Getting Personal

Today I am compelled to write about my daughter. This is not from an advocate, this is from me, the Momma of a child with Dyslexia. The Momma who gets frustrated her daughter is in third grade and cannot spell basic site words. The Momma whose child reads an entire grade level behind. The Momma who is trained in all things education, advocacy, special education, and uses the Barton Method with fidelity. The Momma whose heart still breaks because of the mountain my daughter has to climb when it comes to literacy.

In the beginning, my “M” started off great with reading. I was so proud of her bringing home her little level A books and reading every night in Kindergarten. She made progress and was moving through the standards guided reading levels. I never suspected a thing. I was confident she would make gains and learn to read and write. Then, in second grade, something changed. It was like she just got stuck. It took longer and longer to move to the next level. Words confused her. She guessed all the time when reading and could not spell. She avoided writing and reading. She would find ways to get me or the computer to read it for her. She would send video and audio responses instead of typing them. She was a pro at avoidance strategies!

I know it was not her teacher. She had the most amazing teacher. A woman who is an expert in her field. This teacher knows literacy inside and out. I have the utmost respect for her ability as an educator and her opinion. If this teacher could not get my daughter to make progress, I knew something was up. She moved to third grade and these problems persisted (even with another excellent teacher). Yet here I was, a trained advocate and a trained teacher questioning my own insight. I am someone who knows about pedagogy, methodology, and child development. I found myself wondering, “Is there something wrong? Is she not paying attention? Is she not working hard enough? Did I not read enough to her? Did I not make her read enough? Was she not in a literacy rich environment?” I went through all those questions and self-doubt that I warn parents about. Everything I knew about Dyslexia went out the window. Everything I knew about teaching and learning, forgotten. I just could not fathom that my child, the child of an expert, was struggling. I was not trusting my instincts that she was struggling because of Dyslexia. I knew it in my core and could not admit it. I am ashamed of this fact.

My thought process was completely skewed. Yes, my daughter had reversals of letters, but that is not the only indicator of Dyslexia, it could just be a developmental thing. So, I dismissed it. Yes, my daughter mixed up letters when she wrote words. Again, it could be developmental. Her spelling? Atrocious! Her reading fluency? Choppy! Her ability to decode words? She guessed! I had to take a hard look at all of these pieces of evidence. I could not blame her teachers, they were wonderful. I could not blame myself, although I tried. I could not blame her, unfortunately I tried this too. It boiled down to understanding this was all beyond her control because she lacked the tools she needed.

We started the Barton method in May. This was not easy. She did not want Momma to see how she had been coping, compensating, and covering. It was eye opening. Her struggle was far worse than I had thought. One lesson could take three, 45-minute sessions for her to process. Sometimes, I had to go back and re-teach lessons. She needed explicit, repetitive, multi-sensory instruction. It was a whole new way of looking at literacy and it was a major shift for her. This philosophy contradicted everything she had been taught about Reading and Writing. Now on level 4, I still remind her not to guess and to use her knowledge of language and letter sounds to decode a word.

I wish educators would understand, this is such a long road. It takes patience, determination, and strength to do what you know your child needs. I wish educators would understand this is not made up, not an excuse, and that parents of children with Dyslexia are not crazy. I wish they would not be so dismissive. I wish they knew that certain methods of teaching reading will do more damage than good. A multi-sensory method will serve my child far better. Reading and writing is not one size fits all and being trained in multiple methods will benefit students. I wish educators would do an in-depth study on Dyslexia to understand it better. I wish they would understand the years I have spent studying Dyslexia, working with students who have Dyslexia, and advocating for them; then maybe they would see the validity to the discussion. I wish they could see how using an inappropriate method severely affects children with Dyslexia. It makes them hide who they are. It makes them pretend because they think they are dumb.

My daughter is smart and spunky. She is creative and funny. She is so much more than her struggle, her guided reading level, or her poor spelling. She is full of beautiful ideas that are difficult for her to express through written language. Last year, I had a little girl who would never read signs wherever we went. This summer, at Reptile Gardens, she read every sign and piece of information we passed. I almost cried. I had a girl who would not write thank you cards because she could not spell all the wonderful things she wanted to say. Now, she makes cards for fun. I had a girl who would never pick up a book and read to herself. (She preferred catalogues because of the pictures.) Now, she will choose a book to read because she wants to. She was bored this weekend and uttered the words,” I guess I’ll read a book.” What? I love that!
It has taken us 7 months to move 4 levels in Barton. That is unusually long. This just speaks to how much time we needed to understand basic sounds. She processes slowly and we only work on it a few times a week because it is exhausting for her. She still has struggles. She still cannot spell “people”, but we are working on it. She can, however, understand digraphs, blends, long and short vowels, and a myriad of other things she could not do 4 months ago. This is the best decision I have ever made for her. I am giving Barton time to fill the holes left by guided reading and then will likely pursue a 504 plan.

It is sad I do not trust the public schools across the state of South Dakota to handle Dyslexia appropriately. (It is not their fault; they lack training and understand of this complex disability.) She does need specialized instruction from the school, and I am fortunate to have the training to provide that for her. Most parents do not. She will also need accommodations. She may need audio books or verbal responses on tests. Her work will need to be looked at for its ideas instead of its spelling. She needs things that can reveal her true intelligence and help everyone see her beyond Dyslexia.

I look forward to the day when she can read and write confidently. I know Dyslexia will always be an issue for her. I am thankful I can give her the tools she needs to make progress and find success. I am thankful for my training and understanding of this topic. I am thankful for this platform to tell my daughter’s story. I hope this reaches another family struggling, another family with questions, another family who does not know what to do and needs help. I am here. The Dyslexia community is here. We can help. Thank you for reading. www.inspire1learning.com

You’ve got questions, I’ve got answers!

I posted an “ask me anything” challenge on Facebook and you did not disappoint. I am always available and can be contacted through my website wwww.inspire1learning.com or Facebook. Here is what I received:

How do you get a 504 plan?
A 504 plan is all about access. It guarantees equal access to an education. Think of it as leveling the playing field. So, if a child has ADHD, Dyslexia, Anxiety, Diabetes, ect… the question becomes what do they need to access their education? What kind of accommodations will help them succeed? It is a disability that affects a major life activity. All you need to do is write a letter to the school (teacher and principal) and request a 504 plan. If they deny you, call me! It’s the equivalent of denying someone their civil right to an education. Remember, Grades are not an indicator of a disability. The parent/educator guide to 504, provided by the federal government, clearly states students may still need equal access to the general curriculum even if they have good grades.

How do you get an IEP?
This differs greatly from a 504. You don’t “get” an IEP. You are found eligible for an individualized education plan. This means your child will receive specialized instruction. They will have annual goals, accommodations, and a clear plan on how they will make progress. The first step is putting a request into writing that you suspect your child has a disability. This includes social emotional needs, academics, attention, and many others. There are 13 categories under which your child could qualify. Once you have written a letter stating the specifics of what kind of disability you suspect, the school will start the evaluation process. They will then hold an eligibility meeting to determine if your child has qualified. Then there will be the IEP meeting to develop the plan. Remember, your meaningful participation is guaranteed throughout the entire process. If you are just sitting across everyone at a table and not contributing, you may need to call an advocate to help you. It should never be a situation where you just sit, listen, and sign. Contribute! You know your child best!

What does an advocate cost?
We charge $75.00 per hour. However, we let you dictate how in depth we get. Some families opt for a quick 2-hour review. Other families feel better knowing we are with you every step of the way. If it is an initial IEP and evaluation, you can expect we will spend more time with you. We want to make sure you understand the process, the implications of testing results, and that we have a clear understanding of what you want for your child. If an IEP is already in place the time will consist of reviewing the plan, meeting with you to get your input, and attending the IEP meeting. We document concerns, communicate with the IEP team, and do our best to be the voice of your child.

Are IEP meetings longer when you are involved?
Absolutely! This is a good thing. You do not want to be rushed when it comes to your child’s educational needs. You want to have a complete understanding of what your child is learning and how they are learning. This takes time! Under IDEA, you are guaranteed meaningful participation. I believe “meaningful” means allowing more time to ask questions and sharing your ideas and knowledge. There are no time requirements for IEP meetings listed in IDEA. Of course, we want to be respectful of the school’s time but if you need another meeting to guarantee that meaningful participation, then so be it.

Can’t you just give me some quick advice?
We could, but each child is unique, and each plan is individualized. What works for one child may not work for another. That is why it is so important to see the evaluation results, input from teachers, your input, and their current plan. I need to have a clear picture of the child including strengths, weaknesses, and learning style. Many times, I will even ask to meet with your child to get their take on school.

Does having an advocate make the IEP team angry?
Sometimes. Unfortunately, advocacy has gotten the reputation of being adversarial. Too many, untrained advocates are quick to threaten lawsuits, state complaints, or due process. I will exhaust every effort before recommending any of these steps. I will negotiate, compromise, ask questions, and come up with creative solutions.
Some teams also take it is a sign that we do not trust them. This is not the case at all! I know teams are overworked and have large caseloads. I know they are bound by funding, staffing, and time constraints. I am not. I am free to look at the plan for the possibilities of what it can be and how it can help the child. It’s exciting to see the possibilities! I like to keep the focus on the child and create a plan that is unique and individualized to meet their needs. I find, once the meeting gets going, the team realizes I am not there to tear anyone down, I am not there to judge, I am not there to threaten, I am simply there to help families understand the process. I am there to ask for what we believe the child needs to succeed in school. I am there so families do not feel so alone and isolated. I am there to represent the interests of the child. I even make it a point to smile, make small talk, and try to break the ice. It is important to build trust and build relationships with people. I would be a terrible advocate if my goal were to fight and argue in every meeting. How would that help the child? How would I build any kind of mutual respect with the team?

How do you handle conflict?
Conflict is going to happen. It is a fact. However, conflict does not mean I become unprofessional. Conflict is simply a disagreement and adults have disagreements all the time. I do my best to stay calm, polite, and respectful. It is not personal. The school represents one perspective and I represent another. I stay objective, share my knowledge why I think my request is appropriate. Sometimes the team agrees, sometimes they do not. That is ok. I will advise you accordingly. I might say to let a request go; we have a good plan. I might say to enact your procedural safeguards and contact a lawyer. It depends on the child and the request. (In two years of advocacy I have only referred a family to a lawyer once. That shows negotiation can work!)

Do you only work in Rapid City?
I work all over the state of South Dakota thanks to technology. I can zoom into any meeting in any location. I can email you what you need to self-advocate. I can email or call schools. There is a great deal I can do even though I may be hours away from you. However, I do not work in other states. Although IDEA is federal law, state requirements vary. I am only familiar with the laws, policies, and procedures of the state of South Dakota and IDEA. I am not a lawyer, I am not a psychologist, I can only advise you based on my training through the Council of Parents Attorneys and Advocates (COPAA), my experiences as a teacher, and my history in advocacy.