I wish every single teacher, school administrator, cafeteria worker, bus driver and janitor would read this.
So, so powerful.
No matter what the special need is, autism, down syndrome, or as is the case at our house, sensory processing disorder and multiple food allergies, there is a living, breathing special soul that needs attention and love and nurturing and just a little something extra from those that we parents trust enough to watch over our children while they are at school. We need confirmation. We need communication. We need that extra phone call and that extra time. We need to feel confident that child is not only genuinely cared for, but that one person, is going above and beyond. It’s not just about caring for the child, it’s making sure everyone else does too. It’s making sure the parents know. Because that fear, it is consuming. I live in fear, every single day, that she will have a major food reaction when she isn’t with me. I fear she’s not safe, I fear an adult will exposure her to something that will make her so sick. That fear turns to reality more than it should and it has almost always happened at school. Multiple times. We are struggling with her school situation. Teagan has allergies, but his school gets it, and I have yet to have a single call or food exposure with him. We are trying so hard to advocate for her, to be sure she is safe, to do the right things to make sure no one forgets. I hate living in fear and I don’t want to instill that fear in my children, to be afraid every day they leave this house. But wow, it is such a fine line to not live in fear and have food be dangerous.
And that is just the food allergies. There is a whole other set of fears and worry attached to the SPD.
So, we will now walk down a new path, fight a hard, difficult, emotionally and physically draining battle with the school, insist they do the right thing, even when it isn’t easy. The last week has been beyond stressful. We put a 504 Plan in place and it failed. We stomped our feet and then dug them in. I refuse to let her suffer and be in pain because the school can’t figure this out. This beautiful little girl, this one right here…..
….she is not a number, or a blank on a form that needs to be filled in. She is an amazing, beautiful person. She loves horses and her brothers. Her favorite color changes daily. She has a soft heart and a loud mouth. She fixes her little brother breakfast on the weekends. She has the best scowl in town, possibly country, and she knows it. She races me home every single day from the mailbox, she knows I let her win, she’s ok with that. She loves Magic Tree House books. She loves the food she eats, more importantly, she understands the food she eats. She likes to wear scarves and boots. She loves to write, you can find her notes and journals and stories all over the house. She gallops like a horse better than anyone I know. She wants to be a farmer and a horse trainer when she grows up. She is a person, who deserves respect, kindness and compassion. She is filled with a million beautiful little details and a great big, although sometimes timid and shy, but big none the less, heart. I refuse to let the system lose sight of that.
And we are asking ourselves, the amount of time we spend fighting the system to protect her, only to feel the communication is lacking and afraid every single minute she’s in school, is keeping her there the right thing to do? Homeschool? University Model? I’m afraid of the change, the responsibility, just….afraid….of all of it. And those possibilities make me angry, because if the school was doing the right things for her daily, we wouldn’t ever consider taking her out. She loves her school and she’d be devastated to leave it. I don’t know what the right answer is. Jase and I have been walking around with heavy hearts, feeling like we’ve been kicked in the gut, not sure what direction to take, feeling the weight of that decision on our shoulders, knowing there is no room for error because it is her health. I guess the truth is, I’m afraid of change. In this case, I’m afraid of the alternative too. I guess there is no easy answer. Since our path is still uncertain, we’d be totally open to any contacts for student advocates for 504 plans as well as resources and information on homeschooling. Hopefully, we’ll find our way…