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When my son Jonah was 2 1/2 years old, we received the gut-shattering news that he had a genetic mutation called Fragile X Syndrome. This diagnosis swept us into a maelstrom of dueling currents: As we embarked on the inevitable grieving process, we were simultaneously thrust into the bewildering search for a therapist who could help him progress verbally, physically and socially.
Maybe you have a child with a mild speech delay. Maybe you have a child with multiple developmental disabilities, like my son. Either way, you’ll need to sort through the byzantine world of special needs, which includes finding knowledgeable, competent speech, occupational and/or physical therapists. Here’s what I’ve learned.
Your first step, assuming your child’s age 3 or younger, is contacting the New Jersey Department of Health’s Early Intervention System (nj.gov/health/fhs/eis/ or 888-653-4463). There’s a formula for payment unless a family’s income is below 300 percent of the federal poverty level, which, for example, is $61,950 a year for a family of four. You can determine your co-pay by entering your income in the participation table on nj.gov; monthly maximum payments range from $165 to $1,626 per month. This is the time to also contact your health insurance company. While many plans don’t cover therapies for developmental delays, you might get lucky.
Once your child is approved to receive services from Early Intervention (which involves evaluations that confirm developmental delays and the creation of an Individualized Family Service Plan [IFSP]), the state will offer therapies provided by qualified practitioners in natural environments, aka settings in which children without special needs ordinarily participate, or a place that’s comfortable and convenient for the family such as home, a community agency or childcare setting.
When Jonah was first diagnosed, the Early Intervention team felt he’d benefit from one hour per week of generalized therapy, which was intended to touch on his speech and both fine and gross motor delays. Now, let’s get real: One hour per week doesn’t cut it for a kid like mine, who at the time was non-verbal and had delays in just about every area. And that’s when you come to the next leg of your journey: finding appropriate therapists on your own.
In our case, we were the beneficiaries of my incredibly generous dad, who insisted on paying for private therapists (and remember, once your child turns 3, his or her care will move from Early Intervention to your local school district and services can be expanded; for Jonah, that still wasn’t enough).
Regardless of the age of your child with special needs, if you have the means to pay, either on your own or through insurance, you’ll face the same question we did: How do you find the best therapists?
TIPS TO FIND THE RIGHT FIT
Ask your pediatrician or other doctors who know your child for recommendations and speak with the Child Study Team from your local district once your child turns 3. If your kid has speech deficits, ask the speech pathologist in your school. If your child has gross motor delays, ask your school’s physical therapist. These specialists often know the best resources within your community.
Talk to other parents of special needs children, too: Sometimes, the best referrals come by word of mouth. If you don’t know other parents of children with disabilities (one of the hard parts of a diagnosis is a sense of isolation), Facebook is a great resource because there are many groups available to parents of children with specific disabilities. Whether it’s Down syndrome, cerebral palsy or speech apraxia (a disorder that interferes with planning the sequence of movements involved in producing speech), there’s an online support group for you, and maybe even a non-virtual one.
New Jersey has a plethora of private special needs schools (asah.org/asah-member-schools-alpha), and sometimes these schools offer therapies to non-enrolled students after school hours. That’s how we found our wonderful speech therapist, who worked with Jonah for four years once a week (by the way, after predictions from his first preschool teacher that he’d remain non-verbal, you can’t shut the kid up now.)
Don’t be afraid to try a therapist and see if he or she is a good fit for your child. Think of it as a kind of dating process. Example: The first speech therapist who worked with our son was clearly overwhelmed by his needs. We quickly moved on to our next prospect after confirming she’d been trained in therapies for apraxia.
How will you know if a therapist is right for your child? I found I could gauge a specialist’s ability to help Jonah if he or she demonstrated sincere affection for him, conviction that he could progress and a commitment to making that happen. I knew Jonah’s private occupational therapist was right for him when she came in for the second session, got on the floor and gave him a big hug, which he accepted—despite his tactile defensiveness.
That’s another way of saying that sometimes, the best therapists are the ones who fall in love with your child, who both literally and figuratively embrace them. I know that’s neither data-driven nor empirical, but sometimes you just have to trust your gut. After all, you are—and always will be—your child’s primary therapist. You’re the authority for what your child needs, whether it’s at a meeting with school staff, drafting an Individualized Education Plan (IEP) or deciding on the best school placement. And you’ll know—in my experience, pretty quickly—whether or not a therapist is capable of helping your child progress.
—Laura Waters writes about education politics and policy for a range of publications. She was a school board member in Lawrence Township for 12 years and served nine years as president.