American writer Jessamyn West stated, “A taste for irony has kept more hearts from breaking than a sense of humor for it takes irony to appreciate the joke which is on oneself.” Some days it is only recognizing the irony of living with autism that keeps us from hunting down a really large rock to crawl under. Autism is never funny, but when you live with it day in and day out recognizing, appreciating, and even laughing at the irony is about the best coping mechanism we’ve found.
Caden, like many children with autism, also has a sensory processing disorder. In a nutshell, his perceptions and senses get mixed up a lot. He hears, sees, feels, tastes, and smells everything quite differently. So he has had difficulty with baths for awhile now. We have tried baths, showers, special showe heads, different temperatures of water, an array of toys to make the experience more fun but although he has no problem stepping into the bath tub he absolutely can’t stand for the water to get on him. Bath tub plus water equals a meltdown but……..water coming from the sprinkler outside or pouring down rain isn’t a problem. So we need to either figure out how to wash and rinse in the back yard without our neighbors flipping out or we need to figure out how to add an indoor water park to our house----guess which option our daughter is hoping for?
We have worked really hard to teaching Caden how to count and when he got the hang of it, his understanding of numbers just kind of exploded. We were thrilled when he could count to ten, and then 20, and then 50, and then 100 and then 1000 and then….oh did I mention repetitive behaviors are also a huge part of Caden’s autism? We decided we would enjoy his counting no matter how many times an hour he decided to count. We were equally thrilled when he started pointing out numbers everywhere we went—he could not only count but also recognize numbers! This was a breakthrough of epic proportions. But then there was the day when he discovered house numbers and became mad at the world because the numbers weren’t in order. 403 wasn’t right, it should have been 034 and no amount of explanation would comfort him. Leaving our house became a meltdown because not even our own house number was “right.” This is where the irony of it all comes in. You have to appreciate the meltdown….the tears and dismay…..because he recognized the numbers weren’t in order. To dismiss that recognition would be to dismiss a huge accomplishment; at 4 our baby can count by 1s, 2s, 5s, 10s, and even 20s to 1000, he can recognize numbers, and he understands order. But the world doesn’t exactly come with that kind of order, does it? See we are right back to the irony of it all.
Then there’s the feeding aversion. From birth Caden could tell the difference between powdered formula and premixed liquid formula, fruits and vegetables aren’t his friend, he won’t go near anything sticky, and he’d prefer brown foods. He loves bread, waffles, pancakes, bagels, rolls, or pasta. One well meaning occupational therapist thought hiding food was a good idea; he went on a 2 week eating strike. A pediatrician tried sending him to an eating disorders clinic—he was 3, was primarily nonverbal and they wrote him a referral to a talk therapist----seriously? We recently met with a nutritionist for suggestions---after we pointed out he is allergic to soy, carrots, and most vitamin supplements that we have tried, can’t drink milk products, that we are vegetarian, and that he won’t drink anything that was originally powdered, she wished us luck as she walked us at the door. The poor woman gave us her card but you could see the fear in her eyes----she is terrified that we’ll call to make a follow-up appointment. Recently though Caden has added a new favorite to his diet and there’s color like you read about in all the magazines: orange and red to be exact! No doubt very, very early in the morning I’m sure that Caden will be asking for a cheese slice with ketchup on a hotdog bun for breakfast. And the IRONY continues…..