The Dyslexia Initiative
Advocating. Educating. Inspiring. Empowering.
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STARTING THE JOURNEY
Our first instincts as parents is to berate ourselves. We believe we've not started early enough, could have prevented x,y and z, are angry for the delay / denial and not having fought hard enough or something similar. The first thing you must do is breathe...and forgive yourself for whatever sin you are convinced you have committed.
Second, prepare to get your hands dirty because this is not going to be easy, I'm not going to lie about that.
There are amazing resources out there, and we hope that this page will be one of them. Our point in being here is to help untangle the journey, demystify the language and help educate and empower you, the parent, to be the best advocate you can be.
So, let's get started.
Giving Grace & Forgiving Yourself
A common theme among parents in our community is, if only I would have....
Look, you have to start your journey somewhere, regardless of where that somewhere is, and it's never going to be perfect, and it's never going to be early enough, not in the opinion of that voice in our heads judging us for each step and misstep we take as parents.
What you have to do is begin exactly where you are, and begin making decisions immediately. Some of the decisions you will be expected to make, you're simply not going to have enough information to make the best decision possible, but you still have to make a decision.
Regardless, as we traverse this road and learn more, it is so easy to look back and judge those decisions we made and judge ourselves harshly for having made perhaps less than great decisions.
What we all learn is that time moves on and it's moving at break neck speed while we plunge head first into the dyslexia world and make decisions that impacts the life of our child. We cannot slow down time, no matter how hard we try. So make the decisions you have to make, at the time you have to make them, and give yourself the grace that you did the best you could, and don't look back and judge yourself for what you couldn't have done better at that time.
This is a hard enough journey without constantly judging and kicking ourselves for what we should have done differently, what we should have done better.
Learn. Adjust. Breathe. Laugh. Love. Hug often.
Your child is going to be ok because you will everything you can to help them.
How and where do you begin?
Regardless of the age of your child, it is important to start with an actual diagnosis. You have two options for this path:
1) A school evaluation
2) A private diagnosis
A few key things to note.
1) A school evaluation is not a formal diagnosis. They school does not have the staff qualified (in most cases at least) to actually truly "diagnose" dyslexia. They have evaluators on staff.
2) Your child's doctor is not going to perform the evaluation. they may or may not be able to provide referrals to diagnosticians / neuropsychologists.
3) If it is a financial possibility, try to get a private diagnosis. The ONLY REASON I state this is because it is an unbiased opinion that does not have any political connotations or agendas. Yes, most people cannot afford the great expense of a private diagnosis AND THAT IS OK! I'm simply stating, if it's an option, considering pursuing it.
4) Schools do not have to accept a private diagnosis, but they must consult them. If that's the case then why get one? Again, for an unbiased professional evaluation to give you, the parent advocate, leverage in upcoming negotiations. Knowledge is power and the more knowledge you have, the greater ability you have to negotiate from a position of strength.
But which school evaluation do I request from the school? A Section 504 or an IEP? The school is suggesting a 504 evaluation.
This is a great question! We go into detail on this subject here: https://www.thedyslexiainitiative.org/504-v-iep.
How do I know what tutoring / remediation program is the right program?
Before we begin here, we need to state something very clearly. At The Dyslexia Initiative, we do not support one program over the other. We will list programs and are working on more information, to be published here in the future, on the in's and out's of various programs. For homeschooling parents, we do have a page, https://www.thedyslexiainitiative.org/home-based-solutions, where we are listing programs as we become aware of them; so bear in mind it is an ever evolving work in progress.
What we recommend is not getting "hung up" on a particular program, but to look for the right teacher.
Because programs tend to be rigid in their design and a key aspect of successful remediation is being able to be prescriptive. No two dyslexics are alike and one program may be great for little Johnny but be disastrous for little Sally, and vice versa.
What we recommend is that you do your research, and we will try to help with that, on what is available in your district and what is right for your child.
Dyslexia remediation should be personalized for the child, not be a series of check boxes that need to be checked off in order to fulfill a curriculum or annual review.
Should I hire a private tutor or look into tutoring my child myself?
That's not an easy question, and here's why. First, private tutors cost money, so there's that. Second, not every child will let their parent teach them, so there's that too. The costs of tutors vary depending on the cost of living in your specific city / area, and what program they're using, and what training they have.
If you opt for private tutoring, try to get an in-person tutor, and note that you only want a 1:1 ratio; however there are really great tutors available over Skype / Zoom / or whatever connection tool works best for your situation. We recognize that there is a great shortage of QUALIFIED tutors available in our country, so we recognize that Skype may be your only option.
If you opt to work with your child yourself, check out the following link, https://www.thedyslexiainitiative.org/home-based-solutions.
What is an advocate?
An advocate is a person that you take with you to school meetings. They should be well versed in the respective laws, related disabilities, as well as the science of reading, and are there to be a tool to get your child what they need from the school.
There are some Special Education attorneys who will not talk to the parent about their case until they have exhausted their chances with an advocate.
There is no certification required to be an advocate. While certifications are available, certifications are not required to practice advocacy. To hire a certified advocate or not is a personal choice. What is important to note about the certification process, is it is not like a CPA license, as an example. There is no requirement for continuing education hours per year, or anything else similar to that at this time. There are great advocates who have been doing advocacy for a long time who do not want to spend the money to get a piece of paper, which is rather expensive to obtain, from one of the very few "certifying" bodies.
That being said, when engaging an advocate, make sure they truly know the law and are knowledgeable so they may be of assistance.
Here's my only other warning. It is possible to have a really great advocate who is unable to make headway with your school district, for various reasons. This is not a sign of a bad advocate, but a challenging district. Bear that in mind when making decisions, and remember, a good advocate should also be pointing that out to you.
The best advocate for your child is you; so learn all you can.
Check out our Recommended Reading List, https://www.thedyslexiainitiative.org/recommended-reading, and learn what you can about the science of reading, the way the brain takes in information, advocacy, the law, what good goals look like, and even reading instruction, if that is of interest to you. We are building this page as fast as we can and have a lot of material coming in 2020. We will be updating this section and providing more information and links as they become available.
Find Your Circle
Do not travel this road alone. Find your compatriots and hold onto them. Do what you can to ensure at least one person in your circle is extremely well informed, but mostly you're looking for people who understand your path, are learning with you, and will help you carry on, brainstorm with, and cheer you and your family onto success.
Sometimes that takes a little trial and error, and that's ok. Over time you'll figure out the best circle.
As your knowledge base grows, try to help others, and be a part of their circle too.
What we ask, what we try so hard to promote is compassion. This is not an easy journey, and emotion is deep and rampant in our community. Speak with kindness, don't judge too quickly, and uplift where you can. The community needs it so desperately.
Our movement needs you! Please add your voice to the fray. Reach out and educate your school board, your elected state and local legislators and stand up for the #ScienceOfReading and #Dyslexia. We need you to be a part of the #DyslexiaRevolution.
Various groups are engaged in various efforts. Join and learn as much as you can.