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How A Group of Parents Are Shining A Positive Light On Autism

Thursday, December 27th, 2012

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

 

 

When it comes to autism, there are so many misconceptions and myths that need to be dispelled. I have learned to laugh some myths off. But mostly, I welcome questions. One of the reasons why I write is to share our experience to educate others. Because I want people to know what autism is and I especially want them to know what autism isn’t.

However the latest misconception about individuals with autism is nothing to be taken lightly. The idea that there is some link between premeditated violence and autism is not only false but it further perpetuates that autism is something to fear. To know that there are groups of people who believe that there is a connection is frightening. For our children to be vilified is heartbreaking. And for parents to be blamed for not ‘curing’ their kids autism is hurtful.

In a recent article by John Elder Robinson he writes, “There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group.  That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person. Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators. ”

While the percentage of people who believe there is a link between autism and violence is small, it’s enough for parents and advocates to come to the defense of autism. Or rather shining a light on the reality of autism.

Last Saturday when I woke up and checked my Facebook,  I noticed my feed was full of  friends (mostly autism parents) sharing all these beautiful photos of kids, teenagers, adults. All the photos had some kind of personal message about the person in the photo. All the photos were shared from a page called Autism Shines - a page created by autism parents.

In reading the messages, I was so moved. Not only by the messages on the photos but by the amount of shares, likes and comments of support. One mother showed the page to her son and he said, “I used to think I was the only autistic kid on earth. Then I realized there were others like me. I think there are some kids who don’t know they aren’t alone, but now they will know.”

In their effort to “show the world all the positive attributes of autism,” The Autism Shines Facebook Page welcomes anyone to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them.”

When I uploaded my photo of Norrin, the page had about 200 ‘likes.’ By the end of the same day – it had a little more than 1500 and the number keeps growing (it’s close to 3000 now). This is the power of community. This is autism awareness at its best.

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Disciplining Kids With Autism: 3 Things To Remember

Wednesday, December 5th, 2012

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

 

I was raised by an old school Puerto Rican mother who believed in tough love. She was quick with a slipper and quicker with her hands. She moved so swiftly, you didn’t realize you were given a cocotazo, until you felt your scalp stinging. Needless to say – I got the slipper and cocotazos often. I also went to Catholic school. I was a chatty kid and I spent most of my grade school years with tape on my mouth or sitting alone in a corner. It wasn’t considered abuse. It was discipline. And it was the early 1980s – no one cared.

I don’t believe in spanking my son, Norrin. And I would be horrified if any teacher put tape on his mouth to keep him quiet. But it’s 2012. And the idea of discipline has changed.

A few months ago, while at a friends home Norrin misbehaved and I guess my response wasn’t enough. We were asked to leave (kicked out, actually – but that is a whole other blog post). I knew that my friend felt I should have disciplined Norrin. And later, my friend made sure to tell that it was the third time (over several visits, not that same day) my son had misbehaved and that such behavior was unacceptable in his home.

Kids with autism don’t often get things by the third time. It took us months to get Norrin to point his finger. Years for potty training (and at almost seven years old, he still wears pull-ups at night). It takes a long time to teach Norrin most things. Eventually he gets it. In his own time.

So how does an autism parent discipline their child? How do we teach them that some behavior – hitting, yelling, throwing – is simply not acceptable?

Back in the Early Intervention days, ABA therapists told us to ignore negative behavior and redirect. Most parents can get away with ignoring and redirecting the negative behaviors of a three-year-old. Ignoring and redirecting a seven-year-old exhibiting negative behavior  – all adult eyes are on you. And they are judging.

I decided to try something new. (Well, new for me. You may be doing this already.) I made up a list of “House Rules.” I got the idea from Norrin’s teacher after she gave me her list of class rules. Now, when Norrin breaks one of the house rules, I point him to the list. I ask him to read it out loud. I talk to him about right and wrong. And then I redirect him. If he corrects the behavior, I give some kind of verbal praise and a hug. If he does not – I take something away (like the iPad). So far, it seems to be working. (I’ll keep you posted.)

The thing is, when it comes to disciplining Norrin, most of the time, I am at a loss. Some days he gets it. Some days he doesn’t. And it’s hard to know if I’m doing the right thing.

But this much I do know (because I’ve learned the hard way):

  • What works for parents of “typical” kids, is probably not going to work for yours;
  • Screaming at your kid while he’s in the middle of a meltdown isn’t the right time to teach anything; and
  • They need you to be patient.

How do you teach discipline to your kids?

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The Do’s and Don’ts of Holiday Gift Shopping for Kids with Autism

Wednesday, November 28th, 2012

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 it will be December, and the stores and streets are all decked out in glittery holiday cheer. Maybe you’re planning on starting your holiday shopping early. (Though if you’re anything like me, you will scramble around at the very last possible second.) And maybe there’s a child with autism in your life and you’re wondering what to get him or her. It’s always challenging to find the “perfect” gift for anyone, but shopping for kids with autism can be a little tricky. So I thought I’d share a few do’s and don’ts that will make everyone happy this holiday season.

DO ask the parents what the child is currently into—even if you think you know. Kids with autism are kids first. And like most kids, they change their mind often.

DON’T question what the parents suggest (unless they suggest a pony). Kids with autism tend to be very specific. If a kid asks for markers, chances are they really want markers.

DO think about educational purpose. Parents of kids with autism or any other special need do not buy toys or games that don’t serve a purpose. Think about the educational or therapeutic value of the toy or game. And don’t think you need to break the bank with educational toys or go to a specific store or website. There are local stores that offer great options at reasonable prices.

DON’T pay attention to age-appropriate suggestions on boxes or grade level reading on books. When buying anything for kids with autism, it is absolutely critical to think about developmental age rather than chronological age. The other day I was talking to a friend and I told her that Norrin has been asking for the Handy Manny Tool Set. And my friend asked, “Isn’t that a little babyish?” Norrin will be seven in January. And I’ll admit, I thought the same thing too. But if a Handy Manny Tool Set will make him happy, then so be it. It will encourage imaginative play and that’s what we’re currently working on.

DO think about the parents’ sanity. If you purchase a toy with some kind of music or talking—please make sure there’s an on/off switch. PLEASE. And if the toy or game you purchase requires batteries, you may want to include a pack with your gift, just in case.

DON’T think of clothes as an option. Kids with autism often have sensory issues. Specifically, with jeans and shirts with tags—because even if the tag is cut out, it will still not work. What is slightly uncomfortable for us can be absolutely painful for them. And anything with buttons, buttons can be really hard for kids with autism to manipulate.

DO make it easy (for everyone) with a gift card. I always hear that gift cards are so impersonal. Not true. For special needs families, gift cards are always a great option. A gift card empowers the child to make his or her own decisions. If the family has an iPad, an iTunes gift card is a great gift. Many kids with autism use their iPads for therapy sessions and for communication purposes. And the apps required can add up. Remember, you can always personalize a gift card by pairing it with a favorite kind of candy or snack.

Ultimately, it doesn’t matter how much you spend, it really is the thought that counts. So be creative. Think about the child and what the child would like. Because a great gift for a kid with autism could very well be a roll of bubble wrap, new LEGO blocks, a book about insects or an afternoon riding the train.

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The Things To Be Grateful For When You Are An Autism Parent

Wednesday, November 21st, 2012

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

Seeing him happy, makes me happy. And I am grateful that I can appreciate the moment. It’s that simple.

Tomorrow is Thanksgiving. As an autism parent, I am especially grateful for all of our victories – they are what keep me going. And they are often the everyday dull things that so many parents take for granted as their normal. I could easily list them. But I wanted to ask other autism parents —not surprisingly—I could identify with all of them.

These are the kind of things autism parents are grateful for:

I’m thankful that we have educational options in this country because school is not one size fits all. (Amanda, Confessions from a Household Six)

I’m thankful for a loving, affectionate daughter. Not many teens hold their mom’s hand in public without dying of embarrassment. (Jessica, Four Plus An Angel)

I’m thankful that we don’t take any milestone for granted, and that we celebrate every one achieved, big or small. (Mary, Both Hands and a Flashlight)

Support of family members who are willing to help out and drop anything when we need it. (Marj, The Domestic Goddess)

My son just sang along with the radio for the first time.  My family we grew up all singing along to the radio in the car all the time and I’d always imagined doing the same thing with my kids. (Jessica, Don’t Mind The Mess)

I’m grateful for the amazing teachers who take their work home at night to try to make the world a safer, better, easier place for my kids. (Alysia, Try Defying Gravity)

My whole perspective on what matters has changed. It’s not about academic achievements, soccer goals scored, awards won that matters with ANY of our kids. It’s just that they are living up to their own potentials and are happy. Having the kids I do makes me so much more appreciative of my husband. He’s stepped up to this without complaining or wearing out the way I do. (Lexi, Mostly True Stuff)

Morning snuggles, professionals and non who value my child, and trampolines. (Dawn, This Side of Typical)

Jack is doing a great job “sharing space” lately, which means we can cuddle under the same blanket and watch Mythbusters together.(Jennifer, Into the Woods, notes from jennyalice)

I am grateful for parent support groups, melatonin and heavy blankets. (Michelle, She’s Always Write)

I am thankful to be able to laugh even when things can be so, so hard. (Jennifer, Anybody Want a Peanut?)

I’m grateful that Nik was able to identify an emotion tonight. He told me “feel angry, mama no computer” when I asked why he kept hitting the keyboard on my laptop as he was eating dinner. I was on FB. (Beth, Maternal Instincts…flying by the seat of my pants)

I’m grateful for other parents who acknowledge they don’t fully understand my son’s needs, and ask potentially uncomfortable questions. There is no unwelcome question, in my book, only an unwelcome assumption. (Bil, Pancakes Gone Awry)

I’m grateful that Danny couldn’t care less about being cool. He is just who he is. He gets so completely, overwhelmingly excited over fun stuff like our Charlie Brown Thanksgiving and decorating the Christmas tree or building forts. He doesn’t care that those things are uncool. (Patty, Pancakes Gone Awry)

I am thankful that my boys not only made me a better mother but a better person. They have taught me to be a patient listener, to give grace before advice, and that some of the most beautiful moments are spent laying next to my boys on the living room floor watching the ceiling fan spin. (Sunday, Adventures in Extreme Parenthood)

You’re next. What are you grateful for?

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How To Be Friends With An Autism Parent

Wednesday, October 10th, 2012

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

Before we became parents, my husband, Joseph, and I had a pretty active social life. We went out to the movies, went out for dinner with friends, went to parties, we entertained.

During my pregnancy and after Norrin was born, our social life dwindled down a bit. (I honestly cannot remember the last movie I saw.)

After Norrin was diagnosed with autism, our social life practically became obsolete. It pretty much consists of therapists and appointments. And as our lives changed, so did our friendships. Some ended while others got stronger.

Fontanez Family & Friends

It takes a village to raise a child with autism. Parents need the support of friends and family—they cannot do it alone. 

Here are some ways you can be there for them:

Be Aware. Autism Awareness is a two way street. Become familiar with the diagnosis (at least the basics) and common terminology. Your friend will need you more than ever and if you have an understanding of the disability—that will make them feel less alone.

If you have “typical” kids, take the time to explain autism to them. It would be great if you could schedule a play date. Especially if your child is a year or two older—the older child can act as a role model for the younger one.

Be Understanding. Those first few months after a diagnosis, your friend may be distant or distracted. There may be times when they’re just not available. They may not pick up the phone when you call. It’s not that they don’t care about you—they may just be too overwhelmed to talk.

Understand that it will be hard for them to commit to plans. Childcare will always be an issue. Understand that they may need to cancel plans at the last minute. It’s not that they don’t want to spend time with you; it may just be a bad time. Keep extending invitations—they will be there when they can. You can always offer to come over with a bottle of wine and chocolate cake. I bet they’d really like that.

Just Listen. There will be times when your friend needs to talk, vent or complain. They may need to cry. Let them. You don’t have to say anything. It’s okay if you don’t offer advice (especially if you don’t have a kid with an autism diagnosis). Just let them talk and get it all out.

But don’t let autism rule the conversation. Try to talk about things that will make them laugh. Your friend will want to know about you too, she/he may be too preoccupied to ask.

Be Sensitive. Using the “r-word” or making jokes about kids on the “short bus” is not okay. It’s never okay to make jokes about special needs children. The r-word is especially cruel, demeaning and extremely insensitive. Remember that if your friend’s kid has an autism diagnosis, they are most likely taking a mini bus to school and/or they may also have an intellectual disability. When you use these words around your friend you are insulting and degrading their child. Eliminating these words from your vocabulary is just the right thing to do.

Make An Effort. Make an effort to understand their kid’s speech or gestures. Make the effort to get to know their kid. Ask questions. Take a genuine interest. Ask if you can sit in on a therapy session to have a better understanding of what it takes to parent a child with autism. If you have children, volunteer your child to participate in the session. I know our therapists love when “typical” kids join the session—it makes for great social interaction.

Offer To Help. There are many things about an autism parent you may not know. One thing you need to know about autism parents is that they rarely ask for help. At least I know I don’t. Maybe you do want to help and are just waiting for your friend to ask. If your friend is anything like me, they will not ask.

Instead of waiting to be asked, take the initiative. Ask “How can I help you?” or “What can I do to help?” If you pose the question in those terms, they just may take you up on the offer.

 

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