Posts Tagged ‘ raising kids with special needs ’

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

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Nighttime Potty Training: UPDATE

Wednesday, May 14th, 2014

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

Back in January, I shared that we were about to begin Nighttime Potty Training and I thought I’d give you an update.

Yeah. We’re not done yet. Not. Even. Close.

I’m going to be completely honest. My husband and I are at odds about it. I am ready to quit and just go back to diapers/Pull-Ups at night. And my husband is determined we stick to it.

I knew that it was going to take time and that I needed to be patient, but I am exhausted. I have washed sheets, blankets and pajamas almost every day since January. We are going on vacation in a few weeks. Is nighttime potty training something I want to deal with while at the most magical place on earth?

We’ve tried rewards, alarms, limiting liquids close to bedtime and waking up in the middle of the night. He’s just not getting it. Day time potty training and nighttime potty are two totally different things. And being successful during the day, isn’t always a guarantee for nighttime dryness. Going back to diapers at night doesn’t mean I’m giving up on my son. It just means I’m giving him more time.

Would love to hear your nighttime potty training updates!

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Birdhouse For Autism: An App To Make Autism Parents Life Easier

Wednesday, April 30th, 2014

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


I bet you have a calendar where you write everything down. Phonebooks, memo pads, notebooks or scraps of paper with scribble on it. When you’re an autism parent, your life is all about keeping track of progress, meltdowns, bowel movements and sleep cycles. You have countless appointments and therapists numbers to remember. I know I do and no matter how organized I try to be, I still don’t have everything in one place. As a mom constantly on the go, it’s impossible to have Norrin’s information accessible to me at all times. And to be really honest, I can barely remember  the  passcode to  my iPhone –  I need everything written down or else I’ll forget.

I just downloaded Birdhouse for Autism; it’s an app that “keep[s] a running, searchable log of your child’s daily activities and behaviors, so that you can figure out what’s working and what needs to be changed.” The app was created by autism parents, Ben Chutz and Dani Gillman.

“We needed a better way to manage and organize all this stuff, and it was apparent to us that many, many other families needed a better way as well,” said Ben.

Unlike any other app, Birdhouse for Autism you can monitor your child’s day-to-day progress. Accessible via iPhone, Android or the web, parents can view and track their child’s sleep cycles, diet, bowl movement, moods, medications and any other information you’d like to note. You can also keep track of your therapists information, including how long they have worked with your child.

“In its current version, Birdhouse works best for families who are already in the habit of keeping some type of notes on their child’s day to day progress, or who have something that they are paying special attention to in their child. For example, one family was able to get a referral to a neurologist from her child’s pediatrician by tracking her sleep cycles. Another family used Birdhouse with their son’s special education teacher to build a case for the IEP meeting that her son be relocated to a classroom better designed to suit his needs.”

There are two types of memberships: free and premium. You’ll need to create an account on a full size (desktop/laptop) browser prior too using Birdhouse app. The free membership only allows you to log/track the current day but weekly progress must be viewed via web. The premium membership allows you to have all your child’s information on your phone and allows you to share the information with up to 3 other individuals. What makes premium membership especially unique is that it’s a “name your own price.” Families pay either $1 to $20 per month for the Birdhouse for Autism app.

I am excited about the Birdhouse for Autism app because I’ve been thinking about medication for Norrin. I know the app will make it easier to monitor. All of my information will be neatly and safely stored in one place that I will be able to access any time I need it.

Have you used the Birdhouse for Autism app? Would love to hear what you use it for?

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A Conversation with Ron Suskind, Author of ‘Life, Animated’ a Story of Sidekicks, Heroes, and Autism

Wednesday, April 16th, 2014

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

It’s not every day I get to chat one-on-one with a Pulitzer Prize winning journalist. But Ron Suskind, author of Life, Animated, immediately put me at ease. We both shared a common connection – raising an autistic child. Twenty years ago, Ron and Cornelia Suskind’s son, Owen, was diagnosed with autism. Life, Animated chronicles the Suskind family journey and “powerfully reveals: how, in darkness, we literally need stories to survive.”

***

Life, Animated is so different from your first five books. When did you make the decision to share your story? And what was it like to write about something so personal?

I lived a pretty public life over the last 25 years, as a national affairs writer for the Wall Street Journal and the books…Life, Animated is my 6th book. With so much going on publicly, it was important to keep some core of privacy. It’s easy to write about pretty tough stuff when it’s not about you. So it was a tough decision and had a bit of a funny revolution.

I started my first book, The Hope of the Unseen (started as a series in the WSJ that won the Pulitzer Prize for feature writing), a month after Owen was diagnosed. As I went into this blighted urban school in the worst part of Washington and saw a whole building full of kids who were very much left behind…I looked at them differently having someone who was already so dramatically left behind living in the bedroom. I saw the way people stared at my son. In the other books that followed that first book, I was in Afghanistan and Pakistan, wrestling with presidents. And it became clear to me, at some point, that I had been writing about people left behind all over the world and the most dramatically left behind person, was in many ways Owen…who had no place at the table.

We lived in a planet of story and journalism. And friends – who were also journalists – would ask if we would write about Owen…[they said] it could be a great thing for people with autism, you’ve learned things that could be of value to others. But we mostly stayed out of that, we had our hands full.  When Owen was around 19, he really started to attain a self-awareness that we thought he would never get to. He was saying in various ways, that he was a special person and wanted people to know who he was. That started a conversation (around four years ago). It got to the point, where Cornelia and I, looked at each other and said: Can we turn the hot light of investigative reporting – what we’ve done our whole life – on ourselves? It was an emotional inquiry and a very tough decision. Basically Cornelia posed the question, “Could a book like the one we would write, could that have been of value 15 years ago when we were so lost, to us?” And of course, that was a yes.

Denial – especially in the early stages of autism, is a natural response for many parents. You share something that a family friend tells you – “Respect denial. It’s there for a reason: a way to cope with what we cannot face.” At what point do you think you and Cornelia were ready to face autism? 

I don’t think Cornelia and I separated there. We both tiptoed along mostly side by side. We felt immediately the weight (in 1993/94) of the word autism and what that word seemed to indicate. As Owen starts to grow through the middle years of 5, 6 t0 11 – [we realize autism, PDD-NOS and Asperger's] it’s just a label game. I think it was a gradual process of giving up these notions or expectations and how those expectations distill  themselves into hope for a certain set of outcomes. As we started to give those things up a bit, the labels became less important and the natural issues of denial faded. And it happens within a few years.

How have your hopes and dreams evolved for Owen?

In a way that’s fascinating. You make life with what’s in front of you…Owen has stitched together a life. We try to appreciate – as Owen does – what’s in front of him and a lot of the expectations [that we used to have] we just don’t carry them around anymore. Owen is autistic and will be autistic the rest of his life. He still has many, many challenges. But we want Owen to live fully, to feel his life fully. And to have choices. That’s the big thing – to have as many choices as possible. We want Owen to be able to live an intentional life on terms that he needs to live it on. To be supported so that he can try things, that he hopes for things, that he can reach for things. Owen is now sufficiently self-directed and has built enough capabilities that you feel that happening. It happens in the pages of the book.

What are your favorite Disney movies?

The four favorites are the ones that have been the most useful to use, The Big Four: Beauty and the Beast, Aladdin, The Lion King and The Little Mermaid. They were central to Owen’s emergence.

I know Life, Animated will resonate with many autism parents. What do you hope people outside the autism community will take away from reading your book?

We had many nominations for possible titles and the one Cornelia liked was, I Want So Much More Than They’ve Got Planned – the last line of the ‘I Wish’ song from Beauty and the Beast. I sang that with a group of autistic kids at the United Nations [on Autism Awareness Day]. If we can manage to allow [individuals with autism] with all their self-directed energies to discover so much more than we’ve got planned, then they will be better off and more importantly we will be better off.

Owen sees himself as “the leader of the sidekicks” and you dedicate the book to your older son Walt, “a real life hero”  - would Owen agree? 

Oh yeah. When Owen built the sidekicks philosophy, he started applying sidekick characters to us. So for birthdays or whatever he would make you card and draw a sidekick. I was often Merlin or Rafiki. Cornelia was often Big Mama – the wise owl from The Fox and The Hound. But the only one Owen drew as a hero was Walter – Aladdin, Eric or Simba. [Cornelia and I] realized that the dynamic of Owen and Walter’s relationship was arguably the most important in either of their lives.

It’s interesting because now Owen has come to realize that we are all sidekicks really, searching for qualities of the hero within ourselves.

***

Since publication, their site lifeanimated.net was created to keep readers informed about the book and to create a place for a community of people who want to connect and share the affinities of their children. Readers are invited to contribute to the Autism Artists Project, by uploading an image or link to a video of art made by an autistic artist.

 

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How To Help Your Child With Separation Anxiety

Wednesday, March 26th, 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, is eight years old and has autism. When he was a baby, he had no problem when I left him with the babysitter so I could go to work. Even as a toddler, the first time I put him on the little yellow school bus – he didn’t cry. And while it hurt to think Norrin didn’t care leaving me, it would have felt so much worse if he had. But over the last year or so Norrin has had difficulty when we separate. That’s the mother and son phase we’re in now.

It’s tough seeing my son in distress every time I walk out the door or have to leave on a trip. Here are 8 things I’ve been doing to ease his anxiety.

Mark it on a calendar. We talk about the days of the week and the months on a daily basis. During the times when I travel, I print out a separate calendar and mark the day I leave and when I return. While I’m away, my husband, Joseph, goes over the calendar with Norrin. I also communicate with his teacher so they can do the same, if Norrin becomes upset during class.

Map it. Last year, I went to California and before I left, I picked up a puzzle map of the United States. I showed Norrin where we lived and then showed him where I was going. Not only does the map help Norrin with the States, but it gives him a sense of where we are.

Show them where you work. Norrin has been to my office several times and he likes being there. And I’ve also taken Norrin to his dad’s job. Norrin knows where we work – it’s not some imaginary place. When we tell Norrin that we’re at work, he knows exactly where we are. I think knowing creates a sense of security.

Create a visual schedule. Many children with autism respond well with visual schedules. They like to know what’s next. By creating a visual schedule, you can let your child know when they can anticipate seeing you again. AutisMate is a great app that allows you to create a personalized schedule.

Time. We talk about time a lot. While Norrin doesn’t understand the concept of telling time – we tell him what time we’re doing things. We show him the time on the clock. On nights when I work late, Joseph tells Norrin what time I will be home.

Make time for Face Time. Modern technology helps families stay connected. When I’m away, I schedule a time to Face Time with Norrin. He doesn’t stay on for long but he gets happy seeing me.

A pictures speaks a thousand words. In the digital age, photos feel like a thing of the past. But I keep family photos in Norrin’s room so that he sees us. Sometimes a picture in your child’s pocket can be the comfort that they need.

Promise a special treat. Whenever I travel, I always promise to bring a little gift back for Norrin. Nothing extravagant – even a peace of candy will make him happy.

Does your child experience separation anxiety? What do you do to help them work through it?

Plus: Find cool activities to keep your kiddo occupied while you’re away.

Living Life with Sensory Issues
Living Life with Sensory Issues
Living Life with Sensory Issues

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