A silver puzzle piece dangles from Tammy Maasen's necklace. The symbol for autism hangs close to her heart. To match, the mother of three wears a charm on her bracelet with the words, "Never, never give up."
The Maasen family, of Rich Fountain, Mo., has lived out those words for the past 11 years, the lifetime of the youngest member of the family - Tiara, who was diagnosed with autism in 2007.
Tammy utilized the Parents as Teachers (PAT) program, working with a mentor to help develop Tiara at her earliest stages in life. The mentor gave her average or above average marks, but then she took a drastic turn. Suddenly, when she was nearly 20 months old, Tiara - who had started talking - completely lost her speech. The rest of her abilities declined immediately after the speech loss, Tammy said.
That's when she knew something was wrong, kicking off - what she didn't know at the time - a life with autism.
The PAT mentor gave the mother a list to check for signs of autism, something Tammy never heard of. Tiara, who Tammy described as low-functioning at the time, became aggressive and self-injurious - frustrated with not being able to communicate.
As a non-verbal child before her second birthday, Tiara started working with a speech pathologist. She learned sign language, and the family placed pictures around their home. At two, Tiara started cooing - saying the soft, gentle sounds babies make. Within three months, Tiara was saying 75 words.
"I was thinking about this whole journey we've been on with her, and I remember late at night just crying my eyes out and begging God to please let me hear her say, "I love you' one day," Tammy said. "That's all I wanted. But after that happened, it wasn't all I wanted. I wanted more. It seemed like every time there would be something more I'd ask for, and I'd almost feel guilty that I asked just because I know there are other kids out there whose moms were never going to hear "I love you.' It's very humbling."
Multiple medical professionals - occupational therapists, speech pathologists, psychologists and more - tested Tiara at the Thompson Center for Autism at the University of Missouri. One by one, they interacted with the then-toddler while the others observed her behind a double-sided mirror. They officially diagnosed her with autism, and Tiara was later enrolled in the center's three-year program.
The Maasen family developed a plan for Tiara, carried out by five applied behavioral analysis implementers seven days a week up until she started kindergarten. It took six months for Tiara to understand the difference between "I," "me," and "you." This is self-concept, how someone perceives themselves and has the awareness of oneself in comparison to others. At 4, Tiara started occupational therapy at the Special Learning Center in Jefferson City.
Attending school was a challenge, Tammy said, as her daughter was on "sensory overload" inside the building. Children with autism can be hyper-sensitive to the senses, and Tiara was particularly agitated by sound. School assemblies, music class and physical education overwhelmed her. She attended school for 30 minutes to an hour daily and then worked her way up to a full day.
Tiara didn't like the feeling of socks and shoes on her feet. Certain clothing bothered her, and she never enjoyed her mother singing lullabies. She hid in tight spaces - like closets and dresser drawers - to escape from everything. Covering up in a 55-pound, weighted blanket helped her feel safe and calm.
When Tiara was in grades kindergarten, third and fifth, Tammy gave autism presentations to students and teachers. Through education, Tammy said Tiara's peers became her protectors, not her potential bullies.
"I really think that with knowledge there is understanding and then comes empathy and sympathy," she said.
Now, Tiara, a fifth-grader at Fatima Elementary School, is working on her social skills, eye contact, body language and communication. Tammy encourages Tiara to adapt to change. She switches up driving routes, and Tiara's hairstyle varies from worn down with a headband, side ponytail and back ponytail. Peer mentoring and interaction, Tammy said, are other keys to her daughter's development as a soon-to-be teenager.
Her mother said her teachers sometimes forget she is autistic because she is high functioning. Once unable to be around groups of people, Tiara can be found shopping nowadays. She enjoys going out to eat and spending time with her brothers, Tristen, 20, and Tanner, 16. In her spare time, she practices yoga with her Nintendo Wii gaming console.
Tackling the problem at the beginning, Tammy said, made the difference in her daughter's life. If not for early intervention, Tammy said doctors could have recommended her daughter be institutionalized because of her self-injuring tendencies.
"I just want people to realize that early intervention and services are so critical to these kids and their progress," Tammy said. "There's this window of opportunity for that neurological development, and if you don't hit it head on, you're going to miss the boat and the children are the ones that lose."
Tammy is organizing an autism awareness walk/5K for April 23 at North Jefferson Recreation Area Outdoor Pavilion. Registration starts at 7 a.m., and the walk takes place 8-11 a.m. Proceeds will be donated to local nonprofit organizations that assist those with autism and other special needs.
"Don't give up the fight," Tammy said. "Never, ever give up. Every day is going to be a new fight, but you have to stand strong for them and with them. Sometimes you get tired of the fight, but it's life. It's the cross God gave us to bear."