Last Monday I attended a Mock IEP meeting put on by the Child Advocate's office and the attorney's she works with. The attorneys had to drive from another city to stage the mock IEP.
By no means did it cover everything that could go wrong during the IEP process but it was a start. There was also some pretty valuable information about getting FREE help given out. Remember that these laws are often state specific and you will need to research about what is available in your area.
There were many parents who had already been through a great deal. I was sort of sad that there wasnt a real chance for the parent's to get to know each other. I think we could have been helpful to each other. But it was a start and I expect to see at least some of these faces again.
Also I know where I'm going next which is a good thing.
I will post more detail about what I learned at the Mock IEP soon but for now I'm changing this blog to reflect what state I'm in with the hopes that this can help someone.
If this blog helps even one family get better care for their child with dyslexia then it has been worthwhile to write it.
Friday, March 30, 2012
Friday, March 23, 2012
Our Second Official IEP meeting
So I probably mentioned that we had to hire the child advocate.
I'm so glad we did (not that I really want to keep throwing money out the door). Still, all of a sudden everyone got on board really fast with everything that they should have been doing in the first place. This seems to be how this works.
We gave the public school system a second chance and they started to work. They are scared of course because they already missed their deadlines and they lied (remember I have it on tape and I told that to our new school staff which probably got passed along).
What astonished me the most was that we had to put our school (the "best" school in our area for learning disabilities) on the bad list. They lied to me too. I had to hit them with our child advocate also.
They would have let my daughter go without the testing she is legally entitled to have also. They knew what they were doing. How do people sleep at night? I may have to buy them all some Sominex. Do they still make that stuff? I dont exploit others and therefore I have no trouble sleeping.
The child advocate has to maintain a relationship with all these folks so they are making excuses for them.
Still, I want anyone reading this to see what happened from my point of view. My lesson here is this:
Parents are the only ones who really care here, everyone else is secondary.
If you have a personal experience with IEP's and those working on your "team" that is better than mine consider yourself lucky.
So at that Second Initial IEP meeting (yes I'm being sarcastic calling it that), I got some results from a speech test and a whole list of additional tests that are going to be performed.
The speech test showed that in many categories she is average or above average. Lovely, any mother wants to be told their kid has no trouble, is perfect etc. In a non-child advocate situation they would have written her off at this point as not needing further testing.
Not the case when you have hired a watchdog to make sure no one is slipping out of doing work.
Even with the majority of the speech results looking great there were some potholes where she was completely unable to answer questions correctly.
This, my friends, is dyslexia.
The potholes. Those are her dyslexia.
I imagine myself saying to her brain,
"Nice to meet you face to face Madam Dyslexia, now that I know where you are hiding I am prepared to make sure my daughter gets what she needs to handle you".
This is what testing (once again testing she is legally entitled to and that those folks are required by law to provide to her whether they feel like working or not) does for us parents.
It gives us a road map, an introduction, a heads up.
We need these. Those of us who really do want to know how our child's brains work.
Our children are not:
stupid
lazy
not applying themselves
not good at paying attention
or whatever it is that you have been told or thought.
They have a learning difference.
Difference- not disability- let's get the terminology right.
Welcome to our story. I hope it helps you with yours.
I'm so glad we did (not that I really want to keep throwing money out the door). Still, all of a sudden everyone got on board really fast with everything that they should have been doing in the first place. This seems to be how this works.
We gave the public school system a second chance and they started to work. They are scared of course because they already missed their deadlines and they lied (remember I have it on tape and I told that to our new school staff which probably got passed along).
What astonished me the most was that we had to put our school (the "best" school in our area for learning disabilities) on the bad list. They lied to me too. I had to hit them with our child advocate also.
They would have let my daughter go without the testing she is legally entitled to have also. They knew what they were doing. How do people sleep at night? I may have to buy them all some Sominex. Do they still make that stuff? I dont exploit others and therefore I have no trouble sleeping.
The child advocate has to maintain a relationship with all these folks so they are making excuses for them.
Still, I want anyone reading this to see what happened from my point of view. My lesson here is this:
Parents are the only ones who really care here, everyone else is secondary.
If you have a personal experience with IEP's and those working on your "team" that is better than mine consider yourself lucky.
So at that Second Initial IEP meeting (yes I'm being sarcastic calling it that), I got some results from a speech test and a whole list of additional tests that are going to be performed.
The speech test showed that in many categories she is average or above average. Lovely, any mother wants to be told their kid has no trouble, is perfect etc. In a non-child advocate situation they would have written her off at this point as not needing further testing.
Not the case when you have hired a watchdog to make sure no one is slipping out of doing work.
Even with the majority of the speech results looking great there were some potholes where she was completely unable to answer questions correctly.
This, my friends, is dyslexia.
The potholes. Those are her dyslexia.
I imagine myself saying to her brain,
"Nice to meet you face to face Madam Dyslexia, now that I know where you are hiding I am prepared to make sure my daughter gets what she needs to handle you".
This is what testing (once again testing she is legally entitled to and that those folks are required by law to provide to her whether they feel like working or not) does for us parents.
It gives us a road map, an introduction, a heads up.
We need these. Those of us who really do want to know how our child's brains work.
Our children are not:
stupid
lazy
not applying themselves
not good at paying attention
or whatever it is that you have been told or thought.
They have a learning difference.
Difference- not disability- let's get the terminology right.
Welcome to our story. I hope it helps you with yours.
Friday, March 9, 2012
A lesson I learned recently
Don't know if I mentioned that we had tried to go to a different Catholic School (St. Peters I think I called it earlier). They tested my kid and said no entry.
Only after they were shamed by our family member who attends that church and school did they relent and crack open the door.
The other day I called them again and said that we wanted testing before the next school year to see if they thought our daughter was better able to keep up with the other children.
Funny how I got the same song and dance from the Special Education Director I'd gotten the first time.
Here is the revelation: NO SCHOOL STAFF MEMBER WANTS A LESS THAN "A" STUDENT TO WALK IN THE DOOR.
Duh! Sometimes it takes me awhile to catch on.
The lesson here: Learn to expect resistence when you are open about your child's limitations.
This is business and they foresee that there might be actual work involved with your kid. So the lesson for this post is begin to expect resistence. Be on guard for it.
When there is no resistence then thank your lucky stars you actually found someone nice who is a good person. Know that this is rare. If a person actually knows something about learning differences and they are a nice and good person then know that you have just struck gold.
Only after they were shamed by our family member who attends that church and school did they relent and crack open the door.
The other day I called them again and said that we wanted testing before the next school year to see if they thought our daughter was better able to keep up with the other children.
Funny how I got the same song and dance from the Special Education Director I'd gotten the first time.
Here is the revelation: NO SCHOOL STAFF MEMBER WANTS A LESS THAN "A" STUDENT TO WALK IN THE DOOR.
Duh! Sometimes it takes me awhile to catch on.
The lesson here: Learn to expect resistence when you are open about your child's limitations.
This is business and they foresee that there might be actual work involved with your kid. So the lesson for this post is begin to expect resistence. Be on guard for it.
When there is no resistence then thank your lucky stars you actually found someone nice who is a good person. Know that this is rare. If a person actually knows something about learning differences and they are a nice and good person then know that you have just struck gold.
Parent Task 4: Remember when you were brave in the past
This is my story about being brave and facing the unknown future.
Let me reveal 3 silly things I thought while I was pregnant before my first child was born:
1. I will take 6 weeks materinty leave and then go back to work full time (working for one of the meanest thankless bosses there ever was).
2. It will be no problem to stick my kid in childcare what would have amounted to 50 hours a week.
3. I will breastfeed and still work full time with a young infant.
Ha! Ridiculous!
I hope everyone reading this always has choices and I realize that this isnt always the case but those 3 thoughts were so far off the mark I cant even begin to stop laughing at myself for having them.
I had a drug-free birth that was not perfect but was very close to what I wanted. I was empowered by having the birth of my choice.
I was determined to breastfeed because my mom had breastfed me when not many middleclass white women were doing that. I told myself I would MAKE IT WORK. I had been to La Leche League meetings, read the books about it and I was determined (good thing to or it would have been easier to quit).
The result of this was that when my daughter turned 6 weeks old I was just catching my breath. There was no possible way I was going back to work 50 hours a week for the meanest woman ever. My daughter was still nursing once an hour. No possible way.
There were tears. There was fear. There was a lot of ambiguity and wandering in a fog of unknowing what the future held.
One thing was clear I was staying with that baby who had to nurse all the time, to hell with money and work.
I tried one day of back-to-work-fulltime and pumping my milk (pumping barely works at that stage in the game). At eight weeks old my daughter wouldnt take the bottle at all and waited the whole day until she had me back with her to eat.
And that was that. No more full-time work for me and I didnt care what happened financially.
Things worked out. Yes, they did. I began to work part-time and things fell into place.
Being with that baby was too important to me. Nursing and mothering became my priority and that was right.
Now I have children who arent babies anymore but I still have the bravery I had to have during that time of not-knowing. I have since faced many challenges relating to my children and I know that I draw on that past experience.
Find those past successes. Those times you were brave. Keep those thoughts handy as you face your challenges.
Let me reveal 3 silly things I thought while I was pregnant before my first child was born:
1. I will take 6 weeks materinty leave and then go back to work full time (working for one of the meanest thankless bosses there ever was).
2. It will be no problem to stick my kid in childcare what would have amounted to 50 hours a week.
3. I will breastfeed and still work full time with a young infant.
Ha! Ridiculous!
I hope everyone reading this always has choices and I realize that this isnt always the case but those 3 thoughts were so far off the mark I cant even begin to stop laughing at myself for having them.
I had a drug-free birth that was not perfect but was very close to what I wanted. I was empowered by having the birth of my choice.
I was determined to breastfeed because my mom had breastfed me when not many middleclass white women were doing that. I told myself I would MAKE IT WORK. I had been to La Leche League meetings, read the books about it and I was determined (good thing to or it would have been easier to quit).
The result of this was that when my daughter turned 6 weeks old I was just catching my breath. There was no possible way I was going back to work 50 hours a week for the meanest woman ever. My daughter was still nursing once an hour. No possible way.
There were tears. There was fear. There was a lot of ambiguity and wandering in a fog of unknowing what the future held.
One thing was clear I was staying with that baby who had to nurse all the time, to hell with money and work.
I tried one day of back-to-work-fulltime and pumping my milk (pumping barely works at that stage in the game). At eight weeks old my daughter wouldnt take the bottle at all and waited the whole day until she had me back with her to eat.
And that was that. No more full-time work for me and I didnt care what happened financially.
Things worked out. Yes, they did. I began to work part-time and things fell into place.
Being with that baby was too important to me. Nursing and mothering became my priority and that was right.
Now I have children who arent babies anymore but I still have the bravery I had to have during that time of not-knowing. I have since faced many challenges relating to my children and I know that I draw on that past experience.
Find those past successes. Those times you were brave. Keep those thoughts handy as you face your challenges.
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.
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.
Monday, March 5, 2012
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.
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.
Saturday, March 3, 2012
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?
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.
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.
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.
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.
Friday, March 2, 2012
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.
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.
Subscribe to:
Posts (Atom)