Special needs children deserve the chance to be extraordinary

Raising a child is like doing a puzzle in the dark. You get two pieces together and think, “Finally, I know what to do,” not realizing there are a hundred more pieces scattered across the room. For the parent of a special needs child, that puzzle has a thousand pieces flung across a minefield. I know. My husband and I have been navigating that field for the last 11 years.

If you were to meet my daughter today, at age 12, you would probably find her delightful. She’s smart, polite, funny, creative and fun. But it wasn’t always this way. When she was a toddler, we watched in horror as she banged her head against the wall, coated her skin with ice cream just for the sensation and had trouble navigating different surfaces without falling. Her internal engine seemed turbocharged, and her only tool for slowing down was often a violent tantrum.

We were new to parenting, so when family and friends told us not to worry, that she’d grow out of it, we tried to believe them. Then, during our daughter’s 16-month checkup, our pediatrician said: “I see red flags. Here’s the number for the Lanterman Regional Center. Call them.”

Up until that moment, I hadn’t heard of California’s system of regional centers. Now I credit them with providing the map to the minefield.

The state’s 21 regional centers — private nonprofits funded by the California Department of Developmental Services — were established in 1969 to help families whose children suffered from one of childhood’s big four: intellectual disability, autism, cerebral palsy and seizure disorders. In 1986, that mission was expanded, when the federal government mandated that states provide help for any child younger than 3 who was showing developmental or physical delays. The belief was that early intervention, known in California as Early Start, would put these children on target to catch up to their peers. It was this program for which our daughter qualified.

At 18 months, our daughter began an intensive regimen of therapies to deal with everything from desensitizing her to noise and teaching her to calm herself to providing the highly specialized therapy it took for her to learn to speak. (Even with this intervention, at 3 she couldn’t put a two-word sentence together.) There was no cost for any of these services, which were all aimed at helping our daughter reach her highest potential.

But Early Start stops at age 3. After that, our local school district was charged with her care, and the services they provided were depressingly inadequate. We watched as our daughter lost ground.

I don’t blame the schools. They are mandated to take care of high-needs children without having the budgets or staff to address the task. In fact, in 1982, the Supreme Court absolved states from the need to “maximize the potential of handicapped children,” leaving us perilously close to a situation where, if your child can sit in a seat without being disruptive, the school’s responsibility has been met.

Making matters worse, study after study shows that income disparity marks a cruel line between those who get help and those who don’t. The reasons vary, but it’s abundantly clear that children whose parents have more in the way of educational and financial resources are better able to push for services.

Surely it’s in society’s interest, both financially and ethically, for children to reach their potential. With that in mind, one would think that the best use of the state’s money would be to expand Early Start to follow children at least until they enter kindergarten, taking the responsibility for their care off overburdened schools. Sadly, just the opposite is happening.

According to Diane Anand, executive director of the Lanterman Regional Center, in the state’s 2009 economic downturn, regional center budgets were slashed with no consideration given to cost benefit. This happened despite the fact that the American Academy of Pediatrics was so alarmed by the “high prevalence of developmental problems in pediatric practice” that in 2006, it recommended that doctors screen all children at 9,18, 24 and 30 months to identify those who needed early intervention services.

But recent budget decisions have made regional center care available to fewer children instead of more. From the front lines, Anand has watched as “many children 24 months and older who used to qualify for Early Start are now being shunted to a program that only provides information instead of services.”

As the parent of a child who continues to need a variety of therapies, I can attest to the help I’ve gotten from reading books, speaking to other parents and searching the Web for information. But that can’t replace real therapy provided by trained professionals. To me, the new approach is a little akin to your child breaking an arm and the hospital sending you to a reading room to learn how to set it.

Is there hope for real, reasoned, practical use of state money for Early Start? As the budget committees review the governor’s budget for 2012-13, they will have an opportunity to restore funding and take cost-benefit into account this time around.

And there exists a chance for a hit-it-out-of-the-ballpark win. In 1998, California voters decided to tax cigarettes at 50 cents a pack to create First 5, whose aim is to get children school-ready, usually by offering pre-K starting at age 4. But there’s growing belief that the First 5 Commission could also benefit the most vulnerable and underserved children in California by helping to fund the Early Start program.

For children like mine — those who only qualify for one-on-one services until the age of 3 — traditional preschool is too little, too late. Thanks to early intervention, I get to live with an extraordinary child. Everyone deserves that chance.

Jamie Simons is a Southern California writer.

Jamie Simons is a Southern California writer.