Anyone that has followed me or knows much about me, knows about my son with cerebral palsy. At the start of the school year, we began a brand-new journey with him — not just starting school, but joining a general education kindergarten classroom for the first time. This meant my son would be in a standard classroom with kids that did not have his level of special need. As you can imagine, this was a very nerve-racking step for us to take. The previous two years, he attended a pre-school centered around special education, so this was new territory. Fortunately, my son’s disability does not greatly affect his cognitive ability; unfortunately, however, it does affect how he verbalizes what he knows.
Throughout this year, I have learned a lot and have decided to share some of the things I have learned in hopes of helping others.
Don’t be afraid to get what you need.
One thing I wanted to make sure of was that my son had a full-time aide. Because of his mobility issues, he needs assistance doing things that seem to be minimal to other kids. Moving around at all for him is something he can’t do alone. I spent a few days before the start of school making phone calls to make sure he had the assistance he needed. My son fortunately attends a school that values his needs and helped me sort out his assistance. There have been other times throughout the year where we have had to communicate other needs and worked to get them for our son.
To flip the coin: Help them with the needs they have.
There have been a few instances where his schooling team had asked me for things they needed. As much as I expect them to make accommodations, I should also be expected to help them fulfill their needs.
Find a schooling team you can trust.
This is a big one, arguably the most crucial factor in making a school experience truly successful. I know that there isn’t always much choice in this. We have been fortunate enough to have an amazing team from the start, but if I could stress anything it would be to get to that place with your child’s schooling team. During the week, they will be spending the majority of your child’s waking hours with them. You will also be working as a team with them throughout the year. The only experience I have with the school system is struggling my way through when I was a student. Although I have overall say in my son’s care, I rely heavily on the people with the experience and knowledge that I don’t have.
IEP meetings can be hard.
Anyone that has had experience with IER meetings should not be surprised by this news. IEP meetings can be tough. It sometimes feels like you are sitting a room with a group of people reiterating all the things you know your child isn’t doing. Let me take a quick moment to say sitting through these meetings is really tough, but you do it for your child. You advocate, you plan, you care; it isn’t easy but you are strong, keep up the good work! This is why I say it is so important to trust your child’s team as they will be able to help you come up with a plan best suited for what your child needs.
Understand your child’s true abilities.
This can be a hard reality to face. Understanding what your child’s true abilities will help you with a realistic view of what your child will need. I, of course, would love for my son to be able to be in class with all the other kids and learn the same as them, but the fact of the matter is that he can’t. I never want to limit his potential and I feel like I have not done that. At the same time, I can’t set him up for failure by expecting him to do things that at this moment he cannot. I will go to the ends of the earth to get him what he needs to succeed but that include being real with myself.
You will have to make hard decisions.
There are times where hard decisions have to be made. Let’s face it: in the world of a medically complex child, this isn’t news, but that doesn’t make it any easier. Again, having a schooling team you can trust will help make hard decisions a little easier. 
A hope and a thank you.
Sending your child to school as a parent can be scary. Your child having a special need adds a whole new level of fear. My hope is that you find a team who loves and supports your child as wholeheartedly as ours has — and for that, I want to take a moment to say thank you to them. I wish I could say thank you to each one individually but there are so many amazing people that help my son on a daily basis. Thank you for always being there. For laying on the floor with him knowing that is where he is comfortable. Thank you for celebrating even the smallest moments with him and with me. Thank you for helping me load his equipment in and out of my car. Thank you for your patience, I know it isn’t easy. Thank you for arranging for him to spend time with the police officer he couldn’t stop talking about. Thank you for your dedication.
With tears in my eyes I truly can’t thank you enough for loving my son enough to help him as much as you do! It will always be appreciated. You are making a big difference to my family.
