New York City is an exhilarating place to raise a family, but I think most parents would agree that the city landscape can be stressful, too. What’s more, if your child has special needs, navigating the city can seem daunting and difficult. To help, here are 20 tips I’ve gleaned from my experience. I hope these bits of philosophical and practical advice will help as you embark on this journey with your family.
The Big Picture
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), 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, so don’t start fearing the worst.
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 and their lives become restricted. Try not to let this happen to you.
Details, Details…
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.” You can log many miles
taking your kid to and from therapies. 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
is a lot of misinformation online, particularly about more serious
conditions such as autism. Tempers flare and discussions get heated.
Watch what you say, and respect others’ opinions.
10. Read a book or two. One guide I highly recommend
for new special needs parents 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.”
Hidden Gems & Resources
11. Find the best resources for your family. Ordinary
activities like haircuts can be traumatic for children with sensory
issues. Christina at Cozy’s Cuts for Kids is a hero to many families;
she’s loving and patient and helps even the most terrified children
(mine included) tolerate their haircuts over time.
12. Another common trouble spot is dentist visits. We’re
trying out new dentists ourselves, and have heard wonderful things
about Jed Best DDS on the Upper West Side, and Lois Jackson DDS in the
Village and Brooklyn Heights.
13. Know your child’s limits. The city is full of great
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 are cropping up: AMC Theaters holds a monthly
Sensory-Friendly Film showing on the Upper West Side (see
amctheatres.com/ SFF for more info); Music for Autism
(musicforautism.org) hosts free, interactive, special needs-friendly
concerts every other month; and the Jewish Museum (jewishmuseum.org)
holds frequent art workshops for children with special needs.
14. Dive in. Many kids with special needs find water very soothing A few places around town that your child may enjoy: the Hall of Ocean Life at the American Museum
of Natural History (amnh.org), City Treehouse in Chelsea for indoor
water play (citytreehouse.com) and Greenacre Park, a small urban oasis
with a waterfall in East Midtown.
15. Reach out. Raising a child with special needs can feel isolating, and
it helps to meet other parents who are doing the same thing. The Jewish
Community Center (jccmanhattan.org) runs wonderful support groups for
parents and events for the entire family. Also, check out a new group
called SPARK (sparkonline.org) which holds “Moms’ Nights Out” for
special needs parents and offers online resources as well. Lastly,
UrbanBaby.com and YouBeMom.com both have helpful message boards for the
special needs community.
Handling Everyone Else
16. 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. On the other hand, if parenting a
child with special needs fuels the activist in you, advocacy and
awareness-raising is a great avenue into which to channel your energy.
17. Try to go “zen.” 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.
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.”
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. It’s okay if you
forget all of this advice, and it’s okay to have a meltdown. 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 children who have gone through New
York City’s Early Intervention program. She is on the board of YAI’s
New York League for Early Learning (yai.org/agencies/nyl/) and also
writes the blog MyMomShops (mymomshops.blogspot.com).
Photo: Joanna Dreifus with her children, Samuel, 4, and Rachel, 7. Photo by Andrew Schwartz.
