Today I decided it was warm enough to take my son and walk outside for a while. He cannot really walk, he uses a wheelchair. We started up a road in our town, Monroe, Wash., that takes us to nature trails around recent housing developments.

I like it because of the gradual incline, all the trees and the quiet surroundings. It was lovely with the fallen leaves and the multiple colors iconic of Northwest autumn. We got lost in the beauty until our trail ended and the sidewalk began again. We stopped and stared at the step created by the sidewalk curb.

Unable to find a way around it, we had to turn back. Wheelchairs do not do steps.

I am a parent provider for my adult son who is disabled. Being a parent provider means becoming a master of modifying, fixing, rigging, and hacking to make things work for my son.

For me, it’s simple things like how to put him in an airplane seat, the dentist chair, or finding a table in a restaurant that he can get far enough under so he can reach his food.

Then there is helping the optometrist, the dentist, or the imaging technician figure out how to position, manipulate, or hold him up to the various machines to screen his vision, X-ray his teeth, or get an image.

But long before I became a parent provider, I was the mom of a child with a disability. My child was born 33 years ago, premature and as a result of complications during birth, with cerebral palsy.

His name is Mike. Mike is a twin and he also has an older brother. Mike’s twin brother has also had many issues to overcome as a result of his premature birth but he is no longer considered delayed or at-risk.

As I said, Mike doesn’t walk. But he does talk. Oh boy, does he talk! He has very poor vision and is diagnosed as quadriplegic. Although his arms and hands work fairly well, he cannot balance or bear weight without help. He cannot perform the activities of daily living, which qualifies him to have a caregiver. That caregiver is me, my husband, and his twin brother provide care also.

Eva performs a transfer with Mike to another chair. However, instances such as transfering into a car, it is difficult to do safely. Photo by Paul Josephy Brown.

Having a baby changes your life, having twins change it more drastically, and having a child with a disability changes it in ways I never thought about before. It became apparent quickly that finding and paying for day care was going to be almost impossible. My husband and I had to work different shifts.

Since we didn’t have days off together and didn’t work the same hours, we rarely saw each other except to pass off the babies as one came home and the other left for work. In between the work schedules we had doctor appointments, physical therapy appointments, and the once a year neonatal clinics.

However, this was only the beginning of the issues we would face. The twins’ medical bills were astronomical since they spent the first three months of life in the hospital. Right away the health insurance company refused to cover either child’s medical expenses, stating the premature birth was not a covered expense. We had to quickly learn to navigate Medicaid.

As a family we were isolated a lot from other people and were really on our own to manage the twins’ care. Friends and even family became less likely to visit and invitations to others’ homes for parties or events were rarely extended. Grandmothers didn’t offer to care for the children so we could get away for a few hours like they did for our older son. Neighborhood baby sitters were not available to us either. I was able to find a cooperative preschool for the twins to attend, but I had to attend with them to help Mike.

Parents with children who have disabilities have often been through and sacrificed a lot before public school begins. At age five, the school district felt Mike was too delayed to begin Kindergarten. There was a special program he could attend with an hour bus ride in the morning and two hours home. Mike was not potty trained and by the time he got home he was soaking wet. A Pull-Up diaper can only hold so much. That program didn’t work.

When we went out into public many stores and streets were not accessible to us. I noticed most people stared at Mike in his little wheelchair. When people did talk with us, the questions were always, “What happened to him?” or “What’s wrong with him?” And “Why is he in a wheelchair?”

As parents of a child with a disability we had to develop suitable answers. They are the same ones we use today. These answers came from some very wise 4-year-olds who were in preschool with the twins.

What happened to him?

He was born that way.

What’s wrong with him?

Nothing!

Why is he in a wheelchair?

Because he can’t walk.

We never shied away from going places and we took Mike everywhere we could. We didn’t apologize, ask permission, or beg forgiveness. We just went and expected people to include Mike.

We taught Mike to talk to those who stared at him. We told him to say, “Hi, my name is Mike. What is your name?” Many people have responded positively to that approach. Things have changed a great deal over the years as awareness has improved.

Eva assists MIke as he brushes he teeth. Photo by Paul Joseph Brown.

Now, I watch Mike and others exchange greetings and it seems so normal to me. People say “Hi” to him, shake his hand, ask him how is he doing, laugh with him and listen to him. He has opinions on everything: politics, healthy food choices, strategies to beat the level of the game he plays, the weather, his Facebook page, and his girlfriend.

He likes to ask a lot of questions, especially about how things work and why. He talks to his representatives and senators, letting them know what it’s like being a person living with a disability. He thinks it is important for them to know him and how hard it can be.

Being a parent provider means the “empty nest” will never be completely empty. Either the child will always live at home or the parent will always take care of the child in some way. I often think since I am no longer tied to a job that requires that I must be in an office every morning, I should be able to travel some.

I am blessed that I can do that a little because I have family to help care for Mike for a few days at a time. I need time off to take care of myself or I won’t be able to take care of him. I would like to take him on trips with me so we could explore together but modes of transportation that can accommodate a wheelchair are costly or not always available. I used to be able to pick Mike up and place him into a regular car seat and lift the wheelchair into the back of my van.

Now that he is bigger and I am older it is almost impossible to lift him into a car. I can do it if I have to, but it doesn’t feel safe. One time I spent hours in a rental car lot trying to find a car that the wheelchair would fit into.

The most heartbreaking of all issues for us as parents to endure is when our child is excluded in the regular activities of his peers because it is assumed he can’t do them.

I remember during the holiday season all the school children participated in a program. Mike was in Kindergarten and knew all the words to the songs. But even though he practiced them every day at home, his music teacher wanted to exclude him from the performance. When I asked why, I was told it would be too hard to get him on stage and all the other children would be standing on risers, which he could not do.

The principal sided with me, so Mike was included but the teacher put him off to the far side of the stage and it was hard to see him. Mike did not care. He was so excited to be in the program. He sang along with all the other kids and took a bow at the end. From then on, the music teacher was always unkind to us. It was obvious that including Mike was an inconvenience to her.

There were many times throughout his school life that he was left out because of his disability and I realized when I challenged those situations or decisions, many teachers felt it necessary to retaliate. However, there were also many great educators who worked tirelessly with my son and taught him to read, understand numbers, think critically and speak up for himself. I thank those wonderful educators every day.

As a parent provider, I am the person who can make things work for Mike. When he says he wants to do something I feel it is my responsibility to figure out how to make it happen. This morning, after the 2014 elections, Mike reminded me he would be 35 in a couple of years and old enough to run for president. I don’t think I have the power to make that happen but for me it feels so good to know he dreams big dreams.

Being a parent provider means advocating for your child. When school ended for Mike, so did his social life. He needed activities to fill his day. There are many resources to help find activities, jobs, and volunteer positions for adults with disabilities. As Mike’s advocate I contacted those resources but I had to do most of the initial work to find things for him to do. I went out to various businesses and talked to people, begging them to allow Mike to volunteer.

Mike’s volunteer jobs get him working in the community and they also provide respite time for Eva. Photo by Paul Joseph Brown

We experienced many rejections. Reasons like: he’ll be in the way or it will take too much time to train him. In many cases those were valid reasons. But some were willing to give him a chance especially since he came with a job coach from Work Opportunities.

The next step was transportation. Mike qualifies for DART transportation but unless we live within three-quarters of a mile from a regularly scheduled bus stop, the bus will not pick up. We live 1.2 miles from a regular stop, so we had to look elsewhere for transportation.

We found a program called Transportation Assistance Program (TAP). They connect the rural folks who need special transportation to Community Transit. Our local Senior Center has a bus to transport the Seniors in our community which also accommodates a wheelchair. Both of these methods are very limited in the hours and days they are available. We have to work around their schedules and we have worked that out for now. It only occasionally fails and then I become the transportation for Mike or he has to stay home.

Mike now volunteers at the Monroe Public Library, Sky Valley Food Bank, and Monroe YMCA. He also attends Full Life in Everett, which is a program for seniors and people with disabilities. I use this as my respite and Mike goes seven afternoons a month.

As parent providers, we modify, fix, rig, and hack to make things work and we are always on the look-out. Going out in public, I’ve found it better to go without Mike first so I can check out the “lay of the land” and evaluate if it will work for us to visit with Mike. Our choices are often determined by accessibility and I’m most comfortable knowing that in advance so I don’t end up having to turn around and go back.

I look at the streets, sidewalks, and entrances to stores and investigate the bathroom situations. Anytime Mike is with me and I find a bathroom that will work I let Mike know this is a good place to use the bathroom before we continue our journey. We remember those good places for next time.

Being a parent provider means you can’t ever give up.