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 under stimulated. Emma has both and it’s impossible to predict what might trigger her. Crashing for Emma can mean perseverating on some seemingly insignificant thing – a missing photograph, a stick she picked up and by mistake dropped, a portion of packing tape, a magazine no one knew she cared about that was inadvertently thrown away. These are the things 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 we cannot understand and therefore cannot help her find, which leads to crying or worse, a full melt down. When in the later 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. Red velvet banquets and gold gilded chairs with couples speaking in hushed tones made me inwardly groan, when we arrived. 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 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 four. 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 of 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 few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.
That was also the year we had been called into a parent/teacher conference at her special education preschool only to be told our daughter’s development was a “red flag” and that she had “flat-lined”. It was a tough year. A year Richard and I still refer to when we feel doubtful of Emma’s current progress. That year marked a time of desperation, sadness and a general feeling of impotence on our part. It seemed 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 9th birthday (we’re learning) or when we’ve planned the party in some other equally active place. This past birthday, we rented a gym for her birthday party and the following day 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.
Emma at Bounce U
For more on Emma’s journey through a childhood of autism go to: www.EmmasHopeBook.com
I really enjoy reading your ‘blog, Ariane. My daughter with autism is two years older than Emma but so many of the experiences you share sound familiar.
If this brings you any comfort, my daughter was invited to a birthday party when she was 8. It was held at the home of a girl with whom my daughter attended Girl Scouts. Since it was a summer party, the theme was waterplay and the family had their backyard set up with all sorts of sprinklers, small pools, a Slip ‘n Slide and other water-based activities. The guests were encouraged to bring their swimsuits, towels, and a change of clothes. My daughter had a great time until it was time to dry off, change clothes, and have cake and ice cream in the house. As I was standing on the patio talking to some other parents, out of the corner of my eye I spotted my dear child stripping out of her swimsuit right there in front of God and everybody! I was mortified, and the other little girls and some of the parents who did not know our situation were equally stunned. I rushed over quickly to my bewildered child and threw a towel around her. She absolutely could not understand why taking off all of one’s clothes in front of an entire group of party guests was inappropriate. I hustled her into the house where she finished changing, but I have to tell you I had a hard time keeping my composure through the rest of the party. I wanted to cry. And I was angry at my child for having a complete lack of common sense. This last emotion made me feel so guilty because, as you know, it wasn’t her fault per se. Autism was the culprit once again. She’s still in Girl Scouts with this same girl but she’s never been invited back to either a play date or another birthday party. I try not to let this make me sad, but sometimes it does anyway.
I can picture all of this so easily, Marjorie. I cannot tell you how many times Emma has begun to disrobe in one of the very public playgrounds, here in New York City. The looks from other children, who are confused and the judgement from the adults who believe it must be our parenting, it must be something we’ve done to our child to make them this way, are devastating. So, so difficult and heart breaking. When I read at the end that she’s never been invited back I felt such sadness, but also anger. Would you mind if I quoted some of this letter on the blog? Of course I won’t if you prefer I don’t, and please know I would understand if you rather I didn’t. It’s such a poignant story and I don’t know anyone with an autistic child who wouldn’t be able to relate to it. So glad you reached out and shared this.