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.

An update on where things are now for my daughter having received the correct form of instruction (Orton Gillingham) by well trained teachers in a well regarded school.

The other day I was clearing out some of the old school supplies we have around the house.  Early on, when I had openly expressed to our family (while she was in the first part of first grade) that she was having trouble reading, one of my sister in laws gave me 200 flash cards of words that she was supposed to know (ha).

Of course she couldn't read them and I put them away high on a shelf, to be avoided.  (No sense in trying to use a tool that was clearly not going to work).

Yesterday I found them again.  She read them all at lighting speed with very few errors.  I did see her "sound-out" a couple of them but really they presented barely any challenge to her.

What that let me know with no doubt was that she will not be illiterate.  She has already had the following:

First grade: Half a year of Orton Gillingham immersion in school.

Summer Camp: a month long four hour a day intensive summer camp where her teacher basically finished off her dysgraphia issue single handedly.  (around 600 minutes of 1 on 1 multi sensory approach).

Second Grade: Complete Orton Gillingham immersion in school.

This summer:  Lexia homework (20 minutes every other day or so) and 2 hours a week of tutoring.

Which brings me to what comes next. 

Her school is (on paper) $23K per year annually.  Now this is not what we pay thanks to a scholarship etc but let me tell you what we pay is still far and beyond what Catholic school costs per year. 

Still I believe she needs one more year at her current school and here is why:

While, at this point,  she is not going to fall into the category of illiterate or barely literate (which is where sadly, so many dyslexic folks end up finding themselves) there are things I'm thinking she still needs:

1. Another year of practicing her skills in an environment that is helpful and supportive. Reminders of the methods that she has been so far. (Things like COPS, sounding out words etc).

2. Another year of smaller teacher/student ratio.

3. Another year to simply be a child in her current school that understands dyslexia and expects things in a far gentler way without the blame and finger pointing that can come with children who take extra time or are not perfectionists about their own work (as I've said before I find the children in Catholic School to be bored and miserable).

While the next Catholic school we plan on putting her into has at least an inkling about Orton Gillingham (the weekend class type of inkling) it's simply not enough to bring a child with dyslexia into the arena of thriving.  We had to have the sort of school my daughter is in now for that to occur.

No possibly way would any of my children ever go back to the original Catholic school we were in. 

Not with my memories of my daughter being papered with 8 worksheets a day (at least) by her first grade teacher (who never had any intention of teaching anyone what they really needed to know how to read). 

Not with their changing her report card to reflect her to be a straight A student so that she would look like she didn't really have the dyslexia the doctor report found and therefore would not qualify for the scholarship she has now and additionally they wouldn't personally look like the crap school they really are (thank goodness for experienced Child Advocates who had seen that sort of nonsense before).

So while this is another year of financially paying way more then we had ever originally intended to pay I think, in the long run, it's money well spent.

I never expected.....

I always meant for this blog to be more helpful, to tell more detail about our stories and other stories I had heard.  I don't think I'm quite achieving what I had originally set out to do but then things have not gone the way I expected them to go either. 

I thought we would make personal breakthroughs (sort of like reinventing the wheel) rather than find that the tools we needed are already out there but expensive to afford.

I never expected that after getting a diagnosis the next hit would come when my daughter (and then later my son) totally had their rights trampled on by school professionals who had the agenda of protecting the school district's time energy and money by trying to deny my children the IEP's they are legally entitled to have based on their diagnosis.

On a positive day I see small changes in the world and think that maybe they are starting to add up.  I think of all the celebrities who keep telling everyone that they have dyslexia and I think to myself every time the world heard the word dyslexia we get a tiny bit closer to taking care of the millions of children (and adults) who suffer because the wrong teaching method is being applied to them. 

Last night I was thinking about this and about smart people I have known through life and how I was always a bit surprised that they didn't do better in school, that they didn't seem to have the academic success I would have expected considering how intelligent they all are. I wonder if it is dyslexia and if they have just compensated in various ways to get through life since no one every really helped them the way my daughter has been helped.  What a loss to society that by not being taught to read by a good method they want nothing more to do with academics. 

Then I thought about my daughter, who could pass a spelling test with A's in first grade but then wouldn't recognize the same word on a page.  (Remember dyslexia is a fingerprint and every person's is different).

Then I was thinking about her in terms of her memory (excellent).  That gave me hope for the future too.

And I was thinking about now, how she can read and all we are doing is maintaining where she is and hopefully improving her reading speed/rate (we will see I'm not holding my breath but then again I've been surprised before at the changes can be made when one is in the right hands).

So the next huge hurdle for her will come when we transition her back into Catholic school.  I hope that wont be until fourth grade.

My teacher friend says up until fourth grade children are learning to read, in fourth grade they begin reading to learn.  I believe that.

Another story

Earlier today I heard another family story about a child with dyslexia. 

An intense story about a school district that told many lies to the mother in order to "get her off their case" and attempted numerous times to blame the child by: finger pointing, saying there are behavioral issues and using plenty of blame-the-parent technique.

This parent lives a small town where they haven't really been for long (if you have ever lived in a smaller community you probably already know the drill- it takes awhile and it's best that you aren't making waves if you are new in town). 

To sum up this depressing story the family has been ostracized in the town, the child's private news about having dyslexia is common knowledge and this child has been labeled and bullied by many as a result.

This family is getting ready to make some big changes and it has a lot to do with the way they have been treated within their community. 

Funny thing, tonight I was at my local grocery store and saw two people I knew from the neighborhood Catholic school we left.  One of the people spoke to me later (eyes glazed over when I started talking about how we had to leave, dyslexia....) and one of them saw me and completely ignored me (was that an accident, possibly).

It made me remember though that there is risk here.  Society is starting to get a clue as actors, successful business people and other famous types come out to the public with their dyslexia but there is still a long way to go. 

What needs to happen next

Sorry to have been away for awhile. 

When one's own child is in the care of the right sort of professionals and starts to learn, well, one can relax a bit.

Still,  part of my energy goes to thinking about the needs of all the (millions) of children who are still caught in the educational traps that have been laid for them across the country.

As a friend pointed out the other day,  it's amazing that dyslexia has been know about for 130 years and, as a society we are still here, not dealing with it very well.

The person who said this is a grassroots organizer who has tried to get folks in her school district organized in order to see some changes (at least hopefully getting the district to adopt the Wilson program).  She told me it isnt going well right now which I was sorry to hear.  I've been tossing that around in my head for awhile now.  I believe there is a solution but it has yet to be found.

Not everyone is willing to drop everything and put their child into a expensive private school which teaches an Orton-Gillingham based curriculum. 

Not everyone can pay for that in the first place and not everyone can make the sort of changes required by such a need.  I understand.

Additionally, in relation to this IEP meetings themselves require time and energy.  A parent has to take off work, get babysitters and (in my case) hire a Child Advocate to translate all the alphabet soup mumbo jumbo so that they (the parent) can have a decently clear understanding of what is really being offered and a sense of trust that their child's rights arent still being trampled on (it's difficult to trust people who once sat across the table trying to get me to sign a paper which essentially screwed my child out of anything they had to offer).

So here we are.  My kid is getting what she needs.  We are fully prepared to make the financial sacrifices in order for her to get the education I believe she deserves. 

Now my son is diagnosed too (and it didnt cost as much as the first time around because of something called an IEE that my advocate gently lead me to).

On a good day I think I see dyslexia coming to the forefront of society.  Movie stars are talking about it.  Famous people and successful people are admitting they are dyslexic and all of this is helpful.  Still,  like my friend said,  school districts dont want to change.  They dont want to or cant offer the help that is truly needed at this point.  A very few districts are making changes faster than others but overall there need to be more changes, more and better educated teachers. 

There is still a very loud cry for help and no help in site for the near future. 

A screening of the film The Big Picture: Rethinking Dyslexia

Last night I went to a screening of the film The Big Picture: Rethinking Dyslexia. While I knew quite a bit of what was being said I had'nt ever see an MRI showing the region of the brain that works differently from that of a person who does not have a hard time reading.  So that was great.

When I go to these types of things my feeling is that if I only learn one thing it's still worth it.

Of course I learned more than one thing though.  Afterward there was a discussion and that part is always interesting.  It seems that everytime I'm at one of these types of functions where there is a group of people all concerned about dyslexia in one way or another the following things seem to happen:

1. At least one person has to stand up and say what a great job their school/district/methodology or such is doing.  I dont personally believe this but I have found this in so many of the situations that it leads me to believe that part of the process is that people have to be able to think that their choices so far have still been good ones.  (I usually don't try to rip off the blankie even if I disagree).

2. Teachers and School Psychologists are very guarded.  If they are in the process of making changes about the way they have been handling dyslexic children so far they are not forthcoming about admitting that they were not able to reach this population in the past.  Also they are very "by-the-book" in their thinking with the idea that the law/ethics or whatever is on their side.  Again, I disagree but I'm not at the point to personally call anyone out to their face right now.

3. There is ALWAYS a couple there with a sad, scared look on their face and I know that look.  I have been where they are.  The couple who have a child at home who is struggling and the lack of information, the misinformation and so on are continuing to hurt this child and this family.  These are the people I usually try to reach out to.  It couldn't be more obvious who they are.  They may as well be wearing a sign.

So last night a woman sat next to me and we exchanged information and I will attempt to do for her what was done for me.  A stranger, one who had been through and seen a lot told me in one phone call so many things I needed to know and so many things I ended up using and basically put me 1-2 years ahead of where most people would be.  There is a lot of information that needs to be taken in and not everyone is ready to hear it. Still, I will lay it out there for the lady I met last night and hope that something is helpful to her.

Interestingly, although I know that one of the speakers knows the same things I know he did not speak about his knowledge of the private professionals or anything else. 

Although I am more brazen in a lot of ways and would have in his position I realize that not everyone is ever going to be able to go to the school my daughter does,  not everyone can go to one of the best pediatric neuropsychologists the way we have and not everyone is will to go as far with all this as I have (remind me to tell the story of the time my baby was in the PICU for 16 days).

There are many reasons for this and I see that what he is trying to do is to reach the groups that will have them bring the film and hope for the best for the masses of dyslexic children.  I understand this, I just sort of feel like I never want to have to pull my punches the same way. 

This is why it is good I'm not anything but a parent talking to other parents,  I am personally free to say what I believe. I need that.

IEP season 2013 and my son

It's been awhile since I posted and for this I am sorry.  Yet, here we are back in IEP season and I'm now up to my ears in the IEP drama's of both my children.

My youngest is entering Kindergarten this fall and guess what?

You guessed it. 

It looks like he probably has dyslexia also, and he definitely has dysgraphia.  No question. 

So I had him "tested" (and I use that term loosely) by our public school district when he came up with speech issues (an early indicator for dyslexia).  They didn't do much and of course did the usual, "oh, there's nothing wrong with him and he doesn't qualify" baloney that they seem to always try to pull on my family.

Of course he almost completely failed the Brigance test.  Which they also decided they didn't need to nationally norm for us.

So, now we are getting further (and complete) testing with Dr. NameBrand.  The most sought after, long waiting list, published and highly regarded doctor in our area. 

$1500.00 of his $1950.00 fee is being paid for by the school district. 

I see once again the benefit in re-hiring our child advocate! (Incidentally, not that anyone cares but I'm in the process of selling my Pandora bracelet to pay for this, because I'd rather have a child that can read than an overpriced charm bracelet.  We all make choices).

In the meanwhile I'm most angry that our district screened him in Dec and then waited until Feb to run their tests (lost time). 

We know someone in a better (read:has been sued) district that got help for their child immediately after a Dec screening. 

We now have an IEP in place for OT only (since he failed that piece too miserably to be denied although right up until the end they claimed he had to "qualify" in two places to have an IEP).  Guess that was wrong and or misleading and/or unethical or whatever other word you might want to insert.

Do I sound like an angry mommy,  well that is true.

So I have acquaintances who had to take things to DUE PROCESS (big word folks).  I'm going to try to meet with both families to see how this went, how it played out and what it entailed.

On a good day I feel like I'm fighting the world to make it a better place for people with dyslexia for:

Every mother and father who have cried because their bright child wasn't doing well in school. 

For every couple who ever fought, blaming each other for their child's lack of progress in school. 

For every child, who has slumped down in their school seat at some point because they decided that they really were not smart after all. 

I am reminding myself, this is who I am working for, all of these families, all of these children. 

Now a prayer: God please send your blessings here, to these folks, because they are needed now! Amen.