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Prompting Conversation And Communication With An Autistic Child

Thursday, August 28th, 2014

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

My son, Norrin, has been working with a speech therapist for the last six years – ever since his autism diagnosis. At the time he was diagnosed, he had no language or communication skills. Recently, Norrin saw a picture of me that prompted him to ask me 5 appropriate questions in a row. I was beyond excited! Since then, I’ve been finding ways to build on his conversation skills.

Linda M. Reinert, speech language pathologist and author of Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties, encourages parents, teachers and caregivers to “expect communication.”

Tempting as it might be, stop trying to read the child’s mind. Consider what the next level of communication might be and expect that…expect the child to respond in a way that just a bit more difficult than [his or] her current means of communication.

I always try to keep that in mind when I talk to Norrin. He’s been much more expressive and so now I expect a little more each time we talk.

Here are my 6 simple rules for prompting conversation with my son:

Set the mood. Make sure your child is relaxed and ready to talk. Turn off all distractions so they can focus on you. And give yourself at least 10 – 15 minutes to commit to giving them your full attention. Go for a walk in the neighborhood and talk about what you see. Sit at the table while they are having an afternoon snack. I like talking to Norrin right before bed. He’s had his bath, he’s winding down and open to talking.

Keep it simple and specific. Don’t go into a whole monologue and/or fire off a bunch of questions. Use simple language and ask them one specific question at a time.

Follow up. Conversations are all about the follow up question. Build your conversation based on the answers your child provides.

Be patient and wait for response. Some kids need a few minutes to digest the question and think about the answer. So wait a minute or two.

Repeat and/or rephrase the question. If you’ve asked a question and too much time has passed. Ask again. If you have to ask a third time, rephrase the question. If they need help, provide two choices or use pictures and have them point.

Look for inspiration. There is inspiration everywhere. Show them a picture of something fun you did together and ask your child about it. Sometimes I’ll point out something as we’re walking around the neighborhood and ask him to tell me about the specific object.

It really doesn’t matter what you talk to your child about. The important thing is to take the time to talk to your child and get them into a back and forth dialogue. And with each conversation, always expect a little bit more.

And from my other blog:

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From Special Education Teacher to Autism Mom Blogger

Wednesday, August 20th, 2014

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

When Norrin was first diagnosed with autism, I didn’t know anything about the diagnosis or navigating the special needs system. I was able to talk to friend of a friend who was a speech therapist. She provided the emotional support I needed and helped me better understand the process. A few years later, her son was diagnosed with autism. She called me up crying and I gave her the support she needed.

Being a special education professional doesn’t always make the diagnosis easier to accept or understand.

No one knows that better than Mama Fry who writes the blog Autism with a Side of Fries.Written with honesty and humor, Mama Fry doesn’t pretend she knows all the answers – even though she once worked in special education. She even wrote a post about her experience sitting on the other side of the IEP table.

Earlier this month, I got to ask Mama Fry a few questions:

What did you know/think about autism when you were a special education teacher?

Not nearly enough. I haven’t been in a classroom for about 9 years now and much has changed. Back then it was more about getting kids to be all the same or “normal” rather than celebrating and tapping into their skill sets.

How did you advise autism/special needs parents?

My area was vocational training. I was thinking past school. Getting them ready for what real life job situations might happen. Most of my conversations with parents then was problem solving behaviors or trying to figure out accommodations that would suit their kid best.

What was it like when your son was diagnosed?

Surreal. It absolutely never occurred to me that he might have autism. I thought it was a speech delay and that’s it.  I was truly gobsmacked. I had recently stopped working outside the home because working with autism was burning me out. Surprise! It came to live with me instead.

How have you changed since? 

I understand how each kid is just so different. My son is not just a name on a page to me. He’s my heart.  I can’t punch out at the end of a shift. Behaviors are communication not just non compliance.

What advice would you give to special ed teachers who don’t have special needs kids?

Ask about what’s going on at home. Sleep is a huge factor. Eating too. Realize the student you have, their behaviors could be based on those two things a lot.  Ask what concerns the parents the most. Share what’s working in class.

Catch up with my last post: A Little Girl Gets a Second Chance at Childhood

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

And from my other blog:

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A Little Girl Gets A Second Chance At Childhood

Wednesday, July 16th, 2014

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

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

And from my other blog:

Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

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A New Bike Built For Kids With Special Needs

Wednesday, June 25th, 2014

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

Jyrobike is the World’s First Auto Balance Bicycle that features a patented Control Hub in the front wheel that uses gyroscopic technology to keep riders upright, even when they tip or wobble.

Riding a bike has not come easily for my son, Norrin. After he was diagnosed with autism, we learned that he didn’t have the strength or the coordination to pedal. For years we’ve worked with therapists trying to build up Norrin’s muscle strength and teaching him how to balance. We’ve bought tricycles, big wheels and even scooters – hoping Norrin would be able to master one. Eventually Norrin learned to pedal but he still lacked the focus, tired easily and had difficulty maintaining balance.

Last spring, we bought Norrin his first real bike. And while he showed an interest in riding it, he still needed a lot of work. Even with the training wheels he still had trouble with balance and had difficulty turning. Now that bike is too small and we’re wondering whether or not we should buy another. Norrin will still need training wheels and it may be years before he learns to balance independently.

That’s when I heard about the kickstarter campaign for Jyrobike I knew I had to share it! It’s the ideal solution for kids like mine. “Jyrobike is built on the core principle that bikes become inherently stable at higher speeds because the faster the wheels spin, the more balanced it becomes.” While originally designed for 3 – 8 year olds, “one of [the company's] stretch goal rewards will be very popular with parents of older children.” There are also plans to launch an adult product.

Jyrobike will change the lives of so many families with special needs, especially kids with autism. It allows children to learn to ride a bicycle with confidence and a sense of security. It will provide the physical activity they need to maintain their health and it’s a social activity that can be shared with family and friends. Bike riding is a skill that can lead to a more independent life.

To learn more about Jyrobike visit http://www.jyrobike.com.

Catch up with last week’s post: How Not To Handle a Public Meltdown

And from my other blog:

 

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How Not To Handle a Public Meltdown

Wednesday, June 18th, 2014

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

Being an autism mom can amazing as well as challenging. As a mom, the amazing is easy to handle. I cheer every single moment and milestone because I know how hard my kid works. But the challenging stuff? The stuff that keeps me up at night or the things that make me see red – there’s no hand book for that.  And sometimes my initial instinct isn’t always the best reaction.

It happened in a fast food restaurant. My son, Norrin, and I were sitting at a table waiting for my husband, Joseph, to bring over our food. I handed Norrin his iPad while we waited. We were on vacation, completely out of our routine and it was an unbearably hot day. All Norrin wanted was to return to the hotel pool.  And there was no WiFi connection and Norrin wanted to watch a video on YouTube. All the ingredients for a major meltdown.

I calmly explained to Norrin that we were for Dad to return with our food. We were going to eat and then go back to the hotel. Usually Norrin is fine. He doesn’t need visual cues so long as I tell him what comes next. But the last few days Norrin had been having a hard time. And in that crowded fast food restaurant, my 8 year old son started to cry and scream. I remained calm and tried to comfort him with words, smoothing his hair away from his face. But he didn’t stop. His face was bright red and his nose runny, tears streaming down his face.

That’s when I noticed a table of three men staring at Norrin; their eyes wide open and lips curled in a smirk.

“Is there a problem?” I demanded. And when they shook their heads no, I yelled “Then why are you staring.” I was all New York Latina attitude, neck rolling and hand waving. I glared at them until they looked away and went back to eating.

Joseph had returned with our food and managed to calm Norrin down. Unlike me, Joseph had ignored the men and focused on Norrin.

I’m not usually that bold to confront a table of men. But I had been feeling overwhelmed and my Mama Bear instinct just went into full gear. In retrospect, it was the completely wrong way to handle the situation. What if one of those men did have a problem? Was I truly prepared to take on three men? I cannot put myself or my family in that kind of situation. I may not be able to control how others react to Norrin, but I am in total control of how I react to them.

During a public meltdown, the only person that matters is my kid. I have to tune out everyone else, ignore the stares, the smirks, the finger pointing. While it may not have been my finest parenting moment, it was definitely a lesson learned.

Have you ever confronted a stranger for staring at your special needs child?

Catch up with last week’s post: Six Years Later, I Am Still Learning To Accept Autism

From my other blog:

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