I was going to post something entirely different this week, but felt the need to give another update on how we are doing during this tumultuous time. First, we had hurricane Sandy to overcome – then we had Halloween. Not an easy week for any kid, but much worse for kids like Quentin.
First – the storm. While most of New York City and its surrounding suburbs were hit hard with flooding, power outages and tree damage, we were miraculously spared. We never lost power once, nor did we experience any flooding. Our neighborhood got battered with branches and some scary tree damage, but for the most part, everything is intact. We are incredibly grateful. I watch the news in horror, and am trying to donate clothing and items wherever I can. I have a lot of personal connections to people who are stuck without power and who have experienced extensive flooding damage. I am finding it difficult to even find the time to write this because I am so distracted by the tragedies I hear of.
For us, I am most grateful that we never lost our cable or internet access. I know this sounds petty compared to what is going on out there, but truly I have no idea how Quentin and Fiona would have being cooped up inside without media and technology available. School (and all therapies) were cancelled for the week. I tried everything to distract my kids from days on end of no school. We baked, visited our upstairs neighbors, made furniture-and-blanket forts, and did about every art project imaginable. In the end, Quentin always returned to tech as his preference, and I wasn’t going to fight it. Time limits went out the window. One day off from school turned into another… and we eventually learned the whole week was off. While this might seem like a lot of fun for some kids, for children who are on the Autism Spectrum (like Quentin), this lack of structure made the week really difficult. He requested to go outside to various play spaces (with PECS pictures), became hyper or upset at uncertain times, and did not sleep well.
Then came Halloween. Yes, in the midst of all this Sandy-mess, there was that holiday to deal with. I find it ironic that a holiday meant to scare and spook children happened during a time when our reality is indeed already frightening. Witches, ghosts and mummies are tame in comparison. But, thankfully, my children are blissfully ignorant of the reality that Sandy brought to our region. I can explain things a little to Fiona, but she only understands that it was a bad storm. I am pretty sure that Quentin does not understand anything about this, and simply knows he has no school.
But back to Halloween. In the past, it has been a difficult holiday for Quentin. For the past two years he did not want to put on a costume at all. I tried to be creative about it: Last year we made due with opting for a cute raincoat that looked like a frog; the year before he was a train conductor in overalls and a train conductor hat. On top of that, trick-or-treating is a huge thing in my neighborhood, with a parade, crowded events, and people handing out treats at every stoop and every shop. All this “fun” is actually a big sensory overload for kids with autism or sensory processing disorder – strange things to look at, unfamiliar sounds, loud music, glowing lights. We have always avoided most of it, doing the bare-basics in trick-or-treating, gauging Quentin’s comfort as we went. Last year, Quentin lasted about 2 blocks. He cried and had a tantrum if he didn’t get to eat the candy right away. He did not know how to say “trick or treat” or “thank you.” It was hard.
Given our previous experiences, I think you can understand why I had some low expectations this year. Still, we felt it was important to try again, as we continually attempt to be a “normal” family. Fiona decided months ago that she would be Minnie Mouse. Done. Then came Quentin’s costume. This is the hard part, as he has no particular connection or attachment to any characters. I briefly thought it would be cute to buy him a matching Mickey Mouse costume, but given that there was a good chance he would refuse to wear it, I didn’t want to. Luckily, we do have a lot of costumes in our dress-up box to choose from. (This is thanks to the fact that his home-based ABA therapist requested them last year to work on self-dressing skills – which is, by the way, a great way to make this a fun activity.) I picked out Spider-Man, which included pants, a shirt, and a mask. I was skeptical, but I knew he had worn this one before, so it was worth a try.
Then I began looking for social stories about Halloween. I knew my child was not the only one who had difficulty understanding how trick-or-treating is done, and I didn’t have any good photos of past Halloweens to create my own social story. Surfing the web, I found two that I thought would work best for Quentin – one with photographs and one with Boardmaker PECS. I printed these out and pasted them onto construction paper. I waited until Halloween day to sit down with Quentin and read them. He sat very attentively, and got up from my lap with a little happy dance and lots of smiles. Yup, I’m pretty sure he remembered what Halloween was about at that point!
I was SO proud of Quentin when we told him it was time to go and it was time to put on his costume! He immediately started getting ready, and was excited to do so! Remarkably, he even wanted to wear the mask!
As we headed out to the streets, I was again worried that trick-or-treating would be too difficult for Quentin, given his latest obsession with logos. Recently, he has taken to running off, away from us, in order to point at logos in stores. Amazingly enough, however, he held an adult hand the entire time! He did say “What’s that” a lot in order to learn what certain logos were, but we let him ask and we answered him.
It always made me cringe a little when some fun-loving adult would pause before dropping a treat into his bag and ask, “What do you say…?” expectantly. This is not a terrible thing to do – certainly, before I had Quentin in my life I might have teased trick-or-treaters in a similar way. But this was Quentin, and he needed extra prompting. I would prompt him with the right words, and he would end up saying something like “-teet” and that would get the job done. Then I would prompt for a thank-you, and he would say “ooo.” The conspiring adult would smile at me, and we would move on.
So not only was Quentin willing to wear his costume, and not only was he behaving so well as we walked along, but he also made some verbal attempts at “trick-or-treat” and “thank you”! He didn’t cry to eat the candy immediately! We went a few blocks, and there was no melt-downs, so we went further. In the end, Quentin was able to go about 16 blocks – until his bag was getting heavy!
As we walked through the streets, I noticed about a dozen or so other boys dressed as Spider-Man. Amidst all this chaos, my boy looks ‘normal,’ I thought. He’s behaving just like any other five-year-old would (minus the impulse to have us name every logo he wanted to hear). I was so proud of him, and told him so over and over again. We got home safely and allowed the kids to indulge in their loot – the perfect reinforcer (in ABA-speak) to a job well done!
To prep for next year, I’ve already decided to make our own social story. I just learned that Kodak has a special offer for $5 photo books – A small price to pay for a nice social story and keepsake! (And no, Kodak did not pay me to post that… I truly think it’s a good deal!) Let’s just hope that for next year, the weather during Halloween isn’t so spooky.