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Sonoma Family Life Magazine

Dr. Lorna Catford: Exceptional in Every Way

Nov 27, 2007 12:00AM

When Dr. Lorna Catford and her husband, Bruce Robinson of Forestville, decided to start their family, it seemed like the perfect time.

Dr. Catford had been in psychology for several years, and she'd done consulting for creative problem solving, as well as written a book with a partner about "life's most important challenges." She'd worked in Scotland in the 1970s in a home for children with profound autism. She was teaching classes at Sonoma State University, and now she was ready to take on the challenge of motherhood.

Amber, the couple's firstborn, was beautiful and intelligent. Adding a sibling to the family was a natural choice, and when baby Naomi was born, the family was delighted.

But at Naomi's six-week appointment, Dr. Catford expressed concern about her newborn to the pediatrician. Something wasn't right, she insisted. The doctor dismissed her worries, and told her she was "overanalyzing." Dr. Catford didn't listen to that advice, and instead called Easter Seals and talked to someone there about her concerns.

"This was at 4 o'clock on a Friday,” Dr. Catford recalls. "By 9 o'clock Monday morning someone from Easter Seals was there, evaluating Naomi."

The visit confirmed Dr. Catford's worries: something was indeed not right. As the Easter Seals representative left, she handed a copy of a magazine to Dr. Catford called "Exceptional Parents."

"My reaction was, no, no, this isn't for me,” Dr. Catford says. "It sat on my coffee table for probably six months, unopened, waiting for me to adjust to the idea."

By now Naomi was clearly having some severe developmental issues. While she does not have the genetic marker for a syndrome called Rhett Syndrome, she has all the classic indicators of it: autism, cerebral palsy, epilepsy, and intense GI issues.

"Naomi is gorgeous and deep, but she can't speak, eat, or move on her own. We have to feed her formula through a button in her belly, and she has numerous medical issues."

Any parent can identify with the struggle to balance the needs of work, family, and self, but when you have a child with special needs you also have a venti-sized cup of guilt. Not only do you worry about the child with the diagnosis, you worry about the siblings sometimes even more.

"I remember times when Naomi was just a tiny baby, and I'd be reading to my daughter, Amber. We'd be all cozy together, turning pages, and suddenly, in the other room, Naomi would stop breathing. She'd choke on her own saliva, and we'd have to rush to her and turn her over to get her to breathe again. We'd just stop everything and run to the baby, terrified. And I think, ‘What does that do to poor Amber?'"

Dr. Catford and Robinson have reached out to other families and "formed a community of special needs folks" having get-togethers that include all the members of the family. They called themselves the "Tuesday Night Special" and some of the moms still meet, a dozen years later, and have a newsletter to keep in touch.

The couple recently hosted a Seder that came together in a few days after a friend from the group mentioned how hard it is to go to "regular" gatherings with their child's needs. "There were feeding syringes in the sink, wheelchairs and tubes and medical equipment everywhere.” Lorna laughs. "It was wonderful."

Besides the support system of their other special needs families, Dr. Catford most relies on the ability to "laugh at the craziness. And it does get crazy, but it's often in a good way, too. This year, for instance, we have another ‘daughter,' Kate Lapthaisong, an exchange student from Belgium. We're busier than usual, but it's great, too."

"It can be especially hard for a caregiver like me to ask for help,” Dr. Catford says. "We have an amazing nurse named Doris Clark who has been with us for eleven years, and she is part of the family. She makes a lot of my life possible, and we love her. I also use nature to reconnect, just looking at the different greens and the colors of wildflowers, and the way the wind moves in the trees. I guess I'm sort of Buddhist that way — I just slow down and breathe, be present with what is."

The numbers of children being diagnosed with autism continue to climb alarmingly, going from 1 in 2500 ten years ago to 1 in 150 by the most recent report from the National Center for Disease Control. Parents seeking respite workers began calling Dr. Catford's psychology department, begging for names of any student who might be willing to work with their special needs child, and an idea was born.

The CATS program — Collaborative Autism Training and Support Program — came to life two years ago as a joint project between Sonoma State University and North Bay Regional Center, and in 2006 it earned the Outstanding Service Learning Project at SSU Award. (Dr. Catford was also nominated for a fifth time for the Excellence in Teaching Award at SSU.)

This program equips students to work with autistic persons, through lectures and in-home service hours with a family in the community. The student gets hands-on opportunities to see several theories in practice, the lectures are open to the public, and families are invited to attend, and the families get some respite, too. The students come away with a greater knowledge of the opportunities in this growing field of care and they see for themselves the impact their involvement can make in a family's life.

Today Dr. Catford is hard at work trying to raise the funds to continue the class, to give another group of bright young students a glimpse of what it means to have autism or deal with autism, in a practical way. Reading about the spectrum and seeing it in person are two entirely different things, and the need for qualified care providers is only going to go up.

"It's like a club,” Dr. Catford muses, referring to being intimately involved with a special needs child. "I thought I knew what it was like, but I didn't really know until I was a member."

Besides being worried about her daughters' health and welfare, Dr. Catford says that she had to face the reality of the "Exceptional Parents" magazine on the coffee table. "It became the only magazine I read, cover to cover, including ads, for many years,” she laughs. "It understood the reality of my life, setting up a college fund for one child and a special needs trust for another child."

It hasn't always been easy, even for a strong woman like Dr. Catford. "I went through a terrible black cloud where I was really having a crisis of faith, and I remember in particular we were seeing Dr. Ross, a specialist with infants with special needs, and this other mother said, ‘God picked me.' Well, I just went to pieces. I was so angry. No. There couldn't be a God, because God wouldn't do this. God wouldn't do this to my child; He wouldn't do this to me."

Dr. Catford pauses, recalling that moment, then says, "But you know what? We're past that. I'm resilient. My mom is a Holocaust survivor. We do what we need to do."

For more information on the CATS Program or to speak with Dr. Catford, call 664-2402 or email [email protected]