Posts Tagged ‘autism’

For grandparents, neighbors and extended family…How can you help? Bring dinner!

Saturday, October 17th, 2009

My parents recently confessed that that they always wanted to help out with our son, but weren’t sure what to do.  They felt particularly helpless during the early years when Connor was newly diagnosed and we were still trying to find our way with Autism.  They are not alone. Many parents, neighbors and friends stand on the sidelines or walk on eggshells fearing that they will say or do the wrong thing.   If only these parents and friends knew how much we needed them during that difficult time (and how much we still need them now).  Maybe this  list of DO’s and DON’Ts will give them the guidelines and the confidence to step forward:

DO: Ask questions.  We won’t be offended.  We’d like to share what we know, and we’re just like any other parent — we want to brag about our children’s victories and commiserate about their setbacks.   If you don’t ask questions, chances are that we’ll assume that you either a) think we are overreacting and that our kids will ‘grow out of autism’ b) you don’t care or c) you think we aren’t doing enough to help our children (see below).

DON’T:  Judge.  Believe me, we question ourselves every step of the way.  Why did I do this?  Why didn’t I do that? What could I do better?  This mantra gets me through at least 100 sit-ups.

DO: Be respectful of our time.  Go see so-and-so and you need to read this  are typically not helpful unless they come from another mom or dad with a child on the spectrum or a professional, like an educator, doctor or attorney.  First of all, we probably have already read most of the generic literature, news and advice on autism. Secondly, you might’ve just sent us off on a wild goose chase to bond with someone we don’t care to know. I once spent three hours of time I didn’t have tracking down a therapist suggested by a well-meaning family member only to find out the ’therapist’ went out of business two years before.

DON’T: Under-estimate our children. Ever.  Or we will inflict bodily harm get really, really angry.

DO: Help us be vigilant.  Our kids can run faster than jackrabbits when eloping from sensory overload. Help us keep them safe from dashing into traffic, wandering away from home, falling into unsupervised swimming pools or talking to strangers.  Maybe then, we could trust you to watch them for just a little while while we grab a quick nap. (You wonder why we often won’t let our kids out of our sight…let me tell you, after finding my child tied to a chair during a mom’s day out program or witnessing his first seizure…well, I’m sure you get the picture.  Bear with us).

DO: Bring dinner!  It would be worth a call first to check and see if there are any dietary restrictions, but PLEASE bring dinner.  Just ring the doorbell and drop it off on the front porch with a nice note, kind of like those lovely church ladies do when someone gets back from the hospital.  The all-hands-on-deck time from 4:30 in the afternoon to bedtime is chaos.  Overly-tired children, cranky husbands, dogs that need walking and telemarketing calls from vendors who don’t check the do-not-call-lists make dinner time more like disaster time. So, please drop off dinner, send an encouraging email, or offer to run a few errands for us–and you’ll help more than you know!

Family Fun Away from Home

Sunday, June 28th, 2009

It was a nightmare taking Connor anywhere.  When he was an infant, we’d cover his pumpkin seat with a light blanket, much like a canary in a cage, as a barrier to sensory overload whenever we visited Wal-Mart or the grocery store. As a toddler and through pre-school, Connor would often refuse to get out of the car when we went to the zoo or to a children’s museum.  And movies…Connor couldn’t sit through previews until he was five!  So much money and time were wasted, and yet…he took his first plane ride when he was only three and half years old. The only thing we can advise is to keep trying!  Here are a few things that have worked to get us out of the house (and away from the Wii):

1. Family bike rides.  If a child hasn’t yet learned how to ride a bicycle, try renting a tandem attachment.  The tandem contains a third wheel that attaches to the back of an adult bike. Handlebars and pedals provide stability.

2. Movies.  Request your local theater to host a sensory-friendly screening one day per month.  Ask the theater to provide up-lighting, minimal or no previews and lower sound volume. When the child gets better acclimated to the theater environment, let him or her bring a friend. 

3. Travel. Prepare for the trip with an online preview of the sights he or she will see while on the trip.  Also provide a visual schedule of the transitions, such as driving to the airport, riding the shuttle to the terminal, passing  through security, boarding the plane, getting a  rental car and driving to the hotel. Bring a portable DVD player for plane and road trips. If traveling for  more than one day, take it easy by staying in and ordering room service the first night.

4. Nature hikes.  Look for good weather – not overly hot, humid or cold.  Think up educational ideas, such as finding fossils or devising a treasure hunt for colorful and/or textured items.

5. Field Trips. Visit a non-children’s museum on a weekday when there are fewer crowds. Art, science, history and  technology museums provide fun and/or beautiful things to view without all of the overly-bright and distracting gizmos found in the children’s wings. 

6. Swim, but at a private pool, not a crowded, kid-filled one.  Some hotels offer day rates to use their indoor pool facilities in the fall and winter.

Engaging Your Spouse

Friday, May 29th, 2009

He kisses her on the cheek, slings his golf bag over his shoulder and heads out the door with a breezy,”Don’t worry, honey, he’ll grow out of this autism-thing on his own.”  In the meantime, she keeps a rigid schedule of appointments for every autism therapy – traditional, biomedical, experimental or pure black magic – she can find.    He listens to his mother.  She listens to whomever will take her call. What little time they have together is spent arguing about who is right and who is wrong.  ’Quality couple time’  turns into an opportunity to fight without the children overhearing. Marriage is difficult enough, but autism can make it even more so. 

 One way to help neutralize autism’s effect on a marriage is to engage your spouse in creating an aligned viewpoint.  Alignment is simply another often-used corporate term that means getting on the same page.  To start building alignment with your spouse, start with a fresh sheet of paper and answer these three questions: (more…)

Trust Your Instincts! New Study Reveals Gap Between Possible and Actual Autism Diagnosis

Monday, May 11th, 2009

A study by Washington University professor Paul Shattuck, Ph.D. reveals that the average age of a child diagnosed with autism is six years old — that’s three to four years after a diagnosis is possible. Dr. Shattuck asks parents to trust their instincts, and follow up with any developmental concerns immediately. Closing the diagnosis gap will ensure that a child obtains the proper therapy and treatment as early as possible.

A note from Mae: Can you imagine the number of children who are mislabeled and misunderstood during those three to four years? Or those parents who blame themselves or their children for behavioral issues and delays?

See below to view the entire article or go directly to the Washington University website at http://news-info.wustl.edu/tips/page/normal/14077.html (more…)

My Son Threw a Shoe in Class Today

Tuesday, April 28th, 2009

My son threw a shoe in class recently.  In this case, he was working at the chalk board, and a classmate noticed that one of his shoes was untied, and kindly went to tie it for him. The good news was that my son didn’t throw the shoe at his helpful classmate.  The bad news was that after he threw it, he hid under a table and refused to leave. 

When asked why he threw the shoe, my son says he was acting shy.  My suspicion  is that he lost his concentration and panicked when he could no longer keep up. Am I proud of him for hiding under a desk  instead of kicking and screaming? You bet I am.  But I also know that we needed to find a better way for him to self-regulate in the classroom. (more…)

Chores… A simple name change and a little collaboration get the job done

Monday, March 23rd, 2009

Figuring that Connor, my seven-year old, was ready for more responsibility, I approached other moms to see what their children were doing in the Chores department. My heart sank to my toes as I realized that once again I was late to the task. Many moms had been watching their children happily scrubbing, dusting, making beds and cleaning bathrooms for years.

Sorting through all of their wonderful suggestions, I settled on having Connor unload the dishwasher, so I asked him if he would put the forks and spoons away. He tried his new chore, and didn’t like the fact the silverware still had drops of water in the basket. Undaunted, I realized that I’d have to bring Connor into the decision process. “We’ll find a new chore that’s just right for you,” I comforted him.

I then talked about the importance of doing chores. Connor responded “I don’t do chores.” I explained that we all have to do chores. It is part of life…Dad does chores, Mom does chores… Connor answered, “Yes, Dad goes to work at the office, you work in your home office and I work at school.” Momentarily distracted, I celebrated his comprehension of the importance of a career. Perhaps he won’t be a professional video gamer after all.

Then it was back to the task at hand. “Honey, we all have jobs to do, but we also have chores to do, too.” Connor thought for a moment and then beamed, “I do chores for my teacher at school.” Good one, sweetheart. I admired his cleverness and marveled at the special talent of teachers to get children to perform tasks that they would otherwise have no interest in doing.

Patiently, I tried again. “Connor, we all like to help out at school and at work, be we also help out at home.”

“No, I don’t want to help out at home. I do homework at home. That is my chore.” Oh boy. Once Connor gets it into his head that he doesn’t like something, it is easier to move a mountain than to change his mind.

Suddenly, I have a brainstorm. “Connor, don’t you remember how you helped gather items for the garage sale?” Yes, he did. “And Connor, don’t you remember how you helped the customers that came to the garage sale?” Yes, he remembered that as well, and beamed, “I did a good job.”

“Yes, you did, honey, and can you now see that chores don’t have to happen all the time, and they don’t have to be difficult, and they can actually be fun?” He nodded, albeit a bit tentatively. And then, using one of the most effective tools in a mom’s arsenal, a simple name change, “Connor, I have a great idea. Your chores are going to be… SPECIAL PROJECTS!”

Special projects? He looked interested (and a bit suspicious), so I charged ahead before he figured out he was being maneuvered. I explained that special projects are important, like helping to wash the car. “Oh I like to wash the car!” This was going great. I had him in my sights. Victory was near.

Trying to appear nonchalant, I said “Maybe laundry would be a special project. You know that mom and dad both help out with laundry.” Connor thought about it for a minute and said, “I’ll throw the clothes in the laundry room.” Now we’re talking. Emboldened, I suggested that “maybe you could do something else with the laundry.” He looked doubtful, so I pushed ahead. “Perhaps you could put the clothes away after they were clean.” Connor looked down his nose. “No, I won’t do that.” Uh oh. A set back. How was I going to handle this one? It turned out that I didn’t have to do anything. A moment later, Connor looked up and said, “But I’ll take the clean clothes and hang them up in the closet.”

Mission accomplished. Perhaps with his gift for negotiation, he’ll be an excellent attorney, possibly one with a specialty in labor relations!

Good Manners: How to Say Hello Back

Friday, March 20th, 2009

Earlier this week I found an article online that provided “Signs that Your Child Might be Spoiled.” One of the signs mentioned was that he or she would fail to respond upon being greeted. When I read this, I shifted uneasily in my chair. Although he handles please and thank you beautifully, my seven year old son Connor will not even talk to his classmates when he is having a bad day. I know this hurts the other children, who go out of their way to make him feel comfortable in his general education classroom.

Later that day, when I picked Connor up from school, I was chatting with another mom. My son walked up to us, and she said, “Hi Connor!” My son promptly turned his back on her. This was the last straw.

Autism is no excuse for rudeness, and I knew we would have to do something to change Connor’s behavior, and pronto. It was also humbling to realize that my husband and I had been overcompensating for Connor’s autism, and we had been unintentionally spoiling him by letting him get away with bad manners. (Ack! These facing-the-music moments in parenting are not pleasant, and I was determined to redeem myself).

At first, I tried talking with him, “Honey, you need to say hello to Mrs. Worth.” He looked hard at me for a moment and then declared, “I don’t say hello to strangers.” I tried a different path. “But, sweetheart, she is my friend, it is okay to say hello.” More firmly now, he responded, “I don’t say hello to your friends.” It was clearly time to change context.

I then asked, “You say hello to your classmates, right?”

“I only say hi to my friends in my classroom.”

For those of you who know how literal a child on the spectrum can be, Connor meant EXACTLY what he was saying. He prefers to talk in the classroom, but not in hallways, and only sometimes on the playground. Oh, this was worse than I thought!

When I got home, I pulled out a training video that had been recently returned to me by our son’s resource teacher. I had given it to her to review, and she had been playing it for all of her students over the past four months. The video series, Model Me Kids, features real children in real settings to teach social skills. I had purchased two of the videos, Time for a Playdate and Time for School as a starter set because Connor LOVED the video clips that Model Me Kids had provided online as a try-before-you-buy strategy. It was a wonderful courtesy, and prevented me from wasting more money on yet another educational tool that Connor would have no interest in watching.

I located the section in the Back to School video about Saying Hello. And then I remembered that when I played the video the first time, that Connor had connected to the characters in the video, but had turned his head away from the saying hello part. Clearly this was something that was difficult for him. Perhaps he was shy; perhaps he saw a greeting as an intrusion into his personal space. Who knows? But it was time to address the problem, and although the videos were able to teach him a number of training skills, this particular task was going to need a bit more oomph.

So I went back to the Model Me Kids website, and found that a teacher and a student training manual were also available as accompaniments to the videos. (Sections of these luckily were also posted online, so I could try them before I decided to order the set, which I did). The training manual included discussion questions, such as “how do you feel when someone says hello to you”? Connor responded “I feel happy!” Then we talked about how he felt when he said hi to someone and they didn’t say hi back. He read the proper response off the manual, “Hurt feelings.” We also went over the student manual, which talked about the rules of saying hello, such as turning to face the person who had issued the greeting, making eye contact and saying hello.

But Connor still looked a little dubious, so we decided to role play. I asked him to pretend he was my friend. I would pretend to Connor. And so we began. He said, “hi!” very brightly and friendly. I, as pretend Connor, walked right past him. He was flummoxed. “Hi!” he said again, and I walked by again without responding. “Hi!”” Hi!” he repeated. And I continued to ignore him. He was looking a little worried by now. After his fourth hi, I turned to him, smiled and said hello with a big smile. Connor got the message.

We watched the Back to school video again, and when it came to the Say Hello part, Connor repeated each instruction.

The next day, Connor began to say hello back.

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

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