I Did This Alone

Yesterday a friend asked me to share my origin story with her. As I told her my tale she said that’s not exactly what you’ve shared with anyone.

Her question initially derived from wanting to know who my core team was for all the things my son might need. I asked her to explain what she meant by team. She clarified and said those people I turn to when I need answers to questions based on my son’s needs. I responded, there is no team. It’s just me. As I chewed on our conversation more I realized I needed to put that into words.

When my son “hit the wall” in very early March, 2016, no one in our lives knew about dyslexia. My husband said, “I think our son is dyslexic,” but I didn’t know what that meant. I spent the next three weeks looking for “reading help” on Google. I never turned to social media. I hated social media and didn’t understand that there might be information out there via Facebook. As an analyst, Google was my friend, so Google is what I turned to. I also asked literally every person I came across if they had any suggestions, but in our private school existence, no one had any idea how to help.

Three weeks of Googling was unsuccessful until my search criteria took me to the Seeing Stars page of the Lindamood-Bell website. They had a center in Houston so I called them. The next evening my husband and I met with them. A few days later, on March 25, 2016, they evaluated our child for their program. He was at the very tail end of the bell curve for all reading meaning at 7 years, 2 months old our child didn’t know a single letter of the alphabet. A few days later he started their Seeing Stars program.

I had heard about Neuhaus Education Services from a couple of people, but their website at the time was frankly quite awful and I only spent seconds there before clicking away which is another reason why Lindamood-Bell was the only reasonable choice I found at that time. I had asked them for references and was given 3 names. Two of them mentioned Neuhaus again.

Now, I was on two paths in my research, still on Google. The first was immediate help, the second was trying to find someone who could “tell me whether or not my child had dyslexia.” I had never heard the term “diagnostician” or “neuropsychologist.” Even during my search I still didn’t learn. It would be further down our road that I would be given insight into that terminology. Somehow some way I stumbled onto The International Dyslexia Association and discovered the local Houston chapter. At that time on HBIDA’s website there was a list of providers with approximately twelve names. I printed it off and made my calls, starting at the top of the list.

The first person was going to be $4000 and it was going to be multiple sessions over several weeks. There would be sessions alone with my child, with all three of us, with me alone, with my husband alone, and with my husband and I together. The latter was explained to me that it would sort of be like a marriage counseling session.

HARD PASS.

I don’t know how much further I went down the list before I found what I will call Diagnostician #1 because I’ve forgotten her name. While I did book a session we never met with her. She had throat surgery and ended up having numerous complications and she didn’t want to string us along while she dealt with issues that kept her from being able to speak, so I returned to my list and called more names. The catch was now it was June and we were about to move and I wanted a diagnosis before I enrolled my child in public school for the fall. Out of the people I spoke to I only found one person who could accomplish that task on such short notice. We saw her in mid July and I had the report in early August prior to enrollment. The diagnosis was dyslexia and dysgraphia. Since then I learned she was not a neuropsychologist, but a diagnostician, which trust me when I say I’m good with that.

This is now the fall of 2016 and maybe a week or two later I enrolled my child in public education and class began.

Also by this time my child had completed 180 hours of Lindamood-Bell and come a phenomenal way forward, but there was still a lot to do and what we understood more than anything is we couldn’t keep that level of financial expenditure up. In 2016 in nine months alone we spent $36,000.

Now, by this time I’d had more people tell me about Neuhaus and so I called them to learn more. I provided our zip code and got the list of tutors and called them all. Only one had space. We meet with her the next day and after five minutes of chatting with her fall in love and hired her on the spot. My child was to spend 3 hours a week with her for the program. She lived nearby and we would drop him off and pick him up from her house. Sadly that came to an end suddenly in February 2017 when our very sweet and amazing tutor, at the age of 48, had a series of devastating heart attacks necessitating a heart transplant. I called Neuhaus and they did the legwork and found us a new tutor who could take us on immediately. From August 2016 through June 2020, through no one’s fault, my child had four different tutors, and completed the Neuhaus program in June 2020.

Now back to where we were in late August, maybe the first couple of days of September, 2016, this is approximately two or three after the start of school that I received a call from the Vice Principal and she was filling out the paperwork for my son to have a 504 evaluation for dyslexia. Yes, this was a very TEXAS thing to do, or at least it was prior to the last handbook revision, but 504 is how Texas prefers to “treat dyslexia.” Anyway, the evaluation happened and nine weeks into the school year my child had a 504 plan.

Another side note – the paperwork for the evaluation handed to me was a single sheet of paper and only printed on one side that “determined” that my child had dyslexia. It’s ok to laugh. While it is tragic, this is how things were done in Texas.

Now, around this time, and I don’t know from where, I had heard the term “IEP.” I didn’t know what it meant but I had heard it on Facebook, because I was starting to discover the dyslexia social media community, and from there I read that our dyslexic children needed to be on an IEP. I asked the school about it at the time and as I’ve shared before, was told that “we only put our physically and mentally handicapped children on an IEP. In Texas, dyslexia is managed via 504.” Oh, ok. My bad.

By third grade and the fall of 2017 I had learned more. By this time I knew what an IEP was though I still really didn’t understand the laws, but I knew I wanted it for my child. I also learned about this thing called “an advocate” and I hired one of those too. Mind you I still didn’t have any “dyslexia friends” and was still discovering the community, but I had started to make more noise on Facebook, at least on my personal wall.

Via the advocate we make a case for the evaluation that can lead to an IEP. The school begrudgingly agreed and that process began. This is also when I’m pressured to give into allowing the school to “evaluate my child for ADHD.” I was forced into this by my advocate which seriously hacked me off and I didn’t work with her again.

Side note: I’ve never hired another advocate. I learned I didn’t need one. Now, this isn’t advice I give to parents, but I was really digging in and understanding both the law and the Texas Dyslexia Handbook. I was (and still am) a professional negotiator and I am fairly intimidating. Now, I’ve taken friends, tutors, and our private OT with me a couple of times for very specific purposes. The last time was a friend and colleague who I actually worked for at some point because I felt like I was being set up and I needed help to read the room, which she offered to help me do. While I did my thing she reminded me of what my demands were and she read the room for me. Her conclusion was they were terrified of me and couldn’t hold a candle to my knowledge.

I received the LSSP’s evaluation of ADHD prior to the evaluation results for the IEP and of course it said my child had ADHD, “but we can’t diagnose ADHD since we’re not doctors.” Yeah, sure, ok. I called the pediatrician and emailed him their “report” and he went ballistic. He wrote them a letter saying this child does not have ADHD and stop practicing medicine without a license. He also offered to attend the next IEP meeting, which I would have loved to have witnessed, but didn’t turn out to be necessary. The ADHD bullying stopped.

January 3, 2018 – the IEP was granted and implemented, the day before the Spring semester began.

By this point I was involved in the community on social media and was learning a lot. My circle was very small but still, I’m drinking in as much information as people can provide.

Based on things I learn from others via social media, during the summer of 2018 I hired a private OT to come to my house to evaluate my child, and her findings were rather mind-blowing. We tried to set up sessions that fall in the after school program my son attended on campus but we couldn’t get through the red tape. We also made the decision after struggling with the red tape that we couldn’t afford to take on OT therapy on top of our dyslexia remediation.

Towards the end of the 2018-2019 school year I was really making the school’s life hell as I began to redline the IEP documents and dug my heels in more. They were stripping away literally everything I had gotten for my son with this IEP so I fought back rather fiercely. See, the more I learned the more intense I got, relying on all of my skills to fight for my child’s needs. As part of my war with the school I had a “mini cognitive eval” done in March, 2019 that sadly did NOT give me the ammo I needed.

Late in the school year I demanded a new evaluation to encompass his dysgraphia which “Texas didn’t have to acknowledge before.” Yes, I know that’s bs because of IDEA, but in the fall of 2016 I didn’t know what I didn’t know. Because of the number of school days remaining the evaluation was due early in the new school year for 2019-2020.

In the Spring of 2019 I had also requested an Assistive Technology evaluation that concluded my child didn’t need AT, but “they’re going to give it to him anyway.”

Well, isn’t that nice.

(There’s a joke. Seriously, my mom is cracking up reading this right now.)

Gag.

September 23, 2019 – new evaluation was handed over. At this time I stated too that I wanted an Executive Function and an OT evaluation. Those two evaluations would come back as no major deficit therefore there was no educational need.

Well, yet again, isn’t that nice.

I kept the district locked in an IEP meeting from September 23, 2019 through late April, 2020.

Did I have fun? Why, yes. Yes, I did.

As an additional aside and per my prior two blog posts, my child went back for Lindamood-Bell diagnostics every Spring from 2017 through 2023, with the only exception being 2022 because there was just too much going on to manage it. The school eventually accepted these in the marathon 2019-2020 IEP meeting and they’re written into the IEP document. A limited evaluation was performed by the school in January, 2022 as well. This summer we’ve engaged in private diagnostics for the first time since 2016.

Now, I’ve had what I will term as “dyslexia road companions” along the way. I won’t call them friends because they weren’t friends, and almost every road companion has left my life. Regardless of the terminology, none of them helped me, coached me, taught me, or supported my efforts. I’ve traveled this road essentially alone. I do have tried and true resources that I rely on, and well, I should paraphrase because some of them have become friends and I keep those close to the vest and always will. I owe them thanks for some hard conversations where they coached me through data and even emotions, but the decisions I’ve made have been in a silo based on my gut instinct and with knowledge I’ve garnered from the law and the community as a whole. I’ve learned what questions to ask, learned to trust my gut when it said something was amiss, and read when people were lying to me and played off of that tell, but ultimately this is a life where I am constantly learning and will continue to learn. There is no mastery. This is a constant evolution.

So, that’s our story told from an angle I’ve not shared before. I don’t recommend to others that they do this alone. It helps if you have people who genuinely care about you and your child to walk this road with you, but for the most part, that wasn’t my path.

To those friends and loved ones who have cheered and cried with us along the way, thank you for your love and support.