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.

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  1. by Carla @ All of Me Now

    On April 23, 2012 at 8:35 am

    This was beautiful. Norrin is blessed to have you as his mother. It’s a gift to be able to have the perspective you have. I hope other parents of special needs children read this and are inspired. ps. I’m kicking myself for never having written a single word or date in any of my children’s books LOL Wonderful idea!

  2. by Eliana Tardio

    On April 23, 2012 at 8:56 am

    Beautiful Lisa, you are such a great mom and advocate for your lucky boy :)

  3. by Cristina-Una colombiana en California

    On April 23, 2012 at 12:23 pm

    Norrin has the best mom in the whole world. I enjoyed reading your article. Thank you!

  4. by Elisa

    On April 23, 2012 at 2:20 pm

    What a beautiful and inspiring story, Lisa. Te felicito. Thank you for sharing!

  5. by Peru Delights

    On April 23, 2012 at 5:10 pm

    I love to read your posts. Each one is an inspiration, and you, my friend, are an example for so many parents. You are the best mom. Thanks for sharing with us those feelings, and the beautiful moments you share with your son. I´m sure you treasure them.

  6. by Sujeiry

    On April 23, 2012 at 7:15 pm

    Beautiful post! My eyes watered when reading that you write a note in each and every book and how your wish was granted. You are an amazing mother and writer. And Norin is a cutie (so happy I met him!). Your posts always move me, Lisa!

  7. by Helena

    On April 24, 2012 at 6:50 am

    Lisa, beautiful and touching as always. As I’m typing Ariel is dancing around me and is asking me “Why are you crying Mami?” LOL! Lisa has that effect on me I guess….;)

  8. by Veronica of Muy Bueno

    On April 25, 2012 at 10:13 am

    Norrin is blessed to have a mom like you! I once read somewhere that the spirit of a child picks it’s parents before they are born, they know who has what it takes to be the best parent for them on this Earth…I have to say Norrin picked you because you truly are an amazing woman and mom. Besos…

  9. by Sue

    On April 25, 2012 at 1:35 pm

    Thank you for this lovely post. My older son has attention issues and I struggle too with the painstaking adaptation to new skills learned. You reminded me that it’s all worth it! Thank you! Lucky Norrin!

  10. [...] • Lisa of Autism Wonderland had a guest post called The Milestones That Keep You Going When You Have A Kid With Autism published on Parents.com [...]

  11. by Rebecca

    On April 27, 2012 at 10:47 am

    “Everything I do makes a difference for him.”

    These words really spoke to me. Thank you.

  12. by Maggie

    On April 27, 2012 at 7:59 pm

    The little things stand out more when they are done for the first time by a child with special needs. My 2 stepbrothers Jason who turned 17 today and Joshua who is 14 both have autisum.The smallest things really stand out.Jason making his birthday cake with little assitance a big 1st,Josh writing in sentances,Josh being able to voice his feelings in words,Jason getting a girlfriend and both of them being able to annoy me! yes that last one sounds odd but my mother thought she would never hear Josh and I argueing and being siblings.I really great book about having a sibling with autism is Rules by Cynthia Lord.Told by 12 year old Catherine whose younger brother David has autism it is the best book discussing the topic I have ever read.Maybe the fact that Lord has a son with autism makes it so real.Just putting that out there great read

  13. by BellaVidaLetty

    On April 29, 2012 at 11:12 am

    Beautifully written inspiring story.

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