Do you dread school as much as your child? Is it a fight to get them to go each day? Do you find yourself saying I know my child is capable…why do their grades not show it? Yeah, me too!
These are feelings and conversations that we have had for YEARs in our home. Knowing that education is important, but hating the fight that happens each and every day – sometimes with my child and sometimes with their teachers – just to get the work done. And the further we have gotten into school, the bigger the challenges seem to be.
I started trying to get documented help for my son when he was in the 1st grade. I was told that unless we had him diagnosed with ADHD, there was nothing that they could do. So I did my research, and I looked for someone that was covered by my insurance, and we took Gabe and had him diagnosed with ADHD. I thought this would fix everything… boy was I wrong!
I spent 3 years fighting to get the school to create a 504 for Gabe. No one wanted to deal with the paperwork and the rules that came with it, and at that time I didn’t know all my rights, and so we just fought. We were lucky enough to have some good teachers who worked with us…and Michael and I worked hard at home with Gabe to make sure that he was on track with his work. But that meant that every day was a fight, homework took hours, Gabe and I were in tears many nights by the time we were done, and he didn’t want to go to school.
There was no way we were going into middle school without a 504. We finally got a 504 in place and had accommodations that we hoped would work for middle school. What a wake up call that was. We now had multiple teachers and we were in a magnet school. I had teachers who fought us over his accommodations, told me that he was too stupid to be in their class, and refused to work with us. I tell you, Gabe’s math teacher is lucky that I have self control, because I wanted to slap her after she told me Gabe was stupid in front of him.
This same year, “T” went into the first grade. She had been flagged as possibly having dyslexia and they wanted to test her. During this process, I got my first introduction to an IEP (Individualized Education Plan). After they finished her testing, they sent me a 30 page report. I had 2 days to read it before I met with them. I tell you, I spent the first hour or so after I read it just crying. I was so overwhelmed and didn’t know what to do with the information I had.
I ended up reaching out to a friend who was a special education teacher and she walked me through my report and talked to me about IEPs and 504s. From there I hit the internet and did some research. I went into my meeting with a report that was tagged with sticky notes of everything I didn’t understand, and this school was amazing and walked me through the entire thing – but you should have seen their faces when I walked into the meeting with my report and all the hot pink sticky notes!
As I learned about T’s challenges, and why we had an IEP for her, I started to really dig into understanding the nuances of dyslexia…and I realized that Gabe probably had dyslexia as well and had just been masking it. It was during this time that I really started to dig into what my rights were as a parent and how best to support my children. I read about every one of their challenges, I went to any training that was offered by our school district, and I did research on my own. I learned that I could request – and the school had to perform – testing on my son to see if he had dyslexia. Once identified, they had to provide us with additional support and accommodations.
As we went through middle school with Gabe, the 504 was helpful – as long as the teachers gave him his accommodations. Unfortunately, that didn’t always happen, Gabe didn’t know how to advocate for himself, and I was still learning how to advocate for him. We had him tested early in the 7th grade for Autism, but we were told his ADHD just wasn’t being properly managed. I knew there was more going on then just ADHD, but then Covid hit and everything got put on hold.
In the 8th grade, I had Gabe tested again for Autism – this time we went to a neuropsychologist (if you need testing done, I highly recommend finding a neuropsychologist over a psychologist). Not only did they confirm my suspicions of how smart Gabe really was, they also confirmed his ADHD, dyslexia, dysgraphia, dyscalculia, and Autism. I knew there was no way that we could get through high school on a 504 with all the challenges that we were facing. So when we were getting ready for his 504 ARD, I told them I wanted an IEP for high school.
They didn’t want to give it to me; I had to fight for it. It is a lot of work on their end and it would put Gabe under the umbrella of special ed. What this meant for us is that we had a case manager. We were lucky and didn’t need all of the services provided by Special Education, but I would have a single point of contact that I could work with. One of the things I told the ARD team at the middle school when they were fighting me on this was that they didn’t know Gabe. They were seeing him for a few hours to do the testing, but that NO ONE had taken the time to get to know Gabe, who he was, or what his challenges were, yet they were trying to tell me that the accommodations and changes I wanted weren’t right for him.
We finally got everything I wanted, and Gabe would be going into high school with an IEP. One of the diagnosticians reached out to me after the meeting. She told me I was right, they didn’t know Gabe. She suggested that I write a letter to his teachers about who he was, what his challenges and strengths were, and ways they could relate to him. It was one of the best pieces of advice I had received to date.
I did write that letter. It was 2 pages long. I told them who Gabe was, what his challenges were, the struggles that we had had over the years with bullying – not just from students, but also teachers. I told them that I knew my son and I knew what he was capable of. I promised that if they worked with us, and really got to know Gabe that he would perform for them. Some of his teachers read it and took the time to get to know Gabe, others didn’t. But I was learning how to advocate for my son, and teaching him how to advocate for himself.
I met his case manager. She was amazing. We had some struggles in the beginning, but I think that we were able to work through it and realized that we both wanted Gabe to be successful. She listened to me talk about the struggles that we were having and the ones we had in the past, and we started communicating regularly. I scheduled monthly check-ins with her, and we have met every month of the school year since Gabe started in high school. She even looked after Sophea the 2 years that she and Gabe overlapped in high school even though Soph wasn’t in SpEd.
I would love to say that our journey has been perfect with our IEP, but it hasn’t. Because Gabe is in the early college high school program, he is taking both high school and college classes. There have been challenges getting the right accommodations in place to support his college classes because IEPs don’t go to college – we had to set up a 504 with the community college.
I have learned to set up meetings with Gabe’s teachers at the beginning of the year. I let them know about Gabe’s challenges. I let them know that I know my son and I will advocate to the hills for him, but that I know my son and I know that he will push the limits. I want them to know that I will support them in the classroom as much as I will make sure that Gabe has his accommodations in place to be successful.
I honestly have found this to be a better way to communicate who Gabe is than the letter, as not all of the teachers will take the time to read the letter. It also gives me the opportunity to meet the teachers and get a feel for who will acknowledge Gabe’s challenges and who I am going to have to keep an eye on. This sounds really bad, but when your child has a disability, and it is not visible, not everyone will acknowledge it…it doesn’t matter what accommodations you have in place. These are the people you have to stay on top of to make sure that your child has everything they need and their IEP or 504 are being followed.
I think that there are pros and cons to both IEPs and 504s. I think that it is really important that you take the time to understand both of them and figure out what will work best for you. The biggest thing is that you have to know what your rights are. The schools have good intentions, but they have thousands of students and not nearly enough staff. If you don’t know your rights and advocate for your child, and teach them what their rights are and how to advocate for themself, it is easy for them to get lost in the shuffle. It’s not right, but it is what I have found to be true for us.
I think that Understood.org is a great resource for people trying to understand IEPs and 504s. Also, you should check your State Education Website and see what information is there. I live in Texas, so our website has this section on Special Education that provides insights into the Federal and State laws as well as any additional rulings that apply. I know that there is a lot of information out there, but it is so important to know your rights so that you can fight for your child.
Check back frequently, because we will continue to provide resources and information to support your journey. You are NOT alone. Join our tribe and let’s create a community that helps and supports our neurospicy families!
Talk soon!
Jill
English