Autism: A Year in the Life of an Autism Mom

A selection of Kate Movius’s Facebook status updates

9/8/09: Aidan’s first day of school = debacle. Onwards.

9/14/09: is wobbly. up since 2am with aidan.

10/4/09: lost Aidan for 15 minutes at the zoo today. Security closed all the entrances/exits while a small army of men in dark blue uniforms biked the paths and perimeters in circles. But of course it was Hugh who found him – by the tapirs, jumping for joy.

10/15/09: Aidan’s teacher no longer has funds to buy ANYTHING. The classroom (all kids with autism) desperately needs (new or used): laminator, small fridge, digital camera, books books books! (1st – 3rd grade), educational vhs/dvd’s for same age group, books on CD or tape.

10/17/09: this morning i was awakened by aidan, who laid his cheek on mine and said, “i love you, kate.”

10/18/09: up between 1:30 & 4:00 a.m. with a happy, hyper aidan; cleaning up gleefully poured-out, freshly made coffee from my bedside table and all accoutrements at 8:30 a.m.; crying at the park behind my big black sunglasses at 11. and it’s only lunchtime.

10/24/09: after waking up every day this week at 3am, Aidan decided to get an early start to the week-end and greeted the day at 1am.

10/26/09: exactly 8 seconds after Aidan feel asleep at 5:30 am, James woke up and yelled, “MOMMY! I SAW THE SUNSET!”

10/28/09: supposed to fly east tomorrow but just found out that the airline never assigned us seats (i booked this in july WITH seats) and there are now none left, meaning our 4 year-old and severely autistic 9 year-old might have to sit by themselves, meaning trip canceled but won’t know ’til tomorrow at airport. never a dull moment.

11/23/09: is glad my son woke up happy but wishes the rapture could have arrived a little later than 2am.

12/3/09: a beautiful boy whose face fits perfectly in the nook of my neck, stroking my hair; another, smaller one in my lap making noises like an affectionate, rabid guinea pig. how could there be so much crazy love in one place?

12/6/09: how is compulsive Facebook-checking any different from joyous hand-flapping?

12/7/09: “For every problem, there is a solution which is simple, neat, and wrong.” ~ H. L. Mencken

12/10/09: 4am wake-up call makes mommy a dull boy.

12/19/09: endless, endless homemade pizza pies, olive oil-covered aidan, frothy egg nog, shrieking monster chasers, tissue paper wreckage, with a neatly trimmed tree rising up like venus from the waves.

1/22/10: i’m kicking myself for not taking the medicare option 6 years ago when aidan was diagnosed…

1/23/10: listening to Aidan’s in-home therapy session (which consists of lots of, “AIDAN! COME HERE! AIDAN! SIT DOWN!” trying not to go all WWE.

2/3/10: “The more boring a child is, the more the parents, when showing off the child, receive adulation for being good parents — because they have a tame child-creature in their house.” Frank Zappa

2/11/10: I’ve said it before and I’ll say it again (pun intended): SISYPHUS.

2/17/10: give me a cave and a pillow and don’t bother me for about 6 years.

3/3/10: the 4am wake-up time is getting really old.

3/6/10: a banner day, in spite of the rain: james was accepted at our first choice in schools for next year & aidan had his first ever successful and mutually giddy, rewarding playdate (thank you woody brown!!).

3/11/10: saw an incredible school for aidan today…beyond my wildest dreams! now we just have to get LAUSD to agree to send him there. ONWARDS.

3/16/10: playground + heat + yapping dogs + gawking stepford children and their nannies = autism meltdown apocalypse.

3/23/10: ~ here are a few ways the healthcare bill will vastly improve life for those of us who live with and love a child with autism:

3/29/10: in the midst of a hellish evening for aidan, he looks up and says for the first time, “i hurt. i felt.”

4/4/10: “We do not choose our children. Their qualities are unpredictable, and even the most conscientious parents cannot be held wholly responsible for the kind of child they have. That is why parenthood, more than other human relationships, teaches what theologian William F. May calls an ‘openness to the unbidden.'” ~ Michael J. Sandel

4/21/10: “When angry, count to four. When very angry, swear.” ~ Twain

4/22/10: lego is for masochists.

4/26/10: requests permission to lie down now.

4/27/10: Aidan’s first day of school. Hallelujah.

4/27/10: a slamdunk first day for Aidan. According to his new teacher: “He talked a LOT!” and, “He didn’t seem too happy when we were doing math, so I asked him to type what was wrong. He wrote, ‘I’M BORED.'” As the kids today say: O M G

4/28/10: Aidan ~ day 2, according to his teacher: “He was VERY verbal today. He made comments like, ‘I want to go to a friend’s house,’ ‘I want an ice cream sandwich,’ ‘mom comes at 2:30.'”

5/3/10: the first words out of aidan’s mouth this morning: “NEW SCHOOL.”

5/4/10: Aidan’s first day riding the school bus. Success!

5/16/10: “No one is as capable of gratitude as one who has emerged from the kingdom of night.” -Elie Wiesel

5/17/10: home with my sick aidan; reminded of how lovely it is to be with him, just the two of us.

5/20/10: note from school re. Aidan: “We worked on the iPad – Receptive and Expressive language. HE LOVED IT!” Pinch me, I think I must be dreaming.

5/25/10: is buying a skateboard for aidan today. advice?

6/8/10: is through for the day with the abundant defecation of others.

6/11/10: this fatigue, it’s exhausting.

6/17/10: Aidan’s response to my telling him to sit still at dinner: “May I please be excused”? (My jaw is still on the floor.)

6/27/10: just bought a trampoline. It had to be done.

6/30/10: today, it took several firefighters and the jaws of life to remove aidan, screaming, from the base of a fig tree, where he was wedged in tight as a tick. leg was fine, aidan fell sound asleep, and then the car died.

7/2/10: here is aidan with popsicle lips, in a post-firemen/jaws of life coma. my brave boy.

7/14/10: File under Autism Frat House Moments: 11:30pm: get into bed. 11:35pm: Aidan gets and stays up for 2 hours. 1:30am: James wets his bed. 7:30am: I wake up alone on a pile of towels in the bottom bunk.

7/23/10: Aidan had a late night last night, finally ?falling asleep at…oh, yeah: NEVER!!

7/23/10: Aidan’s going on his 40th hour of being awake and shows no signs of flagging. I, on the other hand, am beginning to resemble Bela Lugosi on a hot day in Reno.

7/24/10: Aidan is 10 today. And finally rested, too.

8/3/10: day 2 of james at home all day. utterly shattered. tomorrow, aidan joins us and it’s we three for 10 days. god help me.

8/4/10: this day began with ?the detestable experience of having to fire one of aidan’s therapists; ?since he feels everything with 100 x the intensity as the rest of us, ?aidan then proceeded to have an epic meltdown at in ‘n out, followed by ?repeated, hair-raising banister rides on our deck, which shredded his ?very last pair of shorts. your birthday posts, my friends, are balm for ?this shredded soul. thank you.

8/6/10: the bigger guy stole my laptop at 3am and began a party in the living room, while his accomplice passed out but continued to kick me repeatedly in the ribs until i finally escaped to the top bunk. just another night of domestic bliss.

8/10/10: Aidan’s new therapist looks like Taylor Swift. He’s very happy about this.

8/12/10: Today just for fun, I got up at 4:30 am, ate crackers and an entire pack of Trident gum and ran around in my underwear in the yard. Who am I??a.) Amy Winehouse?b.) Cookie Monster?c.) Aidan

Read Opening the Window, Kate Movius’s article about having an autistic son

Portrait by Mathieu Young