What does Decoding Dyslexia mean to me?

When I was new to this journey, I had it in my head a whole list of objectives I wanted to find on the internet about dyslexia. I was looking for that one little bit of information or product or person that would be able to put this “big” thing called dyslexia in a neat and perfect package. Then I could say to my daughter who was in second grade at the time, “Okay, Jenny, here is the perfect answer and now Mom can make it all better.” I was so wrong. I was looking at things from a parent’s point of view who also has dyslexia. I wanted so badly to make it right, and I really mean easier, for my daughter. I didn’t want her to have the same experiences in school that I had as a child.

What I have realized now, ten years later, is that dyslexia is about people and valuing the child for who they are. Not perfect people with perfect solutions, not perfect products, perfect schools or the ideal presentation on dyslexia. It honestly just comes down to people. When I realized that everything changed for me as a parent and as someone who tutors children with the dyslexia profile.

Decoding Dyslexia is a way to bring people together that typically would have never met. The community is what will make it better, not perfect for the next person or the next generation but better. When you have dyslexia, and you are in school, you sometimes think that you are all alone. That can create hopelessness. But when you bring people together for the common good and share that experience with others that create HOPE.

Parents connecting with other parents from different parts of the state and even as far as the world, helping and supporting each other. Bringing up a child who struggles with dyslexia can have its fair share of challenges at times. It is tremendously helpful for me to be in contact with other parents. Being in touch with others allows me to exchange information that I have gained on my journey with others just starting out. It’s a place where we can share our anxieties, frustrations and most importantly our successes.

Decoding Dyslexia has cut down my time research to find information. When I first started out on this journey, there was no such thing as Facebook, Instagram, or Pinterest. What amazes me today is the fact that others are now so willing to share their knowledge. Teachers, lawyers, researchers, psychologists, school administrators and of course parents are connected within Decoding Dyslexia family. How beautiful for me to see and witness all sides involved coming together and realize that dyslexia affects more than just the person or child who has it. It indeed is a human experience.

There is no perfect package with all the answers for dyslexia. There are still many challenges that a person with dyslexia will meet in this literate world. We all know that remediation is the best thing you can do and that brings great relief to me. My family will still have struggles with dyslexia, but it’s nice to know that we are not alone. When we come together and share experiences, we come together with a shared intent to improve lives. Decoding Dyslexia can give others HOPE. Decoding Dyslexia has changed my outlook on dyslexia, and I hope I can do the same for other families. Let’s not stop here, we still have much work to get done for future generations. Remember dyslexia is not something that needs fixing, what needs fixing is our understanding, compassion and our willingness to help others.

As my family begins to look at colleges for my youngest daughter who wants to go into biology/zoology/chemistry, I'm reminded of a conversation when she was in third grade. We were leaving Disney World after a family trip. As we drove away with my girls buckled up in the back seat of the car, Jenny without prompting, said to her older sister, “Becky, do you know that it’s impossible not to touch something? Even if you have nothing in your hand, you are still touching something?” My husband and I quietly smiled at each other, and I thought to myself, “That’s an incredible mind at work.” Don’t ever think their dreams can’t come true because of dyslexia. They are many examples where their dreams do come true. I’m hoping that my daughter carries that same belief.

Have a wonderful day!

Writing letters that produce action

You know the old saying, "If it isn't in writing, it didn't happen." But what is the best way to put it in writing? Do you write an agenda for your IEP meetings? Do you quote IDEA law so the IEP team knows that you are informed? Do you uses your "Mom" voice or do you keep it entirely businesslike? 

This time of year I'm writing many different letters and I would like to share with you my ten guidelines that I always follow when I send a letter to school. These guidelines are designed to help you advocate for your child effectively. Please remember that I'm NOT an attorney and I'm not giving any legal advice. All final decisions are made by the parents.

1. What you say in the letter is important: I would recommended not quoting the IDEA Law. Remember there are many ways to interpret the law. I recommend using the language of the law without quoting the law. 
2. Agendas vs. Parent Concern letter: Did you know that the word agenda doesn't appear anywhere in IDEA law but parent concerns about FAPE does? This why I always write a parent concern letter and send it to the school before the meeting. I also make sure that the school knows that I will be recording the meeting ahead time and that they need to staff accordingly if we need extra time. Based on the letter of concern the school staff has a better understand of how much time is needed. 
3. PWN (Prior Written Notice): Use this in your letters so that you can get the schools decisions in writing. This a right that parents have under IDEA law and it is under utilized in my opinion. 
4. IEP Revisions: Go page by page and write your concerns down and possible suggestions down if it has to do with an IEP or 504 plan. I have found that schools will cut and paste quicker than writing on a fly in a meeting if they agree with your suggestions. 
5. Team Decisions: Never say that you want something. The law is designed for all decisions to be left up to the team. Make sure your letter reflects that as well. Yes,  parents are part of the team. 
6. Never use the word best: Schools only have to provide an appropriate education. The word appropriate is in IDEA law 150 times so delete best from your vocabulary when addressing the school. 
7. Always CC:Educational File: At the top of your letter always add CC:Educational File. This way it will be copied to your child's file. Emails tend to get deleted and sometimes never recovered. This step creates that paper trail that is needed. I also blind copy myself when sending so that I have a record that the email went through. 
8. Attach letter to the email: I never put my concerns in the body of an email. If you present it as an attachment you will get a quicker response. Plus it makes it easier to save in the educational file. 
9. Keep emotions out: State just the facts and your concerns. Write your letter and set it a side for 24 hours if you can before sending it. Edit out all emotions before sending the letter. Clearly articulate your concerns and begin distinguishing facts from your own assumptions. Never do any finger pointing, it accomplishes nothing. 
10. Be Specific about next steps: Indicate when and how you will follow-up on your letter and how you want the school to respond. Remember that you must give the recipient a reasonable amount of time to respond. Typically, I like to use the PWN (Prior Written Notice) deadline of 10 calendar days. 

I have attached a sample letter to show you exactly how I do this. All names have been removed. This is a lengthy letter because we had many issues to address. I think this will give you a clear understanding of how to write a letter to the school that produces action. 

Best of luck to you as you advocate for your child. 

SAMPLE Letter:

Date: 00/00/0000
To: XX Smith’s Educational Team
From: XX and XX Smith
RE: Parent FAPE Concerns
CC: FILE 

Dear Team, 

Thank you for your continued support in educating XX. After reviewing the current IEP, we have several concerns regarding XX’s education. We would like to ensure XX is prepared for further education, employment, and independent living by providing meaningful IEP goals. Please look over this document before we schedule an IEP meeting. We are hoping by providing parent’s concerns in advance; we can use our time wisely and make it a very productive meeting. However, please staff accordingly because there are many concerns to discuss as a team. We will be attending the meeting with our advocate, Eileen Miller who will be taping the IEP meeting. Please provide us with an invitation letter listing everyone who will be attending the meeting when we get it scheduled. We are seeking some information before our meeting, PWN (Prior Written Notice) – 10 school days, so that we can get a clear understanding of XX’s Present Levels of Performance. 

1.    IEP from 6th grade (2015-2016)
2.    Progress monitor Reports from 5TH (2014-2015), 6TH (2015-2016) and 7th (2016-2017) (all quarters) along with RTI benchmark data (2014-2017) from Fall, Winter, and Spring. 
3.    Provide Achievement testing data, and charts, that were used for the Reevaluation on 3/22/17. (We were only presented with Teacher Observation, parent input, grades and EasyCBM scores)
4.    Review of Full Continuum of curriculum and placements available within the district
5.    Formal Written Parental Consent for additional Triennial reevaluations assessments and a comprehensive AT evaluation

Below you will find our concerns and revisions that we would like to discuss with the team about XX’s IEP. 

Triennial Reevaluation:
We are formally requesting that XX have additional assessments for his Triennial reevaluation using a variety of assessment tools and strategies to gather relevant functional, developmental, and academic information about XX. We would also like to make sure that XX is assessed in ALL (Oral Expression, Listening Comprehension, Basic Reading, Reading Comprehension, Reading Fluency, Written Expression, Mathematics Calculations and Mathematics Problem Solving) areas related to his disabilities of ADHD and dyslexia. XX has not had achievement testing done since 2014 which is over three years old. Additional data is needed to determine present levels of academic and related educational needs for XX.

Secondary Disability: Page 1 of IEP
We would like to discuss in our meeting adding XX’s ADHD as his Secondary Disability. We feel that XX’s struggles with organization and responsibility is due to XX’s ADHD (executive functional skills) and should be reflective on his IEP.  

Parent Concerns: (please change to the below statement) Page 2 of IEP
We are concerned about XX’s reading, writing and spelling skills and the fact that XX is four grade levels behind and the achievement gap is getting larger. XX’s reading deficits impact his ability to access the general curriculum in all academic subjects including math (word problems), social studies and science. XX needs to receive specialized reading instruction that is intensive, explicit, systematic, cumulative, structured, multi-sensory, and language-based. The intervention needs to be based on evidence-based research that is necessary to address XX’s individual needs. We would like for XX to be able to acquire the skills necessary to decode, encode, and improve reading comprehension. With the proper intervention, XX will be able to apply strategies learned during his specialized instruction to remediate his deficits which are the results of XX’s dyslexia profile and ADHD.
 
We would like to see XX access technology more efficiently and improve his overall academic achievement. We are confident this is a critical time in XX’s education to assure he receives a strong foundation in the reading, math and writing skills as he prepares for the future. We have high expectations of XX being able to make choices for his future based on his varied interests and have access to further education and meaningful employment.

Impact Statement: Page 2 of IEP
XX’s deficits in basic reading skills, specifically decoding, fluency, and comprehension adversely affect his progress in the general education curriculum. XX’s reading disability limits his use of grade level text. This deficit area also affects XX’s ability to process information while writing and limits his ability to handle the pace of the classroom with same age peers. 

Present Level of Performance: Page 2-3 of IEP
We would like to add in the raw data scores from the Comprehension (XX’s actual score) and Reading Fluency (correct words per minute). Adding raw data scores would give all of us on the team a better understanding of where XX is at his present level of performance.  

Goal #1 Academics – Reading Comprehension: Page 5 of IEP
Concerns: If the goal is to understand what is being read, how is XX going to comprehend reading if his overall basic reading is so low? Shouldn’t we as a team, see where XX’s basic reading skills are at and write a goal for that in addition to a comprehension goal. This is one of the reasons why, we as parents, are requesting additional achievement assessments. We also don’t feel that 3 monthly monitors before the end of the IEP is a measure of mastery in this goal. Maybe 3 consecutive progress monitoring at 35% would show mastery. How is XX going to close the academic achievement gap if he is still only working on the 4th grade level? The educational gap is getting larger, not smaller. We also would like to discuss as a team that all data graphs, charting, etc. be shared with progress monitoring reports done quarterly for each goal written in XX’s IEP.

Goal #2 Academics – Reading Fluency: Page 5 of IEP
Concerns: Since 5th grade, (2014/2015) XX’s IEP has been working on a 4th grade level. In the 5th grade IEP it had a reading fluency goal at 133 correct words per minute (4th grade) and now going into 8th grade it’s 127 words per minute at a 4th grade level. The goal has been lowered and not raised.  We would like all data graphs, charting, etc. be shared with progress monitoring reports done quarterly for each goal written in XX’s IEP. XX needs a reading goal based on his curriculum and to move him forward to a higher, more independent reading level.

Program Modifications/support Personnel:
"Dyslexia-specific intervention" means evidence-based, specialized reading, writing, and spelling instruction that is multi-sensory, equipping students to simultaneously use multiple senses, such as vision, hearing, touch, and movement. Dyslexia-specific intervention employs direct instruction of systematic and cumulative content, with the sequence beginning with the easiest and most basic elements and progress methodically to more difficult material. Each step must also be based on those already learned. Components of dyslexia-specific intervention include instruction targeting phonological awareness, sound symbol association, syllable structure, morphology, syntax, and semantics.

Goals Missing:
Present Level pre-vocational skills: It stated on page 3 of XX’s current IEP that XX needs to improve in the areas of staying on task without direct supervision, paying attention and focusing on class instructions, tuning out distractions and participating in class discussions. However, there is NO goal listed in XX IEP. If there is a need or skill set that must be tackled, there needs to be a goal.

Math:
Math Inclusion service hours: We had 55 minutes a day in General Education setting but no Math Goal. Shouldn’t there be a math goal? This is another example of why we are requesting additional assessments done.

Accommodations for State/District Testing: Page 9
Can we add Reader (text to speech or Human) Human Singer to TCAP TNReady Mathematics Achievement and TCAP Social Studies Achievement?

Extended School Year: Page 11
On X/X/2018, the IEP Team will meet to determine if ESY is required.

Assistive Technology Evaluation:
We are requesting an Assistive Technology evaluation using a formal evaluation procedure. Technology may be a significant support needed to supplement XX’s academic including core subjects and executive functioning areas. 

Our hope is that we can work together as a team to provide XX with an appropriate education. However, the above information is critical for us to participate as an equal member of the team. Please inform us in writing (email) within ten days describing the action that the school team proposes or refuses to take (PWN). Also, please provide us with some times that the team is available to meet for an IEP meeting. The sooner we can get it on everyone’s schedule, the better. 

Thank you in advance for your understanding, 

XX and XX Smith

 

 

Guide to Overcoming Dyslexia→

I want to share this helpful guide with everyone. It's called Guide to Overcoming Dyslexia. It's packed with 40 individual resources for anyone affected by dyslexia. Read on to discover resources for students and teachers. There is even a sections on scholarship for older children. This is a must keep handout to save. 

www.supersummary.com/dyslexia-guide/

A Universal Wink

Sometimes kids say the darnest things. I’m amazed at what I learn from the children I tutor. I would like to share something that happened recently to me. I think we need to change our thinking towards children who have dyslexia. These are very bright, intelligent, funny, creative and entertaining people. We should never think less of them just because they struggle to read, write and spell.

After I finished tutoring the mom and the child walked out of my office. I needed to take a break and followed them out. They didn’t realize I was behind them. The little girl was holding the mom’s hand and said to her mom, “Mommy, she is nice and smart.” It was one of those moments, so pure and innocent. No denying it. Now my husband tells me I’m smart all the time and I don’t always believe him. My clients give me amazing compliments. But this one touched me in a way that made me believe it. A Universe Wink is what I’ve been calling it.

How many times do we question our abilities? What non-truths do our children believe about themselves? What if I questioned what the little girl thought of me.

I am nice?

I am smart?

We tend to put questions marks where we shouldn’t. What would happen if we just dropped the question marks altogether?

That could be life changing for children in school who have dyslexia. Have a gorgeous weekend. 

A few steps ahead

As parents of a child or children with dyslexia, we can get a little stuck trying to "fix" the challenges our children face or what we think they will face. We as parents always want to protect our kids as much as possible, but it's easy to end up concentrating too much on the negative. As my daughter starts her Senior year in high school, I can't believe how fast time has gone and how much she has accomplished and how so many of my fears never happened. Yes, there were some trying moments but the journey from second grade to now has been surprising in a lot of positive ways. Mom's fear: Foreign Language requirement in high school. My daughter did take a foreign language but didn't stop at two years she took four years. Mom's fear: English class and essay writing.  My daughter is taking her second AP English class, and she continues to amaze me in what she can accomplish inside and outside of school.

So, with the start of school starting in Tennessee in a few weeks, this is my perspective from a few steps ahead.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. I promise. You might even be able to take in the view. I have been taking in the view for a few years now. I have also watched some of my students who I tutor soar as well. The view is amazing when you look at where they started. The options are endless if you continue to believe in hope.

Most likely you will doubt yourself. You won’t trust your instincts right away at least I know I didn't. You will be afraid that you don’t have the capacity to be or do what your child will need. But you do know. You are much stronger than you think you are. Trust me. I know you. Hell, I am you. I have cried myself to sleep many nights and shared tears with parents and students. You got this.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. Choose your circle wisely.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you. You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small steps. The information isn’t going anywhere. Breathe. I still have stacks of books that I want to read, and I will get to them. Be a life long learner, and you can get through it. Your child will guide you along the way.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known or that you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long for it does no good for you or your child.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every reading, writing and spelling milestone met, no matter the size or the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared the excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and tutors who see past your child’s challenges and who truly understand their strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. I’m not saying that dyslexia in itself is a but many people find the gifts along the journey. Tolerance, resilience, grit, work ethics, feeling a failure and getting back up and trying again, compassion, understanding. Precious, life altering gifts. 

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in the field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child. With time, you will become the real expert.

You will help your child be far better than OK. You will show them, love. They will believe in themselves as you believe in them. They will astound you, over and over again. They will teach you far more than you teach them. They will fly. After all, they haven't changed from day one. Just your understanding of who they are is all that has changed. 

The first picture of my daughter is one of my favorites because it shows one of her many gifts. She loves animals and is fantastic with all types of animals. She is picking a field that is geared to her strength. She is looking into colleges that offer zoology. I know she will rock it and be successful.

It will be okay. Hope everyone has a fantastic school year. If you need my help, I'm always willing to help.

A mom who is a few steps ahead.

Eileen 

Should you bring food to an IEP meeting?

Eileen Miller does not give legal advice and is not responsible for final advocacy decisions. Below are my experiences and observations when attending IEP meetings. 

Ok, I must admit that I love a good donut. It’s not something I often buy so when I have one; it’s a treat. So, do I bring donuts with me to an IEP meeting? I have never brought and don’t ever plan to bring donuts or any food to an IEP meeting. Never did as a parent when I was in the trenches with my daughter or as an advocate. Here is why –

According to the Procedural Safeguards, parents are an equal member of the IEP team. Once a parent brings food to the meeting it changes “equal member.” I never get offered food from the school, and they are the ones holding the meeting. I do greatly appreciate it when the school offers me water, but that doesn’t happen the very often. I also feel that once a parent brings in food to a meeting it creates a causal environment. IEP meetings are business meetings. It’s not about adults sitting around the table making small talk. It should stay child focused.

I understand that the thinking is if I’m kind and sweet to the school staff they will be the same in return and give me what I want for my child. To me, that feels like a buy off, and I never want to feel like that as a parent or an advocate. What I want in a meeting is for ALL of us to discuss a child’s unique needs, collaborate, and keep the meeting child-centered. I never want to second guess why changes were made or not made at a school meeting.

Here are a few things that I always bring to my meetings I attend.

1.    Coffee or water depending on what time the meeting is scheduled. 

2.    A recorder: I always record my meetings. You will never remember everything that was said, and you need to follow up with a recap email.

3.    The child’s reports and data: Hopefully, the school shared this ahead of time. If not please make sure you get reports with the data. Don’t let the school talk numbers without documents. You can be lost in all the numbers that are thrown at you. Schools have the reports and data. If the staff doesn't bring the documents to the meeting that you need, ask them if someone can step out and get you copies.

4.    A list of concerns: Write out your concerns and have data and documents to back up those concerns. Check these concerns off so that you make sure each one is discussed. Things can get missed if they are not checked off.

5.    Collaborate mindset: The best way to get collaboration is to ask questions. If the school tells you no, don’t argue with them. Ask them to write the reasons for the no in the notes. Follow up by asking, “What is the criteria for a yes?” Then you know where the gap is and how to strategize going forward. You now have a written account of what was said.

There is a time and a place for gift giving and showing appreciation. I don’t believe it should be at the IEP meeting. You are welcome to stop by the school at another time to share and show your appreciation. If fact, I would encourage it, if you have an excellent meeting. Meetings for me will always stay child focused and I will leave the food for another social occasion. Consider this in mind the next time you have a scheduled IEP meeting.