Friday, June 3, 2011

Autism and the Unattended Wedding Ceremony

My nephew got married last weekend to a wonderful, sweet girl. I am so glad we were able to travel to be with our family and celebrate this event.

I just wish we could have attended the wedding together as a family.

I spent weeks preparing for this trip. I made 5 lists. Shopped for food, the wedding present, outfits and shoes for the kids and myself. Cooked meatloaf, a chicken, and a bunch of veggies and froze small portions in baggies. Lilli is on the Specific Carbohydrate Diet, so I had to take everything for her to eat, including snacks. I took Lilli's ipad, her dvd player and all her favorite movies, a few favorite toys, and more than enough outfits.

Looking back, I did an excellent job preparing for the trip in every way except one. I did not prepare Lilli mentally. One major oversight that might have prevented her major meltdown. Perhaps if I had talked to her about it, somehow prepared her mentally in some way, it could have helped her understand what was happening and calmed her a little. I will never know.

Chloe is 4 and she asks a million questions. Thank goodness, because hopefully in all that constant dialogue, she asks a few questions that Lilli is wondering about herself but cannot verbalize. I think this in the car often as Chloe chatters away, that Lilli is listening to her. (Or maybe she is trying to block her out!) Chloe asked so many questions during the ceremony that it made me realize how very new this whole experience was to all of my kids. We have never been to a wedding together. There I sat in the back row with Chloe and Josh, and Chloe asked one after another. "Why do they have rings? Why did they say 'I do?' What are they going to DO?" It makes me wonder what Lilli wanted to know.

Prior to the ceremony, we ran around the hotel room and got everyone dressed in a frenzy. I quickly put Lilli in a beautiful pink and white dress with a dark pink satin sash, and pink shoes with frilly socks. We decided to push her in her chair which is like a stroller/portable wheelchair for kids with special needs. Sometimes it helps take away stress from walking long distances and navigating unfamiliar ground which makes Lilli nervous, and tires her out quickly. By the time we all walked from the hotel room to the other side of the building outside to the patio, she was upset. The patio was where they had set up for the ceremony, and conveniently happened to have a fountain. Lilli loves fountains. My husband parked her in front of it, and that's when she started to lose it. We don't know why. The heat? Bugs? Too many people? Certainly not the soft music playing in the background. I checked to see if the dress was itchy. It was lined with satin and the tag seemed ok.

The violins had only been playing for a short while, and people were filling up the seats when Jasen said, "I'm taking her out." So he missed the whole ceremony. The last I heard of them was her wailing as he pushed her around the corner to go back inside. As the wedding party walked down the aisle I was torn inside with mixed emotions of joy for the happy couple, and frustration that my husband was missing it because of Lilli's disruptive sobbing.

After the ceremony we tried to take turns. He brought her back to the cocktail hour and she wailed again. We took her back to the room and let her watch a Veggie Tales movie. She was happy. Then we tried to bring her back to the reception. I tried walking her. Maybe the stroller was making her mad. She collapsed in a heap at the door to the ballroom, with her hands over her ears. The music was too loud for her. We quickly took her outside to where the photographer wanted to take a huge family picture. Jasen held her in the back and she sobbed as he lined everyone up. As soon as the picture was over he whisked her back to the hotel room, where she again was happy.

I know the event is now in the past, but I wondered what other parents have done for this situation. I Googled to see if I could find ideas for other parents who want to take their child with autism to a wedding or other huge family gathering. It took me awhile but I stumbled upon a term I had not heard of, which I hope will help Lilli a great deal.

What I SHOULD have done, had I known, was Google "social stories." Here is one mom who wrote a social story to prepare her daughters for a wedding:

Other social story websites I checked out: - designed by a young girl who has two brothers with autism. There are quite a few great social stories on there. Some of the links did not work, which was disappointing, but I liked the ones I checked out. My favorite was "Can I Sniff Your Hair?" which is so appropriate for many kiddos with autism, my goodness. Has stories you can print out on topics such as emotions, school, and behavior

There are many more. If a parent is interested in finding one I suggest you Google "social story ______________" and fill in the blank with the subject you need a story about. There is even a social story book you can buy, but I have not checked it out yet.

I wish I had known. But now I do, and I'm off to tear through stacks of paper and ink cartridges, making social story books for Lilli. I'll let you know how it goes.


By the way, Josh and Chloe had a blast at the reception. Thank you to my family members, who helped us out in so many ways.