Desperate parents

There seem to be so many lies and so much misinformation around the subject of getting help for a dyslexic child that I find it hard to break through to parents who don't know me well.

I do still try.

Sometimes people don't know what to think of me at first (I am a bit odd I guess and my passion for this subject borders on over-the-top). 

Still, I do try to relay what I know (a lot at this point) hoping that maybe, just maybe, a parent will remember it at a later time.

Sometimes it works out.  Sometimes it doesn't.

Like when I told our story to a parent who was experiencing a similar circumstance and then, at a later date, someone else I didn't have any connection with agreed with me to them. 

The parent called me back and said, "Explain what you told me again."  Which I did and which I'm happy to report is currently in the process of working out for that family.

If someone is in complete denial I don't try to rip off the blankie of course.  I don't think that would lead to anything good.  I know a child right now who is on the way to being nearly completely illiterate, yet when I saw the mother recently I said nothing.  Did I do the right thing?  I think this parent knows enough about me to call me should she have a question she thinks I could answer.

Still, I don't think I could rest, as a parent, if my child was suffering and misunderstood in school without turning over every single rock to try to find an answer.

I don't think every parent is like me. No, I know that not every parent is like me.

Also though not every child has dyslexia to enough of an extreme to need to push that hard either. Many compensate and cover up and manage to get by.

So I try not to judge.

Yet, I know that my parents worked very hard on behalf of my brother and I plan to always work very hard in a similar way for my children.

When I think about this subject now I believe that there will always be a lot of misinformation and there will always be desperate parents actively searching for truth and finding, well, not enough good information.  Yet,  when I have a good moment I see that things may be changing in a big way for the better. 

Things like films about dyslexia, celebrities coming out and saying they have dyslexia and many states trying to change the way they teach reading (to heck with "Whole Language").   These things give me hope. 

A word from my 93 year old neighbor

So without causing any huge stir I want to express an interesting thought that I learned awhile back from my neighbor. 

First, I want to tell you a bit about my street.  There are 69 houses on it and I know more than 3/4 of the people who live on my street by name.  I've lived in this neighborhood for awhile and on my street for more than 10 years. 

A very lovely neighbor I'll call Mrs A. frequently has neighbors over for parties that would make Martha Stewart want to take notes and get recipes.  She is just wonderful.

One of her annual parties is a Ladies Tea which she has every December.  The food, décor and conversation are always wonderful and I've never missed it. This party allows us a chance to get to know the other ladies who live so close by in a way that we wouldn't normally. 

One of my neighbors (I'll call her Mrs. H.) was the kindergarten teacher of my husband.  She is now 93 years old.  She lives in a beautiful and very well kept house.  Many other people on our street know her well and many of their children had her as a teacher.  She was (still is actually) famous for her crafting skills, well made Halloween Costumes and love of the children and the school she taught at. 

I have to admit that I'm slightly in awe of her. Age may have slowed her down but it certainly hasn't stopped her physically or mentally (she keeps her house and yard so nice due to the help of her children who live nearby). 

A couple of years ago at the Ladies Tea she was vigorously defending the local public school she spent so many years at (the same one my husband went to for kindergarten).  Privately later the same day she told me something that has always stayed with me.  Here is what she said,

"When the Women's Movement came the overall quality of teachers began to diminish.  Women that formerly would have had to choose between the few occupations of being a nurse, secretary or teacher as a career began to be able to become doctors and lawyers."

I get what she is saying and while I still believe that there are some great teachers out there I see her point.  The majority of women had very few choices that were generally considered acceptable. My mother was a teacher,  so were most of my aunts.  They are all retired now.

My aunt who spent her life teaching (and loved it) remembers in college how the advisors would come through and advise whether or not a person should continue to major in Education.

 Things have changed quite a bit. 

I do not believe the reports of which Universities are supposedly doing a good job of putting teachers out into the job market.  I have read those and know too much now as the parent to think those "reports" are anything more than marketing techniques (cynical yes, I know, sorry). 

Where is this all headed?  I'm not sure but to me it's safe to say that I agree that education in general is not where it should be and headed downhill fast.  The occasional great teacher (like a friend of mine who really does care about the students in her school and is constantly fighting her administrators to do the right thing) is not enough to help the majority.

Our society as a whole doesn't seem to value children enough to make changes that don't involve saving money as the first priority.  Once again I'm reminded of what Margaret Mead learned in her studies of different cultures.  (I've written about this in a previous post so I'm not going to elaborate here). 

I hope I can talk to my neighbor again this December at the Ladies Lunch.  I'll let you know what she says.

 

Why and how come?

When I think back about all the steps we took to get to the place where we knew for certain that my daughter had dyslexia I have some general questions for the Universe.

How come I had to pay to have a private reading specialist look at my daughter and declare that yes, she did believe she needed to be seen by a pediatric neuropsychologist in order to see if she had dyslexia.  Shouldn't the teachers at her Catholic School (or any school for that matter) been able to tell this when my bright child wasn't responding to either their classroom methods or the special tutoring she was getting?

How come the other day when our (admittedly terrible) district was writing my son's IEP they didn't have any Baseline information at all and he had to be tested (yet again). Just to get this process started.  Why did my Child Advocate have to be the one to point this out and tell these district folks how to do their job?

Why is it like rocket science to notice a child probably has dyslexia if you work in a school whereas I'm just a mom with no education background whatsoever and I can tell which of my children's classmates probably would come up with a dyslexia diagnosis should they be tested by a pediatric neuropsychologist (I'm just saying if I can spot dyslexia why cant a teacher?)

Why don't districts know how to do the job of writing an appropriate IEP and why are they so unwilling to?

Why don't general school tutors come right out and say,  "You know I am supposed to be able to re-mediate dyslexia based on my training, but to tell the truth I've never had much success at it."  Instead of being all defensive and saying crap like, "I only teach to the IEP."

How come Reading Recovery promoters cant come right out and admit that their methodology doesn't work for dyslexia, rather than have everyone have to learn the hard way?

Why is it so hard to find a good Orton Gillingham trained tutor, and not the damn weekend class either?  Is there some elitist conspiracy out there.  Shouldn't there be at least one of these in every school in the country?

I could probably go on but this is enough for now. 

Another clue to the level of illiteracy in this country

Recently my husband had surgery.  It went well for the most part but any general anesthesia surgery cant ever be taken too lightly.

Interestingly enough my husband had to answer many questions during the course of the day but never more than with the last nurse before he was moved to the Pre-Operative area. 

During that long line of questioning came something like this (I'm paraphrasing here).

"How do you learn best?  Is it through being shown, reading or being told what do to?" 

I was instantly fascinated and asked the reasoning behind the question.  At this point our nurse was comfortable enough with us to elaborate and the response was,

"Many times people come here and they really don't know how to read but they wont tell us that so we have to figure out the best way to teach them to take care of themselves after the surgery". 

To me the question now becomes this: Is the health industry is only just now taking greater precautions by trying to understand how the patient learns or have there been so many issues with illiteracy that the health industry has had to respond by making such a question a standard practice?

From my viewpoint, in light of what I know about how many people are struggling from childhood onward I believe that the hospital awareness is stemming from an increase in the amount of population that is not literate. 

I believe in the last 20-30 years there has been a surge in illiteracy in this country. I think this line of questioning the hospital had to ask to insure the health of their patients is even more evidence of this. 

If I am right, then as a society we are going to have to remedy this at some point.  We are going to have to admit that things have gone badly and start changing our methods. 

Writing this I'm not terribly hopeful that this will ever happen.  I know how political this is and it saddens me.

The way things to work in my state it goes something like this:

A big University has a (lucrative) program that doesn't work at all to teach dyslexic children how to read.  Don't underestimate how connected these University folks are, they just got a 5 year grant from the federal government to re-promote their scientifically-proven-not-to-work for 20% of the population (dyslexic children) program. 

Anytime any laws try to come through the state government changing what is required they quickly use their lobbyists to step in the way by insisting on the inclusion of their program.  Constantly pushing competing ideas out of the way is their mantra despite the fact that their program only works for the small segment of the population that has simply never been exposed to literature in the home and isn't dyslexic.

Teachers in my area aren't taught the first thing about other methods like, for example, Orton-Gillingham which has been around since the 1930's and is scientifically proven to work for dyslexic children as well as any slow readers.

Generally it's well known that teachers cant identify a dyslexic child and they certainly cant remediate them (unless they were trained in a different state or are truly old and using methods that haven't been popular since the 1970's). 

My teacher friend has asked (and so have her peers) for training other than the one being shoved down their throats by the University (and their district) and sadly, they have been turned down.  The teachers sense that they haven't been prepared in college for what they actually end up facing in the classroom.

Does anyone go into teaching wanting to do a bad job of it?  Of course not, but if they aren't getting what they really need to know in college and then they cant even get the training they are requesting later to help themselves then who is the real culprit here?

I try to remind myself that there has always been corruption and that there will always be corruption it's just that when the whole teaching profession is suffering due to big money politics like I mentioned above with the University and lobbyists I cant help but see a whole country back sliding into the murky and dangerous waters of ignorance.  To me it seems the health industry already knows this.

The first horse out of the gate

I come from a long line of Kentucky natives.  Many of my relatives live in Louisville and my father spent part of his childhood right down the road from Churchill Downs where he would frequently visit the horses.

I cant claim to know a lot about horse racing but I know this,  especially at the Kentucky Derby it is a well known fact that just because a horse is the first one out of the gate it doesn't mean it's going to be the winner.

I think this sort of thinking can easily be applied to the dyslexic child.

A standard school experience goes something like this:  A child goes into a classroom and finds that they are immediately measured and compared with other children (a better teacher would certainly resist this urge). 

They are thrown into a game where they are judged by how well they read and what does their handwriting look like. 

These are the rules and this is the criteria. 

A couple years later math concepts are thrown in. 

For children that these things come easily to there are rewards.  In the classroom other children cant help but see who is doing a better job of accomplishing the tasks set in front of them.  Verbal praise is given to children following the game plan, they get better grades and sometimes there are even other rewards for being able to meet the standard set as quickly as possible, the idea being that then the teacher can move on to something new. Any need for extra hand holding is seen as a burden.

Sitting still and not making too much ruckus are also a big part of what's expected. 

One could argue that there have to be standards but stay with me.  

What if those starting out in kindergarten, first and second grades and doing well without much hand holding, the first out of the gate so to speak,  aren't necessarily the brightest kids in the bunch.  They start well but in the long run they aren't top contenders.

What if some children (take Albert Einstein for example) simply take longer to percolate or become flavorful or whatever description you like that involves taking time to get the vintage just right.

Now put the usual obstacles in the way of the dyslexic child:  the teachers who don't understand, the "behavior" issues which are really just their brain trying to cope with a situation that isn't working, the parental blaming of the child ("why aren't you trying harder?") the child blaming themselves ("why don't I understand this, what's wrong with me?"), in some cases punishment ("you are staying in at recess until these worksheets are done").

Then the child muddles their way into adulthood.  Some of them even manage by some who-knows-how way to get through all of that and still go on to higher education (although you certainly cant blame anyone dyslexic who doesn't want anything more to do with "school"). 

Yet,  what I see are these people that have had to manage and cope seem to me to have superior thinking skills. 

Yes,  I will say it,  I think the end result of not being the first one out of the starting gate could actually end up being more of an asset than a hindrance as far as brain power is concerned.  This idea isn't meant to be a reverse discrimination or to discount the intelligence of other types of brains it's simply a challenge to the assumption that first equals best.

One could say that perhaps I'm in a sort of mommy- denial place but I've seen enough people who have coped with dyslexia,  and been successful in spite of everything I listed above that I believe that dyslexia may be the brain in a more evolved place. 

I don't have to stake some professional reputation on this theory.  I just want to put it out there as a consideration. 

The trick now is getting our dyslexic children what they need at an early age without the judgments and comparing that are all too common.  If we were able to do that as a society my prediction is that we would come to a place of higher intellectual standards overall.

In retrospect an IEP meeting

I've had some time to think and rethink about my son's most recent ETR meeting.  How one of the big dogs was there sitting in for the district ( I had met her before and she watched the first time around as her employee tried to work me over, this was pre-child advocate) and how everything played out.

I humbly admit that I'm not someone who "gets it" all that well in the moment.  This trait could possibly be a coping technique from my past but I can say that it has protected me on occasion.  I do much better thinking about things later.  Later, I am astonished,  later, I have a snappy retort to a rude phrase directed my way.  Sigh. Still, I manage to muddle along.

A lobbyist I know told me not too long ago, "It's not a mediation unless everyone leaves the table unhappy."  Ha, a cynical view I know but there is some truth to it.

So with that comment ringing in my ears I told our Child Advocate that I would let the speech subject be the place where I was most vocally unhappy (but in the end I wouldn't argue too much).  It was perhaps manipulative of me but I think there needed to be a place where the pack of school personnel got to enjoy that I wouldn't get everything I wanted. I gave them that with the speech subject.

The bar is set so low on these speech tests that really, I've said it before,  I would hate to hear what a kid who actually qualifies for speech services by their standards sounds like.  That child wouldn't be able to speak. So they get to say they've done their job by testing while actually they are just continuing to be stingy with their services.  I had documented by 2 outside organizations that speech therapy was needed.  They had their ridiculous test.

Remember that these school personnel (in my experience) think their job is to protect district money and be as stingy as possible. 

In an earlier conversation the School Psychologist suggested that many parents who seek out IEP's are simply trying to "use the system".  (Her comment reminded me of how people sometimes argue about how people on food stamps are abusing that service by not really being responsible with the food they buy.)  While something like that may rarely happen generally speaking that is utter nonsense (in both cases). 

Still, this is the sort of ridiculous mentality many parents face regularly when trying to get an IEP written for their child.  That must be the sort of ignorant rationalization that lets these sort of people still get some sleep at night.

In my case I (thankfully) have an expert beside me,  guiding me and making sure that the district is actually doing the job that federal law requires.  For the majority of parents though, they are on their own facing people who barely seem to know what they are doing.  Or are so devious that they don't care what they are doing (as in the case of the big dog that came to my meetings). Sad, very sad for the state of the nation and children everywhere.

Another man's path

The problem with blogs is that they read as a story told backward.  I am better at telling a story from the beginning.  At this point though my writing are fairly random so I suppose it ceases to matter. 

Not very long ago I took my children to our local schoolyard to play after supper.  There was a man there with his 2 children and a metal detector.  His children were friendly and we ended up talking.  He had an interesting story.

I talked about dyslexia, what it was (since he didn't seem to know), what it meant to our family and how my older child is now getting along fine thanks to the school where my brother once went and the Orton Gillingham system. 

He told me he worked for a company that moves offices but the work was sporadic. He said based on his work he felt the economy still wasn't doing very well.

His wife worked at Target where although she had been a valuable employee for many years there was never going to be any promotion for her (they had finally figured this out he said). 

He had been moved from a very rural area into the big city at a young age when his mother found a man to run off with.  Previously he had lived with her and his grandparents deep in the country.  He never moved back to the country and ended up dropping out of one of my city's least respected high schools. 

Although he didn't say he thought he had dyslexia he was so interested in my story I sensed that something was familiar to him. Later he told me that he couldn't read,  that he never could and that he was pleased that both his children were able to read.  He said his oldest especially was doing well in school and that he couldn't have been more proud.  I was glad for him.

As I said before, he reminded me of my brother, he looked like him and they were roughly the same age. My brother's children do not have dyslexia either.

I went home and called my brother with dyslexia, and we talked about the huge financial sacrifice that my parents made so many years ago so that he might go to the school where my daughter goes now.  That school at the time was the same price as going to college and my parents went to the bank and took out a loan for it that took them many years to pay off.  He stayed there for 3 years and after that time (5th-7th grade) he could read and had some semblance of a self esteem again. 

This man made me realize again how important of a decision my parents made.

An interesting question and my answer

I just had a really interesting question presented to me by a truly brilliant man who has struggled and succeeded in having a great life despite having had a hard time in school due to his dyslexia.

He asked me why I was working so hard to get my kids what they need to learn to read, spell and write when there are so many new technologies out there that help with these things?  He has utilized things like audio books and computer programs and now has a PhD himself.

While I believe that his question is truly valid and I took no offense my answer goes something like this:

School in it's standard form (and believe me that is what it is in Catholic school) is a game with rules and expectations.  Without the special instruction (and personalized pace) that my child is currently receiving dyslexic children are perceived by many as not being as intelligent as those children for whom sitting still in class, turning in the required worksheets in the required amount of time and so forth are not so difficult. 

Nothing could be further from the truth of course,  their brains simply operate differently and require different and sometimes more stimulus to learn what comes easily to some.

I explained that had my child stayed in the school she was originally in she would have come through illiterate (or barely literate).  She and her parents would have been accused of any number of things such as not working hard enough on homework. I know this from 2 examples of children of this happened to.

I personally read with my child each and every night before bed while she was in kindergarten and first grade.  I knew instantly when she began to get Orton Gillingham because I saw it working in her nightly reading.

Without being at the school she is in now,  with total immersion in a method that works with teachers that understand her brain, I believe she would have suffered and blamed herself throughout childhood no matter what I said to her.

So these days we do still work hard here at our house.  Homework and tutoring throughout the summer months.  I wont say it's nose to the grindstone but really there is a lot more expectation than what I personally grew up with.

In a dyslexic person like my child  I think of the brain paths which work with language as bumpy roads with potholes.

While I hope that by concentrating on rebuilding those roads with a  method that works doesn't compromise her brain strengths in other areas I still believe that it is essential for people to be literate even with new technologies to help them.

I digress (in a sense) to talk about breakdowns of systems

When I drive through Cleveland I am always still shocked by the legions of empty factories that line the city.  They are not being converted to housing.  They are not being bulldozed to make way for malls.  They are simply empty buildings and there are many of them. They have been empty for years now. Even some of the for sale signs are weathered on the red brick blocks of buildings that once contained hundreds of workers.

On the good side, they aren't spewing their grime into the air or Lake Erie or packing the landfills with their waste.  On the bad side, they are modern day ghost towns.

Many of those factories began to shut down in the 80's.  Here in the U.S. the area, like many other formerly hardworking productive cities is part of what is jokingly referred to as the "Rust Belt" (once the "Steel Belt"). 

There is no real end to the ghostliness in sight.  Politicians always go to the area and talk about bringing back jobs.  It has yet to happen.

This lack will undoubtedly continue until perhaps people no longer remember that there were once jobs there. 

Work, productivity, education, where else is there a breakdown in this country?  Change is bound to happen but there should be some counter balance someplace,  some healing aids being applied,  some loud mouth politician making their platform about making changes that actually provide results.  I don't see any of that right now.

Take education for example.

Occasionally I'll talk to someone who knows of a teacher who closed the door and taught the class differently.  Perhaps they were an "old school" type teacher.  Or they weren't trained here in Ohio.  Or there is something else unique about them.  Inevitably they have taught in a way that has something to do with phonics.  The teacher was looking for results and once they found them, this is what they taught year after year.  After all who goes into teaching wanting to do a bad job of it.

Phonics was the way I was once taught but a teacher that would have taught me would at the least most likely be in their 80's at this point.  Back then even Sesame Street had tricks to sound out words and I remember those. Things have changed a lot since then.

The whole language methodology took the world by storm and Read Recovery became the preferred method of tutoring anyone with special needs (which doesn't work for dyslexic children I might remind everyone).  Some states (like CA) have since dropped these methods (for the most part) but the damage has been done and it's been done nationally.

It's sort of like the Emperors New clothes story.  Everyone has been playing along that this stuff works for a long time.  This is why the School Psychologists have to be so defensive.  This is why districts have to lie, distract parents with finger pointing, try to dismiss well trained doctors reports and pay extra money for insurance to cover the costs of their legal fees in case a parent gets mad enough to pursue their child's rights right on into the courtroom.

I don't have the answer to all of this yet but I'm working on it. 

Another ETR meeting and more of the same

So recently I had another ETR meeting as my son transitions out of Preschool and into School Aged Standards

(or in this case they were going to try to say he "didn't qualify for an IEP"- raise you hand if you've ever been told something similar. This is the name of this ridiculous game in a district that cares more about money than about taking care of the needs of children with learning differences).

Anyhow a warning flag as we walked into the room was the following:

6 people from the district showed up:

1. The person who recently tested him (again) for OT.
2. The person who recently tested him (again) for Speech.
3. The Special Needs Preschool Director (who is fairly clueless about how the district habit of disqualifying children is having a negative impact on society, why should she care as long as she looks good to her boss?)
4. The Itinerant Preschool coorindator if I didn't mention before they all wanted her to handle my son's OT only we insisted on an actual OT to do his remediation (since he is severe in this area and this is a decision I did not regret).
5. The School Psychologist (have yet to meet one I think is ethical, this may be the closest I've come to tolerating someone in this position but in her final words she attempted to discredit all our private testing etc. This job is so low it makes used car sales looks like an honorable profession in comparison).
6. The Special Needs Advisor who oversees all special needs in the entire district.  I have a history with her. I knew her from before when she and the Jerk who tried to disqualify (read: step on all the legal rights of) my dyslexic daughter by guiding her Catholic school teacher to make sure her latest report card to suddenly read straight A's (a common trick according to my Advocate). Plus the other tactic was to pull a record of every book she had (attempted with my help) read by saying she had read all of these books and using that against her in order to disqualify her for the IEP that her diagnosis and needs so clearly deserve.

Part of this was the Catholic school we were in (horrible) and the other part was this guidance by the district (who knew these tricks now didn't they.)

At first, it was just me and (Thank God) the Child Advocate.  I quickly went into the hall to call my husband to come from work to the meeting if he possibly could which he did.  Remember from an earlier post I advised parents to NEVER go alone to any ETR or IEP meetings (I almost broke my own rule in a sense - how foolish).  You need all the brain power, support etc for your child you can get in a room full of hostile people with an agenda.  These people are truly not at all interested in what is best for your child (unless you are incredibly lucky and I highly doubt that happens often).  

Once again I had gone in with a naive notion that things were somehow going to be smooth, on the up and up, honorable and easy.  This seemed to me like a no brainer.  We had a diagnosis from the top pediatric neuropsychologist saying clearly he has dyslexia.  Easy right? 

Ridiculous to have to say this but still a resounding NO. 

In fact they even tried to use the fact that I said that my daughter is having success in school against me.  Saying my child would "outgrow" his needs (because we have caught this exceptionally early (thanks to his sister and uncle I might remind everyone).  My husband shot back that the only reason my daughter is having the success she is was because of $60K worth of the appropriate methodology (which they are utterly unable to provide).  Thanks Honey - my husband can be very direct,  I love that about him.

The OT was fine,  there was no way to say he is anywhere near average on this part,  he isn't.  No way to scootch around this issue.  Too cut and dried.  Still, OT alone would not qualify him for an IEP at the school aged level.

Speech: he didn't qualify for any school district assistance. The bar here is set so low that I'd hate to see how bad off a child is that they would qualify would be.  Speech issues are an early indicator of dyslexia but they love to use these tests that barely anyone could fail.  Utter nonsense.  So I guess we will have to continue to pay privately for speech therapy since one day he will have to sound out words. (And we already know this).  (Parents be warned that it is common for a district to try to disqualify a child for anything based on speech,  not okay but this has happened to us twice now).

Thank goodness our Child Advocate hammered on the details of the ETR,  pointed out places I would have missed, insisted on percentages for part of the report which gave none (really now folks I was a grant writer back when I worked,  not an educator,  how would I know these sort of nuances, yet this is the sneaky tricky way this game is played all the time by all involved).

I don't think many normal people make it through this process successfully.  It is almost essential that one have a Child Advocate. 

I spent the rest of the day feeling I had been in the presence of creepiness that bordered on evil. 

Until, that is I was talking to a teacher friend of mine.  A teacher friend who really cares,  who had helped many many children over the years.  A person who speaks up,  says when things aren't right and works on the side of some very needy children. 

Bless her, she told me some stories that made me remember that I am so very lucky.  We have caught my children's dyslexia early,  we are able to get them what they need,  we have resources and I don't have to be around school politics and district nonsense except on these IEP type occasions. 

In her case, she has to deal with this stuff professionally every single day she is at work.