Kelley Thorson lives in Pulaski County with her husband, Donald, and their three sons. I have known Kelley for years, as my Dad was her son Kyle’s teacher.
Her youngest son Kyle has a very rare, severe disability called Phelan-McDermid Syndrome. According to the Phelan-McDermid Syndrome Foundation, there are at least 1,400 cases worldwide.
Kyle is now a fully-grown, 24-year-old man and is also non-verbal, so Kelley spoke with me about the anxiety she is experiencing now that Kyle has reached adulthood.
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Kelley Thorson: I don't consider myself any different than any other family. This is my life.
I guess I look at it like I have blinders on. I just feel everybody lives the same kinda life I do, and when somebody tells me that they're able to do this and that, you know, I think, "Oh my gosh."
Or you get invited - your family gets invited somewhere. You're on complete edge because you can't just go. You have a lot of anxiety, and Kyle has anxiety so...
Kyle causes us to have a lot of anxiety.
Rebecca Smith: From your guys' perspective, what are some of the reasons that you feel anxious? What are some of your fears even for Kyle's future or Kyle now?
Kelley: We - I always have anxiety with him and so does Donald, my husband, or even Sarah or Gina - his caregivers.
When we have Kyle with us, we're afraid somebody will get too close or there'll be a dog. The crying child - that gets Kyle going. So we have to say, "Oh, let's sing a song," and we'll be in the store and we'll start singing.
People must think we're crazy because I talk to Kyle the entire time I'm with him.
I'm always saying, "Now Kyle, don't let me forget - we have to get milk,” and I tell his caregivers, "When you're shopping with Kyle, you have to continually to talk because that eases his anxiety level a lot.
Rebecca: What are the additional struggles for you guys - for Kyle now that he is an adult?
Kelley: It was this way when he turned 18, you know, you lose - now you're an adult and then you have to see an adult neurologist.
All they want to do is say, "Well, you know, let's see if he's still haven't seizures. Well, nope he's not having seizures anymore because the EEG came out clean. So why don't you check back with us in a couple years?"
Really. That's what you got for me?
Are you gonna manage his aggressive behaviors because pediatric neurology did?
"No. You can see a psychiatrist for that."
But there isn't one that will see him. The only way I'm gonna get him a psychiatrist is to put him in a psychiatric hospital, and he'll see a psychiatrist there. All they'll do is managed meds, get him - get him a few nights stay and then they'll release him.
Um. Even pediatric dentistry I don't know how long they're gonna keep him in Springfield for the pediatric dentist, you know, do they want to see him when he's 55 years old? I don't think so.
So at some point, they're gonna say, "He needs to move on."
Rebecca: What will you do?
Kelley: I don't know. Pull out all his teeth, and he won't have a problem? [laughs]
I don't know. I don't know.
