Sometimes an uncomfortable silence in the ultrasound examination room is the first indication that something isn't quite right. Sometimes a blood test comes back without a clear result, requiring more testing to be done. And sometimes -- well, sometimes lightning just strikes in the delivery room when a baby is born with a disability.
The Spokane Regional Health District (SRHD) recognizes about 4,000 different diagnoses of special needs and disabilities, covering areas such as growth and development, learning and behavioral challenges, as well as physical and mental disabilities.
It's estimated that one of every five children is born with or develops a special need or disability. As doctors have gotten better at diagnosing different disabilities, the number of children needing extra help and support in school -- and later on in adult life -- has grown. But funding for these programs hasn't increased at the same rate.
"We are over our cap. We can claim 13 percent of our population [as a basis for] funding, but we have more children who need our assistance," says David Greaves, one of the directors of special education in Spokane Public Schools. "We are required to put on programs for everyone, and we do. But there are more children in the programs than we get funding for."
The school district provides programs for special needs children from the time they turn three years old until they turn 21. Before the age of three, children are assessed, assisted and supported through the Infant Toddler Network located at the SRHD, and through programs at the Guild's School.
Waiting lists are not uncommon, and public school officials as well as health program coordinators have become experts in stretching and juggling the dollars they have.
"There are many reasons we see more children with special needs," says Greaves. "We here in Spokane are close to excellent hospitals, and I think families who need special education sometimes move here because they know they can get access to medical services they need. And we are in a low-income area. There are a lot of children out there who need extra help."
Physical disabilities -- Being born with a cleft lip and palate is one of the most common birth defects. Because cleft lip and palates are so common, the maxillofacial program operated by the SRHD is a good example of how support programs for children with physical disabilities work.
"This team has been around for probably 40 years, and the American Cleft Palate Association has been around for about 60 years, nationally," says Laurie Vessey, nurse coordinator for the maxillofacial program. "A cleft lip is something that can happen to everybody -- it's not just low-income or low-education people. Some people seem to think that public health always deals with the bottom of the barrel, so to speak, but that is not the case with this program."
The shock and the blame is the same as with any other disability.
"Parents tell me that people at the grocery store stare at the babies before they have their surgeries, and then look at them like they're thinking, 'Oh my god, that mom must have been drinking throughout her pregnancy,'" says Vessey. "But people need to realize that this is not something the parents did or did not. Believe me, parents rack their brains trying to find out if there's anything they could possibly have done. It's sad to watch when parents beat themselves up."
Vessey says that more than half of the parents of children with cleft lips or palates find out during an ultrasound examination even before the baby is born. Doctors then contact Vessey, and she gets back to the parents with information about treatment. She also answers any questions the parents may have.
"Many of the parents tell me they can't imagine what it would be like to have a baby like this, without some preparation," says Vessey.
"The care process is very time-sensitive. One surgery lays the foundation for the next, and some treatments have to be done earlier than others," says Vessey. "That's where team care gives a lot better results. I can coordinate everyone -- the speech therapist, the doctors -- so we can move the child through the process as smoothly as possible."
Developmental -- Physical disabilities and birth defects can usually be observed clearly and diagnosed; in addition, they are usually dealt with in concrete ways and often have finite medical solutions. Developmental disabilities, on the other hand, can be much harder to diagnose and treat. Sometimes parents can't find the programs they are looking for.
"When I came back to Spokane in August of 2000, I was looking for information -- pediatricians -- and checking to see what the school districts were doing," says Dawn Sidell, president of Spokane Autism Cooperative. Sidell is a nurse with four children, including a son who has autism. She didn't find an autism center in Spokane, but she did hook up with a very active parent support group that still meets on an ongoing basis.
"The parent support group had lots of information, and I was very impressed with all of what they shared," says Sidell. "I wasn't all that optimistic when I started looking around in Spokane -- I mean, even in Seattle they don't have an Autism Center that provides birth-to-adulthood help."
Today, Sidell is one of the driving forces behind the creation of the Northwest Autism Center, which she hopes will be able to open in January 2004.
"There is no center yet; I don't want parents to think that there is this place they can go and we are all ready," says Sidell. "The first service we'll be able to provide is information and referrals. The ultimate goal is to have direct service delivery by doctors and staff at the center."
Autism is a very complex developmental disability that impacts the normal development of the brain and the areas of social interaction and communication skills. It's a spectrum disorder, which means it comes in very mild forms (Asperger's syndrome) and more debilitating forms (Pervasive Developmental Disorder).
No blood tests or chromosome tests can indicate autism -- it's diagnosed solely by observation.
"My son looks perfectly normal," says Sidell. "One of the biggest challenges is that these children have a lot of sensory issues -- maybe they can't tolerate sitting next to someone, or they take their clothes or shoes off all the time. Making them do things they don't want to can lead to meltdowns, screaming and head-banging. People misunderstand this, thinking that having autism means you have this out-of-control, wild behavior. That is not the case. The out-of-control behavior is caused by the frustration the child feels because of the disorder."
The U.S. Department of Education estimates that the number of children diagnosed with autism has increased by 172 percent over the last decade. Today, between one in 500 and one in 150 have some type of autism.
"Autism is very hard to diagnose, but people who are well trained can diagnose it very quickly. One child just got diagnosed at the age of 14 -- until now, he was getting the diagnosis of psychosis or something," says Sidell. "An autism center will decrease the amount of time it takes from the time we see the child until it's diagnosed, hopefully to about six months. Today it can take four years."
Integration issues -- Once diagnosed and treated, special needs children -- along with their families -- continue to face challenges every day. Sidell says having a family member with autism often leads to isolation of not only the autistic person, but of the entire family.
"You don't go out in public a whole lot, because you never know quite what's going to happen," she says. "Even family dinners, like Thanksgiving, can escalate into a stressful situation where things get broken and there is screaming going on."
Most parents of special needs children send their children to public schools, because they are required by law to provide programs and extra aid for the child. Sidell's son now has a special assistant with him in school, every day.
"Nine Mile Falls School District has been so receptive and warm and always ready to sit down and talk," she says. "I'd recommend parents look for that feeling. Sure, there are days where you don't sleep and you cry a lot, and they wish you'd go away and you wish they would quit their jobs. But my son has really blossomed over the past couple of years."
The Spokane Regional Health District (SRHD) provides continuing education for daycare providers dealing with special needs children, but already pressed daycare providers can be reluctant to take on special needs children.
"Many developmental disabilities are discovered in daycare settings because the child is there eight to 10 hours a day," says Roni Turner, the public health nurse who coordinates the training of daycare providers and the assessment of the children. "They already have four infants to one caregiver and seven toddlers to one caregiver -- there just aren't enough arms to go around."
It's especially difficult if a child becomes violent and can hurt other children.
"One child was kicked out of 11 different facilities -- not because the caregivers don't care about the child, but because they feel like they don't have the resources to deal with it," says Turner. "It can be hard to get a treatment plan you can understand."
Often there is no funding whatsoever for respite care, in which a caregiver comes to the home to give the parents of a special needs child a break.
"It can be a vicious circle," says Sidell. "You can't find childcare, so you can't work. You can't work, so you don't make any money, so you can't pay for anyone to help you at home. It's definitely one of the biggest challenges when you have a child with special needs." n
The Spokane Regional Health District can be reached at 324-1500 or by visiting www.srhd.org. The yet-to-be-formed Northwest Autism Center is looking for volunteers and donations. Call: 467-8760. The Spokane Autism Cooperative meets at St. Luke's Rehabilitation Center on the third Wednesday of every month from 7-9 pm. Call: 624-3323.
Sound Partners for Community Health is a program of the Benton Foundation. Support for Growing Up Healthy, a project of the Spokane Regional Health District, Spokane Public Radio and The Pacific Northwest Inlander, was provided by a grant from the Robert Wood Johnson Foundation.
Publication date: 10/02/03