New York City is an exhilarating place to raise a family, but I think most parents would agree that it can be stressful, too. What’s more, if your child has special needs, navigating the metropolis can seem especially daunting and difficult. To help, here are 20 tips I’ve gleaned from my experience as a mother of two children who experienced developmental delays. I hope these bits of philosophical and practical advice will help as you embark on this journey with your family.
1. First things first: If you suspect that your infant or child may have developmental delays, don’t be shy about broaching the subject with your pediatrician. Another great resource is YAI Network, which can help you schedule an evaluation or find referrals for services your child may need.
2. Take a deep breath. If your child does have delays and requires services such as speech, physical, or occupational therapy, repeat to yourself, “It will be okay”—even if you don’t believe it. New York City has some of the best programs to help children with developmental delays.
3. Remember that your child is more than a diagnosis and don’t obsess over labels. You may hear an alphabet of terms, from ADHD to PDD-NOS to SPD. Your child is still the same person he or she was the day before; nothing has changed the essence of who your child is.
4. You are more than your child’s diagnosis, too. If your child’s delays or special needs require many therapies, it’s easy to let these take over your own life. Carve out time for yourself—even if it’s only 10 minutes a day. And, of course, remember to make time for the rest of your family.
5. Accept help. It takes a village to raise any child, and it may take a large and experienced village to raise yours. Accept offers of help from grandparents, friends, and neighbors. Some moms of special needs children panic about leaving their child with anyone else, so their lives become very restricted.
6. Get organized. You’ll have a lot of information to keep track of, including your child’s evaluations, reports, and insurance claims. Start with a big loose-leaf binder and jot down everything, even records and details of phone calls.
7. Minimize the “schlep factor.” Try to schedule appointments at convenient times and locations, taking your child’s nap times and other routines into consideration. Write out a weekly schedule and keep therapists’ phone numbers and addresses handy.
8. Respect your child’s therapists. As busy as you are, they are even busier, so respect their time and give ample notice if you need to cancel. Remember to show appreciation for how much these professionals are helping your child. Year after year, therapists tell me how much they appreciate parents who appreciate their work.
9. Do your online research, but be careful. There’s a lot of misinformation online, particularly about more serious conditions such as autism. Tempers flare and discussions get heated. Be conscious of what you say to others and respect others’ opinions.
10. Read a book or two. One guide I highly recommend is The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs. And for a good laugh on even the toughest days, read Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.
11. Find the best resources for your family. Ordinary activities like haircuts can be traumatic for children with sensory issues. Christina Reinwald ([email protected]), a former Cozy’s stylist, is a hero to many families; she’s loving and patient and helps even the most terrified tots, mine included, tolerate haircuts over time.
12. Another common trouble spot is dental visits. We’ve found an excellent special needs dentist, Dr. Jed Best, who has years of experience treating children with all kinds of special needs.
13. Know your child’s limits. The city is full of exciting activities for kids, but sometimes crowded, loud events aren’t the best for children with special needs. The good news is that more special needs-friendly events crop up in the city all the time: AMC Theaters holds a monthly sensory-friendly film showing on the Upper West Side; Music for Autism hosts free, interactive, special needs-friendly concerts every other month. Plus, tons of museums now cater to children with special needs. The Jewish Museum holds frequent art workshops, the Brooklyn Children’s Museum boasts a new Sensory Room for exploration or relaxation, and the Children’s Museum of the Arts hosts a monthly Stripes program for children with autism.
14. Jump in. Over the past couple of years, several new play spaces in the city have opened that cater both to children with special needs as well as typically developing children. Some of our favorites are Sensory City in Long Island City, Space #1 in Clinton Hill, and Gigi’s Playhouse in Manhattan.
15. Dive in. Many kids with special needs find water soothing. A few places around town that your child may enjoy: the Hall of Ocean Life at the American Museum of Natural History; City Treehouse in Chelsea for indoor water play; and Greenacre Park, a small urban oasis with a waterfall in Midtown East.
16. Reach out. Raising a child with special needs can feel isolating, and it helps to meet other parents who are doing the same. The JCC in Manhattan runs wonderful support groups for parents and events for the entire family. The Child Mind Institute offers free workshops on everything from ADHD to OCD to pharmacological management of kids’ mental health disorders. And UrbanBaby.com and YouBeMom.com both have helpful message boards for the special needs community.
17. Decide what you’ll share. Not everyone needs to know every physical, psychological, and neurological detail about your child. If you feel like sharing, a simple “my child has some delays” suffices. Keep the specific details to yourself and friends and family, especially as your child gets older and privacy becomes more important to him or her.
18. Brace yourself for unsolicited advice: “My friend’s cousin’s nephew had a speech delay and drank fish oil all day long—have you tried that?” Simply smile and say, “Thanks, I’ll look into that.” There’s a lot of chatter among NYC parents about everything from infant development to preschool admissions. These comments can be unintentionally hurtful, so try to take them with a grain of salt and remember that most parents don’t understand what you’re going through and don’t mean to offend you.
19. Give people a break. Let’s say that your child has a temper tantrum on the bus. Of course, all children do this, but a child with special needs may be “triggered” more easily or often. People stare, roll their eyes, and make comments. Again, they don’t get it; they haven’t walked in your shoes. Try to be the bigger person and ignore it.
20. Remember to give yourself a break, too. Parenting is the toughest job in the world, and parenting a child with special needs is even tougher. The highs are higher, and the lows are lower. Have faith in your child and in yourself. You are your child’s best resource!
Joanna Dreifus is a Manhattan mother of two and the founder of Special Kids NYC. She also writes the blog MyMomShops.
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