(pictures from our doctor appointment)
Yearly Appointments, we all know what these are. You go to your doctor, see how much you've grown and how tall you are and find out how much you weight, etc. For a special needs child who relies on the state for support and help. For Levi, these appointments are very important and we come prepared as much as possible. These appointments always stress me out, they use to be worse because the doctor would always push immunizations on me, argue with me, and still I would have to jump through hoops to get what we needed.
This last Wednesday I was going through our binder to make sure everything was updated and accurate. I ran across Levi's old IEP from his kindergarten year, when everything went down hill for Levi. My heart stopped, I just froze and felt immediately sick. I tossed the IEP to the other side of the room, knowing I was going to have to tackle it later, but I just couldn't think about it at that very moment.
Let's recap how kindergarten was for Levi. We had transferred over to a Charter School and for once I had all my kids going to the same school. It was nice, until things with Levi went rocky. I met with the Special Education teacher and had her go over Levi's IEP and see if she had any tips. She told me that Levi would academically struggle, but the school had a special needs program and it would be implemented where needed. I didn't want to go back to the public school we just left because they had graduated Levi out of the special needs class, against what Aaron and I felt or wanted for Levi. The public school wasn't listening to us and was just pushing him out of what we knew would be the best option for Levi. We felt unsupported and felt like the school just wanted to do what they wanted, and they did. I didn't know much about how the IEP worked at that time, this was the starting point of when I learned to do my research, hold my ground and learn how I was.
After I met with the Special Education teacher, Aaron and I prayed about it and felt strongly that putting our kids in the charter school was the best decision. I want to make note that this was still the best decision for my typical kids, and we haven't changed our mind since, yep they are still at the charter school. Things started to escalate pretty quickly. They knew that Levi had seizures, it was well documented in his IEP, but they weren't severe like they are now. The school and teacher didn't know that there were different types of seizures, they didn't know what to look out for. I had to point it out to them every time, teach them. That was something I didn't realize others who don't live life with seizures, don't pick up on. There was one day when Levi full on had a 20 minute melt down before school REFUSING to go to school. I knew something was terribly wrong because he had never done that before. I went to the school, unexpected, and wanted to see for myself what was going on. I realized then and there the paraprofessional was triggering his seizures by putting stress on him. Then when he was having a seizure, she did nothing to support him, and during his postictal state, he was being punished for his reactions that he couldn't control. The school wasn't following the IEP like I kept requesting, I ended up having to be in the class every day until we wrote the IEP and then we left the school.
I learned in these meetings with the school staff, school district and our Advocate, we spent hundreds of dollars and I learned how an IEP works, that my opinion matters and I am part of the team. I also learned that I don't have to sign anything I don't agree with. I learned that I am strong and resilient and a hard worker. I learned how to read IEP's and where there were concerns and when things needed to be re-worded. Looking back on his kindergarten year at the Charter School was a nightmare that I NEVER want to ever repeat again, but I certainly learned a lot of who I was, who I was meant to be me, why Levi was sent to me, and that I could overcome these triggers.
I ended up working on the IEP that I tossed over the to the other side of the room. I braced myself, said a little prayer to my Heavenly Father asking for help that I wouldn't break down. I am grateful for my Heavenly Father's help, I was able to to work on the IEP from the charter school where we had year of a nightmare and hope and pray we never have to repeat again. Levi's yearly appt on Thursday morning went great and smooth. We got the scripts written for therapies we need weekly, medical equipment we use daily, and referrals to get testing completed with other specialists. No stressful events, so pushing and arguing with me. Thankful for good doctors who trust us parents with intuition and the amount of hard work we put into our everyday lives for our typical children and our special needs children.
While I keep navigating this road, we will continue to have triggers and will need to keep moving forward and help others as well as heal our hearts along the way.
