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Don’t Tell Mom the Babysitter’s Fat

July 29, 2010 33 comments

This guest post is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

I needed a babysitter, and I was at a loss.

At the time, my three boys were eight, six, and one and a half. Finding a sitter for three young children is not easy under the best of circumstances, but since our oldest Matthew has autism finding help was always a tremendous challenge.

Our usual choice was Rocky, my friend Laurie’s fourteen-year-old son. He was a great kid who handled Matthew’s odd behavior with humor, and was loved by all three of my boys. I knew that if he were in a pickle, he could call his mom for advice or rescue, but he never needed to.

My husband and I had an all day company party to go to, and since Rocky wasn’t available, I asked his mom if she knew anyone else who might be able to handle our quirky crew.

She said she’d ask Anna, a friend of hers who had just moved from England to be a nanny for a family in our community. Anna had worked at a school back home for disabled children and was looking for work on her days off.

Jackpot.

I phoned Anna, and explained our situation. She bubbled back with her amazing qualifications, including a special education teaching credential and CPR certification. She had decided to take a year off to be a nanny in the United States and was interested in finding babysitting jobs on the weekends. I immediately had fantasies of a weekend away, which we badly needed, while this perfect person took care of the kids.

Saturday arrived, and I was polishing the kitchen feverishly having spent a better part of the day cleaning the house to impress the English nanny when the doorbell rang.

I pulled the door open, and there stood Anna with a big smile, beautiful blue eyes, dangly earrings and — 100 extra pounds.

Matthew appeared in front of her, and got right down to business.

“How big are you?”

“Matthew!” I said, horrified, but not surprised.

Anna seemed unfazed.

“Hello, Matthew. I’m Anna! Would you like to show me your room?” By now, Andy and John, Matthew’s younger brothers, were standing behind me, looking worried.

“How big are you?” Matthew repeated. I was about to jump in again when Anna signaled to me that she could handle it.

“I am a bit chubby, I suppose.”

“How fat are you?” Matthew persisted.

Why didn’t Laurie tell me?

“In England, we call it chubby, so I guess you would say I’m quite chubby!”

“So you’re big and fat.” Matthew concluded calmly.

My husband appeared, and introductions were made.

“I’m going to give Anna a little tour. Will you watch the boys?” Wide-eyed like the boys, Peter took Andy and John into the other room. As he walked away, Anna and I could hear Matthew say, “She must eat a lot of food.”

It was difficult to convey to Matthew that it is not kind to comment on peoples’ appearance. On trips to the grocery store, he spoke loudly and bluntly about shoppers around him.

“He shouldn’t buy all those donuts” or “How black are those people?”

****

“I am so sorry.” I told Anna, wondering if I should call the whole thing off. The weekend getaway of my dreams would have to wait. “Don’t worry. The little ones always comment on my size, but once they get over it, we have a jolly old time.”

But I knew Matthew wouldn’t get over it, and that it was going to be a long day for poor Anna.

I had a hard time relaxing and getting in the spirit of the party, and finally shared our story with a few of the guests, who laughed uproariously. It was 1996, and autism was still considered a rarity-tragic, yet exciting.

“When did you find out he had autism?” one of the guests asked. “I hear they’re brilliant”, said another. “What will he be like when he’s a man?”

We left the party early, and when we arrived home, Anna looked ragged, and relieved to see us.

“How’d it go?” I asked cautiously.

“Anna ate pizza and ice cream”, Matthew reported.

I quickly ushered Anna out to her car and folded a big check into her hand.

“I don’t know how you do it,” she said.

I thanked her, and said I’d hope she would come again. What else was I going to say? He hadn’t meant to, but Matthew had hurt this woman, and I felt terrible. Now I would have to go in the house and have a talk with Matthew, try to explain once again.I could say, “How would you feel if…” or simply say “Anna feels sad because you told her she was fat.” His reply would be, “ but she is fat.”

And as Anna drove away, I thought, tears coming suddenly, how do I do it?

*****

From that day on, I introduced Matthew to new helpers ahead of time.

But how can you find motivated and qualified people who you can trust? After years of trial and error, I figured out some great resources. This is what I recommend:

  1. Call your local college and talk to a psychology or education professor. They can refer you to many students who would love to learn from your child (While making money at it!) I have found many great helpers this way, many of whom are still in touch with Matthew.
  2. Once you find this wonderful people, treat them like family.
  3. Your child’s speech therapist/physical therapist/etc. might like to work with your child, or might have friends in their field that would.
  4. When your child is, as my son Matthew told me at age 14 “too old to have a babysitter” hire mentor/friend types.
  5. Last but not least, Autism Speaks has the best resources pages that I have ever seen. If you can’t find exactly what you are looking for by clicking one of the many links provided, phone your local Autism Speaks chapter and ask for recommendations!

Do have a success story regarding childcare? Share it in the comment section below – we will choose five of you (on Monday, August 2) to receive a copy of Laura’s book.


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How Are You Working to Achieve Your American Dream?

July 28, 2010 2 comments

To commemorate the 20th anniversary of the Americans with Disabilities Act, National Disability Institute presents Economic Empowerment – Defining the New American Dream, a nationwide video contest open to all persons with disabilities. To participate, create a 3-minute video that tells the story of how you are working to achieve your American Dream. One grand prize winner will receive $1,000 and will win a trip to Washington, D.C. to present their video at NDI’s 6th Annual Real Economic Impact Tour Kick-Off Event!

All entries must be received by August 13, 2010.

Source: http://dream.realeconomicimpact.org/

Autism in the News – Wednesday, 07.28.10

Young Film-makers Ask Public for Support (Community Newswire)
Young film-makers from the North-east are asking the public for support after they reached the finals of the National Lottery Awards. Read more.

Opening doors: Rochester celebrates 20th anniversary of Americans with Disabilities Act through awareness (Rochester, N.H.)
Samantha Battis was thrilled to make some new contacts Tuesday evening to aid in her attempts to raise awareness for autism. Read more.

House OK’s bill making insurers pay for autism services (boston.com)
The Massachusetts House passed a bill yesterday that would require insurance companies to cover a broad range of services for children with autism, a measure that supporters say will help families of such children but that opponents worry will increase health costs, even as other legislation aimed at reining in health spending has been sidelined. Read more.

Elgin’s Winfred Cooper honored as inspiration to teens with autism (Beverly Hills, Calif.)
Calling him an inspiration to teens with autism, the HollyRod4kids Foundation honored Elgin’s Winfred Cooper with its Champion Award this past weekend. Read more.

East Stroudsburg University runs camp for autistic children (East Stroudsburg, Penn.)
For years, faculty and staff members at East Stroudsburg University had the training and expertise to work with children with autism. They just never got the chance to put their specialized skill sets together. Read more.

Ten Tips for Vacationing with Your Child – Part 2

July 28, 2010 6 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the second post in a three-post series about vacationing with your child who has autism; read the first post here.

Tip # 4 Expect the Unexpected. Go with the Flow (as if we had a choice!)

As well-prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn’t contain himself. At the airport, as we waited to board, Neal stared at the huge planes out the windows. He had great anticipation. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. “It’s okay sweetheart,” I told Neal, trying to comfort him.  To the security guard and the concerned onlookers, what could I say? “He has autism! He just likes airplanes!”

I remember early on in our diagnosis becoming outraged at others for making what I thought were “stupid comments” about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal’s reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge).  I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.

TACA (Talk About Curing Autism Now) has cards that you can present to strangers to help them understand autism.

Tip #5 Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.

Our choice to go with the flow continued throughout the flight. Once we boarded the plane, Neal remembered all that we had practiced (backpack under his chair, seatbelt snapped closed, and ears covered at take-off). Success! Until beverage service does its thing in the aisle, blocking the path to the bathroom in coach (where we are seated) and Neal indicates that he needs to go NOW. This we hadn’t practiced.

At my husband’s suggestion, Neal and I make our way forward to the first class restroom where the flight attendant recites the usual “first class passengers only” spiel. As I try to explain the situation of my son’s special needs, a man from first class, clearly able to overhear our conversation, heads into the bathroom, pushing ahead of Neal. “He’s going to have to wait like everyone else,” she prattles on. As I start arguing with her,  Neal sees an opening. He darts towards the bathroom door. And yet another man jumps in front of the door with the cocky condescension of a first-class citizen. Neal tantrums. “Return to your seats,” demands the flight attendant. Neal grabs her eyeglasses off her face. She panics and calls for security. All this happens within twenty seconds. I’m losing it. My husband steps in. He calms me and quiets Neal enough to get him to wait behind the cart as it passes each seat. He then takes Neal to the bathroom. I return to my seat, fuming. If that stupid flight attendant hadn’t been so stuck on her rules, if that guy in first class hadn’t been so arrogant, none of this would have happened. How can people be so cruel?

Now I know to phone the airline in advance and tell them about my child’s special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. My child has the best intentions and he has autism. Things happen. I believe that people really do want to help families like ours if we tell them how by sensitizing them to our circumstance.

Airlines are becoming more accommodating. When I do the work beforehand, they offer comforts including letting us board early, being kind, patient, and attentive to Neal. I have found that, generally, fear of the unknown creates discomfort and anxiety which manifests in judgment or unkindness. The more we proudly travel with our children or go to movies, malls, or neighbors’ homes, the more they too will come to learn compassion, understanding, and non-judgment, just as we have.

Tip # 6 When traveling long distances prepare activities to keep your child engaged.

For older children, this might include computer games, DVDs, magazines, etc. When Neal was younger, I wrapped up little “gifts” in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes.  He would then take another three minutes to play with the toy car, spin the wheels, flicker it in front of his eyes, and then line the cars on the tray before he would get bored again. I also wrapped his favorite foods in little packages, a couple crackers here, a piece of string cheese there, three apple slices. Once we we’re in the air, he was intrigued and distracted by his little presents. Once in a while he ran up and down the aisle. I just ran with him. Life happens!

Check back later this week for the rest of Elaine’s tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

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In Their Own Words – Expectations

July 28, 2010 8 comments

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.

I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about  the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.

With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.

On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing  just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”

Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”

When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.

So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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Introducing Autism Talk TV

July 27, 2010 9 comments

This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. (*Editor’s note: Autism Speaks typically uses person-first language. Alex prefers the term “autistic adult” to describe himself.)

After years of wondering why I was different from the other children, I was finally diagnosed with Asperger Syndrome at the age of nine. I tried to find other people like me on the Internet, but was disappointed at the resources available for connecting to other individuals with autism.

Consequently, I decided to create an online community for people with autism. I was living at my grandparents’ house at the time and they didn’t have internet access, so I had to ride my bike to the library just to work on developing the site. Since I started Wrong Planet, more than 37,000 people have registered as members.We get around two million page views per month.

I graduated from George Mason University with a bachelor’s degree in Film and Video Studies. My senior project was a documentary on autism. One thing I have always wanted to do is create a TV show about autism.

Autism Talk TV is a new online television show with the goal of spreading awareness and educating the public about autism. I created this television show because there really wasn’t anything like it in existence. Autism Talk TV will  provide in-depth coverage of all issues relating to autism. Jack Robison (John Elder Robison’s son) and I attend autism conferences around the country and document people’s stories in crisp high-definition video, which I then edit into seven-to-10 minute segments.

I am continually impressed by the diversity of the autism community. Autism Talk TV gives a unique look into the varied lives of individuals related to autism and provides insight for those of us already living with autism.

Autism Speaks and WrongPlanet.net have graciously agreed to sponsor Autism Talk TV and we hope this partnership will help our show to reach as many people as possible.

Here is the latest episode of Autism Talk TV, which features an interview with Wired magazine writer Steve Silberman, who wrote a very popular article called “The Geek Syndrome,” which chronicled the rise of autism in Silicon Valley. I look forward to hearing your thoughts.

Check out Wrong Planet’s YouTube channel, where Autism Talk TV is hosted.

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Autism in the News – Tuesday, 07.27.10

Autistic man dies in hot van in suburban Philly (Langhorne, Penn.)
Police say a 20-year-old autistic man died after being left in a hot van following a trip to a suburban Philadelphia theme park. Read more.

DHHS Blamed For Delay In Private Autism Funds (Omaha, Neb.)
A funding fight is brewing that could affect dozens of autistic children and their parents in Nebraska. The state’s Autism Action Partnership has pulled millions of dollars meant to help kick off a new program for critical care. Read more.

Children’s museum to host workshop on Asperger’s, autism (Suburban Journals)
The Children’s Illustrated Art Museum is hosting an educational and interactive workshop for the parents, professionals and teachers affected by the challenges of caring for a child with Asperger’s syndrome or autism. Read more.

Camp attendance triples for children with autism (Democrat and Chronicle)
Ten-year-old Steven Moore of Pittsford wasn’t sure archery was safe for children. Holding a bow and arrow, his voice grew louder as he said that pulling the bow string hurt and he didn’t think he could do it. Read more.

Columbia mom applies for Pepsi grant to support children with autism (Columbia, Miss.)
When Ella McPheeters was 3, she spoke her first word, “bubbles.” Before then, Ella was entirely nonverbal. At age 2, she was diagnosed with “pervasive development disorder, not otherwise specified,” a type of autism. It was only when she started therapy a year later that “her language completely blew up,” her mother, Hope McPheeters, said. Read more.

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