Carrie Edberg sits along with son Garrett, who is diagnosed with Childhood Apraxia. Carrie recently formed the Minnesota Childhood Apraxia Support Group to bring together families and friends dealing with Childhood Apraxia as well as to support, to educate and to raise awareness in our society about Childhood Apraxia. Photo by Wendy Erlien

Imagine having a disorder of your nervous system which interferes with your ability to produce sounds and combines sounds and syllables to form words which causes difficulty programming and planning speech movement.

The signals from the brain telling the lips, jaw and tongue where to move are not clear or are disrupted.

Now, imagine you are a child.

This is Childhood Apraxia of Speech.

"Childhood Apraxia of Speech (CAS) is a motor planning speech disorder. CAS frequently co-occurs with other disorders, so sometimes kids are misdiagnosed," said Janet Jacobs, a Speech-Language Pathologist with Associated Speech and Language Specialists. "It is important to diagnose it correctly because treatment must address motor planning and movement deficits and not production of individual sounds, vocabulary and understanding of language."

The diagnosis was a long process for 3-year-old Garrett Edberg of Rogers, but the diagnosis has led to therapy and the creation of Minnesota Childhood Apraxia Support Group.

"At birth, his apgar scores were fine and he seemed to be developing until 6 months. I was monitoring his growth and development from the charts the school system passes out. I would highlight every development goal he would reach," said Carrie Edberg, Garrett's mother.

At 3 months, Garrett had reached all but two development goals.

At 6 months, he was reaching less than half of the development goals.

At 9 months, he made three out of nine of the development goals.

"It was at 6 months where I really started noticing, he was always very quiet and rarely cooed or babbled," said Carrie.

She stated that it was addressed at doctor visits, usually only to hear the response that Garrett may be a late bloomer or that males are less vocal than females.

"At a year, I thought I really needed to do something," she stated. "He wasn't hitting any of the milestones."

Garrett underwent a variety of tests, including a hearing test and autism test. All the tests came back fine and it could not be determined what Garrett had. As he reached 18 months of age and wasn't able to walk yet, Carrie contacted the school district and Garrett qualified for physical therapy. One of the therapists suggested that Garrett might have Apraxia. Shortly before he was 2 years old, Garrett was diagnosed with Apraxia.

"At that point, we realized what he had. Then, we had to figure out what to do," said Carrie.

She stated that she feels that lots of doctors don't know a lot about Apraxia and often don't recognize it.

"It is very frustrating as a parent when your child has been diagnosed with something that some people don't know is out there," said Carrie.

Since Garrett has several concerns, Carrie indicated that he is considered to have Global Apraxia, which covers several different forms of Apraxia. As treatment, Garrett goes to physical therapy and occupational therapy twice a week plus speech therapy two to four times a week.

"Early therapy and intervention is so important for these kids," said Carrie. "Once therapy did start, he is hitting more of the developmental milestones. No one will give us an exact timeframe of how long he may need therapy since each case is different. I try to keep his life as normal as possible."

For Childhood Apraxia of Speech, Jacobs indicated that children need repetition and practice with frequent therapy sessions.

"It is hard to learn a new skill if therapy is only received one time a week," said Jacob. "We encourage children with CAS who are nonverbal to use signs initially. This gives them a means to communicate and reduces frustration. There is no 'one treatment program' that is right for every child with CAS. Parents need to recognize that it's hard for their child to communicate. Speech doesn't come easily."

Along with the challenges Garrett has faced and will face, Carrie indicated that can be a strain on a family-dealing with insurance issues, financial strains and interfamily relationships.

"It is hard," said Carrie. "It is like that for any family with a child that has special needs. One parent is always dedicating more time with that child and you feel guilty as parent. You just hope that the other children and your spouse can understand and you do your best."

From Garrett's diagnosis and meeting three other families that have a child with Apraxia, Carrie decided to reach out to other families by creating Minnesota Childhood Apraxia Support Group in January 2007.

"For us, as parents, we know we are not the only ones around the area that are dealing with this situation. Each child is different, but we all tend to run the same path with therapy," said Carrie. "We talk about what therapy seems to be working, where to go for therapy, what place wasn't good and more."

She said that along with support to one another and providing playgroups for the children, Minnesota Childhood Apraxia Support Group is trying to raise awareness in Minnesota.

"It is truly a disorder. It is not imaginative, it is not autism," she said. "The children can communicate and socialize. They can socialize with people, but they just may not have the words to convey. I think that given the right environment, they can bloom and reach the goals a typical child can reach."

Carrie indicated that the Minnesota Childhood Apraxia Support Group is open to anyone, whether they have a child with Apraxia or not. The group usually meets fourth Wednesday of each month. Information on the Minnesota Childhood Apraxia Support Group can be found at www.apraxiamn.org.

For those parents that suspect their child may have Childhood Apraxia, Carrie suggests talking to people, doctors, school system, neurologists and other parents.

"The school system can often provide an evaluation if a child is not hitting milestones. For us, the school system has been great for us," said Carrie. "For parents, go with your gut feeling. If you feel something isn't right, don't give up until you have an answer."