Wednesday, April 2, 2014

Our Family Has Autism

It's that time of the year again folks: World Autism Awareness Day! If you missed my blogs from the past two years, they're required reading before you continue any further. Just kidding, but I will link them here: and here:

Today I want to write about Pippa. Writing about my neurotypical child probably seems an odd choice for World Autism Awareness Day, but here's the thing: autistic children don't grow up in a vacuum. Rylan has autism, so our family has autism. Since Pippa was born I've become increasingly interested in the intricacies of sibling relationships in families that include an autistic child. How are they different from neurotypical sibling relationships? How are they the same? How do the differences impact our parenting? What will Boog and Peej's relationship be like when they grow up? Will I ever stop asking questions long enough to learn some answers?

I did a little informal poll of my Facebook friends with autistic children yesterday and got some very useful stuff, a lot of which sounded very familiar, so that gave me the courage to dive right into this complicated topic. As I see it, parenting NT kids and autistic kids together breaks down into the good and the...tricky. I'ma start with the tricky, just so I can finish up with the good, because the good is very good and we shouldn't forget about the good. Good? Good.

The Tricky:

Discipline. Whoa boy. Having a neurotypical child after our autistic child has opened up a whole other can of worms discipline-wise. I imagine it's tricky if your autistic child comes after a NT sibling or two as well, but this is my experience. I was used to parenting an autistic child, and a particularly chill autistic child at that, so I began parenting Pippa as an autistic child. It did not go well.

Rylan dislikes time-out so much (which involves sitting on a stool in the corner of the kitchen with his hands held down so he can't stim until the timer goes off) that all I have to do is say, "RyRy no (insert undesired activity here) or you'll get time-out" and he instantly stops most of the time. However, there are also a lot of things I let slide with Ry because I know he simply isn't capable yet of say, staying completely quiet in a movie theater or staying at the dinner table without frequent prompting and occasional (gentle of course) physical restraint.

Pippa requires a different approach. Pippa laughs in the face (often literally) at the threat of time-out, so we must be prepared to follow through. I've given her time-out in grocery stores, on street corners, and most recently, in an airplane (though if you ask me the whole airplane experience is one long, expensive time-out for all of us). She also is expected to do things that Rylan is not. She must feed and dress herself (with a little help sometimes), brush her own teeth (again, with a little help), pick up all of her toys, say "please" and "thank you" and listen to others when they're talking. If she fails to do some of these things, she is punished. With Rylan, we, and a team of specialists, are working very, very hard to get him to do all of these things. We drill them every. single. day. But we don't punish him for failing to say "please" when he's never successfully said or signed it by himself. That would be insane and pointless, like punishing Pippa for not washing her own breakfast dishes yet or occasionally wetting the bed.

These are the facts about disciplining my kids and I'm comfortable with them...until I start thinking about "fairness" and what others might think. What do the other moms at the park think if I scold Pippa for not waiting her turn on the slide, but don't reprimand Rylan for failing to say "goodbye" to a friend? What does Pippa think when she sits in time-out for throwing food on the floor and acting a fool at dinner and watches us spoon-feed her older brother while he shakes his head and flaps his arms?

My friends noted similar problems with discipline. Angel, who has 3 boys, the oldest of whom is on the spectrum said, of the discipline conundrum, "It's hard, they aren't the same kind of kid so you can't parent or discipline them the same way. And that's sometimes hard to remember." Another friend, whose blog I'm just going to link here because it's simply too fantastic and I want to quote the whole darn thing ( ) related an incident in which she wasn't sure if she should discipline her autistic child and, since it happened in front of others, not only was she worrying about whether her son's actions were intentional, whether to discipline him, and what would be the appropriate consequences if so, she was also worrying about what the other parents were thinking about her.

See? Tricky.

The fairness issue also comes up when we plan our family financial and time budgets. When we began ABA here in South Carolina, Ry was going 25 hours a week after school. That meant we had every day from 11:15-5:45 booked. It also meant co-pays that reached roughly what Dylan used to make as a graduate student. This is the minimum level of treatment recommended for autistic children, but ultimately it just wasn't sustainable for our family. It meant no playdates for Pippa, no extracurricular activities, and, well, less money to spend on anything related to Pippa. Rylan needs ABA, but I don't just have Rylan. I also have Pippa. I have to think about her educational, emotional and physical needs, too. We ended up dropping to 15 hours a week and while there is a flame of guilt slowly burning a hole in the bottom of my stomach when I think of those lost 10 hours, it has replaced the larger flame related to sacrificing Pippa's welfare for Ry's.

Worries. There are a lot of things we worry about in regards to Pippa. Does she feel rejected when she tries to play with her brother and he ignores her? Will she have trouble relating to other neurotypical children because her only sibling is autistic and non-verbal? I actually put her in preschool because of this particular worry. I'd noticed that when she met other children, she would plant herself right in front of their faces and stare at them expectantly. This is what Rylan does when he wants to get someone's attention, but it's not as effective or welcome to other children as a simple, "Hi!" which Pippa is capable of delivering.

And of course, there's the ultimate worry: what happens when we're gone? What have we saddled our little girl with? We don't know what Rylan will achieve. He may live on his own and hold down a job and have a relationship and need only the kind of loving support most siblings provide each other, or he may never communicate in a language we can understand, never write or learn to use a computer, and need someone to closely supervise his every daily need. If we cannot save enough money to facilitate this...if we both die suddenly and unexpectedly at a young age...if public services are not available...if he falls through the cracks in every way...will Pippa be there to catch him? What will that do to her life, her happiness, her relationships? What will happen to both of them if she doesn't step up?

Tricky doesn't seem sufficient to cover this...

There is a beautiful side to the autistic-neurotypical sibling relationship, though. For one thing, our neurotypical children are learning to become the most empathetic, understanding little souls you'll ever meet. They are used to dealing with different. Different is their normal. So, they're not afraid of it when they meet it out in the world at large and they don't judge it and they counsel others not to be afraid or judge, either. My friend Shannon has an autistic daughter Rylan's age and an older neurotypical son. She says her son makes sure to include his sister whenever he plays with others and he sticks up for her when others are picking on her, "It's been a great way for him to learn that not everyone is the same and that's not always a bad thing."

I have a dear friend who has two daughters. The older is autistic and Rylan's age and the younger is neurotypical and a bit younger than Pippa. Her older daughter is verbal but often not able to express what she wants or needs. My friend says her younger daughter has started to anticipate her sister's needs. For example, she'll lead my friend to the kitchen and ask for a cookie and then ask for another one for her sister (and actually take it to her, which is crazy impressive for a 2 yr. old, Peej would probably just pocket the second one). Another time, her older daughter was upset about trying on some clothes, and after a long time they finally figured out she wanted some privacy. Her sister led her into another room and handed her the clothing so she could change in private. This kid is 2. It is absolutely nutty what our 2 year olds can learn from having a sibling with special needs and trouble communicating.

When Rylan does something naughty and I scold him, he gets a slightly panicked look on his face. Pippa observed this the other night and said, "Mommy, RyRy says he's sorry." He smiled. She was right.

The other beautiful thing about the autistic-neurotypical sibling relationship is that no matter the obstacles, no matter the differences in abilities and interests, they always find each other. Angel says, of her boys, "If they have nothing else in common, they will always come together to play video games." I have noticed the same ability in my kiddos to find the common ground. They will watch "Frozen" together and they both love the songs. Pippa belts it out with Idina Menzel while Ry sits quietly smiling and making intricate shapes with his hands, but they are enjoying it together. They like to be in the same room together even if they are playing with separate things. Pippa follows Ry from room to room and if they get separated, Ry whines and grunts until someone comes and finds him.

I have said before that I am grateful for the experience of parenting Rylan, but I am equally grateful for the experience of parenting him and Pippa together with Dylan. I am grateful for this family with autism. All four of us are working hard to learn each other's languages, to respect each other's needs and to be kind to one another. If we have mutual understanding, respect and kindness then I think we'll manage all that tricky stuff just fine.

We may, however, never manage to get another picture of the two of them at the same time. So I'm relishing this shot from last Halloween.