Posts Tagged ‘ raising kids with special needs ’

The Importance of Playdates and Kids with Autism

Wednesday, March 12th, 2014

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

My son, Norrin, playing with his friend, Dylan.

“Play is often talked about as if it were a relief from serious learning. But for children play is serious learning. Play is really the work of childhood.” -  Fred Rogers

When my son, Norrin, was first diagnosed with autism he had no appropriate play skills. He didn’t even have much interest in playing with other children. Norrin was content playing by himself. I never pushed playdates because our schedules consisted of work, school and therapy. Most of the other special needs parents I know juggle the same kind of schedule. So working on socialization and playdates with peers wasn’t a priority for us especially since we knew it was being done at school.

A few weeks ago, I hosted a party and invited a few moms with their children. It was our first party in years. And it was the first time I had other kids with autism in our home. Unsure of how to host while entertaining children, I asked our ABA therapist if she could help out for a few hours.

I’ve seen Norrin at the playground. Sometimes he’ll run around with another kid but it’s never for more than ten minutes. I’ve seen him in school sitting beside a classmate but not really engaging. Watching Norrin interact with kids  in his own environment was eye opening for me. Norrin was talking and sharing and wanting to play with the other kids. He even read his guests a story.

At eight years old, Norrin is finally ready for playdates. And since our little party, he’s been asking for all his friends to come over and play.

I’m no longer tied to mainstream dreams. I just want Norrin to be happy and be as independent as he can. I also want him to have at least one friend. A friendship will never form unless I start cultivating the value and meaning of a friend now.

A few weeks ago I shared that I was ready to start cutting back on our therapy. I’ve spent the last five years focusing on all the skills I thought were more important, always putting socialization on the back burner. It’s time to take play seriously.

Do your children have regular playdates?

 

Have you heard about my #EverydayAutism Photo-a-day Challenge - go check it out on Instagram!

 

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The Importance Of Talking To Your Kids About Disability

Wednesday, March 5th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia (formerly of AutismWonderland).

I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.

Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother  referred to it,  she’d say, “She’s not retarded. She’s just a little slow.”

I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.

The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.

There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.

Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.

My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.

But the r-word is not “just slang.” It’s a slur. It’s a word meant to insult. In a recent Huffington Post article by John C. McGinley, he writes:

…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.

My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.

My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.

Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.

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Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills

From my other blog:

 

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What A Special Needs Individual Is Worth…According To One CEO

Wednesday, February 5th, 2014

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

As an autism mom, I have just as many dreams for my son, Norrin, as any other parent raising a ‘typical” kid. One of my dreams for Norrin is that he grow up and be able to care for himself. I want him to have the opportunity to find work that he can take pride in. I am raising Norrin to be a respectful and responsible young man who will become a valued member of society. And I want Norrin to be recognized for his potential and worth.

However, wealthy CEO, Peter Schiff, believes that individuals who are “mentally retarded” are worth $2 an hour. Schiff’s comment is not only arrogant but ignorant. And it perpetuates the misconception that individuals with special needs are less than and unworthy.

Those of us who raise, love and know individuals with special needs, know how wrong Schiff is. It is a privilege to recognize a person’s true value. My friend, Jo Ashline, pretty much summed it up in this simple tweet:

I have a 27-year old sister with an intellectual disability. While there are jobs that she cannot do, there are many she can. For the last few years, she’s had a part time job as a greeter at Ikea. She’s able to take the train to and from home independently and she feels good about the money she earns. I am grateful that she works somewhere that values her as a person. That’s what I want for Norrin and every other kid with special needs.

Just because someone has a “disability” doesn’t mean they lack complete ability  to perform a task. Brad Fremmerlid is an amazing example of what can be accomplished when an individuals special talent is put to good use.

As Norrin’s mom, I believe Norrin is priceless. But on the day he is able to work, I want him to be treated equally and paid accordingly. Because regardless of autism, if he’s able to perform a job well – he should be paid fairly. It’s his human right.

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How Elf on the Shelf is Helping My Autistic Son

Wednesday, December 4th, 2013

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

How Elf on the Shelf is Helping my Autistic SOn

I first learned about Elf on the Shelf last year.  I thought it was a cute idea, so I purchased one for my son, Norrin. I quickly realized that parents either loved it or loathed it. It’s a pretty hot topic and there are some strong opinions out there. I’ve read brutal posts and comments about this little Elf and the parents who post their daily Elf pics all over social media.

Before you get any ideas, here are a few things you should know about me as an Elf on the Shelf mom:

  • I’m not crafty. At all. So don’t expect DIY mini furniture for our Elf from me.
  • I have no imagination to think of creative ways to pose our Elf.
  • We live in a small 2 bedroom apartment – there are only so many ‘shelves’ for our Elf.
  • I’m busy. I work full-time (outside of the home) during the day and I write at night.
  • I’ve woken up and have forgotten to move the Elf. Twice. And it’s only the 4th of December. I just moved him over to another shelf, on the same bookcase.
  • I’m not big on holiday decorating. We put up our tree a few days before Christmas. I don’t even send Christmas cards because I don’t have the time.

So why do I bother with Elf on the Shelf or “Elfee” as Norrin calls him? Because Norrin likes it. And it helps him understand Christmas.

Here are the 5 ways Elf on the Shelf is helping Norrin:

Encourages Imagination. Imaginative play doesn’t come naturally to Norrin. It’s had to be taught. Christmas is such an abstract concept for him to understand.  We read the book and we talk about Elfee and Santa Claus. It all helps to connect the dots.

Teaches Basic Play Skills. Every morning when Norrin wakes up, I ask him about Elfee. He gets this huge smile and runs to the spot from the day before before looking around the room. It’s like playing hide and seek every morning. I don’t help him. He has to search and find Elfee on his own. And when Norrin finds him, he is so proud!

Builds Anticipation. Norrin knows when Christmas is and he looks forward to it. But the days leading up to Christmas feel like an eternity for kids – especially kids with autism who have difficulty understanding the concept of time. Elfee helps build up to the excitement. It makes the waiting for Christmas fun.

Prompts Communication.We read the book, we talk, Norrin asks questions. When I was talking about Santa, Norrin asked questions. What’s Santa’s last name? Where does he live? Where’s the North Pole? Elfee, Santa and Christmas are things that Norrin is interested in. Anything that gets him talking and engaging with us, I’m all for it.

It’s Fun! I’ve read so many negative things about Elf on the Shelf: it’s a waste of time, it’s creepy, it’s one extra thing on a never ending to-do list and how some moms are happy their kids have out grown the Santa phase.

To me it’s just fun. We don’t go to  the mall to visit Santa, holiday parties, the Rockefeller Christmas Tree Lighting, ice skating in Central Park or the Christmas Spectacular at Radio City Music Hall. The Elf on the Shelf is our holiday thing. It brings a little of the holiday magic to us, rather than having to seek it out. It’s Christmas fun in the comfort of our home. Seeing Norrin excited about Elfee makes the few seconds of finding a new spot makes it worth it.

Do you use Elf on the Shelf with your kids?

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Finally! An Autism Study I Can Agree With

Wednesday, November 6th, 2013

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

Over the years, I’ve read about many autism studies. Just a few weeks ago, a study came out about weight gain during pregnancy causing autism. I try not to pay too much attention to studies, especially the ones that blame the mother and make me feel bad. I gained 60 pounds during my pregnancy with Norrin. (I ate mac and cheese and fried chicken for lunch almost every day.)

There is no known cause for autism  just a whole lot of theories.

But then I read the latest autism study: there may be a genetic connection between autism in children and language problems in other family members.

Researchers looked at 79 families that included one child with autism and at least one child with a language impairment. Parents, children, grandparents — and even aunts and uncles in some cases — in the families underwent genetic analysis and a series of tests to assess their grammar, vocabulary and language-processing skills. (HealthDay News)

And as soon as I read this study, I said YES! This is it.

When Norrin was first diagnosed, family members continued to dismiss autism. I was told of uncles, cousins who had difficulty – even my brother.

I heard about my uncle who didn’t speak until he turned five years old. My grandmother called him “El Mudo” (Spanish for “The Mute”). And my mom reminded me that my brother had difficulty with speech and didn’t start talking until after he turned three. (My uncle grew up to have a career in the military and my brother is a cartoonist.) And I heard similar stories about my husband’s family.  Once again, I was told that “boys are slower than girls” and that Norrin would be fine. But I thought it was something more.

I don’t believe vaccines cause autism, I don’t believe it’s weight gain or depression during pregnancy or living near a highway. But I do believe that genetics plays a factor.

After Norrin’s diagnosis, I took a closer look at my family, I’ve silently diagnosed quite a few members. And since Norrin’s diagnosis, children on my husband’s side of the family have been diagnosed with autism.

I have no desire to cure Norrin’s autism, but if this study can help me better understand him – I’m all for it.

What are your thoughts?

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