Posts Tagged ‘ Autism Awareness Month 2012 ’

The Milestones That Keep You Going When You Have A Kid With Autism

Monday, April 23rd, 2012

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.

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Parenting A Kid With Autism When You Have Autism, Too

Thursday, April 19th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers. Today’s post is from Carol Greenburg, executive director of New York Special Needs Consulting. Carol is a special education consultant with a unique perspective: she is an adult with Asperger syndrome and the mother of a severely language-delayed autistic child. She is the East Coast Regional Director of Autism Women’s Network, a frequent speaker at conferences, universities and community-based organizations, and an editor of the site and book The Thinking Person’s Guide To Autism.

What autism means to me and my family:

One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages  teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too.  He notices when I get into trouble, and without my even having to ask him, he passes along skills that I never mastered, especially in motor planning, an area in which he’s conquered many difficulties that I still haven’t. It’s been much easier for me to put my shoes on correctly since he’s started teaching me what he’s been taught. Sometimes non autistic people are amused when they see a highly educated, verbal person like me struggle with simple motor tasks that come easily to most adults. My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.  I suspect many parents have to wait until their children are grown to experience that kind of reciprocity.

Three things I want other parents to know about my kid and others like him are…

Alone time is critical,  not just so that my son can avoid sensory overstimulation, but also because he needs quiet or even stimming breaks so he can deeply process all he’s observed or been taught on any given day.

Assume empathy. Despite reports to the contrary,  most of us are as empathetic as typically developing people, and I believe my son has a surplus of that quality.

When my child breaks something or pushes another child, he faces consequences. If he behaves in an unusual way  that is not hurting anyone or anything, I don’t apologize for him, or expect him to apologize for himself. I cannot imagine raising a confident child in an atmosphere poisoned by shame and self-loathing. When others have a problem with nondestructive, unaggressive evidence of his or my autism, it is their problem, not ours.

One misunderstood thing about kids with autism is…

There’s an assumption that the less verbal a kid is, the less independent they are in daily life, even if they need intensive support in school, as my child does. I suspect that talking is the single most difficult task that’s consistently demanded of my child. To compensate, he has learned how to do things at home for himself because he finds it easier to solve his problems quietly and creatively himself than to formulate a verbal request. He’s all action, very little talk. When a typically developing friend complained about the impossibility of reaching a cup on a high shelf, my son just got a stepladder and delivered the cup to his friend. Of course it’s important to encourage as much speech as possible, but I’m still really proud of him for cultivating self-sufficiency to cope with his language delay.

Some of the best things I’ve found to help my child are…

My son not only enjoys music and physical activity, they also help him self-regulate and regain focus. Both are inexpensive DIY coping mechanisms to address anxiety and promote focus.

My most effective parenting strategy is…

Autistic people are so often patronized or treated like we’re invisible, many of us have not experienced what it feels like to be approached with respect. So my husband and I try to consciously teach my son the concept by treating him with respect and by making a special effort to treat others with respect in his presence.

One of my favorite stories about my child is…

It’s just too hard to choose, so I’ll just offer up this week’s excitement. A few nights ago my son did something that reminded me to alway assume his comprehension. He needed a  haircut and I said so in front of him. Before I got around to taking him to the barber, he became rightfully impatient with my dilly-dallying and cut his own hair in the middle of the night. The action was his, but the responsibility for it was primarily mine. As we surveyed the bald patches the next morning, his only comment was “Not going to the barber.” I advised him not to jump to any conclusions about that. One buzz cut later he looks like a tiny,but noble, Marine. Semper fi.

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