A Day in the Life of an Autism Parent
Last week, after realizing how many misconceptions there are about what I do all day, I shared what a typical day as a radio DJ is like.
I figure there are misconceptions about what a LOT of people do all day.
I asked one local mom to share her story.
Eileen lives in Wall Township, a stay-at-home mom to 8-year-old George, who has autism. (She tells me she prefers to refer to him as her son with autism, not her autistic son, as autism does not solely define him. I love that.)
These are her words:
"I know being a parent means getting a lot of unsolicited advice or comments. It seems though, for me, being a mom to a son with autism, I get a WHOLE lot more, but that's autism for ya.
True story, that's been said to me. Along with:
'He looks so normal.' (Yeah, the way we part his hair covers the horns pretty well...)
'You just have to be a tougher parent.' (Oh my goodness! Thank you for telling me! I had no idea!!)
'He's just shy.' (If I just smile and nod my head will you go away?)
'Have you read Jenny McCarthy's book? She cured her kid.' (Yes, I often make medical choices based on what playboy bunnies do.)
'My brother-in-law's boss's wife's nephew is autistic!' (Um, that's nice. Way to prove your autism street cred! *fist bump*)
Questions about autism don't bother me. They are much better than ignorant statements based on stereotypes. It shows a person is open to learning more.
So if you want to know something, just ask. Yes, I do use a lot of flippant, sarcastic replies as my defense, but when you have multiple people remarking in shock about 'how normal' your kid looks, it's safer for them then slapping them.
Now that THAT'S out of the way, here's a little about my day, to keep it real.
Waking Up (4-6 a.m.)
I haven't had an alarm clock in 8 years. I don't need one -- I have George.
Sometimes he's up at 6 a.m. Sometimes it's earlier. (Like evil early. With a dash of awful. Have I mentioned my devotion to my coffeemaker?)
4 a.m. aka 'dark-thirty' wake-ups happen here a lot. This is also where I am immediately informed of some activity he is very much looking forward to that isn't happening for 10 hours. Oy!
Breakfast (7-ish a.m.)
After George walks his beloved fur brother Ronan with my husband, it's time for breakfast.
This, or any meal really, is a battle of wills.
For a kid that would be content to live on a diet consisting solely of french fries, slipping this kid his vitamins, supplements and meds is a bit tricky. But it's gotta get done.
I know what you are thinking. Why isn't he on a gluten-free, casein-free, soy-free, red dye number 3-free, vegan macrobiotic diet?
Well, not all kids on the spectrum are. (And it doesn't do squat for him. Just our luck.)
One thing I have learned, if you meet one kid with autism, well, you've only met one kid with autism. All of them are different.
School (7:50 a.m.)
It's a mad dash of lunch-making, back pack-filling, the toothbrush tango, ('Where are your shoes, here's a Croc and a sneaker -- Good enough!' GET ON THE BUS!)
But then it's time for George's daily excuse of why he can't go to school.
For a kid that craves order and routine, this is the one part of him that is very much 8 years old.
George's daily excuses of why he can't go to school have a cult-like following with my friends and family on Facebook.
'Turn off school. No Monday, it's Saturday. Turn on weekend. Put away school.'
Oh, and my all time favorite: He can't go to school 'because he's a penguin.' (Yep, that one made me snort into my coffee when I first heard it.)
Being an autism mom, I see teachable moments in this. It's conversation skills! His speech therapists would be proud.
While he's at school, I take a snow shovel to his toys, weeping, knowing they will only return to the same spot later. I do some errands, listen to 'The Point' (of course!), do laundry, clean, food shop, etc.
Waiting Room Time (3:45 p.m.)
Every day after school is a different activity. After school, George hops into Mom's taxi and it's off to speech, occupational therapy, swimming, music therapy, or his bowling league.
I consider this my 'me time.'
I get to catch up on e-mails with his teachers and other therapists, write out shopping lists, tweak his schedule, and catch up on current events (like who's on the cover of People this week.)
What I like the most about 'waiting room time' is talking to the other moms in the trenches with me, waiting for their kids too. We laugh, share stories, moan...tears have even been shed now and then. We get it. We know.
Dinner (6 p.m.)
Dinner is whatever I remembered to put in a crock pot that morning. Or something I cooked at 10 in the morning to reheat.
And then there are those nights of calling the husband and begging him to grab a pizza. (George prefers those nights, as he loves pizza.)
Like breakfast, feeding him dinner is more like a cocktail hour, with nibbles here and there.
I pick my battles -- cleaning his plate isn't one of them. I'm more focused on getting him to remember to use full sentences and express appropriately his needs.
Bedtime (8 p.m.)
Oh, bedtime. This is around the time my husband and I have eaten something from the crock pot and are in pajamas ourselves.
'Oh, you want to watch Mr. Popper's Penguins for the 236th time? Sure.' We've seen it more than Jim Carrey has by now and will be quoting it to the staff at the nursing home some day.
That's okay. If it winds him down, so be it.
10 p.m. (or earlier)
Once he's down, well, the rest of the day is not too exciting. Sometimes I'm right behind him, going to bed soon after 8. Other days, my husband and I will watch TV or something from Netflix until one of us admits defeat and goes to bed ourselves.
...because that 60-pound alarm clock is going to land on us to remind us that bowling is at 5 o'clock before we know it."
Eileen told me that writing this was cathartic...I just thought it would be nice to see life from her perspective. Thanks for sharing, Eileen!
----- UPDATE -----
Eileen has told me that since sharing this, and seeing such a great response from people in the community, she's been inspired to start up her own blog. Read it here: Autism with a side of fries.
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