My husband and I welcomed our son into the world with the calm conviction of experienced parents. Jonah was our fourth child, and we were pros at child rearing, fluent in the language of raising typical children. Feeding schedule? Check. Separation anxiety? Toilet training? Check. Education? Check.

But Jonah isn’t typical. When he was 2 years old, he was diagnosed with Fragile X Syndrome, a genetic mutation that can lead to intellectual impairments, learning disabilities and autistic-like behavior, especially in boys. Suddenly, we were lost, desperately trying to master the vocabulary of a language that no parent I know would choose to learn.

But here we are. And maybe you are here, too. Parenting a typical child is hard work. Parenting a child with special needs is harder. The developmental bell curve is more divergent, the stakes seem higher, emotions run high and educational advocacy is more complex. But here’s the good news: You have more rights and more power than you think.

Birth to 3 Years Old

You may know your child is at risk of developmental disabilities before or soon after birth, like in cases of Down syndrome. Or, like me, you may not have a diagnosis until your child is a toddler or older. Confirmation, whenever it comes, can be painful and isolating, and it helps to talk with other parents who understand that even though you love your child with all your heart, you’re still grieving a significant loss. Acceptance is a long process—you’ll get there.

If you or your pediatrician suspect your child isn’t achieving normal developmental milestones, the first step is to call Early Intervention, part of the NJ Division of Family Health Services, at 888-653-4463. Your county office will assess your child and determine whether he or she is eligible for Early Intervention services. If so, you and your case manager will develop an Individualized Family Service Plan that addresses areas of delayed development. Services can include speech, physical, social and/or occupational therapies, and are free for children up to 3 years of age (although they may require you to file insurance claims). 

Jonah was slightly delayed with gross motor milestones—he first sat on his own at 7 months instead of 6 months, and didn’t walk until 16 months—but we were much more concerned about his lack of speech development. After ruling out a hearing impairment, we turned to Early Intervention, which provided speech and social therapies.

3 to 16 Years Old

The first step is to decode the acronym-ridden process that New Jersey uses to provide your child with a legally mandated “free appropriate public education” (FAPE) in the “least restrictive environment” (LRE) from birth to age 21.

The Early Intervention services your child will receive are typically determined in meetings between you and your county-appointed case manager. Once your child is 3, however, the responsibility for providing a FAPE in the LRE falls upon your local school district—and here things can become a little more tricky and a little less cozy. Suddenly, there are more people on the other side of the negotiating table when developing your child’s Individualized Education Plan (IEP), like school psychologists, behavioral therapists social workers and learning consultants. In the best-case scenario, IEP development is a true team effort and your input is the most important. In the worst-case scenario, this negotiation becomes adversarial. 

School districts are financially strapped and special education is often a primary cost driver. This, however, is not your problem. If your child requires certain services in order to have access to FAPE, then your district is required to provide those services, regardless of cost. If your child has hearing impairments, the district must provide necessary technology or sign-language translators. If your child has a mood disorder, the district must provide neuro-psychological assessments and appropriate program modifications. If your child has autism and requires intense supervision in order to participate in afterschool sports, the district must pay for a one-on-one aide.

Jonah has, among other challenges, slight hearing loss and not-so-slight ADHD. A teacher suggested that he would benefit from a personal FM system that amplifies teachers’ voices and cuts out background noise. We called a special IEP meeting (which you can do any time you want to modify learning plans), and the district agreed to supply an FM system. Ask and you may receive. Don’t ask and you probably won’t. 

Sometimes districts offer services that are easily available. For example, if you’re working with your Child Study Team (case manager, social worker, special education teacher and therapists) on your 3 year old’s IEP and your district already has a half-day preschool-handicapped program, the district may offer you their half-day preschool program. But if you have a child with an autism diagnosis and you successfully make the case that your child needs a full-day program of Applied Behavior Analysis, then your district must either provide that program or pay for your child to attend another public or private school that has that program.

In our case, Jonah was attending a county-run preschool that offered only limited speech services that were inadequate for his severe apraxia, a motor speech disorder. We successfully argued that Jonah needed speech therapy integrated into all aspects of the school day. Such a program was only available in a nearby private special education school, so the district agreed to pay tuition and transportation costs, per state regulations.

And here we return to that golden rule of raising a special needs child: If you don’t ask for it, you won’t get it. Moreover: If your district says “no,” you can fight for it. State and federal law mandates that you can request mediation, due process or complaint investigations. NJ’s Education Law Center has a great manual on your advocacy rights. The Statewide Parent Advocacy Network is another fine resource.

16 to 21 Years Old

State law requires that school districts provide “transition services” for special education students who are 16 to 21 years old, in order to improve your child’s chances of attending college and/or getting a job. Often these services can be provided by individual districts, private schools or community organizations, and may include vocational assessments, job sampling, internships, adult education, resume building and support for independent living. 

Jonah currently spends half his day at our local public high school (he returned to the district in seventh grade because we determined he was ready for a less restrictive environment and more integration with typical peers) and half his day with a community organization that offers job-sampling and vocational training. 

If your child has a mild disability and will attend college—perhaps at a school that welcomes students with learning differences—you may not need these services. But if, like us, your child has significant disabilities, there should be no difference between the last day of high school and the first day post-high school. Transition services are key.

All good parents advocate for their children. Special needs parents learn to advocate with a little more energy and backbone. Jonah, our funny, loving, smart boy, is worth it and more. So is your kid.

Laura Waters is an NJ school board member and author of the blog NJ Left Behind. The views expressed here are her own.

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