NAME: Wyatt Wayne Allen
CURRENT AGE: 14
HOME TOWN & STATE: Altamont, TN
DIAGNOSIS DATE: January 2020
PARENTS: Jeff & Taffi Allen
SIBLINGS: Melina, Alora, and Quade
What it felt like when we learned our child has SLC6A1?
I got positive results for Wyatt and Melina at the same time. They were tested through a genetic study our family was participating in after receiving the same results in their younger siblings during the previous year. At that point it was a combination of shell shock and ‘of course!’ combined with disbelief that ALL four of our kids had SLC6A1.
How did you know something was wrong? Wyatt was my first child; just enough to make me think ‘I have kids now, so now I’m experienced…’
‘Of course he’s smart; I work with him.’
‘Yes, he’s a little emotional, but he spends most of his time with me and I’m very empathetic so that’s normal, right?’
He was a child who said his first words at 4 months, spoke in sentences by a year, knew his alphabet by sight at 18 months, and ALL the Latin dinosaur names by age 4. I thought I was ‘Supermom’ (reality check to come). His super focused interests caused major meltdowns. Potty training was a nightmare for YEARS. He didn’t understand sarcasm or concepts with dual meanings. I began monologuing before he was 5 to model thought processes because he couldn’t understand how people arrived at basic conclusions. Everything had to be concrete, and unexpected changes meant life as we knew it was over. I cried the day he told me I made a ‘mean’ pie. It was his first dual reference. He was 10 years old. Wyatt experienced his first drop seizure this year. Before that he has exhibited only autism symptoms. We are waiting to see if life as we know it has changed yet again…
The hardest part of being an SLC6A1 family? The guilt. At this point, my husband works frequently to support our single income family of 6 because I am immensely needed at home. Wyatt is my biggest help with 3 younger siblings that are more severely affected than he is. It’s impossible to help someone in the bathroom and make sure someone else isn’t drawing on the walls. Wyatt really is an amazing kid. But I want him to just be able to be a kid for as long as possible. Adulthood springs up quickly from our teen years and we can never get them back. On the flip side, it has helped him gain maturity, perspective, and awareness that he didn’t have with autism, so it’s hard to regret that.
Homeschooling to accommodate many different learning styles, abilities, therapy schedules, medical appointments, and behaviors is an ever changing, full time job. It’s HARD. No one should have to triage their own children. But that is a reality in our household. You feel guilty when you have to pass on a therapy one child needs because another needs to see a cardiologist. Or we choose for my husband to miss a day of work so that we can do both. There are no easy decisions.
What are your dreams for Wyatt? Wyatt never wanted to be a cowboy or an astronaut. When he was 4, he declared he wanted to be a paleontologist, then a marine biologist. I’ll never forget the day I was driving him to kindergarten and I asked him what he wanted to be. It was the longest pause I had ever experienced. He finally replied: “I want to be a good man.” I was struck. Nine years later and we have no worry that his dream will come true.
I worry that others won’t see it.
I worry that they will only see autism and miss out on the man that he is. My dream is for SLC6A1 to not be an issue other parents and their children ever have to confront. My dream is for Wyatt to be seen.
Why would you like people to donate to SLC6A1 Connect? ‘It is what it is’ is my husband’s favorite saying, and I always finish with ‘but it will be what you make of it’. We can make a better world for our children than we had for ourselves. We all dream of it but we forget that we can make it a reality. Let’s make this dream come true.