The Milestones That Keep You Going When You Have A Kid With Autism
April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Lisa Quinones-Fontanez, who describes herself as “a secretary by day, an MFA creative writing CCNY student/blogger by night, and Mommy round the clock.” She’s mom to Norrin, who’s six, and blogs about autism, family and life from an urban Latina perspective at Autism Wonderland.
It’s bedtime and I ask my six-year old, Norrin, to pick out his bedtime book. He taps his chin with his index finger and says, “Hmmm let’s see…I know!” He pulls out a book we’ve read hundreds of times before: Frog and Toad All Year.
My head hurts and I want to skip the story. But I don’t. It’s part of our routine. Instead of reading all the stories in the book, I flip through a few pages and start reading The Corner, a story about the anticipation of spring. But Norrin likes to start at the very beginning—winter.
I’m glad winter’s over. It’s been a mild one, but I couldn’t wait for spring.
When I was pregnant with Norrin, I knew that parenting wouldn’t be easy. I knew that some days would be rougher than others. And I read a bunch of parenting books, thinking they would prepare for the seasons ahead.
But parenting a special needs kid? Nothing prepared me for that. Rough days can easily stretch out into weeks, sometimes months. Months where everything seems uncertain. Weeks, when progress seems stagnant. Days, spent in waiting rooms. Nights, when no one sleeps.
It’s been a long month.
There have been appointments to make, doctors to see, evaluations to read and forms to fill out. I have spent hours on hold. Leaving voicemails. Writing emails. Waiting for calls to be returned.
And when I come home from work, there is still dinner to cook, dishes to wash and homework to do.
I am tired, frustrated and discouraged. There is so much to get done and there is only one of me. Getting the appropriate services for a special needs child shouldn’t have to be so difficult. And I question myself constantly. Am I doing enough?
But no matter how tired I am, no matter how long the day, I read a bedtime story to Norrin. And tonight is Frog and Toad All Year.
When I finish reading the story, I close the book hoping Norrin picks up the cue that it’s time to go to sleep. He doesn’t. He asks me to continue. And as I open the book again, I notice the familiar scrawl on the very first page.
Whenever I purchase books that have some kind of sentimental value, I write a sentence or two and date it. On February 27, 2010, I wrote: I love reading to you. I cannot wait for the day you will read this to me.
It’s two years later and Norrin can read entire books. He can tell me the names of the authors. And when he tells me the story he wants to read, he looks me right in the eye.
At bedtime, he is able to put on his pajamas with very little prompting.
He can pour his own juice.
He can tell me when he has to use the bathroom.
He can zip up his own coat.
He can put on his book bag.
And when he does something wrong, he says, “I’m sorry.”
I think of all the things Norrin has learned to do in the last two years; all the smallest of smallest things that can be challenging for a boy like Norrin.
I think of all the appointments and days spent in waiting rooms.
The phone calls and the waiting on hold.
I think of every email that I needed to send and all the copies I needed to make.
And I’m no longer discouraged or frustrated because it’s all for Norrin. Everything I do makes a difference for him. While I’m still sort of tired, I am in complete awe.
It’s like those first few days of spring, when you notice the buds on tress. You wonder when it happened, because you couldn’t remember it being like that the day before. But it doesn’t matter when it happened or that you didn’t notice—you just take the time to appreciate its beauty.Add a Comment
Tags: autism, Autism Awareness Month 2012, Autism Wonderland, health, Lisa Quinones Fontanez | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max