Tuesday, August 23, 2011

Guest Contributor: Lisa Quinones-Fontanez


According to an article last June in Fox News Latino, "The prevalence of autism among white children in the U.S. is 1 in 100, according to the Centers for Disease Control. But among Hispanics it is 1 in 170... According to the data from 2001, white children had the highest rates of autism, 90 percent higher than Hispanic children. By 2005, there was virtually no difference." 

My friend, Lisa Quinones-Fontanez, is the publisher of Autism Wonderland, a blog chronicling her experiences as a mother of a child with autism. She has graciously taken the time to share some of her thoughts and knowledge in this area...


My Experience:

I often wonder what kind of parent I would be if I had a different kind of child. By different, I mean a child without autism.

I remember when my son was first evaluated at 24 months. Doctors asked questions that I didn’t know how to answer. Did he babble? Did he play peek a boo? Did he look us in the eye? Did he wave hello?

I continued to think about those questions after coming home from that initial evaluation and looked at my son’s baby calendar. It was a baby shower gift, the kind that a new mom uses to record baby’s firsts. At the back of the calendar was a page of milestone stickers. The calendar, as I flipped through it, was mostly blank. It was then I realized that I hadn’t forgotten to update it; my son just hadn’t reached many of the milestones.

Those first two years of his life went by so quickly. As a new mom, I was blinded by my love. I missed all the things he could not do. Now I look back at his baby pictures and study them, wondering: was autism there? And I chastise myself for not knowing enough of the signs of autism to see it.

After we received the diagnosis, I felt like a failure. I spent a lot of time trying to get my son to “catch up” with his peers. He was enrolled in a center-based program and I started using a compensation notebook to communicate with the teachers. That first year, I wrote to the teacher often. I asked questions about behaviors, I shared recent accomplishments.

By the second year, when he entered Pre-K, I sent my son to school on his first day with a five-page entry in a new notebook. I wrote about all the things my son could do. What he like and disliked. What he would work for. What he did when frustrated. I listed his self-stimulatory behaviors. I wrote about how far he had come in a year and all the potential he had. I also included a word document list of all the words he could say. I had worked on it for weeks. Recalling words from memory, constantly listening for words I may have forgotten or overlooked.

When I think about the kind of mother I had been and the one I’ve become. I am strangely pleased.

If it wasn’t for autism I might not have remembered that my son’s first word was spoken on a Thursday in the last weeks of July, the summer of 2008. If it wasn’t for autism, I may not have remembered that my son gave his first real kiss on Christmas day of the same year. I would not know or appreciate all the work it took to get him to point his finger. I may not have been able to recall every single time he’s spontaneously said, “I love you Mami.” Because they are words I so rarely here.

Ultimately, it doesn’t matter what kind of mother I would have been. It’s the mother I am now – the kind of mother my son taught me to be – that matters.

Early Signs:

I remember when I first had concerns about my son. They were so easily dismissed – by my family, friends and even my husband. At his 18-month check up, I expressed these concerns to our pediatrician. He repeated my mother’s words, “He’s a boy; they develop slower than girls.” I was told to wait until my son turned two years old.

But the more I researched developmental milestones, the more I realized something was wrong. By 12 months my son did not gesture (point or wave). At 16 months he did not have any words. By 24 months he did not have any words. He had no sense of “pretend play.” The more I learned about autism, the more I knew my son fit the criteria.

My only regret is not acting on my initial instincts; my son could have started Early Intervention so much sooner. Early Intervention is crucial in a special needs child development; the earlier one can receive a diagnosis, the earlier services can begin.

Learning:

Dr. Lovass, a world-renowned autism expert believes: If a child cannot learn in the way we teach ... we must teach in a way the child can learn. I cannot stress the importance of this philosophy in teaching children with autism. I am not an educator and I have no formal training. But I have embraced the methods of the numerous therapists and teachers that have come into our home to work with our son. I have learned to think outside the box. I have mentally removed the timetable of milestones, allowing my son to learn at his own pace. I have learned that all children think, learn and process differently. What works for one child on the spectrum, may not work for another. Teaching children with autism is about trial and error and trying again. Eventually, with time, persistence and a lot of patience, you get it.

Autism isn’t the disability people perceive it to. My son isn’t Rain Man and he isn’t trapped in a secluded imaginary world. And as a family, we don’t suffer from autism, we live with it. Children with autism have the capacity to learn and to love; they have just as much potential as any other child.
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Lisa Quinones-Fontanez is a secretary by day and MFA Creative Writing CCNY student/blogger by night. Her writing has been featured in BronxMama, Being Latino and Tiki Tiki Blog.
 
More importantly, Lisa is a mother to a child with autism. Her blog AutismWonderland focuses on her family journey with autism and also provides local resources for children/families with special needs.
 
In between work, school, blog writing and advocating for her 5 year old son, Lisa is also working on a historical fiction novel (working title) A Thousand Branches. A chapter excerpt (The Last Time of Anything) from A Thousand Branches received Honorable Mention in Glimmertrain's Family Matters October 2010 competition.

7 comments:

  1. Thank you again for the opportunity to share our story and spread autism awareness!

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  2. So interesting to read your post about autism!

    Lisa, thanks for sharing your knowledge and experience with others!

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  3. Very well said! Just getting to know her blog in the last few weeks I can already tell was a treasure her words are to the Latino community.

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  4. I have learned so much from Lisa's blog.

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  5. Thank you, Lisa, for sharing your experience!

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  6. I appreciate everyone's different experience with children with autism. I've mentioned before on Lisa's blog that I'm a bit sensitive to the cause since I have a family member with acute autism and being the only one in the fam makes things a little different. In a beautiful way, actually! Thanks for sharing the resources.

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  7. What has been most remarkable about Lisa's writing is that as someone who does not have children, much less one with special needs, I am drawn into this world where I learn about the humanity of this condition, something that is lacking in other spaces where autism and those living with it, are approached in a clinical, detached, and scientific fashion. I am grateful for this window into an unknown world and the opportunity to be informed and just as important, connect.

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