Posts Tagged ‘autism’

New Year’s Resolutions for an ‘Autism Mom’

Thursday, December 31st, 2009

Autism and life are inextricable,  but certainly not incompatible nor joyless.  Sometimes, though, thriving with autism might take a bit more planning and commitment. Thus, with high hopes and good intentions, I join with many others in making my 2010 New Year’s resolutions. Here are mine, which have been tailored to an autism-friendly mode:

1. To stop dithering about my son’s educational placement, and get him where he needs and wants to be.  It all started with Connor’s statement, ”There are too many students and staff at my school.  I can’t concentrate.” All the sleepless nights, hand-wringing and relationship-cultivating efforts with the special education staff won’t change the fact that his current services and placement are not working as well as they could be. Dithering about the advantages and disadvantages of home school, private school or switching to a new public school is not helpful.  It’s time to get out those scorecards, interview guides, site tours and other due diligence methods that I used for years in the business world to discover what alternatives are out there, and how they may fit with Connor’s needs.  Surely there is some solution that incorporates inclusion, academic achievement, services  and a strength-based/individualized curriculum in an environment that my son will enjoy. (By the way, he’ll be in on the decision-making, too, along with our banker!)  Estimated completion date: June 1.

2. To talk less. This is a difficult thing to do.  I love words.  I love how words combine into phrases and phrases into sentences and sentences into paragraphs.  I even like to say the same thing twice, but in different ways.  Unfortunately, Connor doesn’t understand long monologues, and has even said “Mom, you talk too much.”  I’m sure my spouse would agree.  Estimated completion date: about 25 years from now.

3. To develop a passion for fresh fruit and lap swimming.  I thought these were more specific than “to adopt a healthier lifestyle.” The cholesterol-monster is already at work in my body, so diet and exercise are important for me, and fruit 3x per day and swimming 3x per week should be relatively easy to pull off. Besides, both can help my skin maintain a youthful glow, which at my age is much needed. Estimated completion date: ongoing, with constant vigilance and persistence.

4. To be willing to share what I’ve learned  and to keep learning. Mentoring and advocacy are critically important.  Moms and dads with autistic kids have a tank full of collective knowledge, and that knowledge is not siloed, even though the autism community that serves us is highly specialized.  In other words, we know how speech, OT, PT, APE, ABA, vision, music, art and other therapies fit into IEP goals. We know how concomitant medical issues may require the services of  a bunch of experts–an allergist, an  immunologist, a nutritionist, a gastroenterologist, an ear-nose-and-throat specialist, a sleep therapist, a pediatrician, a pharmacist, a psychologist, a neurologist, an attorney or even a social worker.  We’re pretty smart people, and I, for one, am glad to be part of such a group. Estimated completion date: always to be accessible for sharing; never to be finished with learning.

Happy New Year to you all!

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!

Stuff that works - for us

We  don’t assume these products will work for everyone–that’s why we ended the title with the parenthetical (for us). But if you are looking for new things to try, please read the accompanying blogs to view our experiences with these products. 

 

 

101 Games and Activities for Children with Autism, Asperger’s and Sensory Processing Disorders, by Tara Delaney, M.S. OTR

Written by a pediatric occupational therapist, this book is full of affordable and fun ways to engage your child in educational play.  Click here for our story on how we turned an ordinary family stroll into an exciting adventure!

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Model Me Kids

Model Me Kids® has broken the code on tools to teach social skills to children on the autism spectrum.

Click here for our success story and a full product review.

 

 b-Calm Audio Interventions

The b-Calm System provides audio technology to help calm and increase concentration in children on the autism spectrum.   To learn how we used b-calm, please visit our blog My Son Threw a Shoe in Class Today.

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Do You Have a Product?

Do you have a product you’d like us to review for Stuff That Works™? Contact us today.

 

L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Reporter,  Autism Hangout