Posts Tagged ‘ Autism inspiration ’

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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Spreading Awareness, Acceptance and Making an Autism Fashion Statement

Wednesday, April 23rd, 2014

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

Over the weekend I attended an Art for Autism Fundraiser and I got to meet Nell Escalante for the very first time. Nell is an art/museum educator, DIY fashion redesigner, blogger and an autism mom. Both of Nell’s sons – ages 11 and 7 – have autism and are “on opposite ends of the spectrum.” Nell’s older son is “high-functioning practically Aspergers” while her younger son is “non-verbal, super active [and has] sensory issues.”

Nell and I have been on line friends for a few years and I wanted to support her as well as the other local Bronx artists. She donated three of her designs (see above) to the fundraiser. Nell’s “If They’re Gonna Stare” collection was inspired by her younger son. “I get a lot of stares when I’m with [him]…so I figure, if they’re going to stare might as well make it worth their while and look good,” she said.

But Nell didn’t always combine fashion with personal experience. When she initially set up her Etsy shop and blog back in 2008, she admitted to being “overwhelmed with autism talk and needed a space to be just Nellie.” While she never hid her sons autism, Nell knew she didn’t want autism to be “at the forefront of [her] blog.” Among her friends, Nell was known as “the Autism Mom” and felt like she was losing her identity.

“I wanted [my] blog and my shop to give me a voice. The voice of a woman, an activist, a lover of fashion, a creative being, a designer, a mom. But not an autism mom.”

After a few years, Nell realized that her journey was important and that being an autism mom was as much of her identity as everything else. It was through art and pursuing her own passions that Nell was able to come to this awakening. And now she encourages other mothers to continuing doing what they love to do because it will be thing that gets you through.

“When I went back to art…I became a better mom, a happier mom. Art saved my life. You don’t have to be a martyr to be a good mom. Autism is transformational, if you let it, it can make you better, not bitter.”

 

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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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Best Kept Secret: When Kids With Autism Grow Up And Age Out

Wednesday, April 9th, 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, is eight years old and I try my best to focus on where he is now rather than worry about the future. But if it’s one thing I’ve learned about motherhood is that the years fly by. Eventually Norrin will age out and the special education “safety net” will be lifted. I feel lucky that Norrin’s school goes up to 21 years old but then what? Will he be able to get a job or live independently? Will he have the tools to face the world as an autistic young man?

Those are the questions the critically acclaimed documentary, Best Kept Secret tackles.

At JFK High School, located in the midst of a run-down area in Newark, New Jersey’s largest city, administrators answer the phone by saying, “You’ve reached John F. Kennedy High School, Newark’s Best Kept Secret.” And indeed, it is. JFK is a school for all types of students with special education needs, ranging from those on the autism spectrum to those with multiple disabilities.

Janet Mino has taught her class of six young autistic men for 4 years. They must graduate from JFK in the spring of 2012. The clock is ticking to find them a place in the adult world – a job or rare placement in a recreational center – so they do not end up where their predecessors have, sitting at home, institutionalized, or on the streets.

Last night I had the opportunity to hear Janet Mino speak at an autism parents support group. I was inspired by her devotion and wished that there were more educators with her mindset. One of the things she said that really resonated with me was about communication. Everyone can communicate, even if they are non-verbal – their behaviors are how they communicate. We have to take the time and figure out what they are trying to say. A tough love kind of teacher, Mino strives to teach her students to live without being prompt dependent, urging parents and caregivers to do the same. “It’s a harsh world. We must prepare our kids to face it.”

It’s autism awareness month and magazines and media share the stories of children with autism. Like any other kid, children with autism grow up. Services and resources are critical at every age but as autistic individuals grow up, the resources and services dwindle down; options are extremely limited. Those are the stories that need to be heard too.  In a interview with Kpana Kpoto, Mino advises, “Even after 21, still find ways to build them up. They need support. Plan early.  In order for parents to plan early, we need to be prepared and know what to plan for. Best Kept Secret sheds light on the things parents need to know. It’s a must see for any parent or caregiver of an autistic child and for teachers wanting to better communicate with their special needs students.

Have you seen Best Kept Secret yet? If not, it’s available for download on iTunes (for personal use) and on the Academic Video Store (for educational use).

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