Kyler and Karen Find Solutions with FMS
For almost six years, Karen has provided support for her grandson, Kyler, a nonverbal child diagnosed with autism who requires constant supervision. Through Accra’s Financial Management Services program (FMS), Kyler has gained more independence and life skills to help him succeed as he approaches Kindergarten this fall. The FMS program enables individuals with long-term care needs or disabilities to easily hire and employ caregivers under the consumer-directed community supports (CDCS) program or the Consumer Support Grant (CSG) program. Recently, we connected with Karen to learn more about her experience as a caregiver for Kyler.
What is your relationship with Accra?
I am a caregiver for my grandson, Kyler. In 2019, he was diagnosed at the Mayo Clinic with autism spectrum disorder. Kyler is five and a half years old now; he’ll be going into Kindergarten this fall. Accra has made a big difference in the lives of my family by helping us identify the resources that we would need to make life easier for Kyler.
How long have you been working with Accra?
This is the second year that we’ve been working with Accra. It’s been great seeing all of these opportunities that have been opened up to Kyler. The safety piece of it is huge for us.
What was life like before Accra?
Kyler was a handful; he didn’t sleep properly and wasn’t eating well. Sometimes he’d have an upset stomach, that kind of a thing. But he is very good about trying more foods now and eating better—and brushing his teeth. He had some dental issues early on in his life. We were not able to get him to go to a regular dentist until just this past year. We went through five different dentists and previously had to sedate him during his dental work. So, this was huge for him this year.
Kyler is doing incredibly well now. He’s starting to talk more. He’s learned the word ‘No.’ He’s learned some sign language. He wrote me a note that said, “I heart you,” and I cried. That was huge because I didn’t know if he would ever get to that point.
What does a typical day look like for you and Kyler?
We try really hard to have a schedule to keep him on track. Sometimes if we don’t, it affects his behavior. We have visuals that lead Kyler through the morning routine; they are images attached to Velcro that show him each step he needs to accomplish to get ready for the day. He goes to daycare during the week and has breakfast there. From there, he goes to preschool, back to the daycare, and then we pick him up. When he gets home, we try to have supper ready for him because he is a growing, hungry little boy. And then he usually has a little bit of playtime, bath time and teeth brushing, followed by bedtime stories.
What types of support are you providing Kyler?
Some of our biggest concerns surround the fact that Kyler is an eloper, and we need to ensure Kyler is safe from potential hazards that he isn’t aware of—we live near a busy road, railroad tracks, and an airport. We were often concerned because he could quickly get out of our yard. Because of this, Accra worked with us to install a six-foot privacy fence around our backyard to ensure Kyler’s safety. So now he’s able to play in the backyard safely—he loves being outside. He has a trampoline, a swing set, sandbox, and a little ride-around-the-yard toy in the backyard. It’s really opened up the world for him. Before, it was hard to let him go outside. It’s been wonderful.
What kind of relationship do you have with your Accra Qualified Professional (QP)?
The QP I work with is very helpful. If there’s something I don’t know or understand, she will help me. She’s been very good about reaching out and saying, ‘Hey, wait a minute, you didn’t sign this,’ or something along those lines. And she always updates me and lets us know if we’re getting close to funds running low and that we may want to reevaluate some of those things.
How else has Accra assisted you and Kyler?
Accra has helped us to get a Ring Home Security System installed for security. This is helpful so we know if Kyler tries to leave the house unattended. Accra made it possible for us to put this system on all of our doors and windows for Kyler’s safety so he can’t run off and get lost or get hurt. Also, Kyler is nonverbal and therefore uses a talking device, which we were able to get thanks to Accra. Now he’s starting to come around and be a little bit more vocal.
Another aspect is that he loves books. Accra approved a portion of his funding to be able to get some books for him to read. We also recently got approved for a “crash pad” for Kyler. If you’re familiar with autism, a crash pad is a special area for an individual to have sensory time if they feel overloaded or overstimulated. Accra approved that as part of his funding, as well.
How would you describe your partnership with Accra to someone who isn’t familiar?
I can’t even begin to explain the difference it has made in our lives. We were concerned every day that he was going to get out the door. At one point, before he was diagnosed, he ran across the field and onto the busy road, and a truck stopped right in front of him. It was terrifying. Things could have looked a lot different for our family. Accra really stepped in and helped us.
Full Interview Transcript
Introduction
Karen: And he was just diagnosed in 2019 over at Mayo Clinic with autism. And he’s just five and a half now. He’s in preschool but he’s currently going into kindergarten.
Kyler’s Care Plan
And one of the big things that we were working on with our worker originally, kind of went over a whole plan; including, you know, nutrition, education, the medical health care piece to it.
But some of our big concerns and things that we needed to work on the most where he is an eloper.
Lexi: Okay.
Dangers Of Autism Eloping
Karen: And he wouldn’t be really totally aware of the safety issues on running out into the road. The area that we live, there’s a very busy road, there’s an airport, there’s a straight river, there’s an airport.
Lexi: Right, yeah.
Karen: There’s a train nearby and the freeway is not very far from that. So it’s a very busy area on the edge of town. And that was a big concern because he could quickly get out of our yard.
Understanding Options
Karen: And so our worker talked with us about all of the pieces for his care and what that would mean and what would work for us. And, of course, then she gave us the options of, you know, would we want to work with Accra? Because they really would help us with the budgeting end of things; what he would qualify for, and help to get all those pieces in line, because we were not aware on how to do all that.
Privacy Fence Prevents Eloping
Karen: And so Accra worked with me, I got a couple of quotes–estimates–on a fencing, a local fencing company here in our town. And they were able to help us to put together the pieces to put up a six foot privacy fence. We tore everything out of there that was in there that was pretty dilapidated, that wasn’t holding up; kind of an old metal fence. And we tore that part out and they put in a nice privacy fence. So now he’s able to safely go play out in the backyard and loves being outside. And out there he’s got a trampoline and a swing set and a sandbox, little ride-around-the-yard toy. And so it’s really opened up a world for him. Before it was hard to let him go outside.
Lexi: Right.
Security Camera Alert System
Karen: The other piece–it’s been wonderful. And the other part of it that Accra has helped with now is they helped us to get a Ring system put in for security. So he wouldn’t just try to get out of doors. He would climb out of windows and that kind of thing. And so we were able to put together a Ring system on all of our doors and windows, so that we would alert if he was trying to get out. And that’s just for his own safety. So he didn’t run off and get lost or get hurt.
Risks To Non-Verbal Children Diagnosed With Autism
Karen: He’s nonverbal. And so he does use a talking device. We were able to get that and get those pieces in place for him. Now he is starting to come around and be able to speak a little bit more and be a little bit more vocal. So Accra has really helped us and made a really big difference in all of our lives here. And the ability to be able to help him out–doing something I would normally do anyway–but to be able to come up with some of the resources that we would need to help to make that a little bit easier to be able to help him.
So the other thing is, with part of his learning and his speech–he loves books. So they approved a portion of his funding to be able to get some books for him to read. And he’s really enjoying that part of it, too. So, yeah.
Never To Be Left Alone
Lexi: That’s awesome. That’s fantastic to hear. So you would say that your primary role as his caregiver is safety. And just daily needs with getting ready and learning and making sure that he’s at the right place the right time. But primarily safety, you’d say?
Karen: Exactly. It’s actually written into his care plan that he is never to be left alone.
Lexi: Okay.
Karen: That is actually in his care plan. And part of the struggle was, well, when he goes to bed, what if he gets up? What if he’s wandering around? And I finally just took him in my room with me. And at least for time, that’s what’s working for us to make sure. I’m a light sleeper, so I will wake up if he if he gets up. But, you know, eventually we’ll transition him into his own room and that type of thing.
Working With Accra
Lexi: Okay. And how long have you been working with Accra?
Karen: Oh boy, this is the second year that we’ve been working with Accra. And I really look forward to being able to see that, you know, all these opportunities that have been open up to him. I mean, just being able to have that safety piece of it is huge for us.
But then also some of the sensory things; they recently approved for a crash pad. If you’re familiar with autism, a crash pad is a little place where they can have a little bit of that sensory time if they’re feeling a little overloaded, a little overstimulated. And they approved that as part of his funding, as well. So not just the safety piece, but those things as well.
Lexi: Okay. And why did you initially choose Accra to partner with?
Well, we had our care–the gal that kind of puts together our care plan–and she suggested…she had two different options and kind of gave us the background and options of both of them. And Accra just seemed like it would be a better fit to what we were looking for, for the help that we needed. You know, their their offices are here in Minnesota and just seemed very easy to work with. And so that’s what we’ve stayed with and we trust them.
Lexi: Great. And you work with the financial management services (FMS) program, correct?
Karen: Yes, we do.
Typical Day For Caring For A Child Diagnosed With Autism
Lexi: Okay, perfect. Can you kind of tell me what a typical day looks like for you and Kyler?
Karen: We would try really hard to have a good schedule, try to keep on track. Sometimes, if we don’t. Then that does affect his behavior and he’ll act out a little bit more. Otherwise, he is a pretty easygoing little guy.
So our typical morning, I usually get up and I get myself ready. And then I go in and I wake him up. You know, I get up– I just switched jobs so it looks a little bit different. My start times might be a little bit different. But I get him up. And I usually get him dressed when he’s half asleep. He’s gotten used to that routine. Get him his vitamin, you do our teeth brushing; we actually have visuals. We have Velcro visuals that show him these are the steps of our day. First, we put on our underpants. Then we put on our pants. Then we put on our shirt, socks, shoes. We get our backpack and our coat and then a picture of our vehicle. And then it’s time to go.
He goes to daycare during the week and he has breakfast there. And then from there, he goes to preschool and then back to the daycare and we pick him up from there.
When he gets home, we try to have supper ready for him right when he gets home because he is a growing hungry little boy, in the 98th percentile, according to his recent doctor visit. And he is really accomplishing a lot of things that we didn’t know he would ever be able to do. I can touch on a few of those things that how much the everything has helped him.
And then it’s usually a little bit of play time. Bath time. We’ll try to do stories. We don’t watch a lot of television. I don’t have a TV subscriber, we just have movies. And so we can monitor what’s actually coming in a little bit better. If he has–he doesn’t have a lot of homework–but during distance learning, we did a lot of online things that he worked on during that time. But then it’s really bath time. He usually will go to bed for me about 7:30-8:00 o’clock.
Troubles With Dentists
Karen: And brushing his teeth again. We’re really big on that. He had some dental stuff early on in his life and just recently came back from the dentist with no cavities, no work needed.
We were not able to get him to go to a regular dentist until just this past year. We went through five different dentists before we had to sedate him previous. So this was huge for him this year.
Troubles With Haircuts
Karen: The other thing is, we’ve had to go to a special person for haircuts. And now he allows us–he’ll sit on my lap and he’ll allow his dad to shave his hair. These things are huge.
Lexi: Yeah.
Cleaning Ears & Clipping Toenails
Karen: And as a caregiver, simple things like cleaning his ears and clipping his toenails. He finally lets me do those things. He trusts me to do those. He’ll cringe. But he doesn’t scream or fight or anything like that. He trusts us, so.
Lexi: Yeah. That’s great. That’s good to hear.
Karen: Yeah.
Life Before Accra
Lexi: Can you talk a little bit about what life was like before you teamed up with Accra?
Karen: Oh boy, he came out of a situation with–his dad now has (his dad, my son) has full custody; but he came out of kind of a bad domestic background. His mother was removed from the home and lost custody completely, no visits with her. But that was a very up and down–he hadn’t been diagnosed. He was just a handful. Didn’t sleep properly, wasn’t eating very well, sometimes he can have stomach upset, that kind of a thing. But he’s very good about trying more foods now and eating better.
So it was chaos many times at night with him; you know, crying and not wanting to go to sleep. And part of it, recognizing that where he slept was kind of wide open with his other siblings. And if they would be up and playing games, watching movies, whatever; too much stimulation, lights off and on, too much noise. So we’ve really, really limited that. Like I said, he stays in with me. We keep all the lights down. I keep it very quiet and it’s closed off and he can go to sleep. Doesn’t even need a nightlight anymore. I have a blue light. That’s like an ocean light for the ceiling. But we turned that off when he goes to bed.
Lexi: It sounds like he’s doing fantastic. So that–
Learning To Communicate
Karen: He really is. He starting to talk more. He’s learned the word “No” He’s learned some sign. One of the things that he finally was able to do: He wrote me a note that said, “I heart you.” One of the things that you know he can do now: I love you.
Lexi: Oh…
Karen: Yeah, I cried. That was huge–
Lexi: Yeah.
Karen: –because I didn’t know he would get to that point. But he couldn’t recognize his name. He couldn’t write his name.
Lexi: Okay.
ID Tags For Safety
Karen: I tried several things. I put dog tags on his. I shouldn’t say dog tags; like ID tags–like military dog tags, that kind of dog tag–on his backpack and on his coats, things like that. Because if he were to get lost, I don’t know that he’d be able to tell him who he was.
Temporary Tattoos
Karen: And I also found online where they actually have tattoos. That’s a temporary tattoo. If you’re going to an event, you can put their name and your phone number for contact if you should get lost.
Lexi: Yeah, that’s smart.
Monitoring Systems
Karen: I know law enforcement does have options for monitoring some of the kids, too. That might be something in the future, if he does not overcome the eloping.
Lexi: Right.
Karen: But so far, we have not gone to that measure.
Difference Accra Has Made
Lexi: Great. And then can you describe…how would you describe Accra to somebody who wasn’t sure what they were or what care programs they provide?
Karen: Oh, gosh, I can’t even begin to explain how, just the difference it made in our lives. You know, we were every day concerned that he was going to get out the door. I know at one point he ran across the field and he ran out onto the busy road–this was before he was diagnosed–ran out onto the busy road and a truck stopped right in front of him. I mean, it was terrifying.
Lexi: Right.
Karen: Just terrifying. And things could have looked a lot different for our family. And so Accra really stepped in and helped us. It was a big ticket item to come up with a fence and the labor and that kind of thing for that. That’s a big expense. But it’s something that’s made a world of difference for us and for him.
Karen: You know, I don’t know that the day won’t come when he’ll figure out how to get over that fence. But for now he’s able to be a kid and be outside and safely be in the backyard and not have those concerns, not be tempted to just run off because it’s wide open.
Lexi: That’s awesome. Well, I’m glad to hear that Accra has made such a profound impact on your lives.
Karen: They really have. And like I said, a big part of it is: We didn’t have the experience. We didn’t know the financial piece of this. What do we do? What qualifies? What doesn’t qualify? Those things may change for him with whatever he needs as he gets older. And so it’s just to try to do the best that we can do to make sure that he is safe and taken care of.
Lexi: Yeah, that’s all that matters.
Karen: Right.
Working With Accra As A Caregiver
Lexi: Okay, great. Well, is there anything else that I’m missing or that you’d like to touch on?
Karen: I think, you know, one of the gals that I’ve worked with was that Kathy, I work with her quite a bit, you know, I have a good contact with her. And if there’s something and we’re filling out a timesheet and I don’t know or understand something that I’m doing– maybe I’ve put a date in there wrong or something because just learning, not as familiar with the paper timesheets they use, that kind of thing, at least for now.
And she’s been very good about reaching out and saying, Hey, wait a minute, you know, you didn’t sign this or something along those lines. Been very good about catching those things for me quickly. And also saying, you know, this is where the budgets at; they’re always updating me and letting us know. You know, if we’re getting close to the end of the year and the funds are starting to run low; you know, we may want to reevaluate some of those things.