Amanda Sifford shares her experience working as a school psychologist while living with amyotrophic lateral sclerosis (ALS). She reflects on workplace support, self-advocacy, and the importance of finding joy and balance through the challenges of fatigue and disease progression.
Transcript
I’m Amanda Sifford. I’m a school psychologist. I’m going on two and a half years. It’ll be three years in December.
I’m just grateful that I’m alive, let alone, I get to work. You know, a lot of people feel like they have to work. I get to work. I’m excited about that. I love my job. I crack jokes at work — I even enjoy the bad things now. You know, because I get to do them.
I just work with an amazing group of people. So a lot of the accommodations and things that I’ve had have just been done for me, without me even asking. This past year, my voice has really kind of taken a hit. They can hear my voice start to go — and then they just jump in.
When I first got diagnosed, I was doing — I was maintaining. But then about February hit and all of a sudden my breathing dropped. My fourth vital capacity went from somewhere in the 80s down to the low 30s, and I would walk in the parking lot to the office, and I would be out of breath — to the point where I couldn’t speak.
So then somebody went in to the principal and said something, and a week later I got called in. She goes, “Oh, we got through our insurance and all that. You’re going to park behind the building right near your door — where the school buses park.” So those are the kind of things that they just reach out and do.
I’m walking in, people come up — people I can’t even remember their name sometimes because I’m at a couple different schools — and they’ll grab my bags or my test kits. And I’ve been very lucky, and I know that.
I work with kids anywhere from the kids that are gifted — I do the testing for them — to any child with a disability. I do the testing, I write the reports, and I get to advocate for the students who have needs. And so each, you know, little group has their own unique characteristics.
Like a lot of students that are gifted tend to be kind of witty and they catch a lot of adult sarcasm. So you have like a different conversation than you do with the child that has Down syndrome, obviously. But it’s the kids. It’s the kids, and trying to be able to do something that you know will help them for the rest of their life.
My room is all decorated in flamingos. I live in Florida, and so we’ve got a huge room — and I share it with the interventionists — and it’s just decorated — very beach and very happy.
So none of the kids know my name. But I did find out they call me the Flamingo Lady. So that’s kind of funny because now they’re knocking on the door, like they’ll see, somebody will come in and get tested, and they’ll have flamingo pencils and flamingo lollipops or something like that, and then the other kids will come and, “Can I have?” you know. So it’s just, it’s just cute. The kids are great.
I can’t even describe how tired — tired doesn’t even begin to touch how I feel when I get home from work. So if I need to come home and sometimes I’ll just sit on the couch, and I’ll wake up two hours later, I don’t even realize I’m drifting off when I’m drifting off. It’s, I’m so tired.
So I think getting rest, physically and mentally. Again, in my career, I’m very lucky, because we’ve got breaks kind of built into the school year. Like we get a week off at Thanksgiving, we get a couple weeks off at Christmas, and then I have quite a bit of time off in the summer. By the time those breaks hit, I’m toast.
Advocate for yourself. Again those are things that we preach but we don’t practice. I think, especially, if you’re in a giving field like I’m in, if you can pace yourself, like I know for me, my voice is usually better in the morning. Doesn’t sound that way today — but usually it’s better in the morning.
So if I can do a little bit in the morning — as far as talking goes — and then take a break, write reports. Not, take a break, but take a break from talking, and then come back later in the afternoon. I usually have ice water or something cold, because that seems to help my throat.
And I think the most important thing is keeping a positive attitude. When you can ask for help, ask for what you need. Be willing to admit what you need. My job is going to be waiting for me when I get back. I don’t have that kind of job where somebody’s life is hanging in the balance if I miss a day or miss a meeting.
So if you need to take time off, and I need to practice what I preach when I say that, take the time off and recover, because that’s what’s going to help you maintain your longevity at work.
