Archive for the ‘General Parenting’ Topic

Five things I’ve learned about parenting an autistic child

Saturday, October 8th, 2011

Autism is still a mystery to me, but I’ve learned a few things over the last ten years (and no doubt there will be more of these in the next ten years). Here’s a few of my lessons-learned. What are yours?

1. I don’t trust anyone to say what my son’s abilities are, or will be. Autism is a developmental delay, not a developmental stasis. Studies are finally emerging that show most IQ tests underestimate the intelligence of kids with autism. We’ve had doctors and teachers tell us that Connor wouldn’t be able to do this or perform that, and he’s proven them wrong every time.

2. At least half of the therapies we put our son through didn’t do any good. Part of the reason was that many therapists and special educators weren’t very good, either. Another part of the reason was our son just wasn’t ready to learn what we wanted him to learn…but he got there eventually.

3. I learned to never underestimate my son’s sensory difficulties, nor disguise them as behavioral issues.

4. No one knows what our son needs more than our son. When he finally talked at age 4, I was astounded by his insight. He started attending his own IEP in 4th grade, and has been a valuable and insightful contributor. Through him, we’ve learned more about his learning styles (visual; top-down vs bottom up; no repetition or breaking things down into small tasks help unless he ‘gets’ the big picture) than any assessment.

5. Inclusion and mainstreaming are entirely different concepts. Placing a child in a mainstream classroom doesn’t mean he’ll be included. My son used to complain that he wished everyone was treated ‘the same’ …and with the proper classroom accommodations, I think he’s finally getting his wish.

Mom, Will I Outgrow Autism?

Monday, September 5th, 2011

“Mom, will I outgrow autism?”

“Son, I don’t know. Some doctors say autism lasts a lifetime; others say some kids do outgrow it. I hope both are correct. I hope you learn how to handle the things that are difficult for you, but I also hope you never lose the gifts that autism has given you — your incredible memory, your powers of observation and your ability to envision the world as it should be.”

My son’s triennial evaluation is coming due this fall, and my son is doing so well in school that he may indeed lose his educational diagnosis of autism. He is understandably proud of his accomplishments, but after living with autism for so long, it is strange to contemplate life without it.

I hope I answered his question well.

POSTSCRIPT: A friend reminded me that some states do not require an educational diagnosis by the school district (separate from a medical diagnosis) to receive services. Our son’s medical diagnosis will not change. His educational diagnosis, should we choose to pursue a new one, will likely change to ADHD, at which point we would seriously consider moving from the protection of an IEP to a 504 arrangement with classroom accommodations. We have found that our son has outgrown many of the services he used to receive.

Advocacy Training – A transformative experience for parents of special needs children

Saturday, June 25th, 2011

Advocacy is good for our kids, but many of didn’t realize that it is good for parents, too. A new study completed by doctoral student Michelle Reynolds for the University of Missouri cites that parents who take advocacy courses become stronger and more confident advocates for their children with disabilities. Among the main benefits of advocacy for parents are:

A decrease in intimidation. Confident advocates felt less likely to be afraid to express their options and disagree when dealing with medical and educational staff.

Hopefulness about the future. Parents learn how to navigate the maze of organizations, manage transitions and learn about success stories of children who have ‘made it’ in the real world.

A sense of community. Parents can also rely on each other, thus lessening the sense of isolation that many of us face.

More respect for our children. Sidelining the focus on ‘fixing’ our kids, we learn how to celebrate their individuality, while identifying and meeting their needs.

The increase in control, hopefulness and community help reduce the oft-mentioned symptoms of combat-fatigue which parents of children with disabilities encounter due to fear, worry, isolation and guilt. Advocacy training marks a transformative experience where parents obtain an increased sense of control and learn to feel better about themselves and about the future for their children. Read the full report here.

The Coffee Klatch – an oasis for parents of children with disabilities

Wednesday, May 4th, 2011

The Coffee Klatch  is the social networking version of  sharing a cup of coffee with a good friend.  Tailored to  parents of special needs children,  The Coffee Klatch doesn’t limit topics to one diagnosis, one advocacy issue or one type of ability.  Perhaps its very eclecticism is what makes The Coffee Klatch  so appealing to parents. After all, our kids typically don’t  have only  an autism diagnosis; they also have concomitant medical issues – from ADHD to Down’s Syndrome to epilepsy to Tourette’s Syndrome to Sensory Processing Disorders to many, many others. 

 The Coffee Klatch provides an  engaging and non-threatening community. Marianne Russo, creator and lead moderator of the Coffee Klatch, is highly sensitive to the fact that parents have different levels of advocacy training, differing views about disabilities, and different needs for information. All moderators are volunteers and are parents of children with special needs.

The Coffee Klatch offers  Tweetchats  four mornings  per week, and blog talk radio shows two nights per week.  Guests include award winning authors, expert psychiatrists, psychologists, physicians, advocates and internationally renowned children’s foundations.  Parents are encouraged to ask questions from these highly qualified professionals from the comfort of their own living rooms. Blogtalks are archived on The Coffee Klatch’s website in case parents miss a session. Some of the interviewees include:

  • Temple Grandin, renowned autism self-advocate
  • Dr. Susan Swedo, principal investigator and Chief of the Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health
  • Dr. Allen Francis, former chair for the DSM-IV Task Force
  • Denis Goldberg, Special Education Advisor
  • Carol Kranowitz, author of the “The Out-of-Sync Child” and Joye Newman, founder of Kids Moving Company; Carol and Joye co-authored the bestselling “Growing an In-Sync Child”
  • Dr. Russell Barkley, ADHD expert and thought-leader
  • Wayne Lindholm, President of the Down’s Syndrome Foundation
  • Areva Martin, attorney and author of “The Everyday Advocate”
  • Dennis Debbault, the leading global voice in autism training for law enforcement and emergency responders
  • Amalia Starr, independent living coach
  • Dr. Valerie Hu, a Biochemistry and Molecular Biology Professor at George Washington University, providing ground-breaking research on autism sub-types
  • Doug Riggs of the Missouri Planning Council for Developmental Disabilities and advocate against unlawful restraint and seclusion.
  • John Elder Robison, autism self-advocate and author of “Look Me in the Eye”
  • Dr. Russell Hyken,  Child Psychologist and Educational Consultant

For more information, please visit The Coffee Klatch’s new website and a calendar of upcoming events at www.TheCoffeeKlatch.com(Note from Mae: I liked the site so much I begged Marianne to allow me to be a moderator.  I hope you can join us. I’d love to meet you on one of the chats someday!)

 

Keeping It Simple: Dr. Temple Grandin’s Top 5 Parenting Tips for Autism

Saturday, April 9th, 2011

Sometimes I get lost in all of the therapies, advice, opinions and ‘new findings’ related to autism. That’s when I refer back to five simple tips for autism parenting provided by the renowned Dr. Temple Granding  last year during an interview for one of my Examiner.com columns.  I find myself referring back to these rules again and again to regain my focus and areas of priority. Here are the five tips, re-posted for your convenience. I hope they help other parents as they have helped me:

1. Develop the child’s areas of strengths. Focusing only on delays and weaknesses is not the answer. Developing areas of strength, on the other hand, helps build a child’s confidence and the courage to try new things.  When parents believe that their children can accomplish goals, children learn to believe likewise.

2.Teach good manners, particularly turn-taking. Good manners are the basis of strong social skills. But good manners aren’t only a matter of teaching a child how to say their pleases and thank yous. Grandin believes that turn-taking is particularly important as it teaches children to adapt to many different social situations – from conversational flows to sports to the ubiquitous waiting games of life. And teaching turn-taking can be fun. “I learned turn-taking by playing the game of Parcheesi with my mother,’ said Grandin. Interactive games are a prime example of what experts call educational play, a highly effective teaching technique.

3. Expose autistic children to stressors, but recognize the seriousness of sensory triggers, “Don’t ignore sensory overload,” Grandin warns. “It is very real.” She reports that sensory issues do tend to get better over time, especially with repeated exposure to what causes the stress. “Sometimes sensory stress is related to smell, sometimes to touch, sometimes to taste or to temperature,” explains Grandin. Identifying the causes of sensory overload is the first step in ameliorating them, and there are many fine occupational therapists who can help de-sensitize a child to these stressors.

4. Avoid long strings of instruction and employ 1-1 teaching as needed. Keep directions short and to the point. “We simply cannot follow long strings of verbal instructions,” explained Grandin. And, because some concepts are very difficult to learn, individualized help is far more effective than traditional classroom instruction.

5. Monitor and manage progress. Grandin emphasizes the importance of monitoring and measuring progress. If a child isn’t progressing, parents should try a different approach, either by using a different technique, a different setting, a different teacher or by adding more one-to-one tutoring.

Behavioral Plans for Children with Autism

Friday, March 11th, 2011

Do you remember getting presents or special privileges for making good grades in school? If so, do you remember how proud you were when your hard work paid off?  Me, too, which is why I was so excited when Connor’s teachers suggested we implement a behavioral incentive plan at school. And,  since I am no stranger to incentive plans (considering I’ve spent most of my career working on points-based rewards programs for airlines, hotel chains. telecommunications firms and credit card companies), I was delighted that I could contribute to the discussion.

But school behavioral plans are quite different than any other incentive program I’ve ever encountered. Some examples I saw reminded me of what a warden would implement for prison inmates, not what loving parents and nurturing educators would develop for elementary school students. Fortunately, the school staff and I worked together, and we eventually came up with a program that has helped Connor make progress on a key goal of working more independently. Here are a few general rules that I would encourage all parents and educators apply when designing a behavioral plan:

- Remember that a behavioral plan is a rewardsprogram. Negative reinforcers are not helpful, whether they be frowny-faces, ’strikes,’ or lack of privileges.  Progress reports should be private — placing ’scores’ on the student’s desk for all to see is a negative reinforcer.  Rewards and communications should also be age-appropriate – happy faces may signal to a 4th grader that he is still being viewed as a kindergartner. A rewards program is, by definition, a positive reinforcement for performing  a set of desired behaviors. Negative rewards create fear and shame.

-  Ask the individual to participate in measuring his own performance. Another tenet of rewards programs is choice.  Having a teacher looking over the student’s shoulder and judging him takes away his ability to provide feedback to himself, which is a key component of self-correction. After all, we choose to fly one airline over another to receive miles toward a free trip. The same is true for students – the child must be actively engaged in the program to make the conscious choice to behave one way over another.

- Do not ask the student to do what he cannot do. The requirements to earn a reward should be attainable, not impossible. The idea is to motivate incrementally better behavior.  That doesn’t mean bribing the child to do what he already feels comfortable doing. Instead, the goals should be based upon  improvements that may be challenging, but are still withinreach. Asking a student to complete double-digit division problems when he is still learning his multiplication tables is unreasonable. Be aware that a student may need extra training and accommodations to be able to make the necessary changes. Modeling the appropriate behavior (we used the Model Me Kids Model Me Organization and Motivation social skills training DVD),  preferred seating and assistive technology are examples of enablers that can help the child do his or her best.

- Make sure the plan goals and rules are simple, clear, and match those as stated in the IEP. For example, executive functioning objectives, such as turning in homework, completing seatwork, checking work, etc., can be translated into a behavioral plan goal, such as ”complete each task assigned (or ask for help) per each school day period with fewer than two prompts.”

- Rewards should be immediate and allocated based upon the magnitude of change.  It is no fun to do what you are supposed to do only to have to wait two weeks to receive your prize. So, daily rewards, such as receiving a favorite treat or  privilege (e.g., computer time) can help maintain confidence while reaching toward some of the higher goals.  For example, if Connor can go an entire day doing what he is supposed to do without prompts, he receives some small gift -  ice cream, a cookie or  a song download. This keeps him engaged in the plan, similar to the membership benefits adults receives from a frequent shopper program. But the first time he accomplishes something extremely difficult, he receives a  HUGE prize, or at least hugely important to him.  These milestone awards should correspond with the child’s interests;  for example, a new Lego set, an MP3 player, tickets to a baseball game, or the least expensive, but probably most special thing in the world, a special  outing with mom and/or dad. In the adult world, this would be reaching sufficient points to earn a free airline ticket.

Above all, respect the dignity and the effort of the students. They are working very hard to please you. A behavioral plan may be tracked at school, but must supported with rewards and encouragement at home.

Well-intentioned vs. effective (the spectrum of autism parenting)

Wednesday, December 22nd, 2010

We  all go through those times where we either a) defer decision-making to the experts or b) come to an IEP meeting with both barrels loaded, ready to fight to the death for our kids. What we often forget is that raising a child – any child- requires the help of the community, the parents and the child himself. What we cannot forget is that the parents are the glue that holds all the pieces together. As parents, we try to do our best, but there is a difference between being well-intentioned and being effective advocates. An effective parent advocate is one who is:

- Well-informed. That means that she keeps track of the latest news and developments related to autism spectrum disorders. She knows her rights and the rights of her children, and she knows the process for securing those rights if they have been disregarded.

- Well-connected.  That means that he or she has volunteered in a classroom or at a school fundraiser. She knows the culture and flow of the school and its parent community. She knows her child’s teachers, therapists, guidance counselor and (very importantly) the school principal. She has also met with school district administrators and school board members. She not only knows what resources are currently available, she also understands what resources could be available, and what it would take to secure them. She has  met her city council members, state and federal legislators and/or their staffs.

- Well-in tune. An effective parent advocate has a pretty good idea of what her child’s issues are, and what he needs to succeed in his school and community environments. If she doesn’t, she will ask for help to get to that point. And, rather than rely entirely on instinct, she will use data, preferably collected from multiple sources. That data will be generated via observation, testing, private therapists/evaluators, and medical opinions from developmental pediatricians, neurologists, etc. An effective parent (and care team) will review the data in its entirety rather than relying solely on anecdotal information or a single IQ test.

- Well-spoken.  A well-informed parent is able to generate credibility.  She writes grammatically correct sentences, is convincing and persuasive  in her speech and her facts are unassailable. Ahem…here is where I need to caveat the do-as-I-say-not-as-I-do.. She remains calm and professional under all circumstances. :-)

So on we go, never perfect, but always up, up and up the spectrum of autism parenting.

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. 

Mama, Don’t Cry for Me a song written by Mandy Harker and Sharee Wolfley and Sung by Kalii Palmer. Listen when you really, really need the strength to keep believing that everything will be okay.

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Co-moderator, The Coffee Klatch blog talk radio and tweetchat 

Reporter,  Autism Hangout 

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