Today we are talking all about decisions and specifically the decisions we have to make when we are raising a child with special needs. How do you know that the decisions you are making for your child are the right ones? There are so many decisions to make, such as should I put my child on medication, start a new therapy, or find a new school? Most of the time we have to make these very important decisions all on our own. So, how can we know if it’s the right one? In this episode, I am going to be talking about how I know the decisions that we make for our daughter Remy are the right ones and how you can know for your child too.
Why We Made a Choice For Our Child’s Education
Remy has PCDH19 which is a genetic disorder that gives her clustered seizures. It can cause her to stop breathing, which means that she needs oxygen and medication administered immediately. So, Remy needs a nurse to shadow her all throughout the school day to make sure someone is there in case anything happens. She also needs an aid to help guide her to know what to do.
We chose to put her in TK and move her out of her preschool class, but I had a lot of anxiety about it. I was so sad to pull her out of a place where the teachers nurtured her and took care of her. We met with the new teacher to see how the new class would be like. When we met with her, we felt like there were a lot of positive things that would be really good for Remy.
Remy’s school experience seemed to be going really well and everyone that worked with Remy gave us detailed reports each day about what happened. She had a really good nurse that helped her at school and connected with her really well. I felt like I knew what was going on even though I couldn’t be with her. However, the school had us switch nurses twice for Remy and after that happened, issues with properly communicating to us and incidents at school started happening. I began to feel uneasy about Remy going to school every day.
We found out that Remy didn’t have an aid to help her in the classroom besides the nurse, and that the nurse didn’t have any experience with children or anyone with autism. We spoke with the teacher and she was not willing to work with us or communicate to us about what was going on at school with Remy. A few weeks later, when the nurse suspected that Remy had a seizure at school, she didn’t follow the seizure plan and it became clear that she wasn’t capable of taking care of Remy.
Why We Decided To Start Homeschooling
I requested a replacement for Remy’s nurse, and in the meantime, I went to school with Remy each day. It was amazing to be able to see how her days went. I had a chance to meet all of the aids as well as the teachers, who were great with the children. But seeing her at school also made me upset because I saw that Remy wasn’t engaged or participating. She was mostly overlooked because she was sitting and behaving so well.
One day, I came home and cried my eyes out to my husband Zach because I felt so bad for Remy. She was thriving at home, but at school, she was just a shell of a person. Zach asked me how I felt about homeschooling Remy and I realized that this was the answer! I felt the biggest release when he suggested this, like a huge weight being lifted off of me.
How You know If It’s The Right Decision
At the end of the year, I thought about all of the decisions for Remy that I didn’t think we would have to make. We spent so much time stressing and trying to decide if keeping her in school would be the right choice. What I realized is that we were trying to make a decision for Remy for the rest of her life. We wanted to get it right so that we would feel like we made all the right decisions. But the decisions we think are so important can be changed at any time. I had always thought that she would continue her education all the way through high school. I thought that the course was paved and yet we would completely change paths before we even started.
Sometimes, we are really hard on ourselves and we think that if things don’t turn out right it’s because we chose wrong. At the beginning of my marriage with Zach, I used to think that we would argue all of the time because we married the wrong people. But one day, I heard someone say that you know you married the right person because it’s the person that you chose. So, you know that the decision you make is the right one because that is the one you chose. Decide something, and then go with it.
Why I Listen To My Intuition
In this episode, I tell a story about a crazy experience that happened to us when we were searching for a house to rent. It taught me a lot about my intuition and how important it is to follow it!
When you are raising your kids that have special needs, whether it be medical needs, neurological needs, autism, or something else, you will have to make a lot of decisions. The decisions will be really hard, and you will want to do the best for your kids even though you don’t know what the best always is. Lean into your intuition and trust that you will make the right decisions. You are your child’s parent for a reason and remember that whatever you decide doesn’t have to be permanent. You can typically make a different decision later.
- The more you make decisions, the more you realize that the decisions don’t have to be set in stone forever. When you realize that most things are not permanent, you will feel a lot less pressure to have to make the right choice.
- Make a decision, and if it doesn’t work, it’s not a big deal because you just have to try something different. It’s okay to allow yourself to try different things. Not everything is right the first time around. So spend the time figuring it out without stressing about getting it perfect.
- Make sure to practice listening to your intuition. This will guide you in making the right decisions for your child. If something doesn’t feel right, don’t ignore that feeling, because it could be saving you from something that you will regret later on.
- The decision you make is the right one because that is the one you chose. When you are raising a child with special needs, we worry about making the wrong decisions. I always wanted to make the best decision, so that I could give Remy the best life possible. But, with any decision that you make, believe that it is the right one, at least for that moment.
- Sometimes, the decisions that you make are not the wrong ones, it could just be that they are the right ones for only a certain amount of time. Having Remy in school for the first part of the year was a good decision because she had an amazing nurse and a really good experience. So, our decision wasn’t wrong that we sent her to school, it just needed to be adjusted later on.