Posts Tagged ‘autism’

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.

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.

How one school district is drafting a policy against unlawful restraint and seclusion

Sunday, February 20th, 2011

We’ve heard the horror stories – Practices of using restraints and seclusion (R&S) in schools have humiliated, physically harmed, or even caused the deaths of  children.  Yet many schools use R&S routinely as a method to get troublesome kids, even those as young as five years old,  out of the classroom. Children on the autism spectrum are particularly vulnerable to this type of treatment.  Because they do not display physical signs of their disabilities, they are often perceived as being non-compliant, lazy or just plain ‘difficult.’ 

For Missouri, the path to fixing the problem started with one courageous mom’s outrage against the treatment of her young son. Her story caught the attention of the media, and soon other families soon came forward and began sharing their experiences. (See testimonies from the GAO on Restraint &  Seclusion at http://www.gao.gov/new.items/d09719t.pdf and more at   http://nomoseclusion.blogspot.com). Not long after that, the issue was brought to the Missouri Congress.  Legislators listened, and a bill was passed in 2010 mandating public schools to develop rules against unlawful restraint and seclusion. (The Act: http://www.moga.mo.gov/statutes/c100-199/1600000263.htm ).

But there was a big gap between mandating a policy and developing one. Some parents  wanted restraints and seclusion banned under all circumstances. Other parents insisted that some R&S  practices should stay in place, because they were terrified that their children would hurt themselves or others.  School districts were concerned that eliminating restraints and ‘time out’ rooms would disrupt class routines and upset and/or endanger other students when a child acted out. 

So, a committee was  formed to draft  the state’s Department of Elementary and Secondary Education’s rules and guidelines, beginning with definitions: What is restraint? What are acceptable/non-acceptable forms of restraint? There are a number of ways schools had restrained children in the past - medically (drugs), physically and mechanically. Drugs were not allowed to be administered. Prone and face-down restraints were particularly singled out as  harmful, and were banned. Mechanical restraints were defined as anything using straps, including clothing (one school practiced strapping children to their chairs by putting their coats on backward and zipping them up behind the backs of their chair), and were also controlled.  The situations where restraint and seclusion could be used also needed to be defined. What constitutes an emergency situation and how long could seclusion be used? For example, under the new policy, seclusion could not last longer than the time it took for the police to arrive.  Parents had to agree in writing to the use of any R&S in the IEP.

Then, the policy had to be adopted by each school district, and districts were called upon to develop their own guidelines based upon what the state had developed. In our area, The St. Louis Special School District (SSD),  is one of the few separate special education school districts in the nation.  Our local districts contract SSD to provide services, so SSD is also one of the largest special education providers in the US, providing services to over 25,000 students.   Thus, a new committee of educators and parents was formed to develop district policy.

Some of the proposed policy elements were unanimously accepted; for others, the district wouldn’t budge. Accountability, for one.  What are the consequences of an educator not following policy?There would be no separate accountability other than the district’s own code of conduct and performance standards. What about prevention? Again, the district believed that the preventative measures via behavioral interventions were sufficient to stop most disruption from escalating to the point where restraint and seclusion would be necessary. (BTW, I don’t agree with either of these. Violators should be punished, and we have a loooooong way to go before we eliminate years and years of repeated failure that causes some children’s behavior to escalate into violence.)

At last, a draft was formed and is waiting feedback from the community. It is far from perfect, but it is a good start. The draft: http://www.ssdmo.org/about_us/news_releases/SSD%20Website%201.25.11%20JGGA%20.pdf

To hear more about the path to policy,  please join me on TheCoffeeKlatch  tonight, (Sunday, Feb 20) at  9pm est/8csst on Blog Talk Radio with my guest Douglas Riggs, the Chairperson for the Missouri Planning Council for Developmental Disabilities Policy Committee. Doug is the father of a child with an intellectual disability and a committee member for the St. Louis School District’s Restraint and Seclusion task force.  http://alturl.com/2c7b

Autism Ups and Downs: When Parents Lose Their Way

Monday, September 20th, 2010

Losing our way as parents happens.  Typically, it begins with the nagging doubt  that we aren’t doing something quite right, but we cannot  for the life of us figure out what it is. Sometimes the realization is a false alarm generated by other stressors in our lives.  Other times, the doubt is based in reality, but the underlying issue is easily identified and corrected by advice from other parents,  professionals or the ever-helpful Google search engine.

But other times, we parents do come to a point where we don’t know what to do, and all of the advice, research and theory just won’t cut it.   We need hands-on training.

That’s where Steve and I are now, and that’s when I know it’s time to call in the in-home parent trainer.

I do not like in-home parent trainers. I don’t dislike them; they just scare me with their common sense and practicality.  In fact, it’s always been my experience that our parent training is similar to the “Nanny” TV shows (except there aren’t any cameras, thank goodness). In those programs, the trainer patiently and quietly observes the family as they go through their day-today routines. The trainer then comes back  to reveal parenting errors that were obvious to everyone watching, except the oblivious parents. 

We know, we’ve been clueless parents, too.  Some suggestions that we’ve fielded from our trainers are:  ”Connor might walk better if you’d let his feet hit the ground once in awhile.” (We were carrying him too much) or “So what do you think he’s feeling right now?” (Reinforcing the idea that Connor has the right to provide input into his own care and treatment options).

So as painful as it can be, in-home parent education is well worth the time, trouble and less-than-flattering view of ourselves as parents.  But I dread it, even as nice as the trainers are, and even though the cost is covered by the State.

But wouldn’t it be even nicer if we had access to parent training on a continuous basis?  I, for one, believe that the Parents as Teachers/First Steps parent education we enjoyed when Connor was an infant should extend through at least middle school.    In Missouri, the Parents as Teachers training program ends when the child begins pre-school.  The trainers, usually ex-teachers who prefer to work part-time, show up at the parent’s doorstep every month or so to check on the child’s  progress and to give parents useful and fun activities to assist his/her development. Now that Connor is 9, and is officially in the ‘tween’ stage, we could use that help now.

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!

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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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