There has been much written and said about autism, but most of it has been aimed at helping people understand the mind of an affected child. I want to take this opportunity not to add to that already extensive list, but rather share the top six things we as parents want you to know about how autism effects us. Our family is from middle-Maine, USA. We have three kids: Gabriel is 7, Olivia is 9, and Jacob is 11. Jacob has autism. If you saw us at the mall, you may not realize we have a child with autism. It’s because it’s a non-obvious disability. There’s no cast, or wheelchair, or tell-tale brace. In our case, it’s just an eleven year old boy who sometimes acts “weird.” If you didn’t know any better, you may think he’s a bad kid and that we’re terrible parents with no control. This isn’t true on either count. We at bigcalfguy.com present to you –
Six Things The Whitehouse Family Wishes You Knew About Autism And Us.
Our family rules are our very own, and do not necessarily mirror yours.
Our son CANNOT sit still at the kitchen table for thirty minutes and eat a meal with usual dinnertime conversation. He simply cannot. He is allowed to graze. He’ll sit, take a few bites, wander off, and return. Repeat as needed until no longer hungry. Is this typical behavior? Nope. Would we fix it if we could? Of course; but we can’t. So, we adapt and move on. Sometimes, you need to pick your battles and sitting at the table for the entire meal isn’t a battle worth fighting. When we go to the store, my eleven year old needs to be the one pushing the cart – even if we’re just getting one thing. Needs the sense of control and safety that having a large metal cart between him and the public provides. Do we run into displays from time to time? Sure. Do we let it embarrass us anymore? Hardly.
Jacob isn’t naughty, as much as he’s reactive.
I’m not going to lie to you and tell you he’s perfect; or that he wouldn’t fight with his brother (who’s also his roommate); or leave his socks on the floor if he was neurotypical, but all in all he’s a good kid. His outbursts usually stem from fear or as a final culmination of symptoms. If he yells, “I’ve got to get out of here!” during the sermon, or won’t let us patiently wait in line at the store to pay for our items, it’s less often that he’s being purposefully disruptive, and more likely that he’s simply unable to take whatever external onslaught he’s been enduring and needs a break.
It’s can be lonely being Jacob’s parents.
This isn’t meant to be a pity party, but an educational session. We don’t get invited out much as a family. It’s hard to find a babysitter for all three of my kids (one with autism, and two “normal” kids). It’s sometimes easier to NOT go to your house and be part of the festivities, rather than watch Jacob feel uncomfortable, have nowhere familiar to hide, and get yelled “NO!” to all night. It’s not that we don’t want to see you, it’s just that we love him, too. And back to #1, if you come to our house for diner and he’s running around in his underwear, well, it’s his house. He gets to if he wants.
Sometimes we seem stuck up in public.
It’s hard to meet social expectation and stop and shoot the breeze with someone when you’ve got to devote so much attention and energy on your child. It’s kind of like having an 80 pound toddler. He’s very impulsive and unaware of his surroundings, but won’t fit in the little seat in the front of the shopping cart any more. Did I skip right past you instead of stopping to shoot the breeze? Please don’t take it personally. I was trying to keep Jacob from knocking over the specialty breads display near the deli. Please forgive me.
Dropping Jacob off at school (or anywhere else, for that matter) is a huge act of trust and faith on our parts.
For us, this is the scariest one. Our son is “verbalish.” He can usually make most of his needs known, but isn’t much of a conversationalist. Kids with autism, almost by definition, lack the ability to read the subtle, non-verbal cues most people pick up on when dealing with others. If someone gives you a dirty look, or speaks to you in a sarcastic tone, or uses euphemisms (Go jump in a lake), you get the gist. Jacob does not. I’d like to think that if someone touched you inappropriately, you’d stop them and alert the nearest authority figure. Jacob may not. I hope he will, and I further hope I never have to find out for sure. Kids with disabilities are shown to be the targets of bullying behavior and crimes at much higher rates than the general public. As a Dad, this scares the snot out of me.
It’s not always easy being Jacob’s sibling.
There’s great internal conflict I see in my two neurotypical kids. On the one hand, they passionately love their brother, and are very protective of him, but on the other, he’s the kid who answers the door in his underwear and cries in the grocery store. It can be very embarrassing when the kid who’s getting all the funny stares is your big brother. For example, Jacob came into Olivia’s class and kissed her in front of all her friends, who laughed. She loves her brother, and he’s allowed to kiss her if he wants, but she was embarrassed, and felt guilty that she felt embarrassed. Gabriel, in frustration at a very early age, stomped up the stairs shouting, “I wish I had non-tism!” He didn’t know why Jake “got away” with the things he did.
For more information on autism, and how we’re making our way in Maine, please watch this video that in part features our family. It was taken a few years back, but the information is sound:
Making our Way: Autism. http://video.mpbn.net/video/2164360748/
To listen in on an interview of Jacob, by his mother, visit youtube.com here: http://www.youtube.com/watch?v=Fh6KgaKvpSY
Linking to some of these great parties