Parents identify, intervene with daughter's autism

Editor's Note: This is the second in a series of articles from the Dexter Daily Statesman focusing on special needs of special children.

By NOREEN HYSLOP

Dexter Daily Statesman

Brooke Reed seemed to be the perfect newborn for Shawn and Holly Reed of rural Puxico, Mo.

"She was an angel," said her mother, remembering her daughter as an infant eight years ago.

"She ate well. She slept well. She rarely cried. She would coo and smile like all babies," said her father. "We had the perfect child."

By all indications, Brooke proceeded on track for about a year, reaching appropriate milestones with success. It wasn't until she was nearly 12-15 months old that her parents, both registered nurses, recognized some changes in their blue-eyed, blonde toddler.

"She was not making eye contact as readily," Holly said. "And she just seemed to be withdrawing at times and became a little distant."

Brooke's speech was not developing in an age-appropriate manner either. By the time she reached 18 months, the Reeds were convinced that something was "just not right."

When she could not verbalize her needs, an often visibly frustrated Brooke would take her mother or father by the hand and try to show them what she wanted.

"So often we could tell she wanted to say something, but the words just wouldn't come," Holly said.

Brooke is the Reeds' only child, and they have spent a lot of energy to intervene on the symptoms of autism that, left untouched, would have separated her from the everyday world of reality.

Early visits to the pediatrician were often met with the suggestion that Brooke was fine and that her parents were just "overconcerned or overreacting." That diagnosis was often attributed to the fact that both parents had a medical background.

"It was frustrating to know that something wasn't right and to be told over and over that we were reading too much into her behavior and her lack of progress," Holly said.

Before the diagnosis of autism, Brooke's hearing was tested, and the Reeds were told she needed tubes in her ears because of a buildup of fluid. The anxious parents hoped the tubes would solve all of Brooke's problems. While the procedure helped her overall, there were still obvious signs that something was wrong.

The Reeds said after a frustrating period of referrals and appointments, when Brooke was nearly 3, they visited a St. Louis physician who confirmed that Brooke had autism. By then, she was attending the Kenny Rogers Children's Center in Sikeston to receive speech therapy and occupational therapy after being diagnosed with verbal apraxia. While still on the waiting list for Kenny Rogers, Brooke was also on a waiting list to see a pediatric neurologist at St. John's in St. Louis.

"It's a real waiting game," Holly said.

When the day arrived for the St. John's appointment, the Reeds were told after a nearly daylong examination, that their now-3-year-old had autism. While the couple's thoughts had been going in the direction of an autism diagnosis for some time, the spoken words still came as a surprise.

"I think a lot of people, even her therapists, suspected autism, but were afraid to tell us that's what they thought," Shawn said. "And so we weren't convinced until that day."

A subsequent visit with specialists in the autism field from the Thompson Autism Center based in Columbia, Mo., proved invaluable for the Reeds.

"Therapists came to our home and spent two full days evaluating and working with Brooke," Shawn said. The therapists drew up an Applied Behavioral Analysis (ABA) therapy for Brooke's specific needs. The program's implementation would serve Brooke at home and at school for the next four years.

"The ABA program required from 30 to 40 hours a week to implement," Holly said. "It involved a lot of positive reinforcement and began with very basic instructional lessons and commands. We found it to be an invaluable tool that has served Brooke amazingly well with her development."

Another gold mine discovered by the Reeds through a mutual friend with an autistic child is the relationship, although only via telephone, with a Kansas physician, Dr. Michael Brown.

"He is a Defeat Autism Now physician and he's incredible," said Holly. "He's very expensive, but we have gained invaluable information and techniques from his wisdom regarding autism."

Brown promotes a natural treatment, with proper diet and vitamin supplements, before referring children to prescribed medications. The Reeds have found through his analysis of Brooke's blood work and behavioral concerns expressed by the couple, what they consider to be the best solutions for their daughter to not only cope with autism, but to achieve goals they once thought impossible.

There is a wide spectrum of autism, and Brooke was diagnosed as "mild to moderate." Intense therapy has played a major role in her success in school, in sports and especially in the realm of music. Brooke loves music, singing, acting and dance. She takes music therapy at Poplar Bluff, Mo., once a week.

She also attends Social Group Therapy in Jackson three times a week. Much of Brooke's therapy is expensive and involves several hundred miles of travel. And yet, the two working parents, with Holly also in school to become a nurse practitioner, accommodate Brooke's needs through working together and sharing the responsibility of their daughter's needs.

At the age of 8, Brooke today is functioning well at Puxico Elementary School. She plays ball, is active in Girl Scouts, church activities and has a close circle of friends. But the steps that brought her to where she is today are substantial, and they point to the success of early intervention when dealing with the special needs of special children.

"We have been so blessed with an excellent school system and a wonderful staff of professionals," Holly said. "We're very fortunate."

It becomes evident when visiting with the Reed family that the trips for therapy, the physicians' visits, the evaluations and the expense of an autistic diagnosis, are not considered a burden, but rather a privilege.

The Reeds agree that if there is one point to be taken by parents of children with special needs, it is not to give up. They said to find a physician you trust and use resources like the Internet and libraries to learn about new treatments.

"We've learned so much through research and just going forward, that now I can't imagine it any other way," Holly said.