When people learn I have two children with autism, one of two things happen. Either the person gets a blank look on their face and has no idea what to say, or the look is one of pity and the apologies start. I understand that people don’t know what to say, but the apologies are hard to take. Why in the world would you apologize to someone because of his/her children? It makes it seem like you believe that autism is a terrible tragedy.
Autism is not a terrible tragedy. We have a different life than families with only neurotypical children, but it isn’t a bad life. I have three amazing children and a son-in-law that every mom dreams of for their daughters. Every one of my kids brings a special love and talent to our family, and I can’t imagine anything else. It amazes me when people tell me I must be a strong person to handle two children with autism because they could never do it.
I don’t feel strong. I am just a mom who does the best I can for the children I love more than anything else in this world. It’s funny, because I look at other families who are running around constantly—always taking their kids here and there for activities and rarely having supper together—and I think, I could never do that. My kids and I have supper together every night. We get to relax in the evenings and just hang out together. I can’t imagine a life any different.
I never had to worry about three teenagers driving or paying for car insurance. Sure, I had other worries, but to me, the worries I had weren’t as difficult as those with typical teenagers. I am sure every family has issues that no one else realizes, and autism is just one of those. You can’t imagine my life unless you live it.
My daughter was four years old when she was officially diagnosed as having autism. I remember thinking autism wasn’t so bad—at least she wasn’t sick or in pain. Yes, I was extremely naïve. In just a few short years, the temper tantrums would start and the fear of any changes began. I would cry because I knew something was wrong—something was hurting my little girl, but I couldn’t help her. So she would scream and I would cry. Her little sister would try to help, but she was only a toddler. Some days felt like a week long.
Only a few weeks after Casey’s diagnosis, my son was born. I learned that if you have one child with autism, the chances are much greater that you will have another one. Since I couldn’t give back either younger sibling, it wasn’t something I really worried about. When Rob didn’t begin talking when I thought he should, I didn’t think much about it. My middle child talked for him all the time, and even our doctor thought that between his ear infections, his talkative sister, and the fact that he was a boy, there was no reason to worry.
Rob didn’t have the behaviors that Casey did that pointed to autism. He just had little interest in talking and no fears. I never knew where he would climb next. The day we had a new roof put on the house, he climbed the ladder and was sitting on the edge of the shingles. I had turned my back for a few seconds and there he was. Not thinking, I yelled “Get down!”…and he did. He jumped from the roof, landed in the pile of old shingles and rusty nails, did a perfect somersault, and took off running. He didn’t have a mark on him.
Casey needed structure and lots of it. She needed her routine, and it couldn’t change. When she started preschool, I learned to hate snow days. She couldn’t understand why there wasn’t school, and she screamed the entire day. Nothing I could do would calm her down. Around 3:00 p.m., the time she usually got home, she would stop and follow her usual after-school routine.
I remember a time that we were supposed to get a big snowstorm, so I decided to stop at the grocery store after picking her sister up from preschool. Casey was six at the time, and she hit the floor as soon as we walked in the door of the store. She wanted to be home to watch Barney. I couldn’t get her off the floor and hold my son, so Mandy, who was three, had to hold Rob’s hand (he was about 18 months) and carry my purse so I could get us out of the store. Casey screamed all the way home. I cried the whole way and swore she would never watch Barney again—how I hated that purple dinosaur that day!
Rob never worried much about routines when he was little. Now that he is an adult, he is more concerned with his schedule, but usually, I can say something is cancelled and he is fine with the change. If it is something he really wants to do, he will continue to ask—sometimes three to four times per minute—until he can adjust to the new plan. Thankfully, Casey has an obsession with calendars now and changes rarely bother her. I just write the new plans on her calendar and she giggles as she reads it. I never thought the word “cancel” would mean so much to my world!
I am always surprised by people who assume that since they are siblings, they must be just alike with their autism. My brother and I are similar, of course, but we are different, too. How many sets of siblings are exactly alike? Autism does not make them the same—it affects each of them differently, and their needs are different.
Casey loves to travel and to try new things, and she will eat almost anything once. Rob is a homebody, likes the same things, and is a picky eater. Both of them are sensitive to noises, but even the noises that bother them are not always the same. Changes in the barometer can send Rob’s anxiety levels sky-high, but this only sometimes bothers Casey. We swear by his ability to tell the weather—he knows when rain or snow is coming. The louder he is, the worse the storm will be.
The hardest part of having two children with autism is trying to satisfy their individual needs. It is hard to take Casey to all of the activities she wants to try when Rob hates to be in crowds and doesn’t want to try new things. I am lucky that Mandy, her husband, Cory, and my parents all help. My best friend will also take Casey places or stay with Rob so I can take her. Rob is also more willing to go places if Cory says it will be fun.
Both of them have sensory needs. Rob needs a lot of deep pressure to ease his anxiety, while Casey only needs it at times. She is more likely to get angry, while he is easy-going. She likes to get into things she knows she isn’t supposed to touch, while he will put something away if he isn’t supposed to have it and then ask for it. She talks more than he does, but his fine motor skills are much better than hers. They are both artists and love music.
Casey still loves Sesame Street and can be fascinated by preschool toys. Rob pays little attention to toys like that, but loves Dr Seuss books, LEGOs, and Power Rangers. They are like all siblings and pick at each other (and Mandy!) at times. They also look after each other when we go places. It’s a common sight to see them holding hands when we go for a walk or in stores. I love to see this, and it makes me so proud to see them leaning on each other when they need to.
Having two children with autism keeps life interesting. Our house is rarely quiet (and when it is, I go see what everyone is doing!), but we also laugh a lot. I have learned that laughing releases more stress than crying, and it’s so much more fun to do. I try not to let little things get to me and have discovered that most things are little things.
Sure, there are days when autism frustrates me, but I’ve also discovered that when I’m bothered by it, it is usually me being tired or stressed and has little to do with autism itself. The one thing I wish more people would do is look at Casey and Rob as young adults first and as someone with autism second. Autism doesn’t define them, and it doesn’t define our family.
Jen Jones is a preschool teacher, a freelance writer, and the very proud mom of three amazing young adults. Autism has been part of their lives for more than 25 years, and she wants to share the joys autism can bring to a family as well as let people know that, even during dark days, life will get easier.
This article was featured in Issue 58 – The Greatest Love of All: Family