Tag Archives: autism

Robert Ethan Saylor – When Push Comes to Shove, What Do We Really Believe?

Author’s Note:  As a mother of a 6-year-old with Down syndrome, I have considered this post carefully and tried to temper it with my desire to encourage and support others in the Down syndrome community.  If I have failed and caused pain or antagonism, I ask for grace as I try continually to parent best a child with a disability and share him with the world.

I came across the news story of Robert Ethan Saylor back in January.  You can read about him here:  http://www.huffingtonpost.com/2013/03/26/robert-ethan-saylor_n_2958777.html.  Have you seen the story?  Robert Ethan Saylor was the adult with Down syndrome who died after struggling with and being handcuffed by police officers in a Baltimore movie theater.  He had finished watching Zero Dark Thirty and was left alone in the theater while his caregiver went to fetch the car.  During that time, management asked the man to leave, he refused, and police officers moonlighting as mall security guards were called and responded to the scene.  Robert got angry, cursed at them, a struggle ensued, and he wound up in a heap on the floor with the police officers who subsequently handcuffed him.  He died from asphyxiation, complicated by serious heart issues related to his Down syndrome.

My heartfelt condolences go out to the Saylor family, and I am greatly saddened that this world has lost another precious person with Down syndrome.

Saylor family lawyer Joseph B. Espo had this to say accusing the police officers of misconduct, “One of the options they had was to simply tell the theater manager, `We’re just simply not going to deal with this.’ They should have and could have just walked away,” he said.”

His point is that because Saylor had Down syndrome, his right to behave antisocially trumped the officers’ duty to do their job.  Their job was in this case to enforce the rules of the movie theater.  But Espo says, “They should have and could have just walked away.”

Hmm.  Why?  Why?  If I was the one in the movie theater and the officers said, “We’re just simply not going to deal with this,” we would call them lazy, cowardly and insubordinate, right?

A huge part of the Down syndrome community is outraged and is calling for specialized police training specifically aimed at how to handle people with Down syndrome.  Recently there has been a similar push for the same kind of training for police officers handling people with autism.

So let me get this right:

1.  People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

2.  People with Down syndrome and other disabilities deserve to have the same opportunities as everybody else, regardless of the cost to society.

3.  We should accept people with disabilities just like they are and stop trying to “fix” them.  This is an argument I hear a lot regarding people with autism.

Which brings me back to statement number 1.

People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

Everybody else?  If “everybody else” refused to leave a theater after a movie was over, “everybody else” would be asked to leave, told to leave and if they didn’t leave, they would likely be handcuffed.  Robert Ethan Saylor was treated just like everybody else.

The medical examiner’s report includes the fact that Saylor had a reported medical history of anger issues, especially when confronted or touched.   Combine that with the fact that he weighed close to 300 pounds.  Add in his cognitive delay which is part of Down syndrome.

So you have a very large man with Down syndrome with significant anger issues left alone in a public place, and his death is on the officers’  heads because they had to restrain him and that restraint led to his death?

Have you ever seen a teenage boy or young adult with Down syndrome when they are angry?  I witnessed this at a Best Buy recently.  A teenager with Down syndrome was swiping things off of the shelves on to the floor and yelling.  The father had to throw the boy over his shoulder and leave the store.  He was not anywhere near 300 pounds, and it was still terrifying.

Part of the battle cry is that because of Saylor’s obvious Down syndrome, he basically should have been left alone and not expected to abide by the rules.

If it was me, I should have been arrested, but because Saylor has a developmental disability, he should have been excused.

Hmm.  Back to point 1.

People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.

Oh, and then there’s point 3.

We should accept people with disabilities just like they are and stop trying to “fix” them.

Saylor’s obesity and anger management issues probably are in large part due to that point #3.  He was probably allowed to eat as he pleased and act out most of his life because “it’s the Down syndrome.”  (insert autism, deafness, PPD, ADHD, ADD, bipolar disorder, communication disorder in the blank as appropriate.)

I have had the blessing lately of helping out in a preschool environment once a week.  In just four months time, I have witnessed two children, completely unrelated, going from happy, outgoing, well-adjusted 3- and 4-year-olds to two children who completely space out on occasion, stimming, spinning, avoiding eye contact, humming as a calming mechanism, etc . and my guess is they are on their way to autism.  Why?  Because for these precious children, the environment they are in is completely overwhelming and overstimmulating.  Because of their personalities and the unique way God made them, they are not ready for the crazy environment of preschool that they are being thrown into.  I have sat both of these children off to the side with me and talked to them quietly and sensitively and they have responded positively.  Is sheltering and delayed mass socialization the solution for every kid with autism?  No, of course not.  But we are losing our children left and right to diagnoses, and at least some of them can be prevented or treated organically.  I think moms instinctively know this, but our culture has made it tantamount to a crime to even suggest that a parent might be able to do something to help better the behavior and social skills of their child.

That’s what occupational therapists, physical therapists, speech therapists, applied behavior analysts are for is what we’re told.

Since when do we need a paid professional to equip our children for the world around them?

Since when?  Since moms and dads decided it’s more important to have two incomes than to raise the children they brought into the world.

Since the media and special interest groups have made it unconscionable to try to “fix” our children.

Since we as a culture have valued individuality above all us, even when one person’s right to be an individual and not be “fixed” robs everybody else of the opportunity to make and maintain rules and order.

Why should Robert Ethan Saylor or anybody else for that matter have the right to sit in a movie theater long after everybody else has left and I not have that same right?

My solution is this:

Can we give business owners, school principals, teachers, parents, Sunday school leaders, pastors, police officers and movie theaters the right to make the rules and to enforce them, and if your child is somehow unable to comply, can we put the burden on you to bridge the gap unless these people themselves want to bless you by bridging the gap for you?  Actually that used to be the standard, but somehow in the past 10 or 15 years, that standard and those rights have been slowly eroding.

Can we leave teachers alone and let them teach our children who can learn easily alongside everybody else and give the kids with special needs the aids they need, one on one if necessary, so that they can either also learn alongside everybody else or go off to work in an environment they can learn in?  Can people who are designated guardians or caretakers take responsibility for their charges’ behavior and do whatever is necessary to ensure they comply to the same rules everybody else is following whenever possible?

I am so, so thankful for the grace and support Noah’s team gives him.  We have Sunday school teachers, AWANAS leaders, gym teachers, neighbors and family members who are willing to go a little slower, be a little more forgiving, give a lot more grace and share more encouragement with Noah.  But God forbid I should ever demand it from anybody.  All of these people have graciously given it freely and when I expressed concern about undue burden, they have done more reassuring than I could have asked for.

To the police officers and movie theater management involved in this case, I support you for doing your job and for having the right to enforce reasonable rules.

To the Saylor family, I am sorry for your loss – the loss to your family, the loss to your community, the loss to your world and mine.

1 in 50 School Children Have Autism? Really?

According to http://www.foxnews.com/health/2013/03/20/health-officials-1-in-50-school-kids-have-autism/?test=latestnews, health officials report 1 in 50 school-aged children have autism.

Really?

Panic.  The masses cry epidemic, it’s getting worse, spiraling out of control.

Slow down.

Let’s consider the facts.  Here are some questions YOU SHOULD ALWAYS ask when new research is presented.

Who did the study?  The Center for Disease Control and Prevention.

What were the results of the study?  Well, the headlines read 1 in 50 School Kids Have Autism.  What it should read is 1 in 50 Parents Claim their Kid Has Autism.”

Big, big difference.

How was the study carried out?  These results were obtained via a phone survey in which only 25 percent of those contacted agreed to answer the questions.  Do you suppose most of those 25% answered the survey because they were more interested in an autism study because they at least suspect their child has autism versus parents who do not?  So another caveat to the results has to be that out of the people who agreed to participate in the survey, 1 in 50 reported their child has autism.  No proof of objective diagnoses was required, although the question presented was whether the parent had a child diagnosed with autism.  Hmm.

Strange timing for this study considering that the DSM-5 (Diagnostic and Statistical Manual) is set to have much stricter diagnostic criteria for autism, meaning diagnoses will drop considerably and many of those diagnosed with the disorder will lose their diagnosis.  The new DSM is set for publication in May 2013 – just a month and a half from now.

Granted,  I don’t understand the timing.  It seems to me likely that the CDC will use this elevated 1 in 50 number and compare it in another year or so to the numbers of people diagnosed with autism then.  Seems a little fishy to me.  Wouldn’t you think we’ll see impressive “decreases”?  The ink on this study is still wet, and yet we are already hearing from autism advocates that this new 1 in 50 number requires more funding, more services.

Friends, there’s a reason the new DSM is getting stricter on the diagnostic criteria for autism.  My guess is simply that they recognize it is being over-diagnosed.  I’ve babysat for a child with severe autism.  I know it exists.  I know milder forms of autism truly exist.   Surely there are some children who because of their disabilities do not respond to typical behavior modification efforts.  I know the struggle and the judgment that can come because of this.   Those are the kids who will not respond even to ABA therapy, and for those children and their parents we do need to extend understanding and whatever supports necessarily.

The majority of kids “on the spectrum” do not have a condition that truly debilitates them when it comes to their behavior.   Challenges, perhaps, but all our children have behavioral challenges, well, at least all mine do.  These diagnosed kids may need things like OT, ST and PT, they may have social challenges, but to add ABA therapy to the mix with a wink and a nod denies parents the opportunity to be the chief shapers of their child’s behavior.  May it never be true that a ABA therapist or psychologist would ever care more for a child than its own parents.

What I have seen is that many parents with kids with ASD use that diagnosis not as a tool to understand better how to train their child, but use it as an excuse for the poor behavior of their child.  And the medical and therapeutic community promotes this and prescribes ABA therapy – the miracle therapy for problems associated with autism.

Let’s look at ABA therapy:

I’ll borrow some language from www.autismspeaks.org, an organization that has done much for promoting advocacy and research within the autism community.  Here’s how they explain the basics of ABA therapy – you can find the complete article here:

http://www.autismsupportnetwork.com/news/proposed-dsm-5-changes-regard-asd-3478294

“ABA Techniques and Philosophy:  * The instructor uses a variety of behavior analytic procedures, some of which are directed by the instructor and others initiated by the learner.
* Parents and/or other family members and caregivers receive training so they can support learning and skill practice throughout the day.
* The learner’s day is structured to provide many opportunities – both planned and naturally occurring – to acquire and practice skills in both structured and unstructured situations.
* The learner receives an abundance of positive reinforcement for demonstrating useful skills and socially appropriate behaviors. The emphasis is on positive social interactions and enjoyable learning.
* The learner receives no reinforcement for behaviors that pose harm or prevent learning.”

(I do think ABA therapy is remiss in its emphasis in not actively addressing negative behavior, although I could see this may be a good way to initiate a behavior modification program.)

Look, I only went to community college for a couple years, but even I recognize this is based on Skinner’s  ideas about operant conditioning.  I learned that in Psychology 101.  Guys, ABA therapy is just a very regulated, extremely expensive, highly structured  and heavily monitored form of good parenting.  Our culture is demanding that good training of children should come at the expense of taxpayers and insurance companies and should be initiated by someone other than the parents.   That said, I recognize that many parents were never parented with purpose and may not have the tools to parent with purpose themselves.  In that case, ABA therapy or counseling sessions with a child psychologist with intense parental involvement may prove to be very helpful.  There’s no shame in that.  That’s a proactive response to human limitation.

If you are  struggling with the behavior of your child, whether he’s been diagnosed with a disability or not, please consider if you are actively training your child to do the things you want him to do.  Does he hate making eye contact?  Many typical children are very resistant to eye contact; give them an M&M every time they look  you in the eye when you’re speaking to them.  Better yet, stand in front of them with a small dish of M&Ms.  Say their name.  If he looks at you, great, give him a big smile and an M&M and lots of verbal encouragement.   Repeat.  Encourage him to hold the gaze longer and longer.  Reward him with another M&M and verbal encouragement.  Repeat.  Repeat.  End the session, and for the rest of the day keep those M&Ms handy and give them each time he looks you in the eye.

Does he hit and screech when he doesn’t get his way?  Remove him from the situation, give him a time out, and re-enact the offending situation, only this time talk him through the appropriate way to respond, even using hand-over-hand assistance if necessary.  This is one step beyond conditioning, it’s training.  “No, that’s not the way you do it; THIS is how you do it.”  The results from that one approach alone has transformed behavior in our home.

I am hesitant to recommend any books about child training, because I have found there to be problems with each one and I don’t want to advocate some of the suggestions.  So, please, if you read any of these, take what you want and leave the rest:

To Train Up a Child – by Michael Pearl

Shepherding a Child’s Heart – by Ted Tripp

Dare to Discipline – by James Dobson – (This is a book I would not hesitate to recommend, even though I’m not on board with 100% of what he says.  The disagreements are pretty petty.)

The Bible – Proverbs – by God.  (Unconditional endorsement here.)

How about you, are there any books you have found helpful when it comes to raising kids?

How has ABA therapy differed from your natural parenting techniques, and what was the result?

Cognitive Distortion — It’s All In the Family

I had an opportunity recently to visit with a professional whose mantra is “If you change the way you think, you can change the way you feel.  And if you change the way you feel, you will change the way you act…” or something  like that.

Sounded a little new age-ish and completely avoiding reality to me.  But I stuck around to see where he was going with it.  I can’t recall ever seeing that theory before by any legitimate source.  It sounded suspiciously akin to some ancient eastern philosophies and modern-day spiritual gurus though.  I was shocked when I flipped through a book at Goodwill and happened upon the previous owner’s worksheet that outlined this specific thought process in a self-help format.

Turns out this is classic cognitive behavioral therapy.  Considering how many years I spent in therapy in my younger years, I don’t know how I missed it.

It also turns out that in some circumstances, cognitive behavioral therapy is completely useless.  At least that’s my opinion.  I could be persuaded otherwise, and then I’d feel differently about it, and you might see a change in my behavior (i.e. writing).

Okay.   I am having WAYYYY too much fun with this.

Stick with me.

Now, although CBT turned out to be completely useless in the situation I was in, I have been looking at things quite differently lately and have seen a lot of application opportunities where it is very helpful, especially when I apply it to everybody else – (if you’d only look at things differently, there’d be no reason to be so upset with me, (daughter, son, fill in the blank).

And I’m even seeing a bit of application opportunity for myself – gasp.

Like the way lately I catch myself saying, “I can’t deal with this,” or “I’m not gonna make it through today unless I go to bed after lunch.”  I know, I know, it sounds pitiful, but seriously, I have seven kiddos and I’ve been known to do more in one morning that most people do all week.  I got fed up a couple weeks ago because I was sleeping my afternoon away day after day after day.  (Even just an hour or two of sleep tends to ruin an afternoon.)  My older children need me to be in the mix of things even though they can really take care of themselves.  When I sleep in the afternoon, rules tend to get broken, tempers seem to flare, and the chores never seem to get done.  So then we end our day with Mom upset, the children overloaded with all the work they have to cram into the last hours of the day, and nothing seems to get accomplished.

Technically, I shouldn’t need the sleep.  You can bet your bottom dollar I get my eight hours of sleep most nights.  So I started paying attention to the things that make me tired.  I have found that when those negative thoughts go through my mind, the life drains out of me and I get tired.   No, tired doesn’t adequately describe how I feel, let’s try exhausted, overwhelmed, burnt out, incompetent, and dare I say unstable?

So last week I turned over a new leaf.  It’s never enough to just stop doing a behavior (or thinking a thought); it has to be replaced with something in order to stick.  So I’ve been trying to cut those old thought patterns loose and replace them with things like, “Slow and steady,” “If I keep my cool, we can end this well,” “Even though this is question 1,217 for the day, it’s a legitimate question,” and my favorite, “Alyson, you cannot afford the luxury of this negative thought.”

Every single day last week a nap was the furthest thing from my mind.  Pretty cool, eh?

So, when I came across this thought distortion activity on Pinterest I jumped at the chance to practice some CBT with my family.

Children with Asperger's and other autism spectrum disorders can get quite a lot of upsetting thoughts. Here are 50 pre-written thought bubbles that are easy to download, print and use (teachers, SLP's, anyone, not just therapists).  Make a quick CBT, hands-on matching game or add a visual dimension to your work.

(Click the thumbnail to see the Pin or here for the original post and free printable:  http://autismteachingstrategies.com/autism-strategies/cognitive-distortion-thought-bubbles-simple-cognitive-behavioral-method-for-kids-with-high-functioning-autism/)

Yeah, yeah, we homeschoolers even counsel our own kids.

Interestingly enough, this article talks about this activity strictly for kids with autism spectrum disorders and specifically Asperger’s syndrome.  People with ASDs seem to require this kind of  psychological intervention frequently.   Thinking outside of the box, I would venture to guess that the majority of people, yes, people, not just children, would benefit from this “training.”  In my experience of raising children, so much of what is recommended for children with autism (and other special needs) is just plain good teaching, training and parenting that benefits most children, it’s just perhaps mandatory with kids with autism (and other special needs).

Back to the link.  There are different ways you can use these printable cards.  I printed the negative thoughts on red cardstock (red for stop) with black ink and the positive replacement thoughts on green cardstock (green for go) with black ink.  Even Andrew came to the table for this one.  I read the red cards and whoever could relate to thinking that thought claimed each card.  Then I read the green cards and whoever had the matching negative thought raised their hand and claimed the green card.  I was stunned as I read through the red cards how familiar some of them were to me.

Hard to believe all this talk about stinkin thinking actually turned into a great family time of sharing our weaknesses with one another.  I’m going to keep these cards around for a while and pull them out when I hear (sometimes facial expressions are so “loud” I can hear them too) some of that stinkin thinking, I’m going to tell the victim to “go green” and find me the matching positive thought.

Now, I wonder who the first person will be to remind me about my own stinkin thinking.