Getting Involved

I've already said that I learn a lot from children.  Such was the case last weekend when our family participated in a charity fundraiser, organized by my nephew, Stephen.

Earlier this year, Stephen attended a meeting where representatives from Free the Children presented the audience with the idea of using your personal gifts, combined with issues you care about to improve the world.  This concept inspired Stephen, who (with a lot of help from his mom) organized Water Walk Utah.  The goal was to raise money to build a well for a village in Kenya so that children who carry water long distances to help take care of their families would, instead, be able to attend school.   Walkers who signed up hoisted whatever water they could carry the distance of a 5k.  Stephen's goal was $5,000.00, the cost of drilling one well.  By the end of the day Stephen had raised over $8,000.00 to contribute to Free the Children, and raised awareness around the issue of educational opportunities for children in another part of the world.

Here in our own country, where education is considered a right protected by law, the issues are different.  Partly because of Stephen, and partly because I've been posting about similar issues lately, I'm more aware of discussions going on around me about education.

At the beginning of the week I was with some other women who were talking about the new documentary Waiting For Superman, which had been featured on The Oprah Winfrey Show.  I'm not sure where I've been lately, but I hadn't heard of the documentary before that conversation.  (No offense to Oprah.  I just don't watch a lot of TV.)  I was both intrigued and validated by this conversation; intrigued because of the level of concern surrounding the issue, and validated that I wasn't the only one concerned about the quality of education in our country.

As the week progressed, l began hearing snippets of discussion about President Obama's comments on The Today Show (NBC), also addressing the quality of education in our country.  Through the week various discussions around the issue of educational quality have taken place on NBC's Education Nation.  Regardless of your politics, the need to discuss and be involved in the issue of education isn't new, and clearly continues to capture universal interest.

Below are some additional resources that provide more information about issues facing education, and give ideas for individual action and involvement.  No effort is too small.

• PTA (Parent Teacher Association) is a great connection between schools and parents, and offers a lot of information as well as opportunities for involvement, fundraising, and community outreach.  If your school is not affiliated with PTA, get involved in your school's individual parent-teacher organization.
• NEA (National Education Association) and NEA-parents both offer unlimited resources, ideas connections, and opportunities for involvement for both parents and professionals.
• PIRC (Parent Information Resource Center) offers state by state directories, contacts, and resources available to parents as well as free online learning opportunities and opportunities for discussion.

Could it really be as simple as the idea that inspired Stephen to action?  Start where we are.  Do what we can.  Get involved.  Ask questions.  Think innovatively.  Be informed.  Follow the formula that inspired Stephen:  Your gifts + Your issues = A Better World.

When Simple Interventions Don't Work: IEP and 504 Suggestions

Helen Keller once said, "One can never consent to creep when one feels an impulse to soar."  What acknowledgement of the spark within every human spirit to find fulfillment in life!

Miss Keller's own life became a representation of this ideal.  As the first deaf-blind person to earn a college degree, she became one of the pioneers of political activism and advocacy for people with disabilities.  In spite of her personal accomplishments, her political views were unpopular and antagonists questioned her intelligence.  Ironic, isn't it?  I love her response.  Referring to critics as "socially blind and deaf,"  she stated, "The most pathetic person in the world is someone who has sight, but has no vision."  

In a century where it is now commonplace to see children with physical and mental disabilities receiving an education alongside typically developing children, it would seem that we have caught the vision.  Regardless, laws to protect the educational rights of children have received both praise and criticism.  As you can imagine, implementation of such laws is as varied as the states and individual districts across our country.  Factors such as varying budgets and student population require a wide range of adaptation, begging the concern that the individual needs of students are lost in the process of protecting their rights.  Is it possible that Helen Keller's description of sight with no vision might still apply?

The words IEP and 504 might seem foreign if you're unfamiliar with the educational world of a child with disabilities.  IEP stands for Individualized Education Plan, and was a product of the Individuals with Disabilities Education Act (IDEA).  504 Accommodtions refers specifically to section 504 of the The Rehabilitation Act and Americans with Disabilities Act which protects the rights of individuals with disabilities to participate in federally funded activities. (Yes folks, that includes public school.)

To differentiate between the need for an IEP or a 504, think academic progress vs. academic access.  IEP's focus more on helping a student to progress toward grade-level goals.  A 504 is an accommodation that gives children access to educational services.

The need for both IEP's and 504's is based on eligibility.  A specific delay, disability, impairment, or illness must be identified, and it must be shown that the condition affects the child's ability to perform in school.  The second part of that eligibility requirement is frequently overlooked.  Imagine the cost to school systems if every child with any identified illness or disability was required to receive special educational services.


That said, once a child has been found eligible, the possibilities are limitless for educational goals and accommodations.  You could read all day about IEP and 504 Accommodations via the search engine on  your computer, and if you're interested in learning more, that isn't a bad idea.  Parents should educate themselves before beginning the eligibility process with their child.  I've seen educators who do an excellent job of recognizing the unique educational needs of children who struggle (applause!).  Unfortunately, there are schools out there who seem to count on the fact that a lot of parents don't understand their rights in the eligibility process.  If you're concerned your school might fall into the latter category, here are some great examples of resources to get you started on becoming an informed participant in your child's IEP or 504 process.

• Wright's law--Information about laws affecting special education
• 504 Accommodations--Lists of common reasons for accommodations and accommodation ideas
• NAMI--National Alliance on Mental Illness (click on the tab at the top to find your local NAMI).  NAMI has representatives who will go to school team meetings as advocates for parents/children and support groups for parents trying to access resources for their children.
• Other parents--Sorry.  No web link to that one, but one of the best resources is getting involved in play groups, school activities, church groups, etc. where you will meet other parents and realize you're not alone!  If your touring a foreign country for the first time, it's better to go with a guide.

The parent role in the process of gaining services is critical.  I've seen parents show up to meetings without really participating.  They sign forms and give permission and approval for interventions without being more than a token part of the process.  Parents, your role is critical.  I'll say it again.  No one knows a child better than the parents.  Parents often feel that their goals are at odds with those of the school or educational system.  In reality, the goals are often the same, with both sides working for what they feel is in the best interest of the child, but the roles are different.  Returning to Helen Keller's quote about vision vs. sight, parents are are the vision while professionals are the sight.  That is the reality of different roles.  Professionals are familiar with interventions, skills, requirements, and laws affecting the ongoing eligibility of children receiving special education services.  Parents provide insight into history, strengths, and abilities and should not minimize their role in the process.  Below are other common mistakes parents make in seeking services for their child:

• Becoming adversarial--The old saying is true that you catch more flies with honey.  If you go into a meeting with a teacher or team of professionals on the defensive, attacking the jobs and roles of people who are helping your child, do you really think they'll walk out of the meeting saying, "Wow.  Johnny's mom is right.  We really need to step it up."  Not likely.  To maintain your cool, even when frustrated, picture yourself as part of a professional team.  Educate yourself about the process and your rights, take notes in meetings, ask informed questions, and provide concrete examples of your observations.  
• Lack of documentation--Part of the process of eligibility for services is written requests for services.  Written requests also establish a timeline and protect the parent and child in making sure needs are met in a more timely manner.  Check with  your school district for specific requirements for written requests.  Also request documentation from the school regarding meetings, schedules, and actions taken (or not taken).
•   Not requesting an assessment--Frequently parents ask a teacher or other school professional if they think their child could benefit from a particular service.  The teacher's opinion is not an approval or denial of services.  Access to services does not come without an assessment of the child's needs.  Don't forget, the need for assessment is not based solely on the diagnosis/condition, but on a combination of a condition and the child's ability to perform in school.
• Not requesting information that would prepare parents for a team meeting--Remember, you are a part of a team of professionals.  Other professionals on the team will have access to information on your child such as grades, evaluation/assessment results, etc.  Be sure to get copies of this information ahead of time so that you can prepare to be a part of the team discussion.  The purpose of team meetings is not to inform you of assessment results, but to formulate a special education plan for your child based on results.  Parents need to know results ahead of time.
• Feeling rushed--Time limits may be given for meetings, which is understandable given the schedules of school professionals.  As a courtesy to other team members, acknowledge the time, but if you feel the meeting hasn't clearly defined goals, or covered intervention options, don't hesitate to request a few more minutes, or ask for another meeting.  Also feeling rushed often leaves parents apologizing for asking questions, or leaving questions for later.  Make sure your questions are answered in the meeting.  If you ask a question and it isn't answered, politely acknowledge that you aren't clear on the answer to your question and ask it again if necessary. 
• If it doesn't fit, don't use a bigger hammer!  Sometimes the answer isn't in specialized educational services.  As human beings we adapt and make informal accommodations for ourselves every day.  If we're bothered by a light or noise, we shut it off.  If we're uncomfortable sitting, we move around.  Try talking with a teacher about informal accommodations such as sitting somewhere else in the classroom or reducing a spelling list while the child eases into the school year.  Also, teachers are generally open to discussing educational goals in parent-teacher conferences.  These goals and accommodations aren't an official IEP or 504 plans, but they're the kinds of modifications that help teach children valuable skills about adapting to life.  Maybe the answer isn't a huge, formalized process.

"One can never consent to creep when one feels an impulse to soar."  If disorders are getting in the way of soaring, we live in a time and place where rights to an education for all are protected by law.  It is my belief that most children want to soar.  It is our obligation to use laws and systems to help them do just that.

The other day I was cutting out a label on my daughter's ballet skirt.  The white label showing through the sheer black fabric bothered me (and her), so it was coming off.  As I cut the label, I glanced at what I was throwing away.  Size...just a number.  Company label...don't need it.  Care instructions...here I paused to read.   Wash with similar fabrics, tumble dry low, do not iron...all potentially important instructions, but I'd just have to rely on memory and common sense.  As long as that annoying white label wasn't showing, it didn't matter.

Maybe you get where I'm going with this.  How important are labels in helping to educate students with disabilities?  Like the label in my daughter's dance skirt, most disability labels aren't pretty.  They're functional.  If we remove the label, can we trust our common sense to provide for a child's educational needs?

There's a lot of information out there cautioning against labeling children, and the concerns are valid.  1)  Self fulfilling prophecy:  Do children come to identify themselves and their abilities based on a label?  2)  Over diagnosis and over labeling:  Do schools (and mental health practitioners) diagnose more than they have in the past and is a diagnosis really necessary?  3)  Generalization:  Labels are, by nature, generalizations.  They fail to recognize a child's unique limitations and strengths.  4)  Socialization:  Even though children with disabilities often struggle socially, there is criticism that labeling could cause the child to be singled out further by peers.

We're all familiar with individuals we know personally who we think may meet the criteria for diagnosis of a mental health disorder.  Maybe.  Maybe not.  A serious mental illness is partially defined by a lack of functioning in daily life skills.  If children can compensate and function in school and home environment, a diagnosis may not necessarily serve them.  You've heard the saying, "If it ain't broke, don't fix it."

So to label or not to label?  And does labeling help a student who is struggling academically?

The answer to that question is more likely to be individual than general.  Each parent and educator has to examine the pros and cons for students on an individual basis.  Personally, I'm not opposed to labeling a child if it helps in treatment and access to services in schools that can help a child succeed academically.  That said, here are a few tips and cautions to consider in the label or not labeling debate:

Tips:

• Seek accurate and differential diagnosis.  Work with clinicians that coordinate care with multiple resources, including school and medical professionals.  Collaborative efforts lead to a more clear and accurate picture of what is happening with a child.  I've seen parents complete an evaluation form for ADHD where all the criteria pointing toward a diagnosis were marked, only to have the teacher complete the same evaluation form for the same child indicating that the child meets few or none of the diagnostic criteria in the school environment (and vice versa).  Generally, to meet diagnostic criteria, symptoms exist across a variety of settings.   
• Which leads to the next tip:  Rule out other causative factors first.  Perhaps there is something going on in the home or school environment that better explains the child's symptoms.  Perhaps there is a dietary or medical condition contributing to the symptoms.  This is actually fairly common.  Everyone is different, but personally I'm in favor of the lowest level of intervention possible which is best accomplished by examining a wide range of contributing factors.  
• Medication may not be the intervention of choice for every child, but in cases where medication is indicated as the best treatment option, a diagnosis (label) is necessary.  As I've already said, I'm a huge fan of ruling out all causative factors and focusing on moderate interventions first, but that's not the answer for everyone.  One of the most important developmental tasks of school-aged children is to develop competence.  This requires self-mastry, relating with others, engaging in social relationships, and completing tasks successfully, all of which are difficult for children with any type of mental disability.  If medication can help a child achieve that particular developmental milestone with success, it should be considered as a treatment option.  
• Trust your instincts.  Parents generally know their children better than anyone else and should never apologize for advocating for their child.  Professionals have access to information parents don't have which could be helpful to the parent and the child, but the application of that knowledge is incomplete without guidance from the people who know the child best.  Parents, don't abdicate your judgement to professionals.  Ask questions, get answers, then make a decision that you feel is in the best interest of your child.

Cautions:

• Don't use (or allow the child to use) the label as a crutch.  As a practitioner, I am disheartened when I hear a parent or teacher refer to their child (even indirectly) as incapable because of a diagnosis.  Children with ADHD can do anything other children can do.  They might have to do it differently, but they develop that all-important sense of competence when they are given skills to succeed.  Similarly, children's negative behavior should not be dismissed because of a diagnosis.  A diagnosis is not a get-out-of-life free card.  Frequently I ask parents to picture their child with a physical disability, maybe dwarfism, or a hearing impairment.  Would you want that child to never pursue the same goals and ambitions as other children simply because of a disability?  Or picture an adult criminal who justifies a crime because they happen to have some type of disability.  None of us want to live in that kind of world, and learning the connection between actions and consequences starts before adulthood.
• Next, parents should not rely solely on school resources for diagnosis and treatment.  School systems do a great job of educating children.  As part of that educational process, they are required to maintain a staff of professionals to help children succeed academically.  Professionals such as teacher's aides, speech and language pathologists, school psychologists, and occupational therapists (among others) are hired by a district and are frequently spread between several different schools.  Their focus (as it should be) is on helping children to function in the school environment.  Functioning in a school environment is important for future success, but functioning across all settings is also important.  Include professionals in your child's treatment that will collaborate with school professionals on treatment rather than relying completely on school professionals for treatment.
• Don't give up!  Every school, class, teacher, and intervention is not right for every child.  Too often I see parents react angrily when their child's needs aren't being met in school.  The child's needs are best met if parents keep trying.  The answers don't come immediately, and schools are operated by human professionals who do their best to help children succeed.  There is no guarantee of perfect results.  We know that, but it's difficult for parents to remember when they see their child struggle.  As parents of children with special needs know, there are good days and bad days (even though sometimes it seems as if there are only bad days and worse days).  Tomorrow is a new day.  Try something new.  It might work.  

Returning to the ballet skirt example, there will be times when a label clearly doesn't serve a purpose.  Common sense and good judgement are sufficient, and the freedom of removing the label outweighs the need for the label.  There are other times the label may contain detailed and important information.  Like clothes, not all children are of the wash and wear variety.  Some require specific care instructions or services to continue to function.  In the school setting those special care instructions come in the form of IEP's and 504 Accommodations.  (Look for the next post about using these resources and accommodations to help children in school.)  Unlike the very general dry clean only instructions in clothing, they're specifically tailored to the educational needs of each child and can be a great asset to children, parents and educators.

The bottom line:  It's up to you.  Don't be too quick to get out the scissors and start cutting if a label is the source of meeting your child's needs.  Ask questions and trust your judgement.  This is your journey.

Laugh And The Class Laughs With You...

Honestly, deep down we all love a good class clown.  "Bueller? ...Bueller?  ...Bueller?"  Or if you're in the generation that missed Ferris Bueller, maybe it was Bart Simpson that made you laugh.  Either way, it's difficult to resist funny.  And teachers who can smile through being upstaged by the class clown deserve extra merit.


Class clowns really are quite funny, and not every class clown creates problems for parents and educators.  For many clowning types, it's just part of their nature to put on a show.  They draw laughs because they are funny, and most in-it-for-the-show clowns seem to sense boundaries and aren't as likely to cause behavior problems in a classroom.  Other students, whose poor attempts at clowning fall into the category of behavior problems aren't as lucky.  They struggle with impulsivity, boundaries, and authority.  Still others seem to completely lack a social sense of what others around them consider funny, and their behavior frequently crosses lines of appropriateness.  Whether they're in it for the fun, or struggling with severe behavioral issues, every class clown will eventually learn:  Laugh and the class laughs with you... But you get detention alone.

And most parents of children with behavior problems also feel alone.  I can't begin to count the number of parents who have said to me, "His teacher said he needs more discipline," or "I can tell the school thinks we're bad parents."  In a parent group I ran for several years, parents identified with each other over this issue almost weekly.  I truly believe that educators do the most they can every day with often limited resources, and it is the role of parents to work with educators to solve problems that impede their child's education.

At the same time, if you're a parent who finds yourself cringing when you see the school's phone number pop up on caller ID you can also probably relate on some level to the feelings described above.  If only good parenting could solve all behavior problems...

Parenting and school issues aside, a focus on educating children is the motivation behind solving behavior problems.  Wouldn't it be great if there was a list that would make behavior problems disappear entirely?  Meanwhile, back in the real world here are some ideas parents might find helpful:

• As simple as it sounds, don't underestimate the power of parent presence in the school.  Volunteer in your child's class.  Sign up to help with PTA and school events.  The message to children is that they are important to you, and school is important enough for you to make time to be there.  The message to educators in your child's school is that you are willing to work with them and support their efforts.
• Another often repeated solution that can't be ignored in the discussion of solving behavior problems is listening to your child.  It sounds easy, but I often find the parent side of me forgetting something so simple.  Several days ago I was listening to (or perhaps trying to tune out) my daughter complaining for the 5th time that week about sitting by the cold air conditioner in her classroom.  "Can't you just wear a jacket?"  I heard myself asking her.  The you're-not-listening-to-me look on her face brought me to my senses.  I can't remember how I actually corrected the conversation, and that probably isn't important.  I was reminded of the importance of listening a few minutes later when she told me she had already asked the teacher to be moved and the teacher told her she'd look for other ways to seat students when she moves them around in a few days.  I offered praise for her thinking about solving the problem.  She wasn't looking for solutions.  She was looking for a connection and a listening ear.  (Does the "walking up hill both ways" lecture ring a bell for anyone?)
• Ask yourself if you're respectful of authority.  How does your child overhear you talking about your boss or the police officer who gave you a speeding ticket?  Their equivalent is the authority figures at school.  Do you speak respectfully of teachers?  One year my son was assigned to a particularly difficult teacher.  My initial mantra was that we all have to deal with difficult people in our lives, and encouraged him to recognize that even though he might not like her personality, she was a good teacher and he could learn from her.  Later that same year, I found myself furious after an encounter with her.  I compromised on my idyllic mantra and together we let down our guard and came up with a nickname for his teacher that we agreed we could only use outside of school.  I told him we still had to respect her and he was still required to meet her requirements for the class (no matter how unreasonable we all thought they were), but we could laugh a little while trying to meet the unreasonable expectations and were able to strike a balance.
•  Which brings me to the next important suggestion.  HAVE A SENSE OF HUMOR!  Neither humor or worry will make a problem disappear, but it's a lot easier to deal with problems if you can laugh at them.  I could go on and on about the benefits of humor...perhaps in another blog.  Make sure your sense of humor doesn't cross the line to laughing at your children, then as long as you're in check, go ahead and LAUGH!
• Be realistic about your child's abilities.  Children often act out to compensate for or detract from what they perceive as weaknesses or inadequacies in themselves.  It isn't wrong to have high expectations of children.  In fact, being realistic goes both ways.  Parents underestimate their children's abilities and become enablers every day, which is just as detrimental to a child's well-being as pushing them too hard and expecting too much.  Academics are important, but children can't access the cognitive skills necessary for learning if they're preoccupied with anxiety about their performance.  Similarly, parents often make excuses for children's poor behavior, and expect their children to fail before they even try.  They ask for exceptions because (in their words) their child is incapable of performing the tasks required of them.  IEP's and 504's are a discussion for another day, but they are available for children who need help so they can perform tasks required of them, not as a means of excusing them from performing at their highest potential.
• And lastly, try exploring the cause of the behavior.  Most people haven't heard of a functional behavioral analysis (FBA).  It sounds complicated, and in fact should be performed by someone trained in observing behaviors, but the concept itself is quite simple.  It's based on the concept of behavior performing a function.  Someone trained to observe behavior (usually available through your school or school district) can identify antecedents, settings where the behavior occurs, frequency of problem behaviors, whether or not the child truly understands expectations, hidden secondary gains for the behavior, and coping skills and abilities the child can use to solve the problem differently.  An FBA is an intervention that does take time and goes beyond simple behavioral modification to discover the needs at the root of the problem behaviors.  You'll hear professionals who deal with children in the field of mental health often repeat, "Behavior has meaning."  It always does.  It isn't always easy to discover, but just a few of the the payoffs could be fewer headaches for you, and a student who gains a sense of competence in school.  

If you're willing to try something new, the results might surprise you.  The struggles won't disappear, but the door to learning new skills and strategies will be open.

Back To School Month

Take a minute to think about the greatest stressors of your life.  You know, the ones where large amounts of chocolate, Valium, or Xanax might have been considered as coping strategies.  Any school related experiences come to mind?  Stress about grades?  Worry about friends and social situations?  Test anxiety?

Ok, so maybe school stress isn't chocolate or Valium worthy, but for many families it certainly ranks right up there.  For parents there's the stress of schedule changes, daily lunch preparation, fees, forms, class disclosures, arranging after-school activities, homework supervision, supply lists, volunteering in classrooms....  It's endless.  For kids there's stress about teachers, rules, friends, recess, locker combinations, getting to class on time, and somehow managing to do all the above while looking cool, calm and collected in order to avoid becoming a target for bullying.

Chocolate anyone?

During the month of September the focus of blog posts will be "Back to School Month." Look for ideas through the month about managing the stress of school challenges, as well as information about help for students who have difficulty in school.  If you know me you know I like to keep it real.  Let's face it; if there was a magic bullet we wouldn't be discussing these issues.  Hopefully sharing ideas and creating dialogue is helpful and a step toward finding solutions.  Feel free to post comments, questions and ideas.  Join the discussion!