The courage to get real

Stylized drawing of young woman and lion, sky in background, reaching for heart representing courage.

“Life shrinks or expands in proportion to one’s courage.”   Anais Nin

In a previous blog article (When you change the way you look at things, the things you look at change) I talked about Malcolm Gladwell’s contention that learning disabilities may in fact be what he called “desirable difficulties”. He contends that in spending a lifetime confronting and managing a learning disability, a skill set is forged which turns out to be a significant advantage when harnessed in the right way, potentially resulting in something extraordinary. I believe that one of the character traits forged during this process is the ability to function in the face of fear: courage.

Having courage is not the same thing as being fearless. In fact, appropriate fear plays a very important role in our survival. It would not be smart to ignore fear when we are faced with legitimate threats; it’s the thing that warns us that it’s time to fight or flee. Fear was indispensable to our ancestors confronted by sabre-toothed tigers and marauding enemy tribes. It wears different, less physically threatening faces in the modern age (often, it may in fact be False Evidence Appearing Real) but it still feels just as threatening and provokes the same instincts as it did in our ancestors. Courage is the thing that allows us to rise above the fear, to respond bravely when every instinct is telling us to run (or hide). Courage trumps fear, empowering us to meet challenges, stretch our limits, and find fulfillment in our lives.

It’s hard for me to use the word “courage” without thinking about one of my favourite movie characters, the Cowardly Lion in The Wizard of Oz. The interesting thing about the Cowardly Lion is that he was so focussed on his fears that he couldn’t see things as they truly were. In the beginning he is ashamed of being afraid, not understanding that true courage means taking action despite our fear (something he actually does frequently to protect his friends). In the end though, with a little help from the wizard, he is able to “change the way he looks at things” to recognize and accept his authentic, courageous self. He is finally led to the discovery that courage had been within him all along, and learns that you don’t have to be fearless to be brave.

So what does this have to do with learning disabilities? Just this: That school can be a scary proposition for a kid with a learning disability. Will I have to read aloud in front of the class? Will I be able to plan ahead and practice my passage so that I don’t screw it up? Am I going to blank out on the exam again, even though I studied hard and I know the material? Am I going to be bullied again today? Will I be called stupid or lazy or be laughed at in class? Why am I doing so poorly when I work so hard? And yet these kids get up each morning, marching bravely off to school to face whatever dragons may await them there. If we agree that courage is a kind of inner resolve, a resiliency that allows us to face scary circumstances head on, then let’s agree that these kids have it in spades.

It’s been said that courage doesn’t always roar; sometimes courage is the little voice at the end of the day that says “I’ll try again tomorrow”. That is what kids with learning disabilities do every day. But there comes a point for them when an even greater courage is required: The courage to acknowledge, accept, and embrace their learning disability in order to create the kind of life they want for themselves. I was reminded of this recently when a young woman arrived at our office to identify herself to us as a student with a learning disability, and to request accommodations. She explained that she’d had an IEP and received support throughout elementary school, but had decided to go without it in high school because she “didn’t want to deal with the label or the stigma”. She did reasonably well in high school with a lot of very hard work , and had hoped that trend could continue through university. It did not, which brought her to a realization that it was time to fully accept, confront, and manage her learning disability, and she is now well on her way to doing that. She readily admits that the prospect of that is scary, but she is ready to take it on…with courage.

I asked her what had ultimately spurred her decision to finally explore this aspect of herself without shame or embarrassment, and her answer was simple: “I was just tired of being afraid.” She went on to say that what she always had feared was being vulnerable in the face of other people’s judgement and rejection. She had always felt pressure to present her best possible self, and there was no place in that perception for anything resembling a flaw or an imperfection. It occurred to me as we spoke that we are all in the same boat, but that not all of us have the courage to deal with our issues the way this young woman was. Most of us do what we can to avoid confrontation with the “shadowy side” of our selves, but in finding the courage to learn about and accept all aspects of herself she felt lighter and truer and more authentic than she ever had.

Successful people with learning disabilities don’t get there by accident, and they don’t get there by denying who they are. And if it happens that who they are is in small part a person with a learning disability, then they go about learning what that means for them, and doing everything they can to understand and manage that aspect of the “self”. They don’t deny it. They don’t hide from it. They don’t run from it. They find the resolve to confront it and deal with it. It requires vulnerability, and self-acceptance, and authenticity, and…courage. And maybe that is one of the qualities that Gladwell is talking about as one of the positive side effects of living with “desirable difficulties”.

Author and lecturer Brene Brown had this to say about courage: “Courage is a heart word.  The root of the word is ‘cor’, the Latin word for heart.  In one of its earliest forms the word ‘courage’ meant to speak one’s mind by telling all of one’s heart.  Over time this definition has changed, and today we typically associate courage with heroic and brave deeds. But…this definition fails to recognize the inner strength and level of commitment required for us to actually speak openly and honestly about who we are and about our experiences – good and bad”.

A Turkish proverb says that a lion sleeps in all of our hearts.  Real courage is about connecting with who we truly are by entering our own hearts and awakening our inner lion.  It’s about being authentic in the face of fear and vulnerability.  It’s about accepting and loving ourselves (and one another) warts and all, which let’s face it, can be a messy business. But it’s the only way to live an authentic life, and it’s one of the greatest gifts we can give to one another.

Special Policies

I originally had planned a visually-stimulating video-hybrid blog featuring some of the technologies that I have been using, however, something very interesting has started.  Last month, Premiere Wynne declared the dissolution of the provincial government with elections to be held over the summer.  Then the Windsor Star published this article:  Windsor Star Article.

I read the article, and it struck home with me.  There were parts of this article that were real and I have already witnessed the effects on students with special needs.  I want to focus my attention on the topic of students with special needs, so I feel I need to reveal a few things in case I may present a biased view of these subjects.  I personally tend to lean left in policies, as the Windsor Star often leans right.  I work for the WECDSB, and was a student at the GECDSB.  I do not want to campaign or promote political agendas, but only wish to offer my personal insight on how special education teachers can/do help students and the roles they often play in schools.

The Windsor Star reported that:

Provincial funding for special education this year is $2.72 billion or just over 10 per cent of all education funding. However, about 17 per cent of elementary school students and 22 per cent of secondary students receive special education support, according to the survey.

This gap in funding has lead many schools to tough decisions.  Labour contracts restrict things, such as classroom size, and leave opportunities to manage funds in other areas.  One of those areas are the teachers that do not teach a grade-level class; specifically, special education teachers.  Ideally, these teachers work from a classroom where students may come and go as they need to receive help with tests, scribing, reading, assignments, etc.  These classrooms may have 1 or 2 students seeking help to 32 students writing tests, all at one time.  Special education teachers must be very versatile and able to adapt to a varying number of students.  Since these teachers do not teach an actual class, some boards have started to move them around the school.

Computer labs that were once localized to the special education department, may now be moved to a location where school administration may be able to supervise special education students when they need the resources.  The precious work time that special education teachers once had at “slow times” is now removed as some boards are using these teachers to teach French, reading, or other subjects.  Some boards have cut their programs all together, others are dipping into reserve funds to continue to fully fund their programs.  With each board finding their own solution, the article identifies that:

79 per cent of Ontario’s school boards spend more on special education than they get in grants from the Ministry of Education.

As a parent of a student with special needs, this should be a warning bell.  The boards that are continuing to fund their programs may eventually have to adjust their programs, and those that have already reduced their programs, the effects may already be felt.  The boards are still obligated to provide certain accommodations and modifications the Education Act, Bill 82 (for more information on this bill, click here.)

Secondary school programs tend to be more developed as both numbers and percentages are higher in high school then in grade school.  The Windsor Star identifies these numbers as:

The (GECDSB) has identified 2,200 special education students out of 23,000 elementary pupils. In the secondary school population of 11,900, there are 2,087 special education students identified…The WECDSB has 604 identified students and 885 non-identified pupils receiving special education at the secondary school level.  At the elementary level there are 129 identified and 2,328 non-identified students (of 22,000 total enrolled students in the board.)

The increase number in identified students at the secondary level is a reflection of the time lines in identifying those very students.  The striking figure is the increase in percentage of identified students from the elementary to the secondary levels.  As we continue to research special needs, we understand better how to identify students earlier.  As we continue to identify students we will see an increase on demand in special education teachers, with an actual decrease in availability of these teachers.

This is where you, the parent, comes in.  As resources become scarce, more will be demanded of you.  When I was in high school, the number of identified students were much lower, however, I still had a mother that was fighting tooth and nail to get the services that I required.  Today, there are more services available, but many more students that require them as well.  The results of this year’s election, could impact the resources of special education and it is important that parents are prepared to advocate for their students.  Here is a short list of what I have personally found to be successful strategies when advocating for your student:

1.  Keep a log book of everything

This is one of the most important pieces of advice that I could offer.  When I work with parents as an independent special education adviser, I keep a record of everything.  When we contact the school, when the student doesn’t receive proper accommodation, when a student is taught at a modified level, everything.  Teachers do their best to log as much as they can, however, the first shortcoming is often the specialized education component.  When teachers do maintain good records, some may only share them when a student is not completing their work.  Having your own log book empowers you as a parent.

2.  Involve the principal at every turn

Principals are very concerned with their school’s image.  They are in charge of creating a positive learning environment and special education is a huge influence on that image.  You do not need to harass the principal, but get to know her.  Tell her how your student is doing when you see her, ask her if they have any new programs in the works.  Its good to be “friends” with your principal as friends tend to take your side in a fight.

3.  Follow the chain of command, but keep everyone involved

This one follows with the second point.  You need to address the classroom teacher first, then the special education teacher, the department head (if applicable), then the principal.  This does not mean, however, that you cannot CC your ever email to everyone on your team.  By CCing your emails, other teachers and administration may jump in when they notice a problem that you haven’t even seen.  In addition, when the IPRC meeting comes around, everyone is already on the same page with little to no surprises.

4.  Don’t ignore small things

As a parent, you are not trained to know everything about education.  It is never expected of a parent to know what is important and what is not in the world of education.  With this in mind, when you see something wrong, ask about it.  Even if it is as small as your student did not get extra time on their 5 minute quiz worth 3 marks.  The extra time may not be needed, the extra time may have been ignored.  You never know when an underlying problem may begin, so it’s always best to record even the smallest troubles.

5.  Use email

Email, despite claims, is a very legit form of communication.  Each email is time stamped and can even be traced to when the recipient read the email.  Sending email aids you to document your communication.  Phone calls are great for lengthy conversations, and face to face meetings can be even more affective.  When you finish a meeting or call, make sure to send off an email thanking those involved and review what was discussed.  This also gives those other members an opportunity to clear up any conflicting reports you included in your email.

6.  Attend all meetings

Never skip a meeting, because they will continue without you.  IPRC meetings, handover meetings, and parent-teacher meetings are all opportunities for you to advocate for your child.  Should you miss those meetings, decisions will be made without you.  If you are unfamiliar or not confident with what to do, you can always bring in your own adviser.  Advise the principal that you wish to have an adviser with you and use that adviser to your benefit.  Advisers should have an AQ in special education along with first hand experience with the IPRC.

7.  File assessments

Keep a folder with all your student’s assessments.  You never know when there may be an issue with how or what your student is being taught.  Again, this is just another step in maintaining your documentation in case of an issue later on.

8.  Share your concerns and hunches

Parents are not educators, however, they know their child better than anyone.  When you notice anything, or feel like something is wrong, tell someone.  It may be nothing, but it may also help teachers consider new ideas or observe strange behaviour at school.

9.  Get a second opinion

Sometimes teachers can be a bit more human than we’d like them to be.  When a teacher makes a mistake, they may try to brush it off as nothing, or they may make the wrong choice for your student.  There is nothing wrong with asking another teacher, another student, or even using a great resource such as the LDAWE.  It’s just like using the internet in that you can’t just take everything at face value.  Sometimes, you need a second opinion to confirm your findings.  A second perspective may even reveal something that neither the parent nor the educator considered.

10. Keep your student involved

Finally, your student’s involvement.  Students that are involved with their own meetings, with the entire process, will not only be more interested in their personal success, but will more likely report when things are not going on according to plan.  Parents (especially those parents of multiple children) are very busy, and it can be difficult to play detective with what is going on at school.  By keeping your student involved in as much of the IPRC process as possible, they will know exactly what and why to report in relation to their accommodations and modifications.

With every provincial election that passes, new education policies are quickly followed.  They are not always as obvious as some changes, while others will jump up on you without notice.  By preparing yourself to meet these new policies, you will help to ensure that your students are receiving the accommodations and modifications that they are legally entitled to.

This summer, no matter what your choice, make sure your voice is heard!

Self Advocacy

Guest Blog Post by: Shelley Lavoie 

Self-Advocacy

Often, persons who live with learning differences have also, unfortunately, learned to be afraid to self-identify, for a variety of different reasons. This may cause them not to seek help, help that could alter their lives in so many positive ways. Persons dealing with learning differences are generally of average or above average (and sometimes genius level) intelligence and frequently have a very high level of “learned creativity.” This means they may possess a wide array of creative methods and techniques designed to hide their learning differences. The good news is that self-advocacy can be the key both to success and getting the things they need and want in life.  Some helpful sites for Self- Advocacy are:

http://www.edac.org.au/letmespeak/html/selfadvocacy.html

http://canlearnsociety.ca/wp-content/uploads/2013/03/LC_Self-Advocacy_N2.pdf

 

But as people open up and embrace the challenges of asking for help, they may then encounter another hurdle: where do you turn for specific types of help? Below is a list of resources in Windsor/Essex County where you can seek information and assistance related to a variety of learning differences:

http://www.ldawe.ca/

http://www.ldawe.ca/resources.php

http://www.ccrw.org/resources/resources-for-people-with-learning-disabilities/

6 months

I just finished with our 6 month checkup with the Psychiatrist for both my boys.  For the first time ever I had nothing really to report. Home is good, school is good, day to day living (self help skills, friendship, extracurriculars) all good. At the end of our visit the doctor shared that he wished his medical resident was with him today because so often he sees kids with diagnosis like my boys (and C has even more than most) and those other kids are struggling and their parents are struggling and for many the school is struggling.

Then he asked me what I thought made the difference for my boys. I answered humbly, but truthfully – we work like crazy as a family to give the boys what they need (like structure and routines) and we work closely with the schools – including making sure our boys have the accommodations that they so desperately need.  In turn the schools have really risen to the challenge and both are doing a great job. C just recently received  an 81% in Science and J received mostly all B’s with an A in Gym. We also have a lot of support for C outside of school as well.

It makes me sad though for other families that struggle – where one or both parents have their own issues attributable to ADHD or LD or mental health concerns. Parents who just don’t know what their rights are when it comes to school or who are afraid to try to work with the school because they just don’t know how. I feel bad for parents who get schools that, for whatever reason, do not want to work with the child and parents to make school a better experience for all. I feel bad for parents who don’t get the help they need for their child – for example just having ADHD in this city will not get you services.

It’s amazing to me that despite years of research we don’t have a parenting class for those parenting a child with ADHD and/or LD, a place where parents can learn various strategies (and choose what works for their families) as well as a chance to mingle with other parents and perhaps forge new friendships.

In the end my boys are doing well and for that I am eternally grateful.

Just for Today

frazzled parent

I wrote this a few years ago but figured there are probably many parents who can relate

Just for today, I’d like to not feel like I have to fight for my kid

or that I have to convince people he DOES belong

Just for today, I’d like to not have a lump in my throat

or a huge knot in my stomach

Just for today, I’d like there to be no phone calls and emails

or the need to explain to people the same things over and over and over

Just for today, I’d like to not have to champion my son

or to feel like if I don’t speak up my son, and others like him,

will be bullied and hurt by the people who are supposed to help them

Just for today I’d like the world to not be a scary

and potentially dangerous place for my son

Just for today I wish people could just do the right thing

because it’s the right thing to do

Advocacy is not a Four letter word

One of the things that took me a long time to learn is that to be a successful advocate you need to know to advocate effectively. Most importantly you need to know what an advocate IS and what an advocate ISN’T.

What it isn’t – being snarky or rude- threatening to call your lawyer every time you have a conversation with the school – hitting below the belt by belittling or calling into question the teachers motives – saying something like “I know you are but what am I” to the teacher

What it is

  • Knowing your rights and responsibilities
  • Staying calm even in the midst of turmoil
  • Making plan of action at the meeting and holding the school to it
  • Documenting everything – this one is SO important. Even when things are relatively quiet and going well you should still document all conversations with the school. You might need it later.
  • Putting your concerns in writing to the school and giving them a reasonable date to get back to you about the matter.
  • Following the chain of command. First take concerns to the teacher, then to the Learning support teacher then to the Principal. Then if that doesn’t work you can go even higher up. Each school board has a hierarchy. Find it out and make sure you follow it.
  • Finding people in the school that have a good relationship with your child and stay in touch with them. They are the ones who will have wonderfully positive things to say about your child.
  • Bringing a treat to school meetings – everyone is in a better mood when food of some sort is served. It also goes a long way to ingratiate you to them for thinking of them.
  • Taking someone with you to every meeting. It’s important to have a support system and they can take notes for you – freeing you to really listen to what the school has to say.

Unlike the “easy” button above, I know the being an effective advocate is not always easy. But if you remember a little of what it is and what it isn’t it might help. If you have some things to add to my list please let me know.