Autism Chat with Experts (a recap)

Wednesday, April 10th, 2013

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

Last Wednesday Parents and Easter Seals hosted an autism-themed chat on the Parents Facebook page.

I had prepared myself for Norrin to be diagnosed with autism. Throughout the evaluation process, I was reading and researching. But still hearing it from the doctor was still heartbreaking. It’s not the thing parents expect. But I knew I couldn’t allow myself to be sad for too long. Norrin needed me. (Lisa, AutismWonderland)

Parents can use CDC’s “Learn the Signs. Act Early.” tools to check their child’s development - http://go.usa.gov/yVm.  Every child is different & develops at his/her own pace, but by learning the milestones, parents can recognize if their child has a developmental delay. If you have concerns talk to your child’s doctor.  (Dr. Peacock, CDC)

What is the first piece of advice you would give parents after their child is diagnosed with autism?

Build a community of support and gather quality information to inform your child’s treatment. Personally connect with those available to offer YOU support (family, friends, faith community). Share news of the diagnosis and let them support you. Gather information and immediately get your child enrolled in quality treatment. There is a lot of misinformation out there about autism – use quality sources for information gathering. The CDC (www.cdc.gov/ncbddd/autism/index.html), the Association for Science in Autism Treatment (www.asatonline.org/) and the American Academy of Pediatrics (www.aap.org) are great places to start learning about quality treatment for your child. (Dr. Wright, Easter Seals)

How do you explain autism on a child’s level?

Don’t make it complicated or over whelming. There’s a great book called “My friend with Autism” by Beverly Bishop – It’s perfect to help kids understand autism. (Lisa, AutismWonderland)

While the chat made me realize that people are aware of and curious about autism, there is still so much unknown. I was really inspired by many of the questions parents asked me – questions that deserve more than one or two line answers. Over the next few weeks, I plan on answering some questions (in greater detail) about our experiences with potty training, school advocacy and socialization. So please check back here or my Facebook page (AutismWonderland) and look for them.

And if you have a question about autism, that you’d like me to answer – please feel free to leave it in the comment section!

Who World Autism Awareness Day Is Really For

Tuesday, April 2nd, 2013

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

It’s been almost five years since my son, Norrin, was diagnosed with autism. Before the diagnosis, I had no idea what autism was. What it really was. Growing up, I didn’t know anyone who had autism. And out of all my friends, I was the only one whose child had any kind of disability. I was scared and alone and no one could answer my questions. There was no one to offer any words of hope.

When Norrin was diagnosed in 2008, every 1 in 110 children had autism, a recent survey reveals that 1 in 50 school-age children have autism. In the last five years I’ve guided friends through the steps of having their children evaluated and diagnosed – giving them the insight I wish I had when we were going through the process.

I’ve learned that Autism Awareness goes beyond parents raising kids with autism. With autism becoming so prevalent – I don’t think anyone can afford to not be aware. This month is for you.

We live in a need to know society. I needed to know what autism was months before Norrin’s first evaluation.

If you’re the parent of a typical kid. You need to know what autism is because it can prevent bullying. Jill of Yeah. Good Times explains why in her recent post Everybody thinks it won’t be their kid.

Tell your kid that my kid likes to flap his hands, run back and forth, and talk to himself. Tell your kid that they might see this happening and feel uncomfortable because they don’t know what’s going on, and tell them that it’s okay to feel uncomfortable, and they can ask questions, but it’s not okay to make fun of him. It’s not okay to call him names, or point and laugh, even if their friends are doing it. Tell your kid that my kid does these things because it makes him feel good, and while that might seem weird, it’s totally okay.

If you’re in customer service, you need to know that some individuals need a little more understanding, patience and compassion – especially when they are on school outing. Because as Sunday of Adventures in Extreme Parenthood writes it is “during these instructional trips [that] our children are making strides to claim their rightful place among society.”

If you work in education – teachers, principals, psychologists or social workers, you especially need to understand autism because so many school-age children are undiagnosed and in general education classes. You need to know the signs so that you can help that child get the help he/she needs to be successful in the classroom.

If you’re in law enforcement, you need to know how individuals with autism communicate, you need to be able to read their body language.

Even if you’re not a parent of a typical kid, in customer service or law enforcement – you still need to know about autism. Leigh of Flappiness Is wants shoppers to stop staring at her son a because  ”every autistic child who has it, is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.”

And if you’re a new parent – you especially need to know about autism. Because if you know the signs and have a concern. You can have your concerns addressed by a professional as soon you suspect your child has a delay.

Today is World Autism Awareness Day and April is Autism Awareness Month. Whoever you are, whatever you do – you need to know about autism. This is the day, the month to learn. And you can start by asking questions.

Join me – along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH, and board certified behavior analyst Patricia Wright, Ph.D., MPH - tomorrow for a Parents Magazine’s Facebook chat. We’ll talk about the early signs of autism, treatment options and services, and I’ll share my own personal experiences parenting an autistic child. Readers can participate in the chat by asking questions.

When: Wednesday, April 3

Time: 1 pm est

Where: Parents Facebook page

For more information please click HERE.

Check some of my other posts to raise Autism Awareness:

• What To Say to an Autism Parent
• “He Doesn’t Look Autistic” and Other Misconceptions
• How to be Friends with an Autism Parent
• 5 Things You Don’t Know About an Autism Parent
• No Need to be Sorry and Other Things You Shouldn’t Say to an Autism Parent

Let’s Chat About Autism

Wednesday, March 27th, 2013

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

When this photo was posted on Parents Magazine’s Facebook Page, some wondered why I would even mention that my son has autism.

From the moment my son Norrin was diagnosed, I’ve been very open. I remember my mom first telling me that I didn’t need to tell everyone about Norrin. And when he was younger, it probably wasn’t necessary. But the older he gets, the more obvious it becomes. Rather than have people wonder, I’d rather educate.

There are so many misconceptions about autism. So many things that other parents and kids don’t know. And autism is unique to every individual.

There have been times when I’ve told people Norrin has autism and they’ll say something like, “Oh, I never would have guessed. I know someone with autism and they’re like ______.”

I talk about Norrin’s autism because I want people to know what our autism looks like.

I never fault anyone for not knowing about autism. But autism seems to become more prevalent, and the more I talk about autism the more I hear, I know someone with autism. I think autism is something everyone should know about – whether they have a personal connection or not.

Next Wednesday, April 3, Parents and Easter Seals will host an autism-themed chat on the Parents Facebook page from 1 to 2 p.m ET.

Join the Facebook event for the chat and remember to visit the Parents Facebook page on Wednesday, April 3 at 1 p.m. ET. We look forward to hearing your questions!

For more information please click HERE.

Survey Says: 1 in 50 School-Age Kids Have Autism

Wednesday, March 20th, 2013

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

When I was growing up in the 1980s, I didn’t know anyone with autism. I didn’t even know what autism was –  all I knew about autism was Rain Man.

Norrin was diagnosed with autism in 2008. At that time, the statistics were 1 in 110 kids were diagnosed with autism. Then last year, the statistics increased to 1 in 88.  And now, new numbers reveal that every 1 in 5o school age children have an autism diagnosis.

Is autism an epidemic? Is it being over diagnosed by doctors? Is it like ADD? Are parents more aware? Or do parents just need to ‘get a grip?’ Almost everyone has an opinion.

(And let’s not even get started on what people think causes autism.) 

I don’t believe autism is an epidemic to freak out about. I don’t think it’s anything like ADD. And if someone told me to get a grip about my kid…I’d have some words for them.

But I do feel that in recent years, there has been a heightened sense of autism awareness – especially among new parents. Yesterday, I met a dad who said his son started Early Intervention services at sixteen months old. Norrin was around sixteen months old when I first suspected something was wrong. And I waited until Norrin turned two to start the evaluation process. I think if I were concerned today, I wouldn’t have waited.

The new statistic also found “that many children were being diagnosed with autism after age 7.” Autism is such a wide spectrum and I can understand how so many children fall between the cracks. And other studies have revealed that minority children are often diagnosed later than white children.

While the new numbers are important and raise many questions – I don’t think that’s  the conversation we should be having – not right now anyway. I think as parents, as citizens, our main concern is ensuring that kids with autism are getting the services and support they need. Because those are the numbers I’m really interested in seeing.

What are your thoughts/concerns on the latest autism numbers?  

The Fine Line for Autism Parents

Wednesday, March 13th, 2013

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

When Norrin was younger, before he was diagnosed with autism, friends and family used to make fun of the way I hovered around Norrin. “Bubble Boy,” my one friend liked to call him. And family would urge me to sit down, to relax and let Norrin be.   They all said, he was just being a boy – but he was a busy kid – constantly running around, getting hurt or into something he shouldn’t.

After Norrin’s diagnosis, I hovered even more especially when we were out visiting or in crowded places. When out walking – I never let go of his hand. I have this fear of letting go.

But Norrin is seven now and becoming more independent every day. I need to let go and let him experience things without me hovering behind him.

A few Sundays ago my husband, Joseph, decided to register Norrin for his first Road Runners Kids race. I was okay with Norrin running up until we got there and I saw the crowd. Street blocks filled with “typical” kids and their parents, music blasting and bitter cold winds. Naturally my mother hover instincts kicked in. As we waited I held his hand and put an arm over his shoulder. And every few minutes I kept asking if he was tired or wanted to go home. All he had to do was say the word and we were out of there. But Joseph was determined for Norrin run the race.

I wanted to keep Norrin “safe,” Joseph wanted Norrin to take a chance. This is the line we walk along constantly.

Like when we went to Sesame Place and Joseph insisted Norrin ride on the roller coaster. I thought it would be ‘too scary’ for him. Norrin loved it!

Or that time we went to the The Intrepid and Joseph took Norrin on the Gforce Encounter Simulator ride. We spent a good fifteen minutes arguing  discussing whether or not it was appropriate for Norrin. The thing was enclosed and went upside down. When Joseph and Norrin got on, I had to walk away. When the ride was over, Norrin stepped off with a huge grin wanting to “go again.”

And that Sunday, Norrrin ran his race and had a great time.

Thinking of all this reminds me of that Parenthood episode – the one where Max wants to run for student body president. Christina encourages Max to go for it while Adam thinks its a bad idea. Adam is scared because he assumes Max will lose. And when Max won, I was on my sofa sobbing like a baby.

All parents want to protect their children but when your child has special needs – your life sometimes revolves around wanting and needing to protect them. There’s a fine line between knowing when to hold on and when to let go. And that line becomes easily blurred. I’m grateful I have a partner like Joseph who helps me to see the line clearly.

Do you having trouble knowing when to hold on or when to let go?

Please tell me, it’s not just me.