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Temple Grandin on the Importance of Giving Kids with Autism a “50’s Upbringing”

Friday night I had the honor of meeting Dr. Temple Grandin – the noted cattle expert, autism authority, and one of the most famous and successful people on the autism spectrum.  We were both speaking at the US Autism & Asperger Association Conference in Denver and when we met at the speaker’s dinner I told Temple, “I am the co-founder of MyAutismTeam – a social network for parents of kids with autism.”

“Ohhhh” she said.  “Do you know what worries me most about parents of kids with autism these days? They’re not making their children learn enough important job skills!”  And with that, she launched into her case, elaborating on what she means.  “I’m seeing more and more kids, a lot less severe than I was, graduating college without any job skills – and they are ending up living on social security!”

Other speakers started gathering around us to listen as she held forth.  She attributes a lot of her own success to what she calls a “50’s Upbringing” from her mother – a parenting style invoking teachable moments, stretching your kids, and inculcating manners, basic social skills and independence early.  It’s a parenting style she wishes would make a return today – particularly among parents of kids with autism.  I should say that on this particular topic Dr. Grandin is focusing in on kids from the higher functioning end of the autism spectrum and although she refers to herself as an “Aspie” she is quick to point out that she’s come a long way from where she was developmentally as a little girl.

What is a 50′s Upbringing?

Dr. Grandin summarized a “50’s upbringing” as learning the following:

  • Turn taking in conversation and activities (such as board games)
  • Being on time
  • Doing family activities (even ones she disliked)
  • Doing things that pleased other people
  • Manners (saying please and thank you)
  • Rules (particularly learning why her social mistakes were inappropriate)
  • That there is consistency between parents and school – e.g. a tantrum at school translates into no TV at night
  • Basic social skills
    • Shaking hands
    • Eye contact
    • Ordering food in restaurants
    • How to shop
    • “Eccentric is ok, dirty and rude is not”

Examples from Her Own Life

Temple Grandin speaking at USAAA

Dr. Grandin shared several examples from her own life to try to clarify.  I’ve tried to capture those here to share with you (all paraphrased so I won’t put them in quotes.)

  • Learning job skill needs to start early and the transition from learning to working full-time needs to be gradual.  The best way to do that is to always be doing some kind of work where you can learn a job skill.  For me that started as a girl.
  • Mother made us properly shake hands with everyone we met, and look them in the eye.  I’m appalled at how many kids I meet at book signings who don’t know how to shake hands.  You either get the “vice grip or the dead fish”.  Kids need to be taught how to shake hands, and how much pressure to apply when they shake hands.   That’s a teachable moment.   When I was six, Mother made me put on my church dress and serve hors d’oeuvres to our guests – she taught me how to look people in the eye and do something nice for others.
  • When I made a social mistake, was rude, or misbehaved – mother would teach me why (teach me the rule) rather than scold me or say, “No, no, no.”  If I pointed and made a rude comment about an overweight person at the story mother would say, “Temple, it is rude to point at people and make fun of their appearance.”   If your child goes behind the cashier’s counter at the store, replace “No! Johnny come back here right this instant!” with “Johnny, only the clerks can go behind the counter.”  Use the teachable moment.
  • Mother always made us try new things.  At age 13 she got me a job sewing.  I was learning a skill and earning money.  Later, when I was in high school I got my own job cleaning horse stalls and working with horses.  I was learning a skill and becoming very familiar with working with animals.
  • When I was in college I had to rent a house, negotiate rent and live with a roommate.
  • I learned you have to build up and carry with you a portfolio of work.  You never know when you are going to get a job opportunity.   In my first job I used to paint signs.  With each completed sign I could show it to the next potential customer to get another sign to paint.  Later, (as I was getting my consulting practice to the cattle industry off the ground) I used to do tiny consulting projects with the smallest cattle ranches.  I was learning on each one and then I could show that work to the next person.   People thought I was weird, but they respected my designs.  Today you can carry your portfolio on your phone.  (Reader Note:  Incidentally, half the cattle in North America now are handled in a facility using one of Temple Grandin’s designs).

Dr. Grandin elaborates with more examples in her own post and her many books, which are well worth the read.

A Challenge to Parents

This was not a light conversation.  When Dr. Grandin talks in person she doesn’t mince words and she speaks about this topic with the genuine fire in the belly of someone trying to jumpstart a movement.   To be clear, she does not like what she’s seeing.  She wants to encourage parents of kids on the spectrum to make sure they stretch and teach their kids more, get them to try new things and learn new skills (even if the kids don’t want to do it at the time, and even though they may fail at it initially).  She passionately believes it’s never to late to start.

My meeting with Dr. Grandin left me inspired and is causing me to seriously examine how I’m raising my own two neuro-typical children.  I know I could utilize a lot more teachable moments with them than I do currently, and I’m not so sure I stretch my kids and let them safely “fail” enough.   You can weigh in on this topic.  To learn what other parents of children with autism are doing to teach job skills, or to share some of your own teachable moments, please join MyAutismTeam.   It’s free and this invitation is open to parents of “children” of all ages.  Of the 28,000 parents on MyAutismTeam about 35% are parents of teenagers or adults on the spectrum.

Meet MyAutismTeam In Denver Sept. 6-9, 2012

Meet Us At the USAAA Conference

The US Autism and Asperger Association conference starts Thursday Sept. 6th and concludes Sunday Sept. 9th. Among the many notable speakers, like Temple Grandin, MyAutismTeam co-founder & CEO Eric Peacock will be presenting “10 Lessons Learned from 25,000 Parents”  on Saturday at 1PM.

There is still time to register,  USAAA Members, Students, Military, Individuals with ASD, or PARENTS WHO BELONG TO MyAutismTeam get a significant discount off registration! Get a jump start, and register today!

Is it worth getting diagnostic tests for autism spectrum disorders?

Are you a parent exploring the current genetic tests available for autism? If so, it turns out you’re not alone. 

Three months ago while attending the Stanford University Autism Symposium, I had the good fortune of listening to a panel discussion about genetic testing in autism.  The panel was titled, “Diagnostic or Treatment Value of Genetic Testing for Autism Spectrum Disorders” and it was hosted by three brilliant, compassionate, dedicated autism experts – Drs. Joachim Hallmayer, Jonathan Bernstein and Wendy Froehlich.  These folks had a tough job.  As the three experts in a room filled with 30-40 eager parents of children with autism, they had to portray the hope and potential of genetic diagnostic testing in autism, while simultaneously explaining how little it can actually do for parents right now.

An enormous amount of progress has been made in understanding the genetics of autism in the past decade.  These early discoveries have fueled further research and encouraged pharmaceutical companies and biotechs to launch early stage research into potentially new therapies for treating autism.  That said, it’s still early innings.  As Drs. Hallmayer and Froehlich explained, at this point we’re only able to identify a contributing genetic cause of autism in 10%-15% of cases of people diagnosed with ASD who have diagnosed intellectual disabilities.   Even studies of twins have suggested that genes account for less of the autism risk than do environmental factors.

Many of the parents in the room listening to this panel were in disbelief to hear this.  10-15%, that’s it?  After processing for a few minutes, everyone had the following question.  “As a parent of a child on the autism spectrum, should I get the current genetic tests available for autism?”

The answer is not at all clear, particularly given how expensive these tests can be, but the panel offered up several good questions for thinking about it, and making a decision for yourself.

  1. Will it change the treatment your child receives? – The answer is most likely “No.”  A child diagnosed with ASD will be guided to early intervention and evidenced-based therapies such as ABA.   Determining if you have some of the already-identified genetic variations associated with ASD (by taking a test) won’t really change that.  We’re not at a point yet where novel drugs have been developed targeting these genetic variations.  So, even if you get the test and you’ve been diagnosed – your treatment path will not likely change.
  2. Can it help you get into early intervention earlier?  To the extent the genetic test helps you get an official diagnosis or helps you secure certain autism services from your insurance provider or school district earlier, then there may be a good case for it.  This was kind of a hypothetical possibility offered up, more than a practice any parents in the room could point too as actually working for them right now.  But something to keep in mind.
  3. Does it give you piece of mind and help with family planning?  - Much of the recent research in autism genetics is around something called “copy number variation” or CNV.  If our genetic code reads like a book, then CNV would be like having duplicate copies of some of the pages in the book.  Page 185 is repeated 3 times, page 25 is repeated 2 times and so on.  (This differs from single-nucleotide polymorphisms, or SNPs, which are more like a typo in a word in the book). Often times these CNV’s or repeated pages are only present in the child’s genome, but not in that of the father or mother’s genomes.  That means the genetic variation was not passed down from the parents, but rather happened at the time of or after conception.  In other words, it is not necessarily the case that the next child would have that same variation – and therefore, a next child may not have autism.  (Dear reader:  I am not a PhD, nor an MD and am treading on very thin ice here expertise-wise trying to relay the messages heard in the panel.  You should not take my word for it on these matters.  If you want to get a much more informed view on all of this you should certainly read the literature on this topic and speak with trained genetic counselors and specialists!)

The panelists pointed out that participating in a study and getting such genetic testing is very helpful for advancing the field’s understanding of autism – something that is important for all of us.    If you do, they advise making sure you are with a doctor that is open to and educated in getting and helping you interpret the results of such tests.  The panelists expressed that in the “next 10 to 15 years we hope to know a lot more about these conditions.”

If you’re a parent of a child with autism and are interested in discussing this, or any other topic with other parents like you, you can do so for free on MyAutismTeam.   

School’s Out for Summer — But Fears of Regression Looms for Parents of Kids with Autism

“I Hate Summer” was a recent post by Laura Rossi Totten on The Huffington Post. She writes,

Special Needs Parenting is challenging 365 days of the year. Unlike the shorter winter break or spring vacation, summer is unique because it is long and most special needs children now expect the routine, support, predictability and familiarity of the school year. Frequently, school-age special needs children struggle with the concept of time and that contributes to the confusion and anxiety many children experience during these three months.

What’s a parent to do? What options exist?

For parents who are looking for ways to keep their kids progressing (whether they’re Aspies, high-functioning, or non-verbal), there are few inexpensive options to turn to during the summer months. We recently spoke with Robyn Catagnus, EdD, BCBA-D of Rethink Autism to learn more about the online curriculum they offer parents.

MyAutismTeam interview with Robyn Catagnus, EdD, BCBA-D of Rethink Autism

Q:  The ultimate “transition strategy” by Dr. Peter Gerhardt, President and Chair of the Scientific Council at the Organization for Autism Research — a behaviorist who has taken part in a webinar for Rethink Autism — has been emulated by therapists around the country:

  • If you can teach the skill, teach it
  • If you can’t teach the skill, adapt it
  • If you can’t adapt it, figure out some way around it
  • If you can’t figure out some way around it, teach the neuro typicals to deal.

How does this apply — if at all — to the type of online curriculum Rethink Autism offers parents, which they leverage at home with their own kids?

Rethink Autism also begins with an effort to teach skills directly. Our program includes lesson plans and videos that demonstrate how to teach every skill in an entire curriculum for areas such as expressive language, receptive language, social and emotional, play and leisure, pre-academics, early academics, daily living, and motor skills. Every lesson and video has several ideas for adapting the skill or instruction specifically for your child. The program offers many ways to think systematically about your child’s needs, and allows for simple, effective data collection so you can see how things are working.  The ideas and repeated practice with teaching helps parents figure out ways around issues that arise. The Behavior Tracker module in Rethink Autism is another great tool to work around behaviors by assisting parents with identifying patterns and providing support and interventions based on that information.

Q: What kind of parent most benefits from Rethink Autism?

Any parent who wants to help their child learn new skills or decrease problem behavior could benefit from Rethink Autism. Parents can use the strategies even if they are beginners with ABA, and the program can be used as a source of ideas and everyday strategies, or as an intensive behavioral intervention program.

Q: Is this the same as homeschooling?

Rethink Autism does not require homeschooling. It is a curriculum to address the intervention needs of learners with autism spectrum disorders. It includes easy-to-use lesson plans, videos, data collection tools, reporting, and behavioral tracking and assessment tools. Those strategies and tools can be applied in any learning setting – home, community settings, public school, pre-school, home school, and more. It even helps parents and professionals communicate and document intervention across all those settings, empowering the parent to see all their child’s information and participate in teaching and programming.

Q: If my child has never been introduced to ABA therapy techniques, what should I expect?

You can expect your child to enjoy learning and develop new skills! Positive reinforcement is an important part of teaching with these techniques, so parents learn to engage children in a fun, educational way. Our videos show many strategies that help children learn quickly and effectively, while making very few errors. It is more fun to learn when you are successful and receive recognition or rewards for your efforts. The strategies are also very systematic and thoughtful in order to maximize learning every day. Even if you and your child have never been introduced to ABA, you will find the lessons very understandable, easy to use, and effective.

Q: Is this for parents of young children only? Or only parents of kids who are verbal?

Our lessons address a wide range of skills, abilities, and behavioral needs for children from age 18-months through early adolescence developmentally. There are lessons for children who communicate vocally or non-vocally. The first step is a brief assessment to determine the skill level of your child in various domains, and the program recommends lessons personalized for their needs. The curriculum ranges from skills needed by early learner for the very basics of communication, social interactions, or problem behavior- and the lessons progress gradually to address complex skills in every domain. As your child develops, the program grows and changes with them!

Q: What tips do you have for parents just starting with Rethink Autism’s online curriculum?

I recommend that you start with a few lessons, perhaps two or three. Select lessons that you and your child are likely to do well, leading to success. Be patient with yourself and your child. Most importantly, stick with it! After some practice, the process becomes familiar and comfortable, so you can expand, teaching more lessons and challenging your child to learn even more.

Q: What is Rethink Autism, not?

Rethink Autism is not meant to be a substitute for services or support by a trained autism expert or board certified behavior analyst. Ideally, when possible, our program can be used as a way to enhance team coordination and enhance any direct services a child receives. It is critical to have a clear path of learning, data for decisions, collaboration, and excellent teaching. Rethink Autism provides parents with the tools to ensure these elements of successful intervention for their teams.

Q: What can parents expect after a few months?

Expect to notice your child demonstrating new skills and having fewer problem behaviors. Using Rethink Autism works and parents around the world see meaningful changes after just weeks or months. When your child is learning and there are fewer problem behaviors, it really makes family life easier and more enjoyable. Such outcomes can be life changing for everyone in the family.

Rethink Autism has offered parents from MyAutismTeam a special discounted offer: 25% off the quarterly package price. In the promotional code field, simply type:  MAT25  to receive the offer. You’ll receive a 3-month curriculum to use with your child for less than $180 (plus, a consultation call free of charge). The regular price is $240.

If you try this service offered by Rethink Autism, let us know if it’s helped your child this summer. If it’s effective at helping your child progress, definitely add Rethink Autism to your provider team. We welcome your feedback on all services we bring to the community. MyAutismTeam strives to provide services and products at discounted rates for our parent community. Thank you for your continuous feedback and participation within the MyAutismTeam community.

Are You Missing Out On This 1-Day Conference for Bay Area Autism Parents?


Get PRACTICAL information that can help with parenting your child diagnosed with ASD at the one-day Annual ASD Symposium: Translating Science into Treatment Stanford Autism Center.This one-day event on Saturday, May 12th will be full of useful sessions to help you:

  • address feeding and digestive issues
  • decode your child’s most difficult behaviors
  • address sleep issues
  • learn more about adaptive skills for your teenager
  • know your legal rights when it comes to special needs in schools
  • translate the science of sensory, motor coordination, and speech pathology

BONUS: receive $25 off the price of admission if you’re one of the first 10 parents to email support@myautismteam.com. (Total cost after discount is $75.00).

Please share with other Bay Area parents. Our goal is to continuously bring you more discounts to events, products or services that empower you to help your child thrive.


How to Find “Great” Parents to Connect With on MyAutismTeam


Part 2

Breaking the Ice

This is part 2 of 2 from the series is to help you get to know more great parents on MyAutismTeam. When making valuable connections and friendships, the first place to start is with oneself (see part 1 here). The next part is even easier. Read on.

What brings you here?: Before saying ‘hi’ to someone on the site, consider why you want to connect with others. Parents on MyAutismTeam are initially drawn here out of curiosity and hope. They want to tackle the everyday challenges of being a parent of a child on the spectrum. To do this, they want to get perspective on what others go through by reading updates, they want to support others, share their day and feel supported, too. The bonus scenario would be that they find other parents in their neighborhood or others (across country, even) who share their interests. All of these things are great foundation building blocks for connecting with other parents on MyAutismTeam. Knowing what you want out of MyAutismTeam makes it easier to break the ice with others.

Find parents near you: Here is a quick shortcut to finding parents within 50-miles of your town. On the left side of your profile, where your photo, name, and city is located, click your city name. This will take you to a search results page for parents near you. Go to your page to try this.

Find parents whose kids share similar diagnosis or age with your child: Using the Find Parents feature on the site, you can filter search results for parents by location, their children’s diagnoses, and even age group. Aspie parents can meet other Aspie parents. PDD-NOS parents of school age kids can connect with other PDD-NOS parents whose kids are teens to ask about transition. Once you find others like you, take a moment to read their story. When you click on a person’s name on the site, you’ll be taken to their page. On the left side of their page click “Story”. There you can learn more about each person. Give it a try.

Read and like someone’s storyHave you ever read someone else’s account of what happened to them, and said “that’s happened to me before?”  And by reading the story, you realized that it made you feel better, not because it solved your problem, but because you found someone you could relate to. By “liking” another parent’s story, you’re letting them know you ‘get it’ or that you appreciate the time they took to share their personal story. 

Connecting by acknowledging: The most effective connections we see on the site are made when parents comment on each others’ updates, or “like”, or “hug”, or all of the above. Another level of connecting is “saying hi”. But saying hi in a way that shows you have taken a moment to learn about the other person through acknowledging what they’ve already shared about themselves on the site through their story, comments or updates. Another way: share what you have in common with the other person. Post on someone’s page on MyAutismTeam or comment in the activity stream. See what happens.

Welcoming new parents to the site: You’ve seen them, you’ve been them…the new parent on the site who gets the nerve, and shyly writes in their first update, “This is my first post, I’m new here…” Welcome them! Boy it sure takes guts to write that first post, doesn’t it feel good to be received and warmly welcomed by others? It’s like being at a housewarming party where you’ve been invited, but not sure who to talk to. If you’re reading this email, you’re practically a veteran of MyAutsimTeam. Definitely feel good about welcoming new parents to the site. It’s a great feeling.

Adding Parents to Your Team:  Anyone can add anyone else to their team. This is a simple way to keep track of parents you’d like to get to know better or would like to keep track of whenever they post updates. It’s also a nice gesture between parents. We’re all on each other’s team, but adding a parent to your team is an extra bit of support. 

How do you like to connect with parents on MyAutismTeam? What ways have worked for you?  You’ll be surprised how effective sharing a little bit about yourself can go with building trust among other parents in the MyAutismTeam community.


How to Find Great Parents to Connect With on MyAutismTeam

Part 1

Maximize MyAutismTeam, by sharing a little bit about yourself. This two-part series is to help you get to know more great parents on MyAutismTeam. When making valuable connections and friendships, it’s always valuable to start with oneself.

Begin With You

Getting started: Consider the value of customizing your own profile on MyAutismTeam. Whenever we hear something kind or insightful from someone, we have a natural tendency to want to know the person who said it. At a glance, a photo of yourself adds more personality, and builds trust in the community since your profile photo can be a large part of your identity on the site.  Avatar designed by: http://dribbble.com/designovich

Your story: Add your story to your profile. Have you ever read someone else’s account of what happened to them, and said “that’s happened to me before?”  And by reading the story, you realized that it made you feel better, not because it solved your problem, but because you found someone you could relate to.  Add or update your story.

Team: To the extent that you have a team (dentists, autism-friendly businesses, developmental pediatrician, therapists for your child, equine therapy center) add them. Your team is a great way of helping other parents near you learn more about resources you find valuable, and possibly have in common with each other. Add to your team.

Explore: A good first step to take when exploring MyAutismTeam is to browse around, or “lurk”. There’s nothing wrong in getting the “lay of the land”.  Figuring out who’s active and how they are active is a great way to get to get a feel for the community.  However, at some point, once you’ve figured it out, you should participate. Participating means commenting, and sharing.  Why is this important? It creates an awareness of you, contributes to the overall tone of the site, and builds up trust with other parents.  No one is here to judge. If anything, this is a place where parents understand, vent, and share the small daily victories. It can be encouraging and uplifting to be a part of it. Post an update or photo.

In part 2 of this series, we’ll share some simple, but effective tips to making the kinds connections to parents you want. Meanwhile, complete your own profile following the tips above. You’ll be surprised how effective sharing a little bit about yourself can go with building trust among other parents in the MyAutismTeam community.


A Parent’s Toxic Cocktail: Worry & Sleeplessness

Below is an exclusive inside peak of Carly’s Voice, only available here on MyAutismTeam. Special thanks to MyAutismTeam Guest Blogger  & author of Carly’s Voice, Arthur Fleischmann.

Sometimes small worries are the biggest. Of course parents of kids with challenges worry about their future; their happiness; their loneliness and isolation. But because our daughter only seemed to have an on and off switch, no calm in-between, I worried most about night times and what fresh hell might be unleashed during those gauzy hours between midnight and dawn.

Here is an excerpt, “Sleepness” from the book, Carly’s Voice, I wrote with my daughter Carly.

Sleeplessness

Even now, with the worst of it behind us, I have a sense of foreboding at bedtime. Through most of her childhood, Carly’s constant movement and inability to settle tormented her sleep and ours. She would struggle to fall asleep at a reasonable hour and to stay asleep for more than four. All parents go through sleepless nights with their infants, but by forty I had hoped to be past this phase of my life.

One night, around eleven, when Carly was little, Tammy and I were in bed, as usual. Tammy can only fall asleep with the television on, so we’d watch Jon Stewart ridicule George Bush, or a news show on CNN—a group of guys I call the screamers because they yell over one another to the point of childishness. Tammy, however, is a news junkie and follows the commentators and the politicians that they rip apart like most guys follow sports. But to me they look like old gray men raging against the system, and I can’t understand how it relaxes her.

When I finally drifted off, I did so with one ear open as always, because I knew my night was just beginning. Sure enough, just after two in the morning Carly burst from her room and jolted me back into a hazy reality. She ran—Carly never walks, never moves peacefully—into the hall and bounded into our room. Each step was a heavy stomp, her hands slapping at her sides. But her fiery energy packed a mean punch. She didn’t cry so much as bleat, a sound that immediately raised my blood pressure. What few words she had been able to form at three or four years old were long gone, replaced only with gestures and guttural noises. Perhaps forming words was more effort than it was worth, since gesturing, grabbing, and whining often produced quicker results. We despaired of ever actually hearing Carly’s voice. The effort required for her to utter even the simple nouns she once learned far outweighed the benefit to her; it was quicker and easier to point to what she wanted or use the binders filled with picture symbols of things other people’s mouths could prattle off without thought. Or perhaps as she developed, pathways in her brain—the complex network of neurons that told her mouth what to say—crisscrossed into a tangled mess, leaving her speechless.

She stood in the darkened room at the foot of our bed, stripped naked, and jumped up and down. She made the yelling and howling sounds that were her only form of verbal communication. I pulled myself heavily from my bed. “I guess it’s my turn,” I said sarcastically to my wife. She had learned that if she stayed in bed long enough, I would be the first to get up. This tactic left me with a double dose of resentment. I am not kind when I’m tired and aggravated. The sense of humor I often use to defuse a situation deserts me and is replaced with petulance. “It’s always my turn,” I throw in under my breath. I shepherded Carly from our room and back to the sea of destruction that faced me in hers. Compelled by some unstoppable, inexplicable force, Carly had pulled the sheets, pillows, and blankets from her bed and emptied all the contents of her dresser onto the floor. She was now on her bare mattress jumping and flopping about as if possessed. “Oh, Carly,” I said. I felt the creep of desperation in my stomach. This was not a new scene for me; it was one that played out over and over—almost every night. Carly’s behavior was inexplicable, and without language, a mystery.

I put the sheets and quilt back on her bed and plumped up the pillows. It looked inviting to me, anyway. “Carly, get back in bed,” I told her, a bit roughly. Although she complied, I knew this was the beginning of the day, not the end of a momentary disruption of the night. She flopped around on the bed as I sat on the edge trying to soothe her. “Shhhh,” I said, or was it a command at this point? I lay next to her, hoping to project an infectious calm.

“Think of something peaceful,” I suggested. “The ocean, for example.  A walk on the beach.” For me, visualization has always been a powerful ally. It’s hard to know if Carly understood this technique. I tried not to talk down to her. An attempt at soothing her to sleep felt futile; hadn’t I tried every trick I knew a hundred times before?  

As the fit subsided, I viewed the carnage of clothing strewn around the room. “You must make her clean up all of her messes,” the therapists had told us. “It’s the only way to discourage her from doing it.” I think they called it an “aversive”—a kind word for “negative reinforcement.” In this case, cleaning up was designed to be a consequence of her action, to discourage her from making a mess next time. But making Carly do anything she doesn’t want to do is a major struggle. For whom is the task really an “aversive,” then?

“Piss off,” I said to no one in particular; it seemed like the right sentiment. I was woozy with exhaustion. Not just a physical tiredness, but the type that comes from tedium, frustration, and anger. I usually can move beyond anger with some sort of catharsis, like provoking an argument or slamming a door, but this seemed like an inextinguishable fury. the only force keeping me moving forward was inertia—what choice did I have?—and a desire for normalcy.

Though my life often felt like I was bailing water from a foundering vessel with a teacup, I believed that if I was determined enough, consistent enough, patient enough—I could bring order to chaos.

I lay next to Carly as she drifted off only to be startled back to wakefulness with a twitching spasm. so we lay this way as the rest of the household slept. We had purchased a clock radio that played a series of Zen-like nature sounds. I stared up at the ceiling, and listened to the track trying to determine when one cycle of chirping birds and bullfrogs ended and the next one began. It was like counting stars. Something mindless I could do at two-thirty in the morning when I should be sleeping. Carly was finally quiet, though not sleeping, so I headed back to my own bed.

On a good night, I might have fallen back to sleep and cobbled together something that resembled a sufficient amount of rest to function the next day. But this night was not a good night. I was jolted again by a crash in the kitchen. I ran downstairs to find Carly standing on a chair in front of a food cupboard. Boxes of crackers and pasta, cans of soup and stewed tomatoes lay around her on the floor.

“God damn it, Carly.” the rush of emotion electrified my body. “Stop it. Just fucking stop it. I’m exhausted. If you want to live in this house, you need to get control of yourself,” I snapped. I had slipped into the bleak place exhaustion and frustration sent me. But I didn’t feel better after making these hurtful threats; I felt worse and worried that one day the threats may not be empty. This was not a sustainable existence, every night and every day, chasing Carly around the house, putting our things back together just in time for her to rip them apart again.

Several months before, Carly had snuck upstairs and filled the bath. We were unaware of what she was up to until we heard the flood of water pouring through the ceiling lights on the floor above. Another time, she smeared peanut butter on the den walls and furniture. While we cleaned up after her attack on the den, she grabbed a full container of baby powder and dumped it over the second-floor railing onto the carpeted stairs below. By the time Carly was seven, her uncontrollable movements and urges had taken on an untamed, destructive quality. Carly’s actions were not mischief that we would laugh about when she was older, such as the time Taryn gave one side of her head a haircut. It was like living with a raccoon in the house, and there were no signs of her growing out of it.

At three in the morning, I was in no mood for cleaning up. I left the debris on the floor and took Carly back upstairs, put her on the toilet, and cleaned her up. Back in her room, I remade the bed for the third or fourth time that night and got her back under the covers. This time I knew I wouldn’t be going back to my own room. Not tonight. I lay down next to her again, pinning her in with the blankets and the weight of my arms and legs across her. She sometimes likes the sensation of swaddling, but by this point, I mostly did it to hold her in place. I knew I wouldn’t sleep, but at least I wouldn’t be moving. Carly arched her back, screaming and flailing; the tight hospital corners my mother had taught me to make gave way as Carly sprang from the bed again. She jumped around the room yelping.

I considered getting Tammy up to give me some relief. This would have been a double-edged sword. Tammy wears her frustration much closer to the surface than I do. if she started yelling at Carly, I would feel worse than if I just dealt with this myself. Mothers are supposed to have limitless patience, but I know too well that this isn’t true. Tammy was drained. Her daytimes were not so different from my nights. She spent thankless afternoons shadowing Carly and navigating the mostly unchartered waters of caring for a child severely afflicted with autism. Hers was a relentless struggle to seek assistance from government agencies—help for battle-scarred families like ours to cope with what no family should have to cope with alone.

Then there was the matter of Tammy’s health. After years of struggling with cancer and colitis, she felt like an old woman although she was only forty. When I looked at her, I’d see a sadness that was not there when we first married. She often complained of an overwhelming sense of hopelessness. “I don’t see a way out of this,” she would say. But every day she persevered in her attempts to fix our daughter. “There really is little choice,” I told friends who sympathetically inquired about our situation. “What else can we do?”

And so I tried to manage these nighttime battles on my own as best I could. If there was an alternative to this hell, I couldn’t find it. On nights like this I found myself reflecting on the desperate case of a young mother, Dr. Killinger-Jackson, who had lived nearby.

On a sticky morning during the summer of 2000, she awoke early, took her six-month-old baby, and jumped in front of a subway car as it entered the local station. I had driven by the house owned by Dr. Killinger-Jackson many times before the tragedy. The house was, and still remains, beautifully landscaped and pristine. At night, I used to like to peek in the window as I passed because the interior looked so elegant and peaceful. I liked to believe that the house’s appearance reflected the lives of the people inside. Her death, and that of her child, was a sad and shocking story made worse by the fact that the she was a psychiatrist and the daughter of a psychologist who counseled those with depression. it seems that even experts in desperation are not immune to it.

Many were horrified by the story, but my wife often spoke empathetically about Dr. Killinger-Johnson. Not too publicly, mostly to me, she would say, “I can imagine what she was feeling. If not for Taryn and Matthew . . .” Then, eerily, her voice would drift off, ending with “I could never leave them motherless.” she would take a deep breath and steel herself up for the next challenge. She clearly empathized with the dark hole inside the perfect-looking life of our neighbor. We, too, had a house and life that looked tidy on the outside, but was a hurricane on the inside.

When Tammy would speak this way, a wave of nausea would flood over me. Not because she sounded irrational; in fact, it was just the opposite. Week after week of sleeplessness and exhaustion left me with little argumentative response. Because of Tammy’s resolve, her tenacity, and her stalwart rescue missions for our daughter, I never considered her dark fantasy to be a legitimate risk. In reality, when things got too awful, Tammy would just get in her car and drive around until she calmed down. It didn’t matter what time of night it was. And I just tried to breathe through it, not exactly praying, but repeating to myself, “Just let me get through one more night.” We had become masters of surviving Carly. Eventually morning ended the seemingly endless night; one that had never really begun. Light crept through the shades. Carly’s room filled with the happy tweets of the birds that nested near the small portal window of her room. I sat on the edge of her bed. It was close to five-thirty, and she was finally calming down, though still far from placid. Her room looked like a tornado had hit it. But by afternoon, Mari would have done her magic; everything would be back in its place, creating a temporary sense of order. Carly’s room would once again be a pretty one with custom-made pink and white drapes and a coordinated coverlet; an antique armoire and dresser with little lamps, picture frames, and figurines resting in the corners. It should, I thought, have been a room filled with giggles and “Sleep tight, don’t let the bedbugs bite,” not chaos and turmoil.

I rested my head on my hands. My face felt numb and rubbery, the way your lip feels after a shot of Novocain. I looked at my sweet, tormented little girl, her thick wavy hair erupting from her head, the big green eyes with long eyelashes, and her broad cheekbones. “So beautiful,” I whispered out loud. Inside I longed for something more. A father can give and give, but he wants something back. Just a hug. Or a silly malapropism. “Oh, Daddy! look at the slobber!” Taryn had once said, referring to the neighbor’s inflatable lobster floating in their pool. A smile and a sweet memory would be fair payment for all this.

I looked at her again; Carly was finally sleeping. Her breathing was calm and regular, her forehead damp with perspiration. I lay down gently next to her so as not to wake her, still longing for some sense of connection. I could feel my anger dissipate. There was so much I wanted for her, simple things, impossible things. “Carly, I want you to be calm and happy,” I whispered. “I want you to speak. I want you to play and have friends and go to school. I want you to accomplish something you will feel proud of. I want you to sit at the dinner table and share in the conversation. I want you to have a first boyfriend whom I will regard with skepticism, and then a husband whom I’ll welcome with open arms. I want you to have a life. I want you to know peace. I want . . .” I cuddled her closer. She was still just a little girl, soft and warm. She smelled sweet, like bath gel and shampoo. I drifted off to sleep.

Worry and sleeplessness are a toxic cocktail; one that many parents of disabled children drink all too often. What can we do to be calm, patient parents and suffer the arrows of sleeplessness? Assign nightshifts to one parent or the other? Hire night staff (who can afford that?)?  To us, it was an answerless riddle that was only solved with time.

The above excerpt, “Sleeplessness” is from CARLY’S VOICE by Arthur Fleischmann with Carly Fleischmann. Copyright © 2012 by Arthur Fleischmann. Published by Touchstone Books, a division of Simon & Schuster. Reprinted by permission. All rights reserved. Order your copy today (digital and print available).

5 Great Autism Books for Parents

What better time than Autism Awareness month to take a moment to read through scores of fantastic books for parents of children with autism.  Here are five great ones – each coming at the topic from different perspectives.

1. The Thinking Person’s Guide to Autism -  What you really need to know about autism: from autistics, parents and professionals – Edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenberg.

  • The Reference Guide for Parents: Written by veteran autism moms with practical, educated, dogma-free advice on topics ranging from what to do after diagnosis, to how to think about picky eaters, medications, sensory issues, therapies and schools.
  • Shannon Des Roches Rosa and Jennifer Byde Myers are incredibly knowledgeable about nearly every topic associated with autism.  They provided us with expert guidance that was instrumental to the formation of MyAutismTeam and the constructive culture we work hard to promote.  Their book and their blog is a terrific resource for parents.
  • “This is the book we wish we’d been given when autism first became part of our lives”, explain the authors.

2. Autism Understanding and Acceptance – Written by Stuart Duncan

  • Educating Others in Your Life About Autism: Stuart Duncan is the father of two children.  His oldest son has autism and Stuart has made it his mission to help people truly understand and accept others impacted by autism.
  • “What I would really like to do is reach parents that don’t yet have a child with autism,” explains Stuart.   To that end, he encourages readers to make copies of the e-book and share it with friends and family that may need a little more understanding of autism and how it affects others.

3. A Regular Guy: Growing Up With Autism – Written by Laura Shumaker

  • Memoir of a Mom: This is a memoir written by a remarkable mother about raising her son Matthew and navigating the waters of autism from the toddler years through to adulthood.
  • Laura explains Matthew’s desire to be a “regular guy” in a way that inspires empathy and true understanding.  As in her regular blog, she unselfishly shares her personal struggles and challenges as a mother and offers great advice on how to stay sane through all the ups and downs.
  • Laura has been a great advisor to us at MyAutismTeam and through her personal experience she has become one of the experts on handling the transition to adulthood with autism.

4. Carly’s Voice: Breaking Through Autism – Written by Arthur Fleischmann Carly Fleischmann

  • (Full disclosure: Simon & Schuster, publishers of Carly’s Voice, are promoting the book on MyAutismTeam, but that’s not why it’s on our list.)
  • The Inner Life of a Non-Verbal Individual: This is the book that shows us that non-verbal individuals with autism can and do have active, rich intellects.
  • Carly was diagnosed at aged 2 with severe autism and an oral condition that prevented her from speaking.  Doctors told her parents she’d never have the intellectual capabilities beyond that of a small child.   Then at age 10 Carly started typing and proved everyone wrong.
  • Her father, Arthur Fleischmann says, “Don’t ever give up – even when you think you’re not making progress” and adds “Your child has an inner voice and likely understands far more than you think they do.”

5.  The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be – Written by Martha Herbert, MD, PhD with Karen Weintraub

  • New Approaches to Treatment: After years of treating patients with autism and analyzing data and outcomes from multiple scientific disciplines, Dr. Martha Herbert, a pediatric neurologist at Mass General Hospital asserts that autism is a condition impacting the whole body, not just the brain.  She rejects the notion that autism is a “genetically determined, lifelong brain impairment” and focuses on treating all the symptoms associated with autism.
  • “This book offers a hopeful (though definitely not Pollyanna) view of autism and concrete steps parent can take to help their kids,”  explains co-author and Boston Globe science writer, Karen Weintraub.  By treating the physical side of autism, including sleep, digestive, and immune problems, the authors point out, “seemingly minor changes can make a major difference” in the lives of individuals with autism.

Many of the authors are part of the MyAutismTeam community.  They are incredibly approachable folks to boot!   Here are their usernames on MyAutismTeam.

ShannonRosa

JenniferBydeMyers

StuartDuncan

Arthur

Laura

Don’t be shy, post a comment on their wall if you have a question or want to leave them a comment.

- Eric

Fending Off Isolation – 5 Tips from Parents of Kids with Autism

“After my son was diagnosed with autism, we felt alone.  We had no idea what to do, or who to turn to.  Our friends couldn’t really help us.  We felt isolated, like we were re-inventing the wheel.”

While this quote is from the mother of a six-year old boy diagnosed with autism three years ago, it could have come from any parent of a child with special needs.  Feelings of isolation often start with the diagnosis.  Family and friends on Facebook may want to help, but usually do not have the foggiest idea what it truly means to have a child with autism, ADHD, Down’s Syndrome, or any other special need.  What’s more, they may even offer unhelpful advice or judgments that further isolate an already stressed out parent.

Isolation forces don’t let up after diagnosis. They resurface as parents try to…

  • Get their child into early intervention
  • Negotiate an IEP with the school
  • Fight for coverage with insurance companies
  • Explain outbursts at school
  • Explain absences from work while they tend to their child
  • Educate other parents about autism
  • Try to help their child make friends
  • Help a child stand up to bullying
  • Try to nurture a marriage
  • Manage the transition to adulthood

It’s not unusual for parents confronting these challenges to feel like it’s “them against the world.” It’s one of the reasons mothers of children with autism have stress levels that rival that of combat soldiers.

So what’s a parent of a special needs child to do?  How can you fend off these isolating forces and maintain your mental and physical health through the years? Below is the advice of several parents of children with autism who have figured out ways to overcome – or at least keep at bay – those feelings of isolation.

Solutions

1. Reach out – Don’t Go It Alone

  •  “You need to find the emotional support in your [special needs] community – online or locally,” explains Kristina Matthiesen, mother of a 6 year old boy with autism.  “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out and connect with other parents who know what you are going through.” Kristina searched for other parents near her online on MyAutismTeam and through her local mothers’ club website.  AIMES, a mother in Camas, WA adds, “Join local support networks. It helps to know you’re not alone. Network through any social media you can to find the best programs and fit for your child.”
  • Just the process of reading someone else’s story is comforting and therapeutic.  “Finding someone who is going through the same thing as my family (even if their situation is more or less severe) is so helpful.  [It helps] to know that I am not alone with what I face on a daily basis.”

2. Preserve Your Marriage or Relationship with an S.O.

  • “Parenting a child with special needs can be draining and taxing on a relationship,” explains Sharon Esch of Albuquerque, NM. “Trying to remember that our marriage is important and showing appreciation and affection for each other had really been put on the backburner for a while.  I knew that we needed to work on “us” so that we were a better team.”   To do that Sharon and her husband started having weekly lunch dates while her son is at school (an ingenious way to avoid the costs and challenges of finding a sitter).  More important Sharon reports, “we get a chance to check in with each other and have adult conversations.”
  • Autism parenting expert Laura Shumaker, author of A Regular Guy and mother of an adult with autism, worked hard (and still does) to keep her marriage strong.  See her blog How This Autism Mom Stays Married for more good ideas.

3. Do Something for Yourself – No Really, Do It

  • Request respite care so you can do simple things for yourself.  If you don’t have family or friends who can provide that respite time, check with your local Easter Sealschapter as they may offer respite care for families in need.
    • Jennifer F, of McLean, VA advises parents to, “do whatever healthy thing they can to help them cope with the challenges their family faces… a new or old hobby maybe? Even if it’s not something you can get to every day, do SOMETHING for yourself.”  She found a hobby that directly reduces isolation.  She started a blog to help her cope and share with others.   “I included a ‘Stuff That Work For Us’ page to share what little things help us get through the day.

4. Communicate Regularly and In-Person with Teachers, Aides, and Other Parents

  • James Vaughan, father of 6th-grader Kian, and organizer of FAAST – a support group for families in Utah has had consistent success working with the teachers and special education providers in his school district.  Among the many helpful pieces of advice he shared in this interview last year, was to communicate frequently with teachers and aides “all year long – not just during the IEP process”.   “We regularly check in to make sure we are helping each other,” James explains.  “We let [my son’s teachers and aides] know things we are trying at home that are working, and notify them of any changes that could impact [his] performance in school that day.”  Sharon Esch adds that she is in contact with her son’s speech and occupational therapists on a weekly basis.
  • LoriRoseYurtin, a San Jose, CA mother has been experiencing difficulties setting up play dates for her 10 year-old son.  She advises parents to  “keep the lines of communication open with the teacher and with other parents.”  Educating other parents helps them become more prepared for and receptive to play dates.  She adds, “I am very open about [my son’s] challenges and his issues with playdates.”
  • EmeraldDriver of Caldwell, ID works hard to make sure teachers of her two children understand their specific needs.  “[When] I explain [their] little quirks and how to spot them or handle them, both children tend do better at school and with their peers.”
  • Finally, several parents recommend getting an autism advocate (if you can afford one) to help you negotiate IEPs and the services the school should provide to meet that IEP.  It’s nice to have someone else on “your side of the table” during IEP negotiations.  This is particularly helpful in school districts less experienced with handling autism.

5. Help Prevent Your Child’s Isolation

  • Some kids with autism don’t try, or have a hard time, making friends.  Frequently it’s up to the parent to find ways to their child active socially.  Sharon Esch shares, “I’m always looking for community activities that he can participate in and be a part of the community.”  Over the years her Autism Team has grown to include a day camp, gymnastics classes, and piano lessons among other activities that help her son interact with others.
  • When you spot bullying at school take action by talking to the school and other parents immediately.  Enlist the help of the parents, teachers and students to look out for your child.  Many parents reiterate how critical it is to prevent bullying and encourage caring in the classroom by educating the entire classroom about autism at the beginning of the year.   Many parents have become adept at giving the 30-second explanation of why their child is behaving differently to another child.   Heather Ludeker offers this one: “He has autism. It means he thinks differently than you or me and doesn’t always know how to show it in the right way.”
  • Social integration and occupational therapy can be very helpful for teaching a child with autism the basics of social skills.
  • Finally, much has been written recently about scouting and autism.  Many parents have found success enrolling their child in cub scouts and boy scouts.  See the recent article, Scouting with Asperger’s: One Family’s Story by Amelia Ramstead in the latest Autism & Asperger’s Digest.

These are not the best or only ways to fight off isolation.  The key thing to know is that you’re not alone as a parent of a child with special needs and you should actively reach out to others.  Many other parents have been in your shoes and know how hard it is.   Connect with them and find out what they do to make their families thrive.

(This blog post, written by MyAutismTeam co-founder, Eric, was originally published on Special Education Advisor on March 20th.  SEA is a really useful site, particularly for all of you thinking about IEPs!   Thank you to the awesome parents on MyAutismTeam for sharing all this wisdom.  As usual, all the credit for the great ideas goes to them!)

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