Advice from a PRO!

Most of you know that we met with a dyslexia specialist this past Monday.  This was a 3 hour meeting, during which we learned a lot about the way Lila thinks, the way she most likely sees letters and numbers, as well as the best ways to teach her letters, spelling, and reading.  That being said, we didn't love this woman that we met with.  Lila definitely didn't care for her at all, because she kept saying that she wanted her to go home (uugghhh, she takes to everybody, so we know it is bad when she says these things).  The specialist was quite condescending to Matt and I at times, an didn't understand Lila and her abilities.  The bottom line being that we all agree that dyslexia is an issue for Lila and now we can move forward, but most likely will not work further with the specialist in particular.

While preparing for this meeting, I sent an email to a good friend of my Moms.  Maureen is her name, and she is about my age with CP and dyslexia.  What a wealth of knowledge she is, and she was kind enough to send this email I am sharing below.  Many of the things Maureen says in this email explains Lila to a "T"!!!   It sure is nice to know that there is someone out there who totally understands.  When she talks about preschool and kindergarten, in regards to letters and numbers, this is the way Lila is at this current stage,  Then you read about where Maureen is today, and we have such great hope for Lila's future and independence!  Maureen is amazing, and I know Lila will be the same :-)  I hope Maureen's story touches you like it did us

Hi Maria!

First, let me say this...  I have a tremendous amount of respect for you and your family.  It takes back bone and courage to raise a special needs child properly-- and from what I've heard, you're doing an amazing job.  I can't imagine how overwhelming, frustrating, and exhausting this must be for you at times.  Know that your effort and work will make Lila a more functional, well-adjusted person.  I know, from first-hand experience. 

             You asked about dyslexia and learning disabilities, so let’s start there.  I have moderate dyslexia.  I also have a couple other learning challenges…

·         I have a hard time with b, p, q, d, g, m, and w.  Writing or reading, it doesn’t matter.  I have to think about what I’m looking at.  Without concentration, I'll write a p instead of a b or a d, an m instead of a w.

·         I’m a slow reader, but I love to read.  I come from a family of heavy readers, and, learning disability or not, I was encouraged (forced) to read for pleasure. Though, I loathe reading out loud, and will avoid it when at all possible. 

·         When I write anything by hand, I have to concentrate to ensure:

o   All my letters are facing the proper way

o   I haven’t skipped any words or parts of words.  (I've probably done this a couple times in this email, though I've proofread it three time.)

o   I spelled things correctly.

o   My lines of writing are straight.  Unless I really focus, my writing floats up and down, never staying straight with the lines on the paper.

·         I have almost no depth perception.  I cannot see 3D effects in movies.  I don’t use both my eyes at the same time.

·         I have a hard time with greater than and less than signs.  This was embarrassing as a kid.  It’s absolutely hilarious as an adult.  I have very strong math and analytical skills, and both play a role in my career.  So, when I use < or > in code, and the code doesn’t work, I always know where to start looking for the problem.

·         I have no artistic skill.  Even stick figures are a challenge.  I can’t carry a tune in a bucket.  And, I worked REALLY hard to earn a C in geology when I was in college.  Why list these things?  Because they’re the only academic things I’ve ever really applied myself to learning and then failed miserably.

So, I have these limitations.  I know they’re there.  At times, they’re a pain in my behind.  When I have to read something out loud to a group of people at work, I tense up and get nervous enough to be sick.  But, most of the time, I don’t think about any of them.  I learned to cope with my disabilities when I was a kid, so they don’t negatively impact me much as an adult.

 I work on a computer 90% of the day, so my handwriting doesn’t matter.  I’ve exceptionally good at my job, adored by my co-workers and the company leaders.  So, when I’m in a meeting and need something written on the white board, I ask someone else do it.  Or, if I do it myself, we all have a good laugh at my terrible handwriting/spelling/skipped-word issues.  I get affectionately teased about my greater than/less than sign thing.  No one thinks any less of me for it.

Occasionally, I meet someone new who takes a good look at my lazy eye and my walking limp and dismisses me as not-very-bright.  I take perverse joy from watching that person realize that I’m different, but not stupid.

And, that’s really what it comes down to, Maria.  My brain is just different.  I literally laughed out loud when I read your sentence about Lila memorizing things easily, but not recognizing a word from page to page.  I have near perfect recall if you tell me something.  I can parrot it back word-for-word.  But, if you ask me to read something and then tell you what I read, I’ll paraphrase the main points.  I won’t remember any of the actual phrases I read, unless I make the effort to commit them to memory.  And, if I'm tired, I can't pick out a specific word on a page without really concentrating.

Still, I’m a functional, independent, successful adult.  With cerebral palsy.  And, with learning disabilities.  My mind is agile—I adapt to change and pick up new skills more rapidly than my peers.  While counter-intuitive, I think I learn more quickly now because I struggled so much when I was kid.  Most people make their way through school without really thinking about the mechanics behind learning something new.  They walked the path dictated by their teachers and schooling.  I didn’t have that luxury.  My brain didn’t absorb information well through the normal teaching methods.  So, I had to learn how to learn.  Once I did, I flourished. 

I’m saying this now because it’s the good news, and (I think) the end result of what you’ll want to achieve with Lila. The bad news is it took a LOT of hard work to get where I am. 

And, now, a stroll down memory lane…

I sat through two years of preschool because I had a hard time with letters and numbers.  When it was time to start kindergarten, the school administration wanted to move me to a confined, full-time, special education classroom.  My parents adamantly refused; they insisted I was capable of keeping up with normal classroom work. 

The school principal and my mom got into a terrible argument.  The principal told my mom that she was over-reacting, and was rather condescending with her.  “Learning disabilities are not contagious.”  My mother doesn’t tolerate people talking down to her.  (She also has plenty of backbone and courage.)  She fired back, “Learning disabilities may not be contagious, but behavioral patterns are.”  In the end, the principal and teacher blocked the classroom door on the first day of class, and refused to let me in the normal kindergarten classroom.  My parents put their house on the market and moved to a new school district shortly thereafter.  Like you, my parents worked hard and took risks to ensure I had every opportunity to succeed. 

My mom was absolutely right in this, Maria.  The social setting with other functional “normal” kids was important to my development.  Other kids are mean and I struggled with the school work at times, but I pushed myself harder because I didn’t want to be embarrassed in front of my peers.  I made my way through school by sheer force of will.  I refused to admit I was incapable of doing something.  If my siblings or friends learned something or did something that I couldn’t or hadn’t done, I immediately wanted to do it.

If Lila is going to overcome the issues slowing her down, she needs to be challenged.  She needs to be frustrated.  She needs to want to do it on her own.  No one else can do this for her, so she needs to want to do it for herself.  She needs to be hungry for success.

If Lila’s path is anything like mine, she’ll spend a lot of time copying words and sentences.  There will be a lot of work on sight words with flash cards.  There will be a lot of time spent working on reading comprehension and phonics.  She’ll spend a lot of time putting puzzles together.  (If she’s not big on puzzles now, you might want to encourage her to do them.  Jigsaw puzzles are hard for me, but they stretch my mind.  Same thing with Sudoku.  )

I had some very low tech tools to help me.  I remember, in particular, having a note card with a long, narrow window cut in the middle. I’d use it as a guide, keeping the window on the line of text I was reading.  It would cover everything except the line I was reading, making it easier to keep my place.  Now, I love my Nook.  I can re-size and double space the text of anything I'm reading.  It's delightful.

Everything took time and practice.  It was, in turns, extremely frustrating and extremely boring because of the repetition.  I spent a lot of time learning and memorizing fundamental things, like multiplication tables.  For reading and math, I went to a special ed class.  For all other subjects, I was mainstreamed.

Somewhere around sixth grade, everything fell into place.  I had mastered the basics, and found a way to make my brain absorb information.  I focused on paying attention in class more than reading the textbook.  I did well with independent tasks because I could do things at my own pace. 

By high school, I had perfected my learning methods so well that I didn’t need any special education assistance.  I took honors and advanced placement classes and got A’s.  By college, I didn’t even bother buying the textbooks.  I knew I would gain little by reading them, so why spend the money?

When you meet with this specialist on Monday, keep in mind that it doesn’t matter what label they stick on Lila’s learning challenges.  Dyslexic or something else… it doesn’t matter at all.  The label just helps the experts figure out where to start with her.  They’re going to step through each teaching technique they have until they find one that works for Lila.

It is absolutely vital that you set high expectations with Lila.  Don’t accept anything she does in school as “good enough” until you know she’s given it all the time, attention, and focus she reasonably can.  Don’t let the teachers and specialists coddle and baby her.  She needs to be treated like a normal kid.  But, at the same time, it’s important to encourage her along.  I remember screaming and crying when I couldn’t do something right.  I also remember my mom getting into a huge argument with one of my teachers (around 3^rd grade), because the teacher let me slide on some schoolwork.  The teacher told me it was OK that I failed, and that no one expected me to pass.  My parents always expected me to pass.  They always expected me to do well, even if it was hard.

                Was that preachy?  I’m not going for preachy.  My point is that Lila will only accomplish what she’s expected to accomplish.  Learning disabilities or not, expectations have to be high if you expect her to perform well.  Having a learning disability doesn’t mean she’s slow or stupid.  It just means she’s different.

                You’re a great mom.  I can tell by all the time and work you’ve put into making sure Lila has every opportunity to thrive.  She’s lucky to have you.  As you work through this learning stuff, just remember to use common sense.  You know Lila better than anyone else.  Don’t let anyone sell her short.  There’s a long road ahead of you, but know that Lila can (and will) succeed.  She just needs to find a way her brain works.  My mom and I think that Nora will encourage Lila along as they grow.

Good luck on Monday.  I’ll be thinking about you and Lila, cheering for you both from a distance!