Beth was re-reading it the other day and remarking how far we’ve come in just two and a half years. While some of the six things still apply, they did so in much different ways than before. Hence, I was instructed to write a revision. Here goes:
Six Things The Whitehouse Family Wishes You Knew
About Autism And Us
Our family’s rules and traditions are probably different than yours.
- Jake can sit with us through a whole meal these days. He still can’t stand the singing of “Happy Birthday” at anyone’s birthday, especially his own. Despite being 13, Jake doesn’t watch many PG-13 movies, because he’s got the mouth of a parrot, and scripts favorite or shocking scenes ad nauseam. This is bothersome at church. He needs to leave for school at EXACTLY the same time each day. If he arrives to school one minute past when he expected to get there, he gets mad. He still freaks if his food comes with garnish. He calls the parsley on his restaurant mac & cheese “fruit” and won’t touch the meal. We have to stick to familiar restaurants or quiz the waitress. We probably have more allowances for his behaviors and make more plans “just in case” he has behaviors than at your house.
- Jacob isn’t naughty, as much as he’s reactionary.
- This isn’t necessarily true anymore. He’s got a flair for the naughtiness in him, and frankly it’s refreshing to see. Every time he rolls his eyes, calls me by my first name, or behaves in a stereotypically teenage way, I secretly rejoice. Each step towards normalcy, whether good or bad, is a win. He is consciously making bad choices, and loves to get away with things. The way he looks over his shoulder to see if we noticed he was riding his bike without a helmet, or the way he darts past the living room doorway with a quart of ice cream under his arm – I love it. He even lied about a spring concert. He claimed he’d been told he didn’t need to participate, when in fact he needed to be there. It drives me crazy when he gets defiant and stomps his feet, gives me the “mad eyes” and glare, but it is still a sign of typical teenage behavior.
- It can be lonely being Jake’s parents.
- Yeah, this still counts. As he ages, many of the same problems that plagued him as a child continue to hang on. He still struggles with other people’s schedules, the rules in THEIR house, and people’s general misunderstanding of his behaviors, it’s still hard to go to parties, barbecues, etc. However, to be honest, we’re not real goers and joiners ourselves. Beth and I are both generally homebodies. I often wonder if this is a defense mechanism or if we’re using Jake as an excuse to stay in our jammies on the couch. On the other hand, the older and more self-reliant he becomes, the easier it is to secure a babysitter. It’s hard to find a sitter for a 9 year old who has potty training issues. He’s relatively low maintenance these days.
- Sometimes we seem stuck up in public.
- I don’t think this is the case anymore. Jake doesn’t venture out in public much without his iPad and Bluetooth headphones. He used to need sound reduction to stay calm, but now he’s content to hide within the videos he creates for himself. He loves to film himself playing video games, which he can watch and re-watch all the time on his iPad. If we run into someone in the produce section, it’s no big deal to stop and visit for a minute. His impulsivity is in check (mostly), and he doesn’t bolt as much.
- Dropping Jake off at school is a huge act of trust and faith on our parts.
- This is a different issue these days. I’m less worried about inappropriate touching than I once was, but I still worry about bullying. He’s eager to make friends and have people laugh. I worry he’ll do something embarrassing or dangerous, thinking he’s winning over the crowd, but in fact being the butt of the joke. This is why he still changes in a separate locker room, and doesn’t shower at school. It’s too easy for kids like Jake to be the recipients of bullying behavior. Frankly, I’m not sure he’d know the difference. As he earns more and more “freedom” from his staff, the potential for danger grows.
- It’s not always easy being Jake’s sibling.
- This continues to be true for us, but again in a different way. In 2013, Liv was embarrassed that Jake would show her affection. In 2016, it’s that Jake is showing her friends the affection. Jake is obsessed with girls, as are most 13 year old boys, but he’s not savvy enough to keep it to himself. He has claimed Liv’s friends as his harem. He has a thing for blondes with long hair. Go figure. When Liv was in elementary school, it was less socially mortifying to have a brother like Jake than it’s been in middle school. Liv even when so far as to prepare an informational presentation on Jake/Autism to present to the school. She’s spoken up at IEP meetings to voice her concerns over how people treat and react to Jacob. She’s both embarrassed and empowered by his disability. Gabriel, safely tucked away back in elementary school, is unfazed. Unfazed until his friends come over and struggle to incorporate the bigger/younger sibling, that is.