Posts Tagged ‘ Learning disability ’

Should Special Needs Moms Have Their Own Mother’s Day?

Wednesday, May 7th, 2014

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

With Mother’s Day approaching and Father’s Day next month, I am reminded of something my friend, Jessica, posted on Facebook. Jessica was having one of those up-and-down days only a special needs parent can understand. The mom of three kids, Jessica’s 9 year-old son has autism.

As I direct my son to pick up his chewed up and spit out pretzels from around the house for the umpteenth time today and have my sleeve tugged on yet again before I prompt him to tap and say excuse me, and hold him tightly to get him to stop hitting his own head, and then bathe in the sweetness of his beautiful smile when he tries to climb his 9 year old sized body into my arms, I do believe there needs to be a mother’s day specifically for moms of kids of special needs. Yes…parenting all kids is challenging. But sorry folks, on a day to day kind of level, it’s just not the same thing.

I don’t like to play the “hardship olympics.” But when I think about all the ways parenting a child with special needs is different…it makes my head spin. At the same time, I am still a mother and I’m celebrated on Mother’s Day.

I reached out to other special needs moms for their thoughts on whether or not special needs parents deserve their own day. Here’s what they had to say:

…Sometimes you feel like no one in your life acknowledges how much extra effort you have to put into everything, how much has been handed to you that you’re not able to do, and all the additional worries you have about your child’s future. It would be nice to have a day set aside to acknowledge that just once. [But] I don’t want my kids to feel that their differences are a reason we should be singled out as a family, whether it’s them or me. I am still trying to learn how to walk the fine line of celebrating what makes us unique and not focusing too much on what makes us different. — Jessica, Don’t Mind the Mess

I have mixed feelings on this. I do think we deserve props for all that we do as special needs parents–and we do a LOT. And then some! But I hesitate because there are times when I feel a gap between me and parents of typically-developing kids, and I’m not sure I’d like to further distinguish ourselves. One thing’s for sure: Our families should totally kiss up to us on Mother’s Day–and Father’s Day too! — Ellen, Love That Max

Being a mother to children with and without special needs, I definitely believe we deserve a day of our own. As a special needs parent you are faced with so many obstacles. A simple trip to the local park requires special planning and strategizing. A special needs parent has very little ”me” time. I think it would be great if there were a day to celebrate our hard work and accomplishments. — Lizette, Diary of a Loving Mom

I do not think it is necessary. We already have a general mother’s and father’s day. Let us continue to celebrate [special needs parents] in our own unique ways. There is really no need to have separate days. Right now my son can’t tell me I love you or Happy Mother’s Day, so I have to think outside the box on Mother’s day and remember that he loves me regardless. – Kpana, Sailing Autistic Seas

Whether or not you agree, this Mother’s Day (and Father’s Day), be extra nice to the special needs parent in your life. April was Autism Acceptance month – a time to raise awareness and acceptance for individuals with autism. Special needs parents need acceptance too. Just like we celebrate our kids for all that they do, sometimes special needs parents require the same recognition from their family and friends.

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Tell mom you love her this Mother’s Day with an “I Love You” bookmark.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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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.”

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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.

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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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Little Signs Of Independence When Your Kid Has Autism

Wednesday, February 12th, 2014

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

These days, we’re letting him take the lead.

Five years ago when Norrin was diagnosed with autism and started Early Intervention, we had a team of therapists in and out of our apartment. We focused on teaching Norrin how to ask for help. “Help” was one of the first signs he learned and “I need help” was one of the first three word sentences he said.

The irony is that as soon as Norrin began saying “I need help” spontaneously and independently, I prompted him to do the thing that requested help with, himself. Even if he couldn’t do it, I wanted him to at least try before I stepped in to help.

Norrin is eight years old and he still needs my help with many things. The challenge is figuring out when he needs my help and knowing when to let him be. Lately, Norrin’s motto has been “I can do it, all by myself.” He wants to brush his teeth and pour his juice and wash his hair all by himself, pushing my hand away when I try to help. Some days, we walk down the street and he doesn’t even want to hold my hand. And just last night, he took his first selfie! I love these little signs of independence. It’s a good thing. We want Norrin to be as independent as possible.

But independence can be messy.

Norrin doesn’t do the best job at brushing his teeth. When he pours juice, he almost always pours so much, it spills over the top. When Norrin washes his own hair he doesn’t know to rinse all the soap out. And when we’re walking, Norrin has difficulty navigating busy sidewalks. He doesn’t know to look both ways to cross the street.

Norrin craves independence but he still needs my help and my hand. And instead of doing for him, I am learning to guide him. I let Norrin squeeze toothpaste on his brush and let him brush his teeth. When he says he’s all done, I tell him it’s my turn and I brush his teeth again. When he wants something to drink, I stand nearby and let Norrin pour his own juice but I tell him when to stop. And if he spills juice, I make him clean it up.

I’m not going to lie. It’s easier, neater and faster to do for Norrin rather than letting him do things on his own. But if isn’t taught to do these little things for himself, how can he do the bigger things? The little things are the baby steps to an independent life.

Is your child showing signs of independence? How are you letting them go?

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What Is Autism?
What Is Autism?
What Is Autism?

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New Year, New Goals For My Son With Autism

Tuesday, December 31st, 2013

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

 

 

If you have a school-age child with special needs you know about IEP goals. IEP stands for Individualized Education Plan; the goals are created to meet the specific educational needs of the child. My son, Norrin, has an IEP and I’m satisfied with his educational goals. But there are some other things that I know I need work. And not everything can be taught during the school day.

Norrin will be eight years old next month. In many ways, he’s a “typical” boy but in other ways, it’s tough. And the things that come easily for other kids and parents, requires more for us. These are three of things we’ll pay extra attention to this year.

Playdates. We don’t do many playdates. There just isn’t enough time but I really need to make more time to fit this in our schedule. Norrin doesn’t have many friends but he has an interest in other children and he wants to play. Play and forming friendships doesn’t come naturally to him. They are skills that need to be cultivated. I know they work on play skills at schools but I want to teach him how to work on friendships outside of the classroom.

How to Get Dressed. Norrin still requires a lot of help with self-help skills like dressing and bathing. He understands what needs to be done but he doesn’t always understand the sequence of steps. This year I want to work on helping Norrin pick out his clothes and putting items on the right way.

Night Time Potty Training. It took us a few years to potty train Norrin during the day. But at night, he still wears a pull-up. I really would love to get him night time potty trained. I know it will take time. I know it will take work and dedication. A few months ago, I received the book 7 Steps to Nighttime Dryness; I plan on following the steps and using a nighttime alarm to help us achieve our goal.

What goals would you like your child to work on this new year?

 

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This Is My Son. This Is Autism.

Wednesday, November 20th, 2013

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

With my husband, Joseph, and son, Norrin. Celebrating Joseph’s birthday at one of our favorite restaurants.

“I don’t understand autism,” a friend said while we were eating dinner. We’ve know each other since grade school and hadn’t seen each other in a while. We were catching up and asking about our families. Though we are close enough to ask each other almost anything, I could tell she was uncomfortable admitting she didn’t know much about autism. I couldn’t blame her. I didn’t understand autism either, until I had to.

Autism isn’t something that can be easily summed up in a sentence. Or a blog post for that matter. And I was at a loss at how to explain it to her so that she could understand. I told her about Norrin and the progress he’s made. We talked a little about the future. And then like long time friends who hadn’t seen each other for a while, we immediately moved on to another subject.

But I’ve been thinking about our conversation since. I thought about the This is Autism Flash Blog in response to Suzanne Wright’s Call For Action. Wright believes that parents raising kids with autism are “not living,” they merely exist. And that we live in despair.

I know last week, I wrote about how autism wasn’t a crisis and I stated my reasons why I still (sort of) support Autism Speaks. I still stand by that. But I can’t and don’t believe that we live a life in despair. And that’s not ever the impression I want to give anyone. Yes we have our challenges, but we live our lives.

This is Norrin. He’ll be eight in January.

Norrin’s a happy kid with a quick wit. And like most little boys, he thinks fart jokes are hilarious. He loves building with Lego bricks, drawing, watching cartoons and eating cheese burgers. He loves playing video games and running around the playground.

Norrin especially likes going out to eat at restaurants and likes to place his own orders when we’re out. He knows exactly what he wants and always says please and thank you.

Norrin attends a special education school for kids with autism. He likes his teachers and has friends in his class. And when we sit down and do homework, I have flashbacks of my childhood sitting at the kitchen table with my mother. Academically, me and Norrin are alike in many ways. We both love to read and it comes easily, but math is difficult.

Norrin has a few kids he considers friends, kids he’ll ask for because he enjoys their company. But if there are too many kids in a room, he’ll prefer to play alone.

Norrin isn’t lost or trapped within his own world. He lives in our world. And he knows he’s a part of it. Norrin loves us and he knows that he is loved. And it’s the love that keeps us going.

As I’m typing this, I’m reminded of a line in one of my favorite movies, Auntie Mame (if you haven’t seen it, SEE IT! It’s fabulous!) when Mame says: Life’s a banquet and most poor suckers are starving to death!

I don’t want to starve to death (especially since I’m a gal who likes to eat). And I don’t want Norrin to starve either. I want him to experience life as much as he can and to enjoy it. That’s what we’re teaching him.

This is autism for our family.

What does autism look like for yours?

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