(Written: March 22, 2018)
April, 2018 will be 2 years since my little family, which consists of me, my husband and our 9-year old son, began our dyslexia journey. Major highlights since our Journey began:
- April 2016 our son hit the “dyslexia wall”
- He started Lindamood-Bell 2 weeks later
- August 2016 we got a private dyslexia diagnosis
- August 2016 we moved him from private school to public school for 2nd grade
- August 2016 we hired a private Neuhaus tutor to work with him after school hours
- October 2016 our public elementary school granted our son a 504 plan
- January 2018 we successfully converted our son to an IEP (Individualized Education Plan)
My son is my every heartbeat, my every breath. I’ve been so proud of him these past two years. He’s taken everything his dad and I have thrown at him with grace and without complaint, from 180 hours of Lindamood-Bell intervention, to leaving his school, to moving to a new home, through the three Neuhaus tutors he’s had and everything in between, he’s taken it all in perfect stride.
Like any mom on a new path, I’ve learned a lot over the last two years. Where I used to be very naive and didn’t know what I didn’t know, I’m in a much more educated position now. Does that mean I’m no longer naive? Um, no, not at all, but I have worked hard to develop resources and friends who support me as well as a wealth of information at my fingertips through the dyslexic network I’ve established.
As a result of my own personal journey, I’ve become a very tough advocate for my child, yet for all my knowledge and toughness, I still had to hire an advocate to get my son converted to an IEP (Individualized Education Plan) and classed as protected under IDEA (Individuals with Disabilities Education Act).
In January when we met with the school to have that first ARD meeting, my advocate and I were so blown away by what we got on the IEP that we both missed a big gaping hole in the plan. What was the hole you may ask? Well, within the IEP the collective team had failed to define the number of minutes and days per week that my son would be given dyslexia remediation.
I was pretty miffed at myself for failing to get this key piece. For a program to be successful, it must have fidelity.
So I walked into the school yesterday with what my husband called my “big baseball bat” which consisted of printed materials from IDEA, the Texas Dyslexia Handbook, and the closest document I could find to a fidelity statement for the dyslexia program adopted by my district. I had made phone calls to Region 4, the TEA and had worked out my strategic plan with a dear friend of mine who is another dyslexia warrior, and marched into battle.
During the ARD meeting, in the grand scheme of things, we did disagree, they proposed and intended to give me 30 minutes a day for a minimum of 4 days a week, but in the end I got what I was after, 45 minutes per day for a minimum of 4 days a week, every week (program fidelity). This achievement came with a change of teacher and the extra added benefit of 1:1 instruction.
I was riding pretty high on life for the rest of the day. Pretty much nothing could bring me down.
Now before I tell you the next part, you need to know that I share a great deal of information with my son for numerous reasons. The first is so he doesn’t think I’m keeping secrets from him about his dyslexia as it is nothing to be ashamed of and it’s important that our children don’t see their teachers and parents whispering about them. The second is to help him develop his own self-advocacy voice, to know how to stand up for himself, for his needs as a dyslexic and to not be afraid.
The last thing my son had said to me yesterday morning was, “go in there and win, Mom!”
Needless to say I was anxious to get home and tell my son about the results of the ARD meeting. I sat down on the sofa with his little feet in my lap, which I started to rub, while he played on his iPad, and told him about the meeting.
I was not prepared for what happened next.
He instantly sat up straight with tears in his eyes. Why did I do that? Why would I take him away from his teacher? Why would I take him away from his friends? He just couldn’t understand why. I kept trying to explain but the more I spoke the more he cried. “Fix it! Take it back! Don’t do this! Don’t do this! Don’t do this!”
I was shocked. At first I tried to talk to him and explain why but the more I explained the angrier he became. I asked him if he wanted to be alone and he shook his head yes so I left. I went to change but ended up hiding in my closet. I felt gutted and wanted to cry. I fought so hard for this. This was the right thing. This was the just, legal and appropriate thing. Why then was it more than my son could handle?
My husband asked me what was going on so I told him. He asked our son to come talk to him and I grabbed a big glass of wine and went outside where I burst into tears. My boys asked me to come back in, which I eventually did. My son apologized for making me cry and I promptly told him it wasn’t his fault. It was important that he told me how he felt. He kept trying to dry my tears, but finally gave up and gave me a box of tissues.
Not a lot has been said since, but what we did talk about and what my son knows for sure is that I love him and I didn’t do any of this to be mean to him. He knows it hasn’t been easy to fight for his rights.
So where are we with his IEP? I’ve told the school I’ll take the 30 minutes a day for a minimum of 4 days a week, every week through the end of the school year as a start. I’ve shared with them that this was much harder on my son than I had calculated and while I prefer fidelity, I’d much rather have a happy child.
What will the plan be for the fall semester? Will we do 30 minutes per day with the existing teacher or 45 minutes per day with the SpEd teacher in 1:1 instruction? I don’t know the answers to those questions yet. What I can wrap my head around today is that school is over in 8 weeks and 1 extra hour per week for a grand total of 8 additional instructional hours this school year isn’t going to make or break my son’s dyslexia.
Loving our children, providing for and giving them a safe place to land is priority #1. A very close second is protecting our children’s emotional well-being. Dyslexia isn’t fair and school is hard enough. This journey takes a toll on our children, on us.
My gut tells me to give in here so I have. I can do this for him. So, for now, I’ve set down my battle ax and requested that the school grant me this request. Fingers crossed they do so before Monday, when he was scheduled to start with the new teacher, time and days.