Birthday parties, anticipated with great excitement by neuro-typical children, are something parents of autistic children often dread. Many autistic kids have sensory issues, which cause them to crash when they are over- or understimulated. Emma is affected by both, and it's impossible to predict what might trigger her. Crashing for Emma can mean zoning out or perseverating on some seemingly insignificant thing -- a missing photograph, a stick she picked up and by mistake dropped or a portion of packing tape no one knew she cared about that was inadvertently thrown away. These are the things that she uses to calm herself, and there's nothing like a party to trigger the desire for items used for self-soothing suddenly and without warning. In the past we have witnessed all of the above, as well as her wanting something she cannot sufficiently communicate to us in a way that we can understand, which leads to crying or, worse, a full meltdown. When in the latter mode, we must physically remove her from wherever we are and get her home as expeditiously as possible, something onlookers find baffling and frightening.
A few years ago Emma was invited to a little girl's birthday tea party, which took place in the Rose Club of the Plaza Hotel. When we arrived, red-velvet banquets and gold-gilded chairs with couples speaking in hushed tones made me inwardly groan. How was I going to keep Emma occupied? What if she was disruptive, unable to sit still? When the menu was delivered I barely went through the motions of opening it -- what was the point? I knew she wouldn't eat anything from the menu. I had the foresight to bring food I knew she'd eat and just hoped the service was quick, given that there were eight little girls with a variety of disabilities attending. My memory of that party is of running after Emma and trying my best to keep her from jumping on the beautifully upholstered furniture or sliding down the marble banister, Mary Poppins style, while avoiding the glares of the hotel staff.
The only other party to rival that one was when Emma turned 4. Given Emma's love of music, we hired a musician to come to our apartment. We invited a number of children from her special education preschool, as well as some neuro-typical children Emma and her older brother Nic had known since they were babies. Emma spent most of the party attempting to lie down inside the musician's guitar case as the other children danced, ran around or sat politely listening to the music and singing along when appropriate. My husband Richard and I took turns excusing ourselves, and each went separately into our bathroom, where we allowed ourselves a minute or two to cry, before mustering up the strength to return to our guests, doing our best to act as though everything were fine.
That was also the year we were called into a parent/teacher conference at her special education preschool only to be told that our daughter's development was a "red flag" and that she had "flat-lined." It was a tough year, one marked by desperation, sadness and a general feeling of impotence on our part. It seemed that whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.
Emma's most successful birthday parties have been when we've rented a gym, as we did a few months ago for her ninth birthday (we're learning), or when we've planned the party in some other equally active place. This past birthday, we rented a gym, and the following day we took her and Nic to Bounce U in Brooklyn, where she ran into a friend from her special education school and everyone had a blast. Bounce U is a kid's version of inflatable heaven. Everything in it is inflated and bouncy. So I was very happy to hear Pump It Up, a company that also owns Bounce U, is commemorating autism and autism awareness by providing families of autistic children with a day once a month when they can go and play. On April 7 they launched Sensory Jump Time, followed by a fundraiser for Autism Speaks.
Emma at Bounce U:
For more on Emma's journey through a childhood of autism, go to www.EmmasHopeBook.com.