Editor’s Note: For more information on special needs, see our articles “Special Needs Evaluation Centers & Advocacy Groups” and “Entering Kindergarten With Special Needs“
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 your family’s daily life in the Big Apple 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 and special needs. 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 (yai.org), an NYC agency 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.” New York City has some of the best programs to help children with developmental delays, and you have taken the most important first step in obtaining help for your child.
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 a diagnosis; 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. Make sure to find time for yourself—even if it’s only 10 minutes a day for a power nap or quick walk around the block. And, try to schedule some time alone with your partner and with your other children—it can be easy for them to feel neglected.
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, whether it’s for an hour of babysitting or some grocery shopping.
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, including details of all 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. Have extra copies on hand for caregivers.
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. For a beautiful but poignant look at many types of special needs, I recommend Andrew Solomon’s Far From the Tree. 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 or dental visits can be traumatic for children with sensory issues. Christina Reinwald ([email protected]), a former Cozy’s stylist, specializes in trimming the locks of children with special needs, and does home visits. And Dr. Jed Best on the upper West Side provides excellent dental care to even the toughest patients.
12. 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 (amctheatres.com/SFF) holds a monthly sensory-friendly film showing on the upper West Side; Music for Autism (musicforautism.org) hosts free, interactive, special needs-friendly concerts every other month. Plus, tons of museums now have programs specifically for children with autism or other special needs, including The Jewish Museum (jewishmuseum.org), The Guggenheim Museum (guggenheim.org), the Children’s Museum of the Arts (cmany.org), the New York Transit Museum (web.mta.info/mta/museum), and the Intrepid Museum (intrepidmuseum.org).
13. 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 (sensorycityot.com) in Long Island City and Extreme Kids & Crew (extremekidsnandcrew.org) in Brooklyn.
14. 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 (jccmanhattan.org) runs wonderful support groups for parents and events for the entire family, as does the 14th Street Y (14streety.org). The Child Mind Institute (childmind.org) 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.
15. 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.
16. 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.
17. Ignore the stares & glares: 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.
18. 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!
19. Let the experts help you: With a burgeoning population of children with special needs here in New York City, there are plenty of resources to help guide you—including special education lawyers and educational consultants. Feel free to contact me via SpecialKidsNYC.com if you need assistance.
20. Share the wealth: As you raise a child with special needs in New York City, you will glean all sorts of information yourself—above and beyond the tips mentioned above. Pay it forward and share your knowledge with other parents just starting this special journey.
JOANNA DREIFUS is a Manhattan mother of two and the founder of Special Kids NYC. She also serves on the boards of YAI’s New York League for Early Learning and the Manhattan Star Academy. She writes the blog MyMomShops.