We’ve Come A Long Way

Lombard-Street

I can’t believe it’s been ~19 months since my last blog post!  Life has certainly been interesting around here…life, death, crises, school, you name it.  One thing that I have been reflecting on is how our perspectives change as our life circumstances change.  I know, so obvious, right?  But, it’s true.

When my son with an autism spectrum disorder (ASD) was younger, I was exclusively interested in issues pertaining to him: special education, occupational therapy, intensive interventions for ASD, etc.  However, now that he is older (in college!), my focus has been on young adulthood: high school age and beyond.  I still—very much—appreciate the issues facing younger people with ASD, but my primary interest is on the stages from high school and above.

As I reflect on our journey (meaning that of my son and our family as an example), it points out a fundamental difference between the challenges facing those in the world of autism and those with other disabilities.  In what other disability community is there such a deep divide between those who want to discover a “cure” and those who want research into causes?  In what other disability community is there a class ranking the severity of the disability (high functioning, low functioning)?  Why the disparagement of organizations which do not do/believe/act as “we” believe they should?  Why are we—the autism community—not operating as a single unit?

Here’s my belief: autism spectrum disorder covers a broad group of individuals who are really too heterogeneous.  And yet (my English teacher would HATE that—beginning a sentence with “and” was taboo for so long!), we must work together.  I was talking to a mother just recently about her son, who was exhibiting aggressive behaviors (biting, kicking, scratching).  You might think that I would not have anything in common with her situation.  My son with ASD never had a problem with those behaviors.  (Well, except when he and his older brother fought.  But he had a good reason then!)  Yet, even though my son is in college and quite successful, he still has ASD.  His symptoms are different, yes; he has different challenges, yes; he still has ASD.  He shares common characteristics, albeit to a lesser degree: difficulty with social interactions, difficulty with communication, and atypical behaviors.

So, I encourage all of us in the field of autism to collaborate, to consolidate, and to focus not on dissension but on cooperation.  We have come a long way, but we still have far to go.

Mobile Crisis: HELP!

SurpriseBox

I love surprises—the pleasant kind, that is.  Not the kind where you discover that you’re late for an appointment but the car battery died in the school pick up line and it’s raining.  Oh, and I forgot my cell phone that time as well.  No, I’m talking about the kind of surprise that I experienced just recently, when I found out about a service that I did not know existed.  I wish that I had known about this last year; I could have really used it then!

At a recent community meeting of Cardinal Innovations Healthcare (the Managed Care Organization for central NC), I learned about the mobile crisis services provided by Therapeutic Alternatives, Inc.  I was impressed to learn that this agency, which contracts with the MCO to provide this service in 16 counties, serves anyone with an urgent need relating to mental health (including suicidal/homicidal ideation), developmental disability, and/or substance abuse.  Their response time is stated to be within 2 hours.  Therapeutic Alternatives will assist an individual of any age during a crisis—helping them to a hospital, detoxification facility, or psychiatric ward.  They profess to work well with the Crisis Intervention Teams of local police departments, preferring to avoid arrests by deescalating whenever possible.  These services are similar to those provided by NC START, which focuses exclusively on adults with intellectual and/or developmental disabilities and complex behavioral health needs.  However, Therapeutic Alternatives does not provide any type of case management or ongoing support, as does the NC START program; also, Therapeutic Alternatives works with any age group.

At this presentation by Therapeutic Alternatives, I specifically asked if they could respond to crises at public schools.  The answer was: yes.  This is important for several reasons.  I have worked with many families of young children who have difficulty regulating their behaviors and who sometimes have problems that have resulted in charges of assault and even arrests…of children from 5 to 10 years old.  Can you imagine a universe in which it is reasonable to charge a 5 year old child who has autism with assault on an adult?!?  I can’t.  (That clearly shows a situation in which the school has not applied itself to discovering the causes of behaviors.)  So, rather than calling in police, principals could call the mobile crisis team from Therapeutic Alternatives.  Children with behavioral issues could get the needed emergency assistance, juvenile justice could be avoided, and teachers and administrators could get the support they need.

Why isn’t this common knowledge?  Who knows…but it needs to be shared widely!  I hope that everyone reading this blog (who lives in NC) will help spread this information.  Parents of children with complex behavioral needs—whether stemming from mental health, substance abuse, or developmental disability—need to know that there IS someone to call at 3 am other than the police.  Many regional police departments have undergone crisis intervention training, but not all of them (click here for a list).  Furthermore, parents do not know if the trained team will be responding to their call for help.  Therapeutic Alternatives could be called and could work in conjunction with police if necessary, but could also replace the need for a police presence.

Disclaimer: while mobile crisis management sounds good in theory, I have yet to see it in practice.  I hope that the responders at Therapeutic Alternatives have been well trained and are versatile, given that they respond to such a broad range of crises (from mental health to substance abuse to developmental disability).  At any rate, avoiding criminal charges sounds like a good start!

I hope you find these tips helpful.  Subscribe to this blog for more useful hints; “like” Autism Parenting Solutions on Facebook for even more information and practical solutions.

Contact me at  www.AutismParentingSolutions.com for assistance!

Lisa Townsend

IEP Season–Again!

I love this series of Ryan Gosling pictures--IEPs made sexy?!?

I love this series of Ryan Gosling pictures–IEPs made sexy?!?

Well, it’s that time of year again.  Why is it that the end of winter brings not only the agony of shorts, swimsuits, and abandoned New Year’s resolutions…but also the pain of annual Individualized Education Programs (IEP)?!  I suppose it is a good time to review goals, tweak them, and add new ones.  After all, the school year is almost over (for traditional calendar schools).

For many students, there are 4 weeks of school remaining, minus one holiday.  Then, there are the many testing days, which will be very different this year, due to the implementation in NC of the Common Core and Essential Standards. In elementary school, very little happens in the second half of May except preparing for End of Grade tests (some in 3rd, 5th, and 8th grade)—and then there are retake days.  After those tests (and now, the Measures of Student Learning—Common Core tests), teachers are finishing up the year with games, activities, fun learning projects.  Frankly, I’ve always considered the last half of May and beginning of June to be wasted time.  In high school, however, it is very different—no wasted time when you’re on the block schedule!

You might surmise from the previous paragraph that I am one of many parents counting down the days until the end of school.  Yep.  Just as my son is.  Why?  Because we’re both tired of it.  And that makes it even more challenging to focus on meeting to write an annual IEP. So, here are a few tips for the end of school IEP blues:

Write your parent concerns and vision statements prior to the meeting.  This is your chance as the parent to state what your concerns really are—not just for this month, this semester, or this year, but for the rest of your child’s life.  Does your child have friends?  That’s an important concern.  Can your child answer questions?  Does your child know how to ask for help?  What will your child do after high school?  For this section of the IEP, the parent has the right to express whatever concerns they have, without their words being edited.

Think carefully about what your child needs to progress and continue to learn.  Is handwriting really important?  I don’t know about you, but almost the only thing I write is a check.  And even that can be avoided with debit or credit cards.  Technology is increasingly omnipresent, but cursive handwriting is not.  What about multiplication tables?  Important for higher math, yes, but there are accommodations for that (calculators).  At some point, we must recognize that, in order to continue accessing grade level content, we may have to be creative on accomplishing certain goals.

As the parent, you, too, can write and submit goals to the team.  Read up on the grade level standards for your child, consider your child’s ability, and write away!  You can use previous IEPs to help with the language—if and only if it has well written goals (which are Specific, Measurable, Actionable, Relevant and Time limited = SMART).

Perhaps most important: remember that IEPs are intended to be dynamic documents that can be changed as needed.  If you are not happy with the document produced, review it and consider what you would like to have changed.  Then, call another IEP meeting and make changes.

I think that many parents become stressed at this time of year, thinking that the IEP directs their child’s education for an entire year.  While the IEP does cover the special education services provided for a year, it is easily amended.  To help decrease your anxiety, think of this meeting as the first step toward a finalized IEP.

We hope you find these tips helpful.  Subscribe to this blog for more useful hints; “like” Autism Parenting Solutions on Facebook for even more information and practical solutions.

Contact me at  www.AutismParentingSolutions.com for assistance!

Lisa Townsend

Good News, Bad News

Graduation and dropouts

The release of the latest ranking of the nation’s best public high schools has me in a quandary: while I celebrate the achievements of public high schools’ advanced students, I wonder why students with disabilities are not mentioned.  Although the US News & World Report’s list, unlike the Washington Post’s, does include all students in its initial calculations, its ranking focused on black, Hispanic and economically disadvantaged students.

“U.S. News joined forces with the American Institutes for Research, a D.C.-based organization, to evaluate schools on overall student performance on state-mandated assessments, as well as how effectively schools educated their black, Hispanic and economically disadvantaged students. Performance on Advanced Placement and International Baccalaureate exams was then used to determine the degree to which schools prepare students for college-level work.”

The Washington Post’s list of Most Challenging High Schools clearly has no intent of including students with disabilities, nor any students who are not high achieving and destined for a four year college—which is very useful for parents who need this information.  That’s clear enough.

So, here’s the problem: why not include students with disabilities when compiling a list of the “best high schools” in the nation?  Don’t our students count? Students with disabilities can go to college; many of them perform quite well at postsecondary institutions.

Obviously, there are students with disabilities who are not able to go to college; there are also many who cannot graduate from high school within the preferred four year timeframe.  Not being a statistician, I’m not sure how to consider these students in calculations.  I don’t think that a school should be penalized for educating students with significant cognitive disabilities—as long as they are providing the Free Appropriate Public Education to which these, and all, students are legally entitled.

And, really, both of these lists are designed to highlight those schools who prepare students for college.  Again, useful information.  However, this list does not actually show us which high schools are the best.

Let’s talk a quick peek at the graduation rates of students with disabilities at some of the NC medal winners.  Durham School of the Arts (Durham Public School System), a gold medalist, has an overall graduation rate of 94.1%, while students with disabilities at this school graduate within four years at a rate of 87.5%.  That’s pretty good.

Another gold medalist, Carrboro High School (Chapel Hill Carrboro City Schools), has an overall graduation rate of 87.7%; however, they did not have enough students with disabilities to count that category.  Hmmm.

Northwood High School (Chatham County Schools) was ranked 6th in NC, with an overall graduation rate of 85.2%; students with disabilities graduate at a rate of 64.5%.  Not impressive.

(Wake County Schools, largest district in the state and 16th in the US by size) was ranked 16th in NC, with an overall graduation rate of 82.0%; students with disabilities graduate at a rate of 48.6%.  That is unacceptable.

Good news for NC:  in the U.S. News ranking, there were 2 schools with gold medals, 47 with silver medals, and 55 with bronze medals.

Bad news for the nation: students with disabilities weren’t counted.

We hope you find these tips helpful.  Subscribe to this blog for more useful hints; “like” Autism Parenting Solutions on Facebook for even more information and practical solutions.

Contact me at  www.AutismParentingSolutions.com for assistance!

Lisa Townsend

 

Is It Noncompliance, or Is It Autism?

I'm not misbehaving

It is so refreshing to encounter educators who truly understand children with autism spectrum disorders (ASD).  We were presenting to regular and special education teachers and administrators recently and appreciated hearing how they worked together to support their students with ASD.  So often, we encounter situations where that is not the case.  Usually, this is due to a lack of understanding of ASD and/or ineffective interventions.

Many teachers—of regular and special education classes—mistake the characteristics of autism for noncompliance and defiance.  Those two words have such negative, judgmental connotations; I do wish we could ban them from schools!  Approaching problem situations from the perspective of “noncompliance” and “defiance” simply does not help.  Instead, we need to consider the perspective of the student with ASD.  As the adults, it is incumbent on us to understand the point of view of the student with ASD, as much as possible.  Since ASD is partly a communication disorder, it is unlikely that the student can clearly communicate the rationale for his/her behaviors.  As many experts say, assume that all behavior is communication.  So, let’s use the behaviors as the attempt at communication—a good starting point.

Changing from one subject to another in a classroom sounds simple (“Let’s begin our math lesson”), yet involves many unspoken, assumed steps:

  1. Close the reading book
  2. Put away the reading book
  3. Close the reading notebook
  4. Put away the reading notebook
  5. Get out the math book
  6. Get out the math notebook
  7. Make sure you have a pencil out
  8. Make sure the pencil is sharpened
  9. Open the math notebook
  10. Listen to the teacher while doing all of this, to know which page in the book to open to

That simple action—switching from one subject to another—is actually TEN steps, none of which are spoken aloud.  Or, if they are spoken, it’s not very helpful to the visual learner. Not hard to understand why a student with ASD wouldn’t be ready for the math lesson; without an understanding of the difficulty of multi-step operations for such a student, this lack of readiness could be seen as noncompliance or refusal to begin math.

When analyzing problem situations for individuals with ASD, it is imperative to remember the core characteristics of autism spectrum disorders:

  • Differences in social communication and social interaction; including the ability to ask for help, to ask for explanations, and understanding slang or idioms
  • Differences in patterns of behavior, interests, or activities; including sensory differences, reliance on structure, routine and consistency; differences in thinking and learning, including slower processing time

When we remember to consider these differences, many alternatives present themselves to solving problems: use visuals; pair students with peer buddies; have clear instructions on the desk; begin transitions earlier to allow for delayed processing time; and many others.

Teaching these transitions can lead to gains in confidence for the student, to a reduction of frustration for the teacher, and to increased learning time.  Isn’t that good for everyone?  All we have to do is remember how students with ASD think and learn…

We hope you find these tips helpful.  Subscribe to this blog for more useful hints; “like” Autism Parenting Solutions on Facebook for even more information and practical solutions.

Contact me at  www.AutismParentingSolutions.com for assistance!

Lisa Townsend

UN Disabilities Treaty

Well, I’m back after a long hiatus, to describe an outrageous, uneducated, narrow-minded affront to all people with disabilities.  That would be the vote of the U.S. Senate, earlier in December 2012, which refused to ratify the United Nations Convention on the Rights of Persons with Disabilities (LOVE that People First language!!), which was originally passed by the UN in 2006.

This, despite the fact that the treaty was signed by President George W. Bush, President Barack Obama, and 153 other countries.

I supposed I must include the “argument” of those who opposed the treaty: that U.N. committee members could pass resolutions that would undermine or outright negate U.S. laws.

Seriously?  Has the United States of America EVER allowed an outside body to negate U.S. laws?!?

It’s a sad day when politicians can’t come together over something as inherently good and necessary as upholding the rights of individuals with disabilities around the world.  After all, not every country has their version of the Americans with Disabilities Act.  Wouldn’t it be nice if they did?

Written by Lisa Townsend

Would You Trade Loss of Some Privacy for Safety? I Would!

Take a look at some of the online petitions, read up on your state’s restraint laws, get involved: this is about the safety of children, whether it’s your child or your neighbor’s.

If there is one topic that we—all people—can unite around, it is outrage about child abuse.  The recent sentencing of Jerry Sandusky (former Penn State University assistant football coach) reminded me of other situations involving children with autism, more often physical abuse than sexual…but still awful to contemplate.  As parents, we entrust schools to educate our children, to teach them some social skills, and to prepare them for life after school (I know, in an ideal world).  What happens when a child cannot tell you about his/her day? What happens when a child comes home from school with bruises, or is suddenly afraid to return to school?  What about a child with significant challenging behaviors or who is physically aggressive?

For parents of children who cannot speak/communicate or who may have physical behaviors, knowing that physical restraint is always an option for school staff is especially anxiety-producing.  How do you know that all of the staff are well trained? Who is restraining the child?  Where, when and how often is the child being restrained?  In NC, for example, parents only have to be notified if restraint is used incorrectly: if the child is injured, if illegal restraint is used, etc.  What if a child comes home with bruises, but the teacher and aides deny any restraint?  If the child can’t talk or reliably communicate, there is no way to prove what happened.  Teachers and aides often (NOT always) stick together.  Of course, there have been cases where teachers or aides have been the whistleblower, too.

Here’s a scary fact: one of the unspoken goals in school is to teach compliance (sit quietly, raise your hand, ask permission to go to the bathroom, stand in line…).  Physical abuse can happen when a child is noncompliant (doesn’t that sound judgmental?!), is physically aggressive, is verbally offensive, or attempts to run away.  Sometimes it is accidental (think protecting other children or staff), sometimes it is due to lack of training, sometimes people panic. Honest and immediate reporting to parents should be required whenever restraint is used.

Did you know that school employees who have been accused of abuse, but not proven to have committed it, are often simply transferred to another school or district (similar to Catholic priests)?  I absolutely believe that one is innocent until proven guilty…but how do you prove guilt when the victim can’t speak or communicate?  So glad you asked! Because the answer is pretty simple, and many parents have been clamoring for it for years: video surveillance in special education classrooms.  Tara Heidinger has an online petition at Change.org, urging cameras in classrooms, after her son was abused.  She has also sent a letter to President Obama.

Many areas of schools, such as hallways, cafeterias, and lobbies, already have cameras.  School buses often have video cameras for safety issues.  While there is much discussion of privacy issues, it seems to me that a child’s safety trumps privacy.  Take a look at some of the online petitions, read up on your state’s restraint laws, get involved: this is about the safety of children, whether it’s your child or your neighbor’s.

At Autism Parenting Solutions, we are able to help parents and professionals provide those necessary supports while encouraging independence.  Contact us at www.AutismParentingSolutions.com for assistance!

We hope you find these tips helpful.  Subscribe to our blog for more useful hints; “like” us on Facebook for even more information and practical solutions.

Written by Lisa Townsend


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