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How to Be a Parent Advocate for Your Child With Special Needs

The mom of a special needs child shares five lessons learned while caring for her 10-year-old son and navigating the system.
 

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My son is one of a kind — literally. He has an unnamed syndrome so rare, only a handful of similar cases exist. He was born with 150 or so extra genes on his fifteenth chromosome. Sometimes, I like to imagine that this gives him superpowers. But nothing is further from the truth. He works very hard to accomplish what most kids do easily. And even though the doctors told us he’d be delayed, it hurts to watch him struggle. At age 10, he is still learning to talk.

Getting a diagnosis so young — when he was six months old — put him on the fast-track for early intervention services and then, ultimately, special education in the public school system. That’s what we, as parents of a child with special needs, hope for. But challenges have come up along the way. Other diagnoses followed, his needs have grown, and we’ve butted heads with the school district over his services. And even though he wasn’t talking, our health insurance stopped covering speech therapy after age 3 — a decision that I appealed successfully.

For all its joys, being a parent can be inherently stressful. And parenting a child with special needs — be it a learning disability, autism, a seizure disorder or a physical disability — has unique challenges all its own that requires extra time and resources. Ten years in, and I am still learning. But I know much more than when I started, and my efforts have paid off: My son has gone from working on sounds and syllables to knowing how to say hundreds of words. And he continues to learn and grow in ways I didn’t think possible. Trust me — your child will surprise you too. Here are some tips to help you on your journey.

1. Other parents are your best resource. Parenting a child with special needs can be very isolating at first. It can feel overwhelming. But there is help. Join a support group, seek out a local special-education PTA, attend events organized for children with sensory issues, or cognitive or physical disabilities. Children’s museums, aquariums, trampoline parks, and other facilities popular with families often set aside visiting hours or playtime for children with special needs. Inevitably, you’ll find a special-needs community with shared experiences and concerns — no matter the diagnosis. Other parents will be facing similar challenges. And some will know about local organizations, state agencies, or educational rights you aren’t aware of. Want support or advice without all the face time? Look to social media; search Facebook for special needs groups. In my state of Connecticut, for example, there’s a group for families and caregivers where you can ask about specific doctors and therapists, request recommendations, or just vent after a bad day.

2. There is no silver bullet. Probably. While some parents have seen such benefits as changed behaviors and improved attention span with certain diets or supplements, others haven’t. Remember this as you navigate through the various treatments and therapies available to special needs families. What works for one child, even one with the same condition or learning disability, might not help another. It can be very tempting to try this “quick fix” or that “sure thing.” You want to explore every possibility. But it can also be very draining physically and emotionally for you — and your child — as well as financially. Before undertaking anything, ask yourself: Will it realistically help my child’s specific needs? Is it backed by research or other convincing evidence? I don’t say this to undermine the success of some; it’s vital to stay open-minded and hopeful, and to continue to do your research.

3. Don’t take 'no' for an answer. If you find yourself up against a hefty bill for ongoing treatment or therapy for your child needs, but health insurance won’t cover it, appeal the decision. Draw from expert evaluations, ask your pediatrician for help, and tap into your parent network. Sometimes it comes down to diagnostic coding; in most cases, though, an evidence-based argument will be your best bet. You may even need to appeal more than once. I know it sounds daunting, but once you do it, you’ll be glad you did. 

4. You are your child’s biggest advocate. Once your child enters public school, you will need to educate yourself in (at least the basics of) special education law. Ideally, parents and schools work together to address a child’s learning needs and create an Individualized Education Plan (IEP). Congress originally enacted the Individuals with Disabilities Education Act (IDEA) in 1975 to ensure that children with disabilities receive a free and appropriate public education (FAPE). Seems simple enough. But the interpretation of FAPE differs by school district and throughout the country, and even at the state level. The process can be confusing (at best) and contentious (at worst). I can’t say it enough: You are your child’s biggest advocate. Earn it. Look into workshops through local organizations or at wrightslaw.com.

5. Love your child. Obvious, right? In fact, it’s the only prescription the geneticist at Yale could offer after testing showed that my son had an extremely rare syndrome. And it’s my script for you. Your child is not his disability. Remind yourself of this on those days that your child fails a test or gets sent home with a bad report, or experiences a meltdown in the middle of the grocery store. It’s OK not to love the difficult behavior, the fight over homework or grades, or even the numerous therapy and doctor appointments. But that’s not your child.

For more information on this topic, read Resources for Supporting Your Child Living With Learning Challenges.

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