Miles Fredericks (Audio Described)

(Photos display a baby lying on a blanket.)

Rita Fredericks: Miles was born a typical child and at four weeks old he started having seizures. In the process of learning about why Miles was having seizures at such a young age, which is not typical, we discovered that Miles has a really rare genetic mutation.

(A title appears against a shimmering white background: Living DeafBlind in Iowa.)

(A man and woman sit in their living room.)

Rita: My name is Rita Fredericks and with me is my husband.

Nate Fredericks: I am Nate Fredericks and we are parents of a child who is deafblind.

(Miles sits smiling beneath a number 5 birthday balloon.)

Rita: Miles has eyes and ears that function but his brain does not want to process the vision and the hearing that comes through. Miles is otherwise physically disabled as well as cognitively or intellectually disabled.

(Rita swings with Miles in her arms.)

[Miles giggling]

Rita: He is a very joyful, happy child. He really loves to spend time with people and to be touched and to feel others around him. Miles is non-verbal. That is not something that will change for Miles. He also doesn't have good movement or use of his hands to try to learn Sign Language or to try to use Braille as an option. His communication isn't super formal but it's formal for our family and it's formal for Miles and that comes in the forms of different squeals, different tones, different loudness, different ways that he holds his feet and his legs, different ways that he might move his arms.

There's a lot of those small clues that you have to pay quite a lot of attention to and of course it took a lot of time for us to understand the development of that communication for Miles. We call them gestures. We have a gesture dictionary and it is videos or descriptions of these gestures so that when there's someone new they might be able to understand more quickly.

(Miles sits in a chair with drums at his feet.)

For Miles, when he was really young and prior to us knowing and understanding all that he is, he would get really irritated in the bath. So, if you can imagine, Miles has no access to that incidental environmental information. So he does not hear the bath water running or the shower coming down or that he's in the bathroom, for instance, versus in his bedroom or in the living room. So now when we go to give him a bath, you know, we present some water, put his foot in the bathtub. If we can use some of those contextual environmental clues we can give him more information and we can create meaning around this routine.

(At home, Miles sits in a swing.)

Nate: We have a couple of different swings that we have put in the house to give him some different areas on the floor with some soft tiles where he can explore. He’ll just kind of maneuver and it’s just really exciting to kind of see where he ends up and know what that might tell us about him and his day and how he is feeling that day. He is kind of a little explorer.

(Miles' brother, an older boy, unwraps a gift.)

Rita: We also have a son, Liam, who is 10 currently. Liam really enjoys being a big brother. He has really learned quite a lot about taking care of someone.

(Liam sits in a chair as he's interviewed.)

Liam: I show my brother that I love him by... I cuddle with him, I pester him a lot.

Liam: I worry about him from day-to-day. He pukes a lot, so I help with the cleanup part. I brush his teeth a lot when my parents are doing other things.

(Rita and Liam push Miles on a playground roundabout.)

Rita: Let's see if we can get you going fast.

Liam is pushing him right now on an in-ground merry-go-round. So it's something really big that Miles can feel. As we're spinning and he starts moving his feet and he starts raising his hands, that is how we know he's enjoying it. His eyes came open.

(Miles rides on a swing.)

Even though we have great information about Miles and we know what he loves to do, his epilepsy and his seizures take away from us some of the communication that we typically have with Miles. That has been very hard.

(Miles moves his hand around.)

Today he's not showing a lot of excitement or happiness. But we can still tell he's alert, his eyes are opening.

(Liam holds Miles as they ride down a slide.)

We like that he is friendly and accommodating and that he is flexible with us and he is very chill and goes with the flow.

(In a park, Miles rides in a wheelchair.)

We go hiking as far as we can with Miles in the wheelchair. It doesn't scare us. Liam really loves to swim. In fact, Liam and Miles both love to swim.

(Miles swims with a tube.)

Liam is on swim team and has been on swim team for some time and all of the pools that he would go swimming at were not handicap accessible. And so those were activities that we just, we couldn't take Miles to. And so if both of us wanted to be at a swim meet then we had to really think through who was going to take care of Miles in our absence and those folks are very limited in number. People get very nervous to take care of him and to be responsible for him. There's a lot to think through.

(In a hospital, Miles wears mesh bandages.)

Rita: You know, I think in all of the challenges that have come with having Miles, there's a lot of wonderful life lessons and joys, things that we have learned from having a child like Miles.

(Miles rolls over a piano mat.)

We're certainly closer as a family. I think that we have had a lot more opportunities to be home together and to experience some new environments like the therapy clinics and in that we have met a lot of new families, new friends.

(Miles lies on a pillow, stretching his arms and legs.)

As far as Miles' future goes, our goal is to make sure that he attends school and that he gets out of school what he is able to and that we teach him and try to create some more meaning in different activities so that he has some other things that he understand with his body or his mind, his cognition, and some additional people in his life.

(Miles sits in his drum chair.)

He does have a shortened life expectancy. There is a lot of grief in parenting and understanding the work that has to be done around knowing that you're likely going to outlive your child and the likelihood is very high and that there is a really high likelihood that your child will not always live in your home but will always need the full care. When the time comes and when we're ready to make decisions or choices that are different than Miles being in the home as he is right now with all of us, we don't feel afraid anymore.

Nate: Just that type of knowledge just really enables you to take it one day at a time, one week at a time, one month at a time and just knowing that tomorrow is going to be another day and we've just got to work to make sure it's going to be as best as it can.

(A photo shows Liam and Miles smiling in a field of sunflowers.)

(A title appears against a shimmering white background: Living DeafBlind in Iowa.)