What It’s Like …
What It’s Like … to Have Three Daughters with Autism
It’s a job she wouldn’t trade for the biggest book deal in America!
If you think motherhood is hard, try mothering three amazing girls who are on the autism spectrum. Betty is extremely honored and humbled to share what it’s like to be Kim Stagliano, who is not only an amazing mother to her three daughters, but who’s also the managing editor of AgeofAutism.com. Kim is a regular contributor to the Huffington Post, and she’s someone who I wish lived right next door to me, because if she did, I’d guarantee we’d get into loads of fun trouble together.
Her agent is currently shopping her novel, which is the story of an aunt who suddenly becomes the caretaker of her niece and nephew with autism and faces a steep learning curve, which is based on many of Kim’s own autism learning experiences with her girls. Her memoir is also being considered for publication. On her blog, kimstagliano.blogspot.com, Kim describes herself as “ping-ponging between writing funny, poignant stuff and cleaning dirty, smelly stuff.”
What is it like to have three daughters with autism?
It’s heartbreaking, terrifying, mind-boggling and has had the improbable effect of being fortifying for our family, which seems strange, I know.
You’re an amazing mother! How old are your girls, and what are their names?
Mia is 13, Gianna is 12 and Bella is 8.
At what ages did you realize all three were affected by autism?
Hmm … it’s funny how your mind turns off some of the scarier parts of life. With Mia it became apparent to us after Gianna was born. Mia was 19 months old, and she ignored the new baby. It was like she didn’t realize Gianna existed. Most little girls would want to play mommy with a new brother or sister. Mia literally walked over Gianna on the floor. I learned VERY fast to keep Gigi in her swing or in a playpen.
What is your daily routine like?
Oh, you know, the usual mom day. Wake at 10 a.m., sip coffee for an hour while reading the Times … Sorry, wake up, Kim! Well, the girls are early risers. We’re usually awake by 5:00 or 5:30 a.m. On school days I’m in the kitchen by 5:45 a.m., preparing three gluten-free, casein-free (GFCF) lunches (the girls are on the “autism diet,” which means no wheat or milk at all) and then three GFCF breakfasts. I also log straight on to my computer to moderate overnight comments for AgeofAutism.com and to check my autism sites and my blog while the girls are eating. Then I help Mia and Gianna get dressed, brush their teeth and hair, and get ready for the school bus, which arrives at 7 a.m.. Bella gets on the bus at 8. Then it’s back to my computer for another comment check. Clean up the breakfast mess. Then I try to take a walk/run/walk. I have a great route – a monster hill about 1.9 miles. I run down and plod back up (gravity – ugh!). The rest of the day is spent cleaning – I love my Dyson! – and writing – for Age of Autism, my Kim blog, Huffington Post and whatever fiction or nonfiction I’m working on at the time. I also spend a ridiculous amount of time reading e-mail, dilly-dallying on favorite blogs and sites, and often have to yank myself away from the computer. The kids get home mid-afternoon, and then it’s homework, getting dinner ready, bath-time and my favorite time of the day … BEDTIME!
Tell us more about your writing endeavors.
Just call me “the Accidental Writer.” I sat down a couple of years ago and this story just started to appear on my computer screen. I wrote a novel with an autism theme and realized I missed being creative, and I really loved writing. I’m rather opinionated – and one day I sent a submission to the Huffington Post, and lo and behold, they ran it! My first published piece. And I was HOOKED. I started the agent search and now work with a terrific agent in New York. Hoping to sell in 2009. I’m glad I was naive when I started writing – it’s so hard to crack into the field!
You have an amazing philosophy about everything. Tell us what it is, and how you cope, what gets you through the day?
I’m a naturally optimistic woman. That’s first and foremost. I make sure to do things for myself – even if only in teensy doses. Like blogging or reading half a chapter of a favorite book.
The girls’ future. What happens if they can never live alone? I’m hoping to be bitten by a vampire before age 50 so I’ll never die and still look half decent. My girls will need me forever; that’s my biggest worry.
Biggest daily reward?
That can be as simple as Mia saying “Hi, Mom,” when she gets off the bus. Or seeing the comments on one of my pieces and knowing I’ve helped another family through their own autism moment.
How are you an advocate for autism?
Well, I try to make myself available for other parents in many ways. I post to lots of lists. I write for Age of Autism. I run a Yahoo! autism list with more than 500 members. I put myself “out there” to raise heck when I see some of the garbage written about autism. I speak at conferences, rallies and events. I’ve put my family in the public eye, too – which concerns me, but I think it’s important for people to see my girls as real people, not simply “one-in-150” statistics.
What has been the biggest blessing that has come from your – I don’t want to say tragedy, because I know for sure you don’t look at your daughters as a tragedy, but I know some people might not have the outlook on life that you do – but what is the biggest blessing in your life that has risen from the negatives that you have experienced from dealing with children with autism?
There’s a feeling of power that goes along with just plain surviving. Very little fazes me any longer. I just know we can survive anything. That brings rather a Zen-like comfort.
1. When you were 10 years old, what did you want to be when you grew up?
2. What type of kids did you hang out with in high school?
I went to a small boarding school in Massachusetts, and we had only 81 kids in our class. There weren’t a lot of cliques. I had friends in the math-geek crowd, and I also dated the football QB/captain, who was also an all-American lacrosse player. So I guess I was pretty democratic in my friendships.
3. What women from the past do you most identify with?
Laura Ingalls! (I bake the kids’ bread, after all.) And Rosie the Riveter, from the 1940s – the “roll up your sleeves and get to work” type of woman.
4. What’s your workout?
I run and walk, and I do 10 to 20 push-ups and sit-ups several times a day.
5. Cat or dog?
6. What do you do when you want to completely tune out?
Re-read a book.
7. What book is sitting on your shelf waiting to be read?
Chris Grabenstein’s Tilt a Whirl, a John Ceepak mystery that takes place on the Jersey Shore and has lots of Springsteen references. Chris and I share an agent. Chris, however, makes money for our agent, Eric … Major distinction, LOL!
8. If you could have dinner with any two people, who would you choose?
Today? Barack and Michelle Obama, just to hear about the journey, the sacrifice, the fears, the overwhelming emotions they must be feeling right now.
9. What is the one thing you want or do not want the next generation of girls to encounter?
I’d get rid of bikini waxes. For God’s sake, we can put a man on the moon but we can’t find a painless way to eliminate the bikini line? (I’m Italian, remember.)
10. If there were one thing you could change in your life, what would it be?
I’d wipe away my girls’ autism and let them just live. I wouldn’t care if they were C students, never made the soccer team, were less than pretty or had size-12 feet. I’d let them talk and express themselves and grow older and grow up and leave the nest and start their own families. I think I’d make a darn good Grandma.
The Staglianos have taken the brave approach to autism of let us be seen and heard in order to educate and inform. They have been interviewed on ABC’s Good Morning America Part 1 and Part 2 and were recently featured on ABCNews.com. To see a slide show and to learn more about what it’s like for Kim and her family to live with autism, visit Autism Voices and Views.
Stephanie Elliot is Betty’s Lit Lounge and Parenting editor, and she also answers your parenting questions at Just Another Manic Mommy. Visit her at www.manicmommy.blogspot.com or www.stephanieelliot.com.