Parent Task 3: A secret energy source

So going through this battle is taking a lot of energy.  Just a refresher: my daughter's legal right to an assessment for an IEP based on her diagnosis of dyslexia has been violated by six adults in the education industry at this point. We had to hire a Child Advocate in order to get here what she is legally entitled to.

No matter if you are in a battle or not challenging our society with a learning difference takes energy.

So today I want to share what I consider to be a major secret to increase energy levels.  It's not massage, high-performance drugs or anything else you have to buy.

First, some background as to how I found out about this energy enhancer: there is a really great book called Born To Run: a hidden tribe, superathletes, and the greatest race the world has never seen by Christopher McDougall.  It was published in 2009.

In this book he talks about one of the best long distance runners in our country and how this man has a secret to winning all those marathons. 

In any race this runner will not start out taking the lead but will instead stay behind and run with people he believes need encouragment.  He stays with them for many miles.  They talk and he gives to them.  At a certain point toward the end of the race he becomes serious about winning and goes on to defeat people who have been ahead of him the whole time.  This world famous marathon winner has done this time and time again. This is his secret.

Now I dont run very often and when I do it's a solo activity but here is what I take from this:  helping others gives energy.

So how this works in my life has become very specific.  Since I write- I use that skill to help others. 

Yesterday,  I wrote a letter to the customer service department of my local grocery store talking about the excellent customer service I received.  I did this because the worker I had been speaking to thought it might help her in her job.  And also the service was excellent and maybe, just maybe some good will come to this deserving person because I wrote it.

My local paper called me the other day because they want to print a letter I'd written to the editor in support of our local food pantry (they are trying to expand and having a hard time).  I did this because in most cases the poor have very little voice.  I know about this subject and can weigh-in on their behalf.

So while one might conserve their energy for the fight that they are up against on behalf of their children I say try it my way and see if you arent energized. 

Find that place where you have talent and work on behalf of those in need.

Then sit back and watch what happens. 

My reading story: a very late start

So this might seem a bit ambiguous but we are pursuing getting an IEP (originally it was going to be for the scholarship money) but really mostly people need IEP's for their public school.  We aren't ever planning on attending public school in our city. 

My public school experience, as I reflect, was, to say the least, rather horrendous.  I had a great deal working against me and I think, in retrospect, that I'm lucky in a sense that I wasn't ever put into a learning disabled class (which also probably would have worked against me).  It's not that I had a learning difference or disablity (dont know). But I flat out didn't care and no one ever made me care about school.  Nobody gave me the least bit of notice unless I was doing something I shouldn't have been.  If I think about all those days, all that time lost where I could have been enjoying learning instead of just trying to get through another day--it all seems so wasteful.

Luckily, I finally taught myself to read the summer before fourth grade.  Before that I didn't care and didn't want to try.  That summer before fourth grade I was staying with my grandparents.  My grandmother had retired from teaching elementary school (fourth grade?) the year before and had many books in her garage.  My grandmother was taking a nap and I was bored so I went out to look for a picture book. 

I searched all over the garage but there were no picture books in any of the boxes.  The only book I could find was what I considered to be a big-kid book (boring old words and few pictures).  But that book had a beautiful horse on the front and I loved horses.  So I settled for that one.  I took it and laid on the bed and did the best I could to read it all because of the beautiful horse on the front.

It was a good book and I couldn't put it down. It took me about four hours but I read the whole thing (it was probably 30 pages or so).  The words made pictures in my head and it was a wonderful experience.  From then on I was a reader.

Yet school was still ridiculous to me but in fifth grade I finally had a good teacher (bless you Mrs. Jackson).
So that was a good year and then in sixth grade I went to middle school and by the end of seventh grade I had read every biography about girls and women and many other books in the whole school library.  That's all I wanted to do - read read read. 

I realized at some point that I read more than most people.  I still do.  I regularly max out my library card and that isn't to say that I read every book word for word (there are a lot of amazingly bad books out there).  I do use a lot of books for reference.  I favor non-fiction and I like things that inspire me artistically.  I do read fiction on occasion but it has to be well written.  If it is well written- it changes me.

I have been told by some that I'm a good writer.  In a sense this makes it even harder that my kid has dyslexia.  Language is an area that I consider myself to be successful. It's something I want to share.  I just hope one day that we will be able to share it in a meaningful way.  If not, then there are still other things we can share.

A child advocate

So the school did the one last thing I was looking for (oh my gosh did they underestimate me)

I hired the child advocate. 

Now who would one have thought that would have been necessary seeing how we are in the supposedly "best" school in our area for learning differences? 

Really.  I'm still in shock myself. 

Yet, once I hired the child advocate suddenly lots of interesting things started to happen. 

Especially with the whole pack people who had been lying (yes I did say lying,---I know I'm amazed myself).

These dear folk, whom one thought they could trust up until this point are suddenly defensively doing the jobs they are both paid and legally required to do. 

Who knew all you had to do was plunk down the money for the child advocate?

Parent Task Number 2: Write your timeline

You are going to write a timeline of the story of your child's learning difference. 

It's going to start when you noticed there might be an issue. 

Take good guesses if you don't remember the exact dates. 

I will post our timeline soon so you can see an example. 

You will need to continue to add to it as you have meetings and phone conversations. 

Even if you dont think you need to keep a timeline keep it anyway because you never know when things might take a turn for the worst as far as your services are concerned and this will be an important tool in your toolbox of taking care of your child.

I found this task extremely helpful.  The timeline will also help you tell your valuable story to others.

Parent Task Number 1: Get a Box

Go and get a box. 

This will be the home where you will keep every shred of paper you have regarding your child's learning difference. 

Date everything that you put in the box with the date  you recieved the paper and who it came from. 

Also in the box should go dated samples of your child's school work.

Later you will organize some of this stuff into a binder but for now get it all into that box.

Parents Equal Quality Control

In a school setting:
Parents = 

Quality Control

Auditors

Safety Inspectors (and so on)

Is it really any wonder they dont really like us around much? 

Is it any wonder that the staff all watch each others back and see us parents as the ones to be avoided. 

We create extra work, we question their judgement, we second guess their decisions and we flat out get in the way.

I realize that this is a negative view of those who care of our children day in and day out but all parents need to check their idealism at the door of the school. 

Schools are businesses and the people who run them are paid employees.  This is business.  We are not ever going to necessarily be welcome.  We are not their friends and they are not ours.  Parents can be other parents friends (in some cases) but let's not confuse the rest of the folks.

Am I being foolish?

Am I being foolish to think that just because we have now moved our child to the very expensive school that specializes in dyslexia (and other learning differences) that we are going to be taken care of where our IEP is concerned? 

I'm not sure.  There seems to be this reluctance on the part of even these school officials involved to:

1. Keep me as a parent informed in a steady manner.  Really, why should I have to keep asking what is going on?

2. Do any work on this at all.  (I'm perhaps being mean but this is the way people are coming across -like,

" (Big Sigh) Oh, okay lady I'll look to see if maybe your kid does deserve an IEP after all."

3. A refusal to believe what a $1,500.00 doctor's diagnosis says. 

I can tell when I see other kids and I see my kid that there is a difference.  This is a no brainer.  Why are people so untrustworthy and unwilling to work on our behalf. 

Here is where I'm at with it.  If I get one more sign that people are not doing what they should for my daughter I'm hiring the child advocate ($400 retainer, $80.00 per hour).  One more sign.  I'm looking out.

On the good side the other day while we were driving home from school my kid started reading the street signs.  So that is pretty good - at least she is reading after a month of her new school where by the way she is MUCH happier.  I love that.  Now if only I could believe that they are doing what they should as far as her IEP is concerned.