Burst of Hope Part 2: Jeremy's Story - Home Care InSight Magazine

This story is part two of “Bursts of Hope.” Read the introduction here»

Jeremy Klennert, 22, can often be found with his feet kicked up on his bed listening to his favorite tunes. Sherri and Mike Klennert, his parents and caregivers, say he is a joy to be around as he is funny and likes to tease and play when he is feeling good.

Living by a creek in Gold Bar, Wash., Jeremy is often outside playing or horseback riding with his grandmother. He’s won first- and second-place ribbons in the Pat Flynn Memorial Horse Shows. At the Monroe YMCA Miracle League, he goes bowling and plays baseball. And one day a week, he works cleaning tables at the Monroe Senior Center.

Jeremy was born 13 weeks premature and was diagnosed with autism around age 3. Because he is nonverbal, Jeremy and Sherri have created their own method of communication using pictures. And even though he doesn’t talk, Jeremy is very social and likes to be included in the conversation.

Sherri talks about the problems she is yet to solve, their technique of communicating, and how the absence of language impacts Jeremy’s care as she works hard to ensure he has positive experiences.

Interview with Sherri Klennert, Jeremy’s mother

How do you understand what Jeremy wants or needs?

He has a lot more receptive language than expressive. Just now he came to get me and showed me what he needed. That is usually how he communicates with me. I’ll show him breakfast food like a waffle. If he is hungry and wants it, he will push it toward the toaster. If he doesn’t want it, he puts it back into the freezer. I can show him two different items and he can choose which one he wants.

I put pictures on the clipboard of what we are going to do or where we are going to go, but if he doesn’t want to do something that is on the board, he will take that picture off. So he can definitely let me know what he doesn’t want to do. We also have an iPod that has picture schedules on it. He can communicate a little bit with it but he has to be encouraged to use it.

Understanding Jeremy has taken 22 years and it is not perfected yet, but it’s getting better. It also changes all the time. It’s kind of like a roller coaster and I have to be really flexible.

What happens when you surprise him?

We often run into a problem when Jeremy doesn’t want to go somewhere or do something that I really need to do. Since he can’t really tell me how he feels about it he will often have a meltdown.

Then I won’t be able to do what I need to do. When he has a meltdown, they usually last for a short time but when it is happening it feels like forever. I can’t stop him when he gets in those moods. I can’t even talk to him. It just makes it worse. Those episodes are hard to handle especially if we are out somewhere. I really try to stop things on a positive note, before we get to that point.

Do you have tools or strategies to handle the meltdowns?

I don’t know what to do other than just get into the car and go home. When we are at home, he goes to his room where he has a chair to sit in.

But if he gets to the point of screaming and kicking things, I take him out and I put him in the corner just to distract him and he stares at the wall until he calms down. But I have to watch that because he has banged his head against the wall before.

Has he ever hurt someone during a meltdown?

No, he has never, ever hurt anyone.

He has scared people during his meltdowns. One time a lady was holding a small baby and Jeremy was having a meltdown in the parking lot and his screaming scared the baby. I felt really bad but there was nothing I could do about it.

But if he unintentionally hurts one of us by grabbing too hard or scratches us because his nails are too long we say “owie.” He knows “owie” and he will stop immediately.

Can he use his communication device to show you how he feels?

His communication device has pictures of feelings on it but he has to understand what those pictures mean. If there is a sad face I don’t know if he really knows what that picture means. He wouldn’t be able to tell me what made him sad. A lot of it is just guesswork.

What’s the biggest issue you can’t solve?

Doctors are always a big issue and I don’t know how to solve that one. When the doctor sees Jeremy it’s usually because he is hurting and he is not on his best behavior. So the picture of Jeremy the doctor gets in a 15-minute visit is not how Jeremy is all the time.

This winter we were a family in crisis and we couldn’t find help anywhere. Jeremy was having extremely bad headaches and that was causing him to have these rages that were so bad we have holes in our walls. Jeremy’s doctor just passed it off as Jeremy’s autistic behavior and didn’t even want to see him. After that we decided to change doctors.

For the autism stuff, we have to go to the University of Washington Children’s Autism Center which is 90 miles away. That is a good place for people with autism but it’s unrealistic to go there when Jeremy is sick and needs to be seen right away.

How do you take care of yourself?

In order for my husband and I to get breaks we have to tag team. My husband gets to go hunting for a few days and when he comes back I get to go to Vegas to see my girlfriend. But we usually don’t get to go places like that together unless we take Jeremy.

Last week my husband and I had a big date when Jeremy was in day care. We had time to go out to lunch together.

What do you think your most urgent needs are?

Respite! My mom is our respite provider and she is getting older and doesn’t have the energy to deal with his meltdowns.

Activities like going to a movie or hiking help get rid of some of his energy. Boy does he have energy, lots of it! Our biggest challenge is to find someone in this area (Gold Bar) who can help. Sometimes we just need a break.

What else do you want to share?

We parents need resources, strategies, and some training to help our children. We need to understand this better and we need training to be able to do that. I think parent training is an awesome thing because we love our children very much and we are responsible for these guys for life.