Family lives with autism

Tender moment Jacob Dowden has severe autism and usually is not still for a minute. His mom, Denise, relishes those fleeting moments when he shows affection. Comet photo by Jennifer Archibald There's no sugar-coating it. Caring for a severely autistic child is frustrating, tiring, and all consuming. It takes a toll on the family.

Tony and Denise Dowden know this first-hand.

They have two children at home - Noah, age nine, and Jacob, age seven. Noah is a good student, plays sports, and likes video games. Jacob will be eight this month. He was diagnosed with severe autism when he was two and a half.

"As parents, we didn't see it," Denise said. "But my mother saw signs, such as flapping his arms, and she told us we should have him tested."

Since then, they have seen a lot of specialists.

"They've all told us something different," Denise said. "One told us Jacob didn't understand anything. We were told he should be in an institution."

The Dowdens are committed to raising Jacob at home.

"We couldn't sleep at night if he was in an institution," Tony said.

Fun with Dad Sometimes it takes two people to watch and handle Jacob. His dad, Tony, plays with him or takes him for a ride in the truck to give Jacob's mom a few minutes to relax. The family lives in a farmhouse near Burlington. Comet photo by Jennifer Archibald "We wouldn't know the type of care he was receiving," Denise added. "He couldn't tell us."

Jacob does not talk and is not potty trained. He eats things he is not supposed to eat, and he chews on his clothing.

Denise said Jacob is in constant motion.

"He never wears down," she said, until he finally settles down at night. "Then he wakes up about every two hours."

"I haven't had a good night's sleep in eight years," she said.

Jacob now weighs 80 pounds, and is harder to handle. Denise relies on Tony to help her when she just can't manage Jacob.

"If Jacob doesn't want to do something, I physically can't make him," Denise said.

Tony, who is self-employed in the home improvement business, stays around for awhile in the morning in case Denise needs help in getting Jacob on the bus.

The Dowdens are adapting to their situation and are trying to find creative ways to make their lives a little easier - and better for Jacob.

"Slowly, but surely, it's getting a little better," Denise said.

They are learning what Jacob enjoys doing and what has a calming effect on him.

"It's also helped that he's on a routine," Denise said.

Some of the things Jacob loves to do are run outside, swim, jump on the trampoline, ride in any kind of vehicle, listen to classical and rock music, and watch specially selected videos.

He has to be watched con- stantly outside because he could easily run away and get lost.

"He's also likely to eat mud, sticks, and dandelions," Denise said.

So far, they've just had an inflatable pool, but they'd like to get an above ground pool. They have seen a used one that they are thinking about buying.

"He likes pressure, and that's why the water has a calming effect on him," said Tony.

"The Burlington Kiwanis Club bought him a weighted blanket, which also helps," Denise said.

Jacob goes to Pettit Park School in Kokomo.

"The school gave him a big exercise ball for Christmas," Denise said. "I don't know what we ever did without it." She said he plays on it and bounces on it all the time, and uses up a lot of energy.

Jacob's favorite thing to do is jump on the trampoline. He wants everyone to jump with him, including Mom, Dad, brother, grandparents, visitors to the home, and even salesmen.

Every evening, Tony takes Jacob for a ride in his truck, and they listen to music on the radio. Jacob enjoys this, and it gives Denise a break. Denise also has given Jacob rides on the garden tractor, but he's getting too big now.

"We need a golf cart," she said.

Tony and Denise say that Jacob has a lot of traits that are common to autistic children, but he's also different in some ways.

One difference, Tony said, is that Jacob likes to hear motorcycles and other loud noises. He also gives hugs and kisses, and displays some social interaction. He takes people by the hand to lead them to the trampoline to jump with him.

Tony, Denise, and Noah all play with Jacob and also work with him.

"Noah is so good with him," Tony said. He added that Jacob takes up a lot of their time but they still try to see that Noah leads as normal a life as possible. Noah plays football, basketball, and baseball, and Tony is a coach for all three sports.

"Tony and Denise are wonderful parents," said family friend Carol Rhine.

She said she has known Jacob all his life, and has seen some changes in him.

"In the beginning, he wouldn't look you in the eyes," she said. "Now he does, and smiles." She said he shows more emotion and affection than he used to.

"He sits on his mom's lap, and kisses her good-by," Carol said. "I think he's still capable of more."

Denise said his family, his special school, and his therapists are all working with him to teach him some simple signing, but it's slow going.

"He doesn't take to new things," Tony said.

For some time now, the family has had an idea for something that would make life easier for them and would also be something that Jacob would enjoy.

They've talked about remodeling a place in the barn that would be both safe and fun for Jacob.

There are many distractions in the house. Denise said Jacob jumps on things and pulls things over. If they had a big room that was designed for Jacob, it could have floor mats and therapy equipment and plenty of room to jump and bounce and watch videos. It would need heat, and possibly air conditioning.

Tony said with such a place, he and Noah could watch Jacob there, and give Denise some free time in the house. This would be especially welcome to her on weekends and during the summer when Jacob is not in school.

Tony plans to take charge of the 15 x 30 project himself, but it will still be costly.

Friends and relatives who are close to the Dowdens would like to see the project completed sooner rather than later, so they've decided to help.

Carol Rhine has started a fund at Salin Bank, Burlington, called "Jacob's Place." The fund is in her name, and she will be responsible for disbursements.

Burlington Kiwanis Club is starting out the fund by donating half the proceeds from its annual tenderloin dinner. The event will be April 5 from 4:30 to 8 p.m. at the Burlington Park Building.

Carol said some other fundraisers are planned for this summer.

Denise expressed her appreciation for Jacob's doctor in Kokomo, for his teachers and therapists, Northwestern School for busing him, her friend Carol, the Kiwanis Club, and others who have provided help and resources.

"Along with the difficulties of caring for Jacob, there are rewards, too, including all the good people we've met," she said.

April is Autism Awareness Month

What is Autism?

Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships. It is associated with rigid routines and repetitive behaviors. Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It is four times more likely to strike boys than girls. Symptoms can range from very mild to quite severe. The diagnosis of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Source: autismspeaks.org

Jacob's Place Fundraiser

Burlington Kiwanis Pork Tenderloin Dinner April 5, 4:30 to 8:00 p.m. Burlington Park Building