Many special needs families find it difficult to “fit into” their religious community–they may feel isolated at their church or synagogue because of their child’s needs and how the rest of the community reacts. Last week, The Jewish Week’s new blog about disabilities–“The New Normal”–published my essay Raised Reform, A Mom Finds Her Kids’ Disabilities Give The Lie To Labels. Here I write about how, as a single mother of two kids with special needs, my children and I found ourselves more welcomed by the Orthodox Jewish community than by the Reform community in which I was raised. The essay apparently struck a chord because it has been viewed several thousand times, and some people left very kind comments for me. Please read it and let me know what you think, and whether you have experienced anything similar yourself.
My kids and I went to Disney World last month. It was the first time we’d gone together (my kids had been once before) and I was a bit apprehensive about how smoothly things would go. Like other children with special needs, mine don’t always do well with crowds, overstimulation, and long lines (all of which are pretty much guaranteed at Disney). But I did a lot of research and “advance work” to make our trip easier and more enjoyable. It mostly paid off. Here are my top 5 tips for you to have a great Disney trip with your family, too:
1) Choose Your Travel Dates Carefully. Consult this chart of Best Weeks to Visit Disney World so you can see which weeks are most and least crowded. Not surprisingly, the worst times to go are during school vacations (spring break crowds, anyone?) We purposely chose late February/early March because it’s during the lull between President’s Week break and the beginning of various spring break times (I figured the advantage of an uncrowded Disney World made it worth it for my kids to miss two days of school–we went from a Thursday to a Sunday). Bonus: Hotel and airfare costs less during these weeks, too.
2) Get a Guest Assistance Card and Use It Whenever You Can. Get a note from your doctor detailing your child’s diagnosis (and explaining that, as a result, it is hard for your child to withstand crowds and wait in lines). Do this before your trip and bring the letter with you to a Guest Relations location inside the park (we went to the one just inside the turnstiles at Magic Kingdom). This card (shown below) will be your lifeline to a bunch of benefits that will make your trip easier–not only bypassing long lines for rides (ask each time because it can vary depending on ride/time of day), but also getting you faster seating/service at restaurants (it even helped us get Mickey himself to come over to our table during a particularly slow-moving character breakfast). Flash this card whenever you really need it–that is what it is for and you deserve it.
3) If You Can, Stay On-Site. Yes, it’s more expensive, but you may be able to offset some of that cost by traveling during a less popular week (see #1). If you can swing staying at one of the resorts right on the Monorail (The Polynesian, Grand Floridian, or Contemporary), it will be much easier to get to and from the parks quickly (for example, if your child needs to return to the hotel for a mid-day rest). Even if you stay at one of the non-monorail Disney on-site resorts, you will save yourself travel time and extra stress with overtired or overstimulated kiddos.
4) Use Help Around the Mouse. This is a fantastic Disney trip-planning service run by a woman named Judy Young. For a very reasonable fee, she will help you create a day-by-day itinerary based on which rides, attractions, and meals you want to do (she knows which are the best to visit at which time of day, and also which ones will let you use your Guest Assistance Card). Judy’s advice was indispensable to us–she will also alert you to late-breaking changes and news at the parks (for example, I was able to break the news to my daughter in advance that Splash Mountain was closed).
5) Remember, Vacations Come in All Shapes & Sizes. It’s OK to Think Small. If you are a parent of one or more children with special needs, you know that the term “vacation” can be a misnomer. It really is more a change of location which is extremely fun for the kids (hopefully for you, too), but also an awful lot of work. Some of our kids have such “routines” and restrictions that traveling to a new place–particularly a crowded and overwhelming one–feels anything but relaxing. Take joy in the small moments and don’t overschedule your time at Disney. You don’t need a full week there seeing every park and going on every ride. You know what my 6-year-old son enjoyed more than any other attraction during our four days at Disney? Pulling the Tiki water sprinkler on and off at the Polynesian Hotel. Or riding the elevators at the Grand Floridian. Let the fun happen naturally, on its own. Don’t be afraid to scale back and cross rides or attractions off of your list at the last minute. You don’t have to “see it all.” Because some of the best moments just may be those that you can’t schedule, like these:
Enjoy your trip!
Editor’s Note: In honor of World Autism Awareness Day tomorrow, I’m re-posting this essay I published at my other blog last year. Sure enough, as I speculated in this essay last year, the “1 in 88″ number has, sadly, already been revised to a higher incidence. I welcome your thoughts and comments below.
I’ve written various drafts of this post for months. And never hit “publish.” But when I heard today’s news that the CDC has revised its estimate of the prevalence of autism in the U.S. to a shocking 1 in 88 kids (and 1 in 48 boys), I felt I should speak up.
I can’t tell you in what ways autism (or autistic-like symptoms) has affected my family. But I have told you before at this blog (and on Twitter) that I have two children with special needs, and that I am also a single parent. In my spare time (ha!) I am a special needs advocate and serve on the board of a NYC non-profit serving people with developmental disabilities.
For many reasons, I can’t go into specifics about my own children’s special needs. You do know that my son (who is now age 5 1/2) has apraxia and sensory problems. He attends a wonderful school for children with learning disabilities, and is making good progress.
My daughter’s situation is more complicated, and her symptoms and diagnoses are more stigmatized than my son’s. She is now eight-and-a-half and for privacy reasons, I don’t divulge much information about her on this blog. There are also legal reasons for this, and if you’ve gone through a divorce you might imagine what they are. It is hard not to be able to share and seek the support of others. I can tell you this about my daughter–she is beautiful, bright, opinionated, funny, and destined for great things. I can also tell you that she suffers. A lot. And so does our family, as a result.
There is so much I wish could say about my experience of raising two children with special needs, particularly against the backdrop of a tough divorce. If I had a dime for every person who has told me, “Joanna, you must write a book….”, well, I’d be very rich. Sometimes it is strange to me that the reason I am known (mostly) in the blogging community is because I write this shopping blog. Because shopping (and blogging) are actually a very small part of my life, and any work I have done in any career (blogging and others) has simply paled in comparison to the most staggering, overwhelming, challenging, and unexpected role of my life–raising two children with significant special needs.
Back to the CDC’s news today. Soon after I heard the news, I spoke to a friend of mine whose child is significantly impaired by autism. “We knew it, right?” she said. She and I, and the legions of other women in this crazy “sisterhood” of parents of special needs children, just knew that the old figure of 1 in 110 kids having autism was just too rosy. We know because we “see” it everywhere. We are trained–our eyes, ears, and gut feelings can tell us when a child–not just ours–is “off.” Frankly, we even think that the newly revised number of 1 in 88 (and 1 in 48 boys) may not last long.
I thought about all of this this morning as the news kept getting re-tweeted on Twitter, and as I spent a brisk but beautiful spring morning with my 5-year-old son who is off from school this week. We visited one of our favorite NYC haunts, this little gem called Greenacre Park. We tossed pennies into the waterfall and made wishes. I took some pictures (sorry, I disobeyed a sign).
Then we stopped for his “lunch”–a soft pretzel. I’ve mentioned before he is an exceptionally picky eater. He is going to start feeding therapy soon. Another story for another time. There are so many other stories for other times…and, yes, I could fill a book. Actually, a series of books.
My son doesn’t have autism (as far as I know), but he has significant special needs, and more than several people have asked me if he is autistic. We get looks wherever we go…when they hear the odd cadence in his voice (caused by apraxia), stare when he melts down (because a sound is too loud or a smell is too strong for him). But this morning he was happily eating his pretzel, and at 11am a nearby church sounded some beautiful bells.
“Hey! I hear that noise!” he laughed. I laughed too. For a moment, I thought, “Well, who cares?” More and more children are being diagnosed with special needs. And life doesn’t end…it goes on, for all of us. We take these moments that we can with our children–special needs or not–and make the best of them. We hear bells and music and we laugh.
Then about a minute later, my son burst into tears, and covered his ears, and cried, “The bells are too loud.” Back home we went. Moment over.
I have enough little anecdotes like these every day to fill an entire blog–several, actually. Some moments are mundane, some are extremely poignant. Like when a pediatrician told me my child may not walk, or a speech therapist told me my other child may not speak. Like when a doctor told me, “I don’t know what else to do for her.” Like when people have made fun of both of my children. Like when I received a devastating diagnosis about my child, and two moments later had to be in court for my divorce. Most of all, the moments when one of my children has cried to me, “Help me get better.”
But, my hands are tied from writing more about those moments. Instead I write a shopping blog (don’t get me wrong. I love writing MyMomShops and it has kept me sane for the past 5 years).
I’ll admit I get jealous or even angry when I read other blogs where a mom complains that she is a “single parent” for a week while her husband travels on business, or that her child is “difficult” because he or she wakes up at (gasp!) 6:30am, or that she has a child who is “occasionally” moody.
At the same time, I am extremely lucky that I was raised to be an optimistic, grateful person. I am eternally looking at the glass as “half-full.” I am blessed with loving friends and family that help me with my children in every possible way, including getting them the help and therapies they need. My children are physically healthy. And, four and a half years after my marriage ended, I am in a wonderful relationship now with a man who is 100% supportive both of me and of my children exactly the way we are.
Maybe some of you will pay very little attention to today’s “1 in 88″ news. That’s OK. I just want to ask you this. If your children are typically developing and have no developmental disorders, please take a moment after you read this post to be grateful. Think of how tough “regular” parenting is for you. Then think about how much harder it is for those of us who parent 1 or more children with developmental disabilities, and/or do it on our own without a spouse. Please think before you judge children on the street who seem out of control, poorly behaved, or spoiled. Think about what those children–and their parents–might be going through.
Unfortunately, as today’s news indicates, parenting is about to get tougher and tougher for many of us.
Thanks for reading this, and I welcome your thoughts and comments.
In the days after the tragedy, I noticed a trend in what we were hearing about (or, rather, what we were not hearing about). I wrote this essay called “Why We Struggle to Honor Autistic Newtown Victims” and was honored that it was published at the Sisterhood blog at The Forward. Please do take a moment to read it and tell me what you think–I welcome your feedback.
Wishing you and your families a happy, healthy, and peaceful holiday and New Year.
I love the story behind Fun & Function. It was launched back in 2005 by pediatric occupational therapist Aviva Weiss and her husband, in response to their realization that there was a lack of high quality but affordable toys and products for kids with special needs (something they further realized upon discovering that one of their own children had sensory processing disorder). I am impressed that they launched this company in 2005, because even though it doesn’t seem like many years ago, I personally remember that there were far fewer shopping options for kids with special needs back then. In general, there was a lack of awareness that certain toys worked “better” for certain kids and could help them gain skills in important developmental areas.
Today, Fun & Function offers innovative products that build skills and self-esteem in children with special needs including autism, speech/communication delays, sensory disorders, and other challenges. The selection here is excellent and has been featured everywhere from Parenting Magazine to WNBC TV. And to help with your shopping, you can shop by skill that you want to develop–for example, fine motor skills or social skills.
And now for the “Peanut Ball.” My kids and I got one to try out, and we’ll also be giving one away to a Special Kids NYC reader. I’ll let my 9-year-old daughter (who is sensory-seeking, while her 6-year-old brother is tactile-defensive), tell you about the wonders of the “Peanut Ball”:
Today we are giving a peanut ball away! What is it you ask? It is the new fun physical toy for kids. As a child myself I have many things to say about the peanut ball. First of all it has a special shape to roll and sit on it. Your child will be bouncing on it all day. Besides it is great exercise. Also it is great for their imagination. For example you can pretend it is a bunny or a pirate ship. So enter our contest to win a free peanut ball!
My kids are having a great time with this toy, which is designed to help with balance and posture. Interestingly, I find it entertains and soothes both of them at the end of a long day of school and therapies, even though they have opposite sensory issues. It is a great addition to our home (especially since no one blinks at seeing toys like these in our living room…) and I’m very impressed with it.
Win it! One Special Kids NYC readers will win a Peanut Ball ($39.99 value, colors may vary) from Fun & Function. Note: You’ll need a pump to inflate it–this is not included.
Here are the contest rules:
1) Simply leave a comment on THIS post (click on “comments” below) telling me why your child(ren) would love using the Peanut Ball.
2) You may leave up to TWO separate entries- 1 entry with a comment as described in #1, and 1 entry indicating that you follow Special Kids NYC on Twitter (@SpecialKidsNYC).
3) You MUST also include a valid e-mail address so I can contact you if you’re a winner.
4) Post your entry by 11:59pm EST, Thursday, December 5th. Maximum 2 entries per person (as described above), please. US addresses only.
5) One winner will be chosen at random and will be contacted by email on Friday morning, December 6th to claim their prize.
6) If any prize is NOT claimed within 48 hours, the next random winner will be contacted.
Many children with milder special needs do very well in inclusion preschools, where the classes are composed of both typically developing children and children with special needs. These preschool programs appeal to parents because 1) the staff is trained to support the needs of children with some developmental delays and 2) typically developing children provide behavioral “modeling” for the children with special needs.
One such program is a small, Upper West Side preschool called Play Together NYC. The school is for children ages 2-4 and offers half-day preschool instruction in a developmentally appropriate setting. It also offers rolling admissions, so there are no ISAAGY deadlines to worry about.
I saw this commercial twice on TV yesterday. Have you seen it yet? It’s for Mass Mutual and it’s about a mother’s day taking care of her son with special needs. I find it very moving (especially the very accurate parts where she struggles to wash his hair and brush his teeth). I don’t know what kind of track record Mass Mutual has with reimbursements for medical/therapy expenses for special needs, but hopefully it is better than the companies I’ve dealt with for years (Aetna and Cigna). Let me know what you think of this commercial.