Parents deal with children’s autism, start group to help others do same

Meredith Toddre is well aware of autism, not just in April - National Autism Awareness Month - but every month of the year, each day of the week, all the moments of her life.

Toddre doesn't live with autism, but autism certainly lives with her. Just down the hall, in fact. Two of her three children have the neurobiomedical condition of which there's no known cure or origin.

Eleven-year-old Allison suffers from severe autism. She just started speaking three years ago. Nathan, 13, has high-functioning autism. His twin, Tyler, strictly suffers from puberty.

On this Tuesday afternoon, Allison, whose hair has been bobbed to match "Mama's," prances about the house in a pink sweat suit and bare feet as she searches for her cellphone. Nathan politely asks for a can of root beer before holing up in his bedroom. Tyler wears a backward cap and crunches on an after-school snack in the kitchen while Mom chats with a visitor in the living room. And, Dad braves rush-hour traffic on his way home from work.

It's the typical snapshot of a family unwinding from another weekday. But things didn't always look this orderly.

Meredith remembers the days her kids did nothing but scream. Unanswered questions lingered. And, costs for her children's autism treatment exhausted savings accounts and her husband Ralph's beloved guitar collection.

The Toddres hit a brick wall. But they found a way to bulldoze through it in 2006 when they launched the nonprofit organization Autism Coalition of Nevada, or ACON.

The coalition has helped pass five autism-related bills in Nevada and is working on a bill to reform state education as it applies to autistic kids. The "biggie" of their legislative efforts happened in 2009 when Nevada became the 11th state to mandate insurance coverage for autism.

With proper treatment and care for Allison and Nathan, the Toddre family can live in relative peace. "Relative" because the gastrointestinal problems still plague two of them. The anxiety still keeps Allison up at night. Their immune systems still struggle. All problems typical of autism, a condition Meredith knew nothing about when Nathan was diagnosed with it at 19 months old, and only slightly more when Allison was diagnosed at 1 year old.

Now she's looked to in the local autism community as somewhat of an expert on the subject. Some of her knowledge came from extensive research. Most of it derived from personal experience.

Autistics have an aversion to eye contact and physical touch. The characteristics can sucker punch the mother-child bonding experience. Meredith, who describes herself as a social, touchy-feely person, refused to accept a lifetime without cuddling her kids. Before doctors encouraged desensitization, the way they do now, she created her own version of it.

For five minutes straight, she'd tickle Nathan's tummy, despite his defiant body. She'd force eye contact, ignoring his protesting sounds. When the five minutes expired, she rewarded her toddler with M&M's.

She knew it was working when her son voluntarily lifted his head to look his mom in the eyes. A milestone that still gets her teary. Giggles followed. Pretty soon she was giving her son zerberts - blowing on his stomach - to his utmost delight.

The perseverance paid off. Mother and child connected.

Once they accepted the touch of their mother, Nathan and Allison developed a system of communication. They would grab her hand and lead Meredith to something out of reach, or a locked door, maybe the trampoline. She'd grab it, unlock it, or approve it. One day, Allison took her to the family room and placed her hand on the TV, which aired a commercial for a new toy. Point taken.

Meredith even found a way of unscrambling the gibberish her children, and many autistics like them, uttered. Somewhere in a long stream of words, she says, you could decipher the word "drink." Well, at least she and her husband could. It's the kind of translation system only a parent can learn.

Through their efforts with ACON, Ralph focused on legislation and treatment for autistic kids while Meredith set her sights on the parents. She self-published a book, "The ABC's of Autism," and recently started PowerOverAutism.com, a blog intended to "empower parents."

"The littlest triumphs are the most incredible things and no one cares, but other parents get it. Parents are the foundation for these kids," she says. "Without them, these children wouldn't get the treatment they need."

She and her kids are proof of that. She gives them plenty, but she gets even more in return.

Nathan was 4 years old the first time he told his mom he loved her. Allison was 5. Both times Meredith was "tending" to them, helping them out of their clothes, wiping the drool from their mouth. Just being their mom.

"It was just the word 'love' with a hug," Meredith says. "You cry for months when that happens."

Contact columnist Xazmin Garza at xgarza@reviewjournal.com or 702-383-0477. Follow her on Twitter @startswithanx.