Five Years After An Autism Diagnosis (part 2)

Thursday, May 23rd, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

To read Five Years After An Autism Diagnosis (part 1 – On The Day My Son Was Diagnosed with Autism) click HERE

I cannot believe it’s been five years since my son Norrin was diagnosed with autism. Sunday, May 19th – our autism anniversary – passed with little fanfare. It was a rainy, lazy and dreary day. My husband, Joseph, took a two hour nap, I did laundry and relaxed for a while with a good book. I played with Norrin - we worked on a art project that required patience, concentration and using his pincer grasp.

The day before we spent the afternoon walking around Arthur Avenue – the Little Italy Section of The Bronx. After we went to the playground and walked around the shops, we ate lunch at Mario’s, one of our favorite restaurants. I indulged in a glass of wine, Joseph ordered a beer. When Norrin told the waiter what he wanted to drink, he used the words please and thank you. Norrin sat patiently with his iPad as we waited for our food – and when he got anxious or too loud, we prompted him and he was able to continue playing nicely.  Joseph and I talked about our week, the errands we needed to do and summer plans. We reminisced that Mario’s was where we had one of our first dates (almost 13 years ago). I don’t even think the subject of autism came up.

The weekend for the most part was uneventful and not any different from our usual weekend, like any other “normal” family. We go to the park, we go out to eat, we run errands, we do chores, we sit back and enjoy the moment.

Five years ago, I couldn’t see our life returning to normal. I couldn’t see us going out to eat as a family or me sitting on the sofa reading a book that wasn’t autism related. Five years ago, I didn’t know anyone raising an autistic child. I didn’t even know what autism was. When I think back to the first days after Norrin was diagnosed, it was so hard to have hope. Because there was no one who could offer it – not even the doctor who diagnosed Norrin.

Then we started working with therapists and found an appropriate center based program for Norrin. And slowly we started seeing progress. Norrin learned to point and say a few words. He learned to makes the signs for more and all done. With each new accomplishment, I was given a glimmer of hope. They were often the milestones that kept me going.

Five years ago I couldn’t see beyond all the things Norrin couldn’t do. Now I see how far he’s come and celebrate everything Norrin can do. All the little things like a smile or a wave or a spontaneous WH question.

It’s been amazing watching Norrin grow up, watching him grow with autism. Seeing it evolve and mature. He is no where near being a ‘typical’ kid but he’s happy. At seven years old, Norrin has enough language to get his basic needs met. He uses the bathroom independently (though still needs some supervision). Norrin navigates the iPad better than many adults.  He has a playful and loving disposition, lots of opinions and a fierce determination. He’s one of the hardest working seven-years old I know and I admire him.

I wish that I could say that it’s gotten easier during these last five years. It hasn’t. I am still learning every day. There are nights when I still worry about Norrin’s future and cry. But I have a community of parents who understand me. I have people who I can look to for guidance. I have seen progress. I have hope.

I think about Norrin five years ago and where he is now. And I know in another five years I will look back at his progress with amazement. Norrin’s come such a long way. And so have I.

A Company Recruits Staff With Autism: A Good Thing But….

Thursday, May 23rd, 2013

“German software Giant SAP AG said Tuesday it plans to recruit people with autism to make full use of their talents to process information,” read the article a reader sent me. My first reaction: woo hoo! It’s great to hear about companies making a point of hiring people with special needs.

My next reaction: Why aren’t we hearing about efforts like this in U.S.? It’s a particularly tough job market for people with special needs: According to the Office of Disability Employment Policy, the current unemployment rate for people with disabilities, 12.9%, is almost double that for people without disabilities.

And then, I kept thinking about it. And I wondered if a software company recruiting people with autism to leverage, as the company statement says, “the unique talents of people with autism” was reinforcing the Rainman math-genius stereotype of people with autism. A member of the company’s executive board did note, “Only by employing people who think differently and spark innovation will SAP be prepared to handle the challenges of the 21st century.” That’s an awesome message. But because this is a rare workplace occurrence that’s getting a whole lot of attention, the takeaway for the vast majority of people might be that people with autism are tech whizzes. A positive and yet, typifying any population undermines individuals’ unique offerings.

Wouldn’t it be awsesome if a big-deal fashion company made a big-deal effort to hire people with special needs? A public relations company? A major law firm? ANY company?

Max is only 10 but I often wonder what kind of job the future holds for him. He has an intellectual disability, and the workers with ID I see in our community are usually making sandwiches at Subway or cleaning tables at Whole Foods. If those are jobs Max might someday want, then great—ultimately it’s all about what makes him happy. Still, I want him to have many, many work possibilities to choose from. I would like him to feel that the job world is his oyster, as I did when I graduated college.

The bottom line is, more companies in this country need to make a concerted effort to hire people with special needs. And then, maybe someday, we’ll get to a place where a company hiring people with special needs isn’t “special” and headline-making but the norm.

Image of magnifying glass over classified section via Shutterstock

Special Needs Offenders: I’m So Glad You’re Sorry

Wednesday, May 22nd, 2013

Something major has been happening in recent years: People are making major public reparations after they’ve offended people with special needs. Two cases involving kids have recently made headlines. First, after a Chevrolet car dealer in Pocatello, Idaho ran a radio ad that asked, “Are you driving a wimpy truck? Do your kids take the short bus so they won’t be seen in it?” and parents of kids with special needs voiced outrage over the derogatory reference to special ed, the dealer yanked the commercial off air—and is now working on promotions for the state’s Special Olympics.

Around the same time, the Disney Channel pulled an episode of Jessie that made a kid with a gluten allergy an object of ridicule (at one point, another character throws pancakes in his face and everyone laughs). It takes a lot for a major entity like Disney to admit they’ve done wrong, but after a mom of two kids with celiac disease started a change.org petition, Disney announced on Facebook “We are removing this particular episode from our regular programming schedule…. Please accept our apologies for the upset this episode caused.”

It is hardly progress that these offenses are still happening, and that people see nothing wrong with shaming kids who has special needs. It’s disheartening, that’s what it is, as the parent of a kid with special needs. It tells me that we still have a looong way to go for the world to accept kids like Max, who has cerebral palsy. At the same time, though,  it is gratifying to hear the apologies. Perhaps the people responsible for these slams will learn their lessons—or maybe they’re just putting on a “sorry” face because social media has shamed them into it. (Or, as may be the case when celebrities use the word “retarded,” their publicists made them.) But no matter what, these stories are raising major public attention and making people more aware that our kids deserve respect.

From my other blog:

12 things I learned in First Aid that you oughta know

Please, spare kids with special needs the pity

How not to encourage your child’s obsession

Image of “Mistakes Behind You” road sign via Shutterstock

A Letter To Moms Who Fake Disabled Family Members To Cut Lines At Disney World

Thursday, May 16th, 2013

Dear Moms Who Fake Disabled Family Members At Disney World,

I couldn’t believe it when I read the newspaper story. “This is a new level of low,” I emailed the friend who had sent me the link.

It seems that, according to social anthropologist Wednesday Martin who interviewed you for her book Primates of Park Avenue, you have been paying big bucks to a company that hires out tour guides with disabilities so you can pretend they are part of your family. That’s enabled you to skip lines to attractions at Disney World and slip in via alternate entrances reserved for people who use wheelchairs or motorized scooters, or who have other special needs.

This is wrong on so many levels.

Perhaps you think it’s a victim-less thing to do. But the exposé will surely have an impact, in some way or other. Disney World is known for being wonderfully hospitable to people with special needs. When our family visited the park a few years ago, the staff could not have been more accommodating. Yes, we were given a special pass that enabled us to bypass most lines. This is because my son, Max, isn’t able to stand for long periods of time (he has cerebral palsy) and because large crowds freak him out. Getting this pass was a pretty straightforward process; who knows what new regulations might be put in place. This is good because it could help keep out fakers like you, but it may make things more difficult for those families who legitimately need and deserve these passes.

It’s also disturbing that people with disabilities are allowing themselves to be hired out for this purpose. Perhaps they need the work, but it demeans them as human beings. I am ALL for parks hiring people with disabilities to be actual tour guides. But when a company is supposedly hiring out tour guides with disabilities for the sole purpose of beating lines, that is shameful all around.

Last, have you considered what you are teaching your children by doing this? I’ll just remind you of one of the fundamental laws of parenting: Children learn not from what parents say, but from their actions. You are giving your children a spectacular lesson in how to be deceitful. You are showing them how to sneakily get around rules. You are teaching them to use people for their own selfish gains.

Please, sprinkle some of that Disney magical pixie dust on your souls and quit this.

Sincerely,

A mom of a kid with special needs

From my other blog:

Please, spare kids with special needs the pity

Should people who steal handicap parking spots be shamed on Facebook? 

How did you tell friends and family your child had special needs? 

Image: Flickr/Loren Javier

Five Years After An Autism Diagnosis (part 1)

Wednesday, May 15th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

In a few days we will celebrate our five year autism anniversary. I say celebrate because when I think of Norrin five years ago and I look at him now – I see a completely different kid. I have a lot to be grateful for. I have so much to hope for. But on the day Norrin was diagnosed with autism – May 19, 2008 – I couldn’t see any of that. Many people have read my blog posts and written to me asking how I came to be “okay” with autism. But I wasn’t always okay with it. Acceptance was a process for me. Any parent who has heard the words, “your child has autism” remembers everything they felt that day. Today I’m sharing that day with you and next week I’ll share what it took for me to be okay with autism.

On the day Norrin was diagnosed with Autistic Disorder and Global Development Developmental Delay, I felt my heart break. My husband, Joseph, had been so optimistic, so certain that it could not be autism. And I knew by the way Joseph squeezed my hand that his heart was breaking too. Joseph had all the dreams that a father has for a son and within seconds I could feel Joseph’s dreams crumbling. I could feel his leg shaking next to mine.

Even though I tried to prepare myself, there was that small big part of me that wanted to hear that Norrin was “typical” and that there was no need to worry.

On the day Norrin was diagnosed, I put my arm around Joseph in an attempt to comfort him and I thought of our wedding day. Everyone told us that we were perfect together. And then I remembered the moments after Norrin was first born: I immediately looked his wrinkled little body over, counted his fingers and toes and thinking that he was absolutely perfect. And there we were, this  seemingly perfect couple being told that our child was not.

We were handed a twenty-page evaluation, detailing all the things Norrin couldn’t do, all the milestones he had yet to reach.  At two years and three months old, Norrin had the cognitive level of a fourteen-month old and the language level of a seven-month old. I hated reading the evaluations: on paper Norrin sounded horrible. Nowhere in the evaluation did it talk about his dimpled smile or the sound of his laugh. Nowhere did it describe how his big brown eyes sparkled when he was happy. Or that he loved to read and was fascinated by letters and numbers.

Joseph and I cried in the car, neither one of us really able to comfort the other. Both of us thinking of all the things we could’ve done to prevent autism.

When we picked Norrin up from the babysitter, it was then that autism became painfully real.  Norrin was sitting in a playpen spinning the wheels of a car while the other children were playing. It was too easy to imagine how isolating and sad his life – our life – would be. This was not the life we were supposed to have, I thought.

Nothing I read prepared me for the pain, anger and sadness that I felt. On the day Norrin was diagnosed, I went into our bedroom, closed the door and buried my face in my pillow screaming as loud as could. Punching and kicking like a three year old having a tantrum. Why Norrin? Why Me?

Everyone kept telling me, “God doesn’t give us anything we can’t handle.” But autism and raising a child with a disability wasn’t something I wanted to handle.

On the day Norrin was diagnosed, I called up my best friend to tell her the news. After a few minutes, I asked how she was doing. She was seven months pregnant and excited about her baby shower. While I was happy for her, I couldn’t feel happy with her. Her pregnancy, her happiness and hope only reminded me of my loss.

On the day Norrin was diagnosed with autism, I cried myself to sleep. And I cried for many nights after that.

Part 2 to come: Wednesday May 22, 2013