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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.

Tags: advocacy for autism, autism, autism parenting, behavioral issues, sensory issues
Posted in Advocacy, Education, General Parenting, Uncategorized | 2 Comments »

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!)

Tags: autism, autism diagnosis, autism parenting, blog talk radio, disabilities, Education, independent living, Marianne Russo, Safety, The Coffee Klatch
Posted in Family Support, General Parenting, Uncategorized | No Comments »

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.

Tags: ABA, autism behavior, behavioral plan, behavioral plans for children with autism
Posted in Education, General Parenting, Uncategorized | 2 Comments »

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

Tags: autism, autism parenting, Safety, special education
Posted in Uncategorized | No Comments »

Autism policy – How should we advise our state legislators?

Sunday, January 23rd, 2011

We are excited to participate in a pilot program sponsored by our local Arc chapter where we will be hosting a small group of parents, self-advocates and local legislators. The purpose of the meeting is to share our experiences and feedback about what’s working or not working with current policies and practices related to autism and other disabilities. I’m certain the stories will be compelling, heart-wrenching and inspiring, as in the case of one friend who was placed in a state-run hab center for years but is now *finally* living happily on his own.

But I know that at some point, one of the legislators will turn to me and say “Well, then, you’ve made your case for change. What can we do to help?”

I’m not sure if I am ready to answer the question. I do have some ideas, but I could use your help in taking these suggestions to a higher and more polished level. Here’s a start:

Employment. I would like to see individuals with autism/disabilities have more opportunities for gainful employment. Sheltered workshops, though well-intentioned, are not the answer. If you don’t believe our kids are capable of having a true vocation, read Real Jobs for Real People, published by the Missouri Council for Developmental Disabilities. You can also check out the Danish company Specialisterne, which has received high praise for hiring autistic individuals (and their incredible attention to detail) to test new software. There are tax credits available to employers, but I think we need to take it a step further by cultivating a perception in our business communities that people with developmental disabilities are a willing, eager and valuable talent pool.

Housing. Okay, I admit it. I hate hab centers. Despite 11 years after the Olmstead Act (which states that people deserve the chance to live in the community), Missouri is one of 11 states which still places has individuals with disabilities in state-run institutions. Part of the problem is that there is very little affordable housing, so those that are in an institution have no other place to go.

Fortunately, there is an excellent program called Money Follows the Person, which enables the individual to have more choice over his/her living arrangements. The way it works is that coordinators help the person to find a good place to live - whether it involves sharing an apartment with a roommate, finding a caregiver family or renting/buying a place on his own. Then, checks and balances are built into a person-centered plan to ensure that needed services and funding for those services will continue. Another beautiful thing about Money Follows the Person is that it grants a small amount (about $2500 per person) of one-time funds to help the transition. Sometimes the money is used for something as simple as a smaller wheelchair that will allow the person to move through smaller doorways in the new home or for assistive technology. I would like to see more of these programs put in place for adults with disabilities to transition not only from hab centers, but also from group homes, to more independent living.

Education.It irritates me that the measure of success for many special education schools and therapists is to ‘mainstream the children in a public school.’ What’s up with that? My son has been mainstreamed since a moms-day-out program and nursery school. I want the measure of my son’s educational success to be 1) getting into college and 2) being prepared for the career of his choosing. Pu-lease. And don’t even think about dumping him into vo-tech in high school, either. I don’t mind if he takes a few community college classes or enrolls in online college courses for enrichment and career training, but I don’t want to stop him from having the opportunity to take the same high-school offerings as anyone else.

I would also like to encourage educators to balance ’catching-up’ efforts with nurturing a student’s strengths. My child may find reading challenging, but he’s an expert in social studies and science. Why should he have to play to his lowest common denominator?

Finally, I think some sort of voucher program for private schools and tutoring would be very helpful. We need to teach educators that our children are capable of learning, but they might need to be taught differently. And yes, we understand that teachers already have ‘way too much to do, so the vouchers would allow us to supplement our children’s education without putting more on their plates.

Parent Support. We need all the help we can get! Remember, ours is the first generation that wasn’t routinely enocouraged to place children with autism into institutions. We don’t know what we are doing half of the time. We are writing the handbook, so please, please…keep funding the Parents as Teachers program, parent-to-parent mentor programs and in-home parent training. And while you are at it, Mr/Ms Legislator, please support the continuation of those supports until our children are 30…well, okay, at least 21.

Health Care. We’re lucky – we have what most people would consider to be great insurance. We can get free office visits, free antibiotics, free teeth-cleaning, free emergency room visits, but we can’t get free language therapy for our son. The new Missouri autism insurance reform bill should help *we think,* but we’d like to see therapy coverage for adults after the age of 18. After all, a person is never too old to learn, and some of our kids simply aren’t ready to develop certain skills until they are well past their teens. I have a dear friend who has had difficulty with reading her entire life just start to sail through hefty chapter books at age 22!

Ending the Wait List. Why is it that the money being spent on social programs isn’t hitting the right places? It is similar to the aid programs that was granted to third world countries in the late 60s/early 70s – much of the money went into a dictator’s pocket! (there’s an analogy to polish up, if you would be so kind). In other words, the money is flowing, but there are still too many people on wait lists for housing and services. Sometimes, I think that the people who benefit the most are the sheltered workshop owners, the hab center workers and other administrators of “Disability, Incorporated,” while those in the trenches are underpaid and overworked. Re-engineering or right-sizing may sound like harsh terms, but I bet that if we streamline the current convoluted processes and paperwork, then we may be able to generate enough savings to help put those monies in the hands of the families that need them the most.

Posted in Advocacy, Uncategorized | 3 Comments »

Autism and restoring a mom’s trust in public schools

Thursday, November 4th, 2010

I’m afraid to believe that my son’s 4th grade in his new school is going so well. Connor is in a gen ed class 93% of the time; he is making As and Bs (albeit with modified programs for reading and writing); he even participated in an after-school creative writing class with 12 other students without his para. His teachers are great, and they understand that despite his language delays, he is a very bright little boy who can handle high expectations if given the chance. The kids at the school are also wonderful, and Connor has made three new friends. The administrators and the special ed team are outstanding. I take Connor to school, so I don’t worry about bullying on the bus (if there would be any – this seems to be a very nice bunch of kids, perhaps due in part to the school administrators’ emphasis on character education and zero tolerance for bullying).

So what am I so $%@! afraid of?

The simple answer is that I’m afraid to trust that everything really is going so well. So I find myself over-reacting to the tiniest things – Connor got a D on his math test yesterday (Is he falling behind?); Connor had a tantrum at the end of the school day (Oh no! That hasn’t happened in ages–do we need to bring in a specialist? Are the other kids being mean to him? Will the teachers label him as a trouble-maker?). And then, I find myself emailing the teacher and resource manager every day and googling every single person in the school to check up on their qualifications and to make sure they don’t have a criminal record.

Honestly, I’m wound so tight that I could give a woodpecker a headache. Even I am embarrassed by my behavior.

I can’t say my fears are completely unwarranted. When my child was strapped into a chair in pres-school or when he was left languishing in 100 degree heat during ’special ed’ summer school or when his his present level of performance was deliberately understated to keep him under the Phase II label (even though he was never in a Phase II classroom)…it put a scar on my very soul…and goodness only knows what harm it did to my son. So, I kinda feel justified for being so hyper-vigilant …especially since almost all of our issues occurred with the people who were supposed to be helping him – his special education team!

So, I am forcing myself to let up a little, to see what happens this year, and above all, to learn to trust in the much-maligned, but more-often-heroic public school system. It takes time and effort to let go of that suspicion, distrust and unhealthy paranoia. But I’m working on it, and am taking a little bit of time to work on me. Maybe I’ll even get a new haircut, start exercising, and reach out to old friends..wouldn’t that be something different!

Tags: autism education, autism public school education, autism special education
Posted in Advocacy, Education, Family Support, General Parenting, Uncategorized | 3 Comments »

Autism and the Hobgoblin of Comparisons

Wednesday, July 7th, 2010

‘Comparison, a great teacher told me, is the cardinal sin of modern life. It traps us in a game we can’t win. Once we define ourselves in terms of others we lose the freedom to shape our own lives.’ Jim Collins, Author ‘Built to Last’

Comparisons are my weakness. I compare everything and everyone. I compare my son to his typically developing peers, his high-achieving cousins and other children on the autism spectrum. What am I looking for? Any clue to demonstrate that “Our son is making progress” or “Connor is rapidly closing the achievement gap.” Of course Connor is making progress! Every day and in every way he learns something new, just like everyone else. How silly I am to think like this, and yet my heart sinks to my toes when I see a group of children talking comfortably with each other as though they were already adults or throwing a baseball back and forth with ease. I also compare myself to other parents. What might I be missing? A new therapy? A new therapist, school or doctor? A new diet? Am I spending enough time with Connor? Do I have the right balance of focusing on his strengths and interests while working on/making accommodations for the areas that are most difficult for him?

Another comparison I frequently engage in is to search for things not to do. Much of this is also rooted in my own insecurity, such as “There is no way I’m going to act like that with my kid. Those are really bad parents who didn’t even care to get their child the help she needed, and now she’s a mess.” Really, who am I to judge?

Most of the time, I stay fairly level -headed, but a little self-doubting part of me wonders if there is more I could be doing to help prepare Connor for adulthood, and how to avoid the problems I’ve witnessed with other families who deal with drugs, alcoholism, neglect or abdication of their roles as parents. The specter of those children who grow up without having good choices haunts me. But comparison is much easier than the very difficult task of figuring out precisely what my child needs and how to balance those interventions with the same [and very real] quality of life and acceptance issues that our society- schools, law enforcement, employers - need to overcome on behalf of the thousands of individuals with autism…including my son.

Posted in Advocacy, General Parenting, Uncategorized | No Comments »

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