people who want to have a voice are scared to have a voice. Since I’ve had him, I’ve realized he changed me more ways than I ever knew. He made me an advocate. I’m so excited to join Little Lobbyists to fight for Jayden and other kids like him.