Birthdays can’t help but be emotional, reflective times. I mean, it’s like your own personal New Year’s Eve – reflecting on the past year’s accomplishments and forgotten goals. But ask a parent of a child that struggles, and you realize birthdays can truly be bittersweet. The struggle could be autism, allergies, asthma, ADHD, emotional or a host of physical issues… if your child struggles, you struggle. And birthdays do not give you (or your kid) a free pass from “struggle” for the day. In fact, they can highlight differences.
At my son’s 11th birthday party, for the first time ever, we invited typical children from his social skills group. We’ve had plenty of typical kids over to play and at his birthday parties, but these were the first peers that were not family or close friends. We also invited a group of kids from his out-of-district special needs school that focuses on communication disorders to the party. My son has been pulling together this party in his mind since last summer. He is really digging amusement parks, water parks and carnivals these days. (Can you see the theme already?) Recently, he has also had a renewed interest in Wii’s Sports Resort Games. Our backyard has a small basketball hoop, a homemade ping-pong table, a homemade golf hole and some bowling pins. Put it all together and you have an “Amusing Carnival of Sports Resorts Birthday Party”.
The other thing about birthdays when your child is struggling is this sense of loss. What are other 11 year olds doing for their birthday? I thought I would have recovered him completely by 11!, etc., etc. I can very clearly remember my beloved son’s 5th birthday as if it were yesterday.
Isn’t he utterly beautiful? He couldn’t feed himself birthday cake. He couldn’t open presents, which barely caught his attention anyway. He could not blow out his candle. He was not potty trained and normally could not move his own bowels. He could not speak. And do you know what words ran through my head that day, like a broken record? The words of his pediatrician. “If he is not speaking by 5, he likely will never speak.” Today, I laugh at the ignorance, insensitivity and audacity of those words. And on that dark day 6 years ago, I valiantly worked to put those words out of my mind. I tried valiantly to enjoy my family and friends that celebrated this joyful light in our lives. I tried valiantly to keep saying, “He is wrong. He is wrong. He is WRONG!” But it was one of the hardest days to fight back that encroaching darkness.
So on this 11th birthday, how was I feeling? Proud. Proud that my son picked the type of party he wanted, who he wanted to invite, what games he wanted to have and when he wanted the party to be. Those decisions paralyzed him last year and we had to plan everything for him. Worried. It was a damn rainy week and this day the weather didn’t look so good. Also, we were not sure how the party would be viewed by “typical” kids. I really am not very experienced with “those types” – LOL.
The first child to arrive was a lovely girl from Carson’s social skills playgroup. She is a wisp of a thing who, at 7 years of age, has a worry line between her eyebrows. Her mom dropped her off along with her bag of food, the towel upon which the food must lie and her Epi pen. I know that this child has life threatening food allergies and I can most certainly accommodate that, especially since this child is quite adept at handling her own needs.
Second to arrive at the party was my son’s play therapist. This angel has assisted us through many behavioral and social issues, and now she gets to work on the fun stuff… REAL play, REAL social interaction and relationship building. She is here to keep the birthday boy focused on his friends and not the balloons or whatever might catch his attention when things get a bit overwhelming.
Much later, one of Carson’s classmates from his special needs school arrived with her mom and brother. She loves Carson and will spend most of the party tracking his whereabouts. Again, fine. I am adept in most, if not all, circumstances. Her mom takes me aside to tell me that her son (a stunningly handsome boy of about 10) has developed Tourette’s and on top of his facial tics, he shouts obscenities. My heart is broken. I make a mental note to mention it to our play therapist and am promptly distracted by requests for me to man the Sno-Cone machine.
Then a cascade of situations occurred almost simultaneously…
The coals in the grill were not hot enough to cook the burgers. It started to rain. The typical kids thought it was a hoot. The ASD kids knew that it shouldn’t be happening and went inside to eat. (Eat what? You might ask. The burgers were now cooking on the stove). The play therapist (who I forgot to inform about the young man with Tourette’s) was in the house advising him to watch his language because this was a family party. I felt so stupid as I explained to her what was going on. My son’s lovely female classmate was continuing to attempt to locate him by asking “Where’s Carson?” every two seconds and then my beautiful guest with the life-threatening food allergies comes into the house to beg me to call her mom because she “is not feeling well”. She is trying to be cool, but you can hear the panic in her voice. “Yes. Yes, I will call your mother….um, do you know her number?” Duh – I’m so smart but I don’t get the anaphylaxis child’s mom’s cell phone number. But this tiny, responsible girl can tell me the number calmly and clearly. Of course she can. She’s done this before.
Recounting the party’s festivities the next day, Hubby and I shake our heads at the inevitable “calamities” that occur when you put so many kids together. But then I look at him and there are tears in his eyes. This man, with whom I have “energetically discussed” the real decline in U.S. children’s health vs the perceived decline in U.S. children’s health many times, said “You’re right, something is wrong. You would have never seen these health problems at a birthday party when we were kids.” Folks, the sickest kids at the party were the developmentally “typical” kids. Yes, the kids with ASD have their developmental and medical issues, but the most glaring illnesses of life threatening allergies and profanity-uttering Tourette’s were taking down the best and the brightest. These are the kids upon whose shoulders rest the bills for housing and caring for a generation of their peers lost to “autism”. 1 in 88 – and that doesn’t even include my 11-year-old son. His cohort has not even been counted yet.
So the friend who asked me to call her mom actually turned out to be fine. Perhaps a case of the nerves – who can blame her? Our beloved play therapist intervened with the kids and explained why a certain guest was “cussin’’ and things went much better. The rain stopped. Carson’s classmate found him. And the burgers finally cooked. Oh, and my smarty-moms hooked me up with some great medical resources for the mom dealing with Tourette’s.
But I’ll tell you one more thing that likely would not have happened when I was a kid. A kid who looks different, sounds different and plays different would likely not have had five of his typically developing peers come to his birthday party and have a good time. The parents wouldn’t have supported it. The kids would not have supported it. I am forever grateful for that change and to our special families in our community.
Best. Party. Evah!
So proud of you! I have never attempted a party that included anyone who was not family. Since he has never been invited I am paralyzed that no one would come! Happy Birthday to your beautiful boy.
Thank you all for the well wishes and for reading about our special day. Completely understand the birthday PTSD. I try to release it each year…but it even shows up at my NT daughter’s birthday sometimes.
I raise my glass and salute us all in our strength to face birthdays, and even get into the habit of celebrating them, each year!
Wow – what a stressful birthday party! … glad it all turned out well in the end! 🙂
I swear I have PTSD from my kids’ birthday parties. I know how you feel about using birthdays to gauge progress. For my son’s 3rd birthday, I refused to even get out the video camera or invite anyone. It was just too heartbreaking. This summer, he has already made his list of who is coming, what the party is going to be like, and what toys he wants for gifts. This story gives so much hope but also highlights just how bad the situation is with the health of our kids. We really are losing an entire generation. It is frightening.
Beautiful! I’m so glad your son had a good party. And yes, he is utterly beautiful.
Yes, the world she is a changing. Thanks, great story.