DENNIS ODA / DODA@STARBULLETIN.COM
Daniel Ulrich holds his 8-month-old son, D.J., while his wife Kathy holds their 2-year-old son, Myles. Myles has a pervasive developmental disorder, but he is improving with therapy. The family often leaves their Makiki apartment for outings to benefit the children.
Family activities
ease boy’s disorderA state service guides parents
through the challenges of therapy
Kathy and Daniel Ulrich laughed when asked the last time they had a date.
"It was when we were dating," she said.
That was more than three years ago, before Daniel began a challenging triple-specialty medical residency, before they had a special-needs child and before a second baby.
Now they do things as a family to help their son Myles achieve maximum potential with pervasive development disorders (PDD). He will be 3 in January. His brother, Davis Jae, called "D.J.," is 8 months old.
Daniel, in his final 18 months of residency, said PDD covers a spectrum of disorders and conditions.
"It could be sort of mild autism or sub-threshold autism," he said. "It doesn't meet the full criteria."
The couple came here in June 2000 after Daniel, 32, finished medical school at the University of Pennsylvania so he could intern in pediatrics, adult psychiatry, and child and adolescent psychiatry.
The University of Hawaii John A. Burns School of Medicine is one of fewer than 10 in the country that offer a triple board residency, he said.
A difficult pregnancy sidetracked Kathy's hopes of attending medical school to study speech pathology, although she said she's learning a lot about it at home with Myles.
For several years before becoming pregnant, Kathy, 36, suffered from severe and painful uterine fibroids that doctors tried to remove, she said.
"They told me there was not much they could do but a hysterectomy," she said. "If children were not important to me, I would have done it to feel better, but in the back of my mind, I was really screaming 'no.' I thought, 'Let's go to Hawaii and settle down and think about further surgery or medication to help me.'"
She became pregnant before reaching that point, despite doctors telling her there was only a 1 percent to 2 percent chance of that happening.
Myles was born six weeks early after a complicated pregnancy with "tremendous pain," she said. "He was only 4 pounds, 4 ounces, but he was doing fine, breathing on his own. I worried throughout my pregnancy because of my condition. ... I had to take drugs while carrying him."
She said she "decompensated" but "there was this whole child, crying and screaming. He looked at me. I looked at him. I thought, 'Wow, his eyes are so big.'"
He seemed to progress normally the first year, Daniel said. Then at about 16 months, the couple noticed something might not be right.
With no family here, Kathy said they took advantage of community resources, such as Keiki Play, an outdoor preschool in Makiki Park, and parent-baby support groups. They noticed "he was a little behind" in language and social skills.
She read books to him over and over, which he liked but "wouldn't point," she said. "He would babble but he wouldn't give me anything to understand or engage."
Lack of response and eye contact don't seem abnormal in children 1 to 2 years old, Daniel said. At 19 months, however, they became disturbed by his behavior and talked to a social worker in the state Health Department's Early Intervention Section, which provides services for children from birth to 3 years old with special needs. Myles was evaluated the next day by a speech pathologist.
"Despite knowing what she'd say, I was taken aback," Kathy said. "He tested at 8 to 9 months. He was significantly delayed. We were both shocked."
A support plan was drawn up with the family for treatment, respite care, counseling, therapy, and other child and family services.
H-KISS, the health department's Hawaii Keiki Information Service System, coordinated services for the Ulrichs. Speech, occupational and physical therapists helped them develop strategies to work with their son.
Even with a lot of help and support, Daniel said, "it's pretty overwhelming" for parents and child because of the emotion, challenges and stresses.
Myles' attention span improved almost immediately because of the speech pathologist, but his language still lagged behind, Kathy said. They began taking him to the Easter Seals classroom once a week.
"They do a lot there, but his speech was not coming up and his behavior was getting worse," she said.
They decided to get a psychological evaluation for their son, thinking speech was a sign of something bigger going on, she said.
He had about seven of the 10 characteristics associated with autism, Daniel said. "His social interaction was different from a lot of kids. He had an abnormal interest in certain objects and repetitive behaviors.
"What makes it hard with this condition, he's not sick," Daniel added, and that made it even more difficult to pick up any developmental problems in the first two years.
Often, they aren't detected until a child is 4 or 5 and in school, he said. And then, parents and teachers may think the child is just acting out and "miss that critical time when there can be intervention," he said.
Doctors at a recent meeting of the American Academy of Child and Adolescent Psychiatry, which he attended in Florida, agreed criteria for PDD needs to be modified for kids under 3 for early intervention and services, Daniel said.
"It can make a big difference," he said, advising parents to talk to their pediatrician, family doctor or school if they see something different in their child.
Although her second pregnancy was worrisome, Kathy said delivery was normal. D.J. weighed almost 6 pounds, and she had no fibroids. He is monitored closely and seems to be doing well, she said. "He crawled at almost 7 months. He babbles and he says 'mama.'"
Myles also has progressed because of different tactics, such as using a picture system to encourage him to speak, the parents said. A skills trainer goes with him to the Montessori Preschool every day to help him relay his thoughts.
"The difference before that and now is tremendous," Kathy said. "He still cannot really say his name, but he can pick out mom and dad in a photo."
He has trouble putting together a complete thought, but he knows about 100 words and can name things in his immediate environment such as "sky" and "moon," his mother said. "These are things we were looking for before he was 2."
She briefs Daniel on everything at the end of the day so he can help make decisions and work with Myles. They leave their small Makiki apartment on frequent outings for activities to benefit the children.
"It can be stressful," Kathy said, "but it brings you together in a wonderful way."
