This winter, my teenage stepson changed the access code on our garage door keypad. As a result, his then 18-year-old stepbrother, who has Duchenne muscular dystrophy (DMD), was unable to get into the house when the bus dropped him off - leaving him stranded outdoors in 35-degree weather.
It wasn’t a malicious act, just the behavior of a typical teenager who didn’t think through the consequences of his actions. But as the working mom of a kid with DMD, I was pretty upset.
This simple little glitch in our system made me realize that, although I may think I’ve thought of everything, I never have and never will. Then a couple of DMD moms told me that, because I work full time, some of their friends or relatives expected they should, too.
I was appalled. Apparently I’ve made this look too easy. So let me set the record straight.
For many years I was the sole provider for my son, John, and myself. Not working simply wasn’t an option.
Now I’m married and we have two incomes, but I’m not willing to give up financial independence. Situations can change, and I need to be able to provide for my son and myself. Durable medical equipment, personal care services, special clothing and adaptive devices are expensive.
Many people assume we get assistance from the government. Not really. The $48 a month that Oklahoma has provided John for personal care since he turned 18 doesn’t go far when a one-hour home care visit costs $30!
Arranging the simplest details for my son’s needs is extremely time-consuming. When I returned to full-time work nine years ago, I had to interview a dozen after-school care programs before finding one that would accept a child with a handicap.
Later, I had to meet with the special services director at my son’s junior high school so John could get on and off the bus without a parent present. It took an IEP meeting to convince the hard-nosed bus driver to wait 4 minutes for John to get out to the bus, 2 minutes longer than school guidelines allow. It can take John 4 minutes just to pick up his books or push the remote keypad numbers to close the garage door.
Yes, I could have asked to change my work hours so I could be there to do these things for him. But John’s goal is to be as independent as possible and he’s pretty determined about it. Instead of applauding him, the bus driver chose to complain. It’s hard not to wish that people who think that way could spend a week in a power chair!
As a working mom of a child with a disability, I’m constantly performing mental aerobics to make sure all the bases are covered. Does John have food and drinks within reach? If not, he may not have any nourishment until 5:30 p.m. when I get home.
Is the speaker phone accessible, and a backup phone in case he drops that one? Can he reach the emergency button on the security system? Can he access all the exits to the house in case of an emergency? Can he reach his urinal? Are his long straws within reach? Is his wheelchair charged? I’m always available by phone and make several daily check-in calls.
It takes a village
Like other parents of boys with DMD, every morning I dress my son, lift him into his wheelchair, apply deodorant, brush his hair and wash his face. Every night I bathe him, or pay a service $35 to do so.
At least twice a night I get up to roll him over. Sometimes I may reposition him a dozen times before he’s comfortable. Taking a short vacation with my husband requires the assistance of a half-dozen people, usually volunteers. I once paid someone $350 to fill in for me for just two nights. That person refused to do so again, saying it was just too hard.
Meanwhile at my job, I have to work just a little harder than my peers to compensate for taking short absences and early or late lunch breaks to handle emergency toilet problems.
Finding a compassionate employer is a necessity. I’ve been fortunate in that respect. I know of moms who’ve lost their jobs after being late to work too often, because the school bus was late. One mom was fired after, for the second time in six months, taking off work to rush her daughter to the hospital due to a brain hemorrhage.
Working moms and dads who are caring for severely disabled children have lives that are 10 times harder than they appear to the outside world. But with valiant effort, we rise to the cause and do our best to care for our children and lead productive lives. With love and commitment as our fuel, we daily battle worn-out backs, emotional exhaustion and permanently broken hearts. We’re seldom free from worry and rarely get a full night’s sleep.
The proverb “It takes a village to raise a child” certainly applies. I’m eternally grateful to the many people who’ve kindly accommodated us and helped us maintain this fragile balance.
I can imagine a time when John’s DMD will progress to the point that I need to work part-time. If so, my employer is open to working something out with me. When John turns 21, he’ll qualify for personal care assistance from the state, and that will help, too.
As the garage door incident shows, my balancing act is continually under revision. No matter how it looks to others, it’s not an easy task. But with perseverance, a sense of humor, a good plan and just a little flexibility, working full time while raising a son with DMD is a reasonable option.
Laurie Bird lives in Oklahoma City with her husband Gary; son John Boles, 19; stepson Preston Bird, 17; stepdaughter Kelsey Bird, 15; and Star, a Brittany spaniel. She works for Terry Neese Personnel Service as a staffing consultant.