Among unexpected challenges that test our mettle, having a child with a serious disability must be one of the most difficult. Yet many people deal with this challenge daily.
Though there are resources and professionals in the community who can help, it’s often the mother who shoulders the lion’s share of the responsibilities. The three women profiled in this article are shining examples of motherhood at its best, as they bravely and lovingly help their children to realize their maximum potential.
Stepping up to the plate
Merced Diaz is a good-looking little boy who loves playing in the water. Following an outing to the neighborhood pool, he bursts into the house running, full of energy, as befits his 4 1/2 years. Within minutes, his babysitter has him happily ensconced on the computer, doing some digital coloring.
In many ways, Merced is just like other boys his age, but there is a difference: He is autistic. Diagnosed when he was 2 1/2, he has made great progress in his development, thanks largely to his mother’s determination to help him.
Merced is Theresa and David Diaz’s first child. At first, there was no indication that anything was wrong. A former elementary school teacher, his mother meticulously monitored his development from day one.
“His motor skills were on target or early, but after a while I noticed he wasn’t pointing at things the way young kids do, and he wasn’t talking,” recalls Diaz. “The pediatrician said not to worry. He told us that one of his kids didn’t start talking until he was 4.”
But when Merced was 2, the Diazes decided to test his hearing because he wasn’t responding to oral communication. That’s when the suspicion of autism first surfaced. Autistic kids may have perfect hearing, but they often act as if they are deaf. It took six months before the family was able to see a developmental pediatrician who finally diagnosed the disorder.
“For about two weeks I didn’t believe it,” says Diaz, a bright, attractive woman, who is currently the president of the Autism Society of Greater San Antonio. “But then I went online to research it and realized the doctor was right. It wasn’t the end of the world, though. I didn’t sink into depression. I had to accept that he was going to develop at his rate, not mine.”
It helped that in her youth she had watched a beloved grandmother rear a developmentally delayed son, who might have had undiagnosed autism. If grandma could do it, so could she, Diaz told herself. And that’s exactly what she’s been doing ever since.
The Autism Society of America describes the condition as a spectrum of neurological disorders impacting the brain and affecting the development of social skills and the ability to communicate with others. Though there are variations, typically autistic kids have trouble processing sensory information, prefer to be alone, have difficulties expressing themselves and may exhibit uneven gross or fine motor skills. In addition, they tend to engage in odd, repetitive gestures, have little sense of danger and do not respond to normal teaching methods. Many dislike being touched, which may be very difficult for parents to deal with.
But Diaz thinks the latter is largely a misconception. In any case, she has taught Merced to hug and kiss. “At least 100 times a day I go, ‘Come here, give Mommy a hug,'” she says, opening her arms wide to demonstrate. “But if I hug him for too long, he will let me know. There is a bonus to that. It forces him to speak. Autistic children want human interaction, but they want it on their terms.”
Diaz no longer works outside the home and is completely devoted to the care of her son and her second child, a daughter named Paloma. Following Merced’s diagnosis, she learned from various professionals — speech and occupational therapists and a developmental psychologist — how to work with her son. A lot of it meant hours on the floor every day, trying to engage him through play and repetition to interact and learn.
“From the moment he woke up until he went to sleep, I was in his face, trying to interact with him,” she says. “I wouldn’t let him retreat into a corner by himself. With early intervention you can do a lot; the brain is so plastic. Now his language is developing. Right now, we are working on the phrase ‘I love you.’ He repeats it and some of it is just that, repetition, but I keep explaining that it makes people feel good.”
Diaz uses a combination of early-intervention methods to stimulate her son’s emotional, cognitive and physical responses. When he gets something right, she rewards him with a big cheering display. A lot of what she does is not that different from ordinary play parents and kids engage in, except that she must be very persistent. It may take months to go from a single-word response to a simple sentence. One thing she is trying to teach him currently is that he should not run off when he gets out of the car. He’s been doing that lately and has not responded to her cries of “Stop, stop!” So how will she proceed, we ask.
“I’ll have to take him out on the sidewalk, take him by the hand and practice running and stopping when I say ‘stop,'” she says. “We’ll have to do it many times.”
In other exercises, she goes on all-fours with her son and sets up pretend scenarios like car crashes or a cooking session that progressively grows more complex. Altogether, Merced requires 25 hours of therapeutic intervention per week.
Today, Paloma is also included in the intense learning process. With all of that plus her work for the society, Mom has no time for much else. She never goes to the movies, for instance, and has pretty much given up on keeping a neat house. Now that Merced is a little older, Diaz gets a break for a couple of hours a day while he is in preschool, but her day is still hectic. Often, she forgets to eat and has lost 40 pounds since September, she says.
Given all of that, why did she take on the leadership of the Autism Society? Besides being a support group, the society organizes training sessions for schoolteachers and others in the community — including medical personnel — to prepare them to deal with autistic individuals who can and do grow up into productive adults.
“Somebody has to step up to the plate to create support in the community for adults with autism,” explains Diaz in her can-do, enthusiastic manner. “It’s very hard for them to get a job. People don’t accept diversity, which includes differences in special needs. Autism is on the rise. One person in 166 has it. My son will have to work someday, but he may need special accommodations. He is going to need an employer willing to work with him. Our city needs to realize that.”
I don’t have a disability
That’s what 18-year-old Ben Stainken wrote on an application form in response to “Describe your disability.” And later, he repeated it a second time, only in bigger letters: “I don’t have a disability.”
He has Down syndrome, but he is doing so well that in his mind he is just as capable as anybody. The MacArthur High School student, who’s just finished his sophomore year, was applying for a leadership position in a summer camp. His mother, Mercedes Stainken, is delighted that he feels that way. She has spent years fighting for Ben’s right to feel proud of himself, often having to re-educate educators who sometimes unwittingly tried to marginalize or segregate him.
For Stainken, that fight started 18 years ago when Ben was born. Since she was only 33 at the time, it never occurred to her to have any kind of genetic testing. What’s more, she already had a perfectly healthy daughter. But as soon as Ben emerged from the womb, the hospital staff whisked him away for testing, leaving the parents wondering what was going on.
“The doctor who finally spoke with us was someone we had just met that night,” recalls Stainken. “She told us that the chances of the baby living through the night were dim. We were shocked and horrified. We didn’t know what to believe, and we felt so vulnerable.”
Fortunately, that doctor was wrong. The bewildered new parents were soon given a dose of comfort when the director of the then-fledgling Brighton School came to see them in the hospital. She explained that there were new, early-intervention practices that can greatly boost the potential of children with Down syndrome, a genetic disorder that affects both physical and mental abilities. The Stainkens enrolled Ben at Brighton when he was eight days old.
Stainken cannot say enough good things about the school: “We learned at that point how important it is to be part of a community, to know that these services are there when you need them. Brighton is an example of how a small group of individuals (who started the school) can make a huge difference in the lives of others.”
Like Diaz, Stainken and her husband, Peter, learned from various therapists the techniques to use to help Ben achieve various developmental milestones. And, like Diaz, they had to be persistent. In fact, they became “fascinated with the process,” she says. Normally, we don’t realize how many separate movements and/or actions are necessary to accomplish even the simplest tasks. But when you are teaching an impaired child, you learn those things. Just crossing an arm over one’s body calls for a level of muscle tone and coordination that Down syndrome kids must struggle to achieve.
Great as Brighton was, however, it was also costly. Since insurance covered none of it, at 4 1/2 Ben transitioned to a public preschool program for the disabled, where he spent his mornings while attending a regular day care in the afternoon. That’s where his mom saw how good it was for him to interact with his healthy peers. From there on, Ben has attended public schools, with his mother watching over him every step of the way. She still remembers the excitement she felt upon realizing that he had learned to read.
“I was sitting with him one night, and I suddenly realized he was actually reading,” says the petite Stainken, who is currently a ceramics instructor at the University of the Incarnate Word. “I’ve never been so thankful and happy. It was thrilling! He was not too far behind his peers.”
The law requires that disabled children be given access to public education in an appropriate setting, but as Ben advanced, Stainken had to fight lingering outdated notions as to what was “appropriate” for her boy. She wanted him included in a regular classroom, as many educators advocate today. The process involves peer tutoring, an adapted curriculum and co-teaching by two classroom teachers, one of whom must be a special-needs teacher. But at Garner Middle School Ben was placed again in special ed, this time with some very disruptive kids. For the first time, he started acting up and using bad words. His mother stepped up her efforts.
“These transitions were the most stressful,” she says. “Each time you were working again with new people who didn’t know your child and his abilities. But it wasn’t until middle school that I felt that if I didn’t educate myself thoroughly on every aspect of my child’s education, my son would be marginalized. I felt a certain amount of anger, a sense of injustice, and I felt I had to be very vigilant.”
Her husband gives her credit for what she has done. “My wife has been the activist,” says Peter Stainken, who runs a remodeling business. “She has been the one always looking for opportunities. I was more inclined toward protecting Ben.”
Eventually, the Stainkens were able to enlist the cooperation of Judith Higgins, the then-new special education head for the North East Independent School District, who helped the school “hammer out a program for inclusion.” Still, when it was time for high school, new negotiations were necessary. Today, Ben continues to progress in an integrated environment at MacArthur High, plays soccer and works as a bagger at H-E-B. Friendly and funny, Ben has been embraced by his team pals, who watch out for him, says his grateful mother.
But life never stays still. Time is soon approaching when Ben will be old enough to leave home and maybe go to college, a change likely to bring a brand-new set of concerns for Mom.
“We always try to anticipate obstacles to his progress and run ahead to crack the door open for him. But now he is a young man; the choices will be his to make,” she observes. “One big concern is that there may not be a broad choice of educational options on the post-secondary level.”
Not one to accept the status quo, Stainken is already thinking ahead. She’s discovered a program at Lesley University in Boston that offers non-degree vocational training for special-needs young adults on the same campus where regular classes are held. Students like Ben can enjoy the experience of college living while gaining new skills and greater independence. Stainken is also thinking about contacting San Antonio colleges to see if any would consider starting a similar program.
When that transition comes around, it may be hard for Mom to let go. “In the early days, it was almost like I made a pact with my son that we were in it together,” she explains. “Yes, we have a special bond. He’s made our family what it is. As we get closer to that bridge, I may need help to make that transition,” she says wistfully.
The pain is always there
Like many mothers, Elahe Smith likes to take her 13-year-old daughter, Heidi, out to lunch and shopping. Sometimes, they have their hair and nails done, too. What makes these outings especially satisfying for Smith is that they provide a pleasurable experience for Heidi, who has been blind since birth.
“She likes tight clothes so that she can feel them,” explains Smith, who also has an older son with cerebral palsy. “She is also particular about her hair. When people compliment her on her looks, she enjoys it. She likes to be pampered.”
Mom is more than willing to oblige in more ways than one. Since Heidi was born, Smith’s life has been wrapped around her children’s needs virtually 100 percent. With no extended family around and with her husband, Douglas, often gone on military assignments, it has been up to her to be mother and father, nurse and therapist, cheerleader and counselor for years. Not that she is complaining. Her deep devotion to her kids made it all do-able, if not exactly easy.
Heidi came into the world prematurely, weighing only 1 pound, 4 ounces. The newborn got very sick immediately with a blood infection and underwent eight surgeries on her eyes. But the doctors could not save her vision. It hit Smith hard, especially since her son had been born too early, as well.
“I was devastated,” says the Iranian-born Smith, who is a nurse by profession. “To go through that a second time was so hard. I still cry about it. I had problems with my uterus.”
Heidi spent nine months in the hospital, then returned again several months later because of a bleeding esophagus. At 3, she had a liver problem that confined her to the hospital for another seven months, during which doctors put a shunt in her liver. But the little girl’s suffering didn’t end there. Two years ago the shunt became blocked, and Heidi almost died.
Smith talks softly in a steady voice, but her eyes betray her sorrow. Though she and her family have reached calmer waters now, she admits that the pain is always going to be there. “But you have to move on; to start thinking, what can I do to make things better for her,” she says.
We are talking in her comfortable living room in the far northwest corner of San Antonio she has called home for the last six years. She has mixed feelings about our city, though, because rude and sometimes prejudiced people have made hurtful comments about her and her children. Others are simply ignorant. Because of her darker complexion and black hair, they automatically assume she is Hispanic and often address her in Spanish. When she explains that she is from Iran and speaks no Spanish, they roll their eyes, she says, or reprimand her for “abandoning her heritage.” We laugh a little at that.
Still, good things have happened here as well. For one thing, her husband has retired from the military and now has a regular work schedule as a nurse. He is “amazingly supportive,” says Smith. Crucial help also came from Kay Burger, a Northside Independent School District teacher for the visually impaired who became an advocate for Heidi. Burger was instrumental in teaching Heidi to read Braille and in getting her the right equipment, including a Braille Note (a Braille keyboard/computer) to use for her schoolwork.
Meanwhile, Mom worked with Heidi to eliminate the typical mannerisms of a blind person, such as rocking from side to side, eye rubbing or holding the head down, which are due to balance problems. “Heidi doesn’t have any of those habits anymore,” she says proudly.
What gave Smith strength is the fact that though physically afflicted, both her children are smart high achievers. Now a seventh-grader, Heidi is an honor student and likes to sing, swim and act. Her brother, Andysheh, or Andy for short, started college early and works at Fiesta Texas as a game operator. Of the two, it’s Andy who requires more assistance. Because cerebral palsy affects muscle function, he is in a wheelchair and must be helped with many ordinary tasks. His tireless mother drives him to and from school every day and stops by in between to bring him lunch and help with special needs. Heidi, on the other hand, can do a lot by herself.
The two teens also know how to join forces when needed. On a recent occasion, Andy wanted some popsicles that Mom had put out of reach, high inside the freezer. He could see the popsicles but couldn’t get to them. So he guided his sister to the spot and voila! The goodies were successfully retrieved. Andy also takes Heidi to the movies and describes the screen action to her. But, like normal teenagers, they also fight occasionally.
“I have good kids,” says Smith. “I always treat them like normal kids. If they do something wrong, there are consequences. I don’t say it’s OK. They have limits, like everybody else.”
Apart from the emotional toll, health problems have a financial one as well. Andy has outgrown his wheelchair, for instance, and needs a new one. The Smiths are hoping that insurance will pay at least 20 percent of its $12,000 cost. And they recently purchased a handicapped-modified $52,000 van to allow their son greater independence.
“I want the children to be as happy as they can, to have good memories of their growing-up years,” says Smith, who hardly spends any money on herself.
When Heidi returns from school, she spends a little time chatting with us. She would like to sing more often in school musicals, she says, to get bigger roles. Also, summer theater camp is something she looks forward to, so maybe her career will go in that direction — music, acting. But if not, psychology is a possibility.
A sweet, slim teen, Heidi looks and acts like one. Asked about her relationship with her mother, she quips: “She is a really cool mom.”
Author: Jasmina Wellinghoff
Photographer: Liz Garza Williams