Living with children with autism is a never-ending learning experience. The therapy that worked today may not work tomorrow and the shirt that could easily be worn tomorrow might be one that couldn’t even be touched last week. Parents are constantly on their toes for surprising new behaviors and we are always learning new things. Here are the top thirteen things I’ve learned over the last 30 years as an autism mom.
- How to take out a toilet. Seriously, this is probably the one I’m most proud of. Rob used to have a fascination with what floats and what just makes a large splash. And since he knew he wasn’t supposed to play in the toilet, he would flush whatever he dropped so he wouldn’t get caught. I can take out a toilet, remove the offending object (often match box cars) and reinstall the toilet in 15 minutes or so. The only thing that ever stumped me was a plastic shot glass. I was ready to permanently remove the toilet and insist they use a five gallon bucket over that one.
- How to find the softest shirts in the store. Rob’s severe sensory issues and refusal to wear shirts with sleeves or ones that he deems are not soft enough has caused me to return a LOT of clothes. No amount of washing can make a shirt soft enough for him, so we only purchase the softest ones we can find and cut the sleeves out of every single one. I’m in the process of discovering a way to use the short sleeves cut from shirts.
- How to control a terrible temper. When I was young, I had a temper. I’m sure my parents doubted I would ever learn to control it, but I did. I needed every single bit of patience I had some days when both kids were having rough days – and I have a typical daughter, too. I learned that getting angry really wasn’t worth the effort most days. But, I also learned that when people realize I could blow up easily, I tend to get their attention fairly quickly – and if people see me crying in anger, they scatter.
- Laughing really is the best medicine. And honestly, most things are funny, if not at the time, then a little later. I’ll admit – I still have a few days that are not funny and never will be. They are days that I thought I would never laugh again. But, I made it and so will every other autism parent that thinks today is the worst. Red Koolaid slowing running down my freshly painted dining room walls is funnier than heck now. At the time, I was ready to blow a gasket. And that day inspired the name of my blog.
- Cinnamon and pepper never leave your sweeper. Yes, it’s true. You can change the bags many times. You can clean the guts of the sweeper. You can use it over and over to sweep up carpet freshener, but you will always smell pepper and cinnamon until you get fed up and throw the sweeper away. Also – green, blue and yellow food coloring has to wear off your children and it looks like they have healing bruises for weeks after painting themselves with it. I never did find the red color. Another thing I learned from this day – children with autism, when coached by a typical sibling – can climb drawers and cupboards like monkeys and enjoy every minute of it.
- The same brand of pretzel in different shapes tastes different. It’s true. The little midget pretzels are acceptable only in certain brands, while the long rods in those same brands must never be touched. Likewise, the long rods of another brand are delicious, while the little sticks can never be eaten. Also – the pretzels that can be eaten at home usually cannot be eaten at any other house. Cherry tomatoes are wonderful snacks, but sliced tomatoes are yucky. Chicken nuggets and French fries are acceptable meals at any place, at any time, but pizza can only be frozen, from a box. Waffles should not be heated up, nor have any syrup.
- All Sesame Street characters, the Power Rangers and the Wizard of Oz are real people. And if you use them the right way, those characters can teach a child (or adult who is still obsessed with them) almost anything. For years, Rob used lines from the Wizard of Oz, Lion King and Willie Wonka (the original) to communicate his needs. I am so thankful that most movies are readily available now because when he was little, it was really difficult to find some of them and he wore them out quickly. I’ve used silly voices (I’m especially good at Elmo, Cookie Monster, Grover and Ernie) to coach my daughter. I can use stuffed toys to help her communicate when she is getting upset. Autism parents do what we have to do to avoid screaming meltdowns.
- How to be nice – until it’s time to not be nice. I first heard this line from Patrick Swayze’s character in the movie “Roadhouse.” It fits an autism parents’ life to a T! When you have to deal with doctors, therapists, teachers, insurance companies, hospitals, other staff and your children, sometimes, you get fed up. It’s hard to always be nice to people as our parents taught us to be. I always tried to be nice, but when people decided they could make decisions for my kids based on charts and not the kids themselves, I learned to be not nice. I learned to stand up for what they needed and not back down when people with degrees thought they knew everything. They are incredibly smart (usually) but they don’t know what’s best for my kids. I know my kids better than anyone! So I’m nice to everyone – until it’s time to not be nice. Then, watch out, people.
- How to speak up for us. I was a shy kid. I didn’t like being the first person to speak unless I knew the crowd very well. Standing in the background was easier for me and I was quiet in crowds. Speaking in front of a class was terrifying and likely to make me sick to my stomach. After autism, I have been invited to speak at many meetings to share autism awareness and the stories of our family circus. I enjoy doing these presentations because I know every time I reach one person with awareness, that person will reach another. I also learned to speak in IEP meetings. After all, I knew my kids the best and I knew what we needed. Anyone who has been to IEP meetings, or any type of meeting about your child, knows how uncomfortable they can be, especially for the parents. I learned to listen objectively and to think before I responded to get the kids what they needed. It wasn’t easy, but my shyness is officially gone.
- It’s ok to ask for help. I know most people know this, but this is still a hard one for me. I hate, and I mean, hate, asking for help with anything. I am always told how strong I am and to admit that I need help just drives me crazy. But, slowly, over the years, I’ve learned that everyone needs help at times and that the strongest people know when to ask. I have had a few emotional crying meltdowns because I kept quiet about things and didn’t ask for someone to watch the kids so I could sleep. It’s still not my favorite thing to do, but I do ask when I need help – whether it’s watching the kids or just someone to talk to.
- Sleep is the most precious thing. Go ahead and laugh, but if you have ever had to go without sleep for weeks or months on end, you will understand this. For many, many years, Rob couldn’t go to sleep at night and when he finally did crash, he was up and down several times each night. I was lucky – he didn’t try to leave the house or destroy anything. He just got a snack and lay on his bed, singing. And by singing, I mean, squealing, laughing and shouting odd phrases until he could fall asleep again. And on those rare nights that he actually went to sleep, Casey would be up singing, dancing and folding socks. I am so thankful that I finally found the right combination to help him go to sleep and stay asleep most nights. I am a new person with sleep. Without it, I am a grouchy, crying emotional wreck.
- Socks are amazing and wonderful. Casey’s obsession with socks has been going on for almost 20 years with no signs of stopping. She easily has 250-300 pairs of socks and is always looking for more. She has every color, holiday and animal you can think of, I think. To be honest, I don’t really look at them much. She can spend hours in front of her dresser or on the floor folding and refolding socks while she listens to music. It is one of her coping techniques. It’s also a great way to find kind people in the world. Everyone who meets my daughter finds out her love for socks – usually because she is pulling up their pant leg to see what their socks look like. Yes – even to complete strangers. While this is usually met with a smile after I explain why she is doing it, at other times, it isn’t a pleasant experience. I still hope the man who screamed at her in a craft store many years ago remembers us. I sent the kids to the van with their sister and then I had a rather loud, possibly cuss-word filled discussion with him. When it was over, the manager told him to leave and the crowd clapped for me.
- It is possible to hear the same word/phrase/sound for hours and eventually not notice it. Rob gets fixated on phrases that he uses to help calm his anxiety. When I sold our van last summer, after having it for 13 years, he said “Get the van.” And said it and said it. For the first few weeks, it was pretty much constant. We drove to a park near our house (a five to six minute drive) and he said it more than 50 times. I heard it every single time that night, but eventually, I only heard it when he was right in my face or yelling it at the top of his lungs. It took him almost 6 months to stop saying it a lot. That phrase still pops out every once in a while. He has several phrases that he repeats over and over when his anxiety is running high.
Any situation can be a learning experience, if you are willing to think outside the box and laugh a lot. Parenting is funny but when you had autism to the mix, life really gets interesting! Now – what cool things has autism taught you?
