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…
I read and reread your post and was trying to piece together what’s going on? Did she not qualify for a 504 or was the 504 not written to meet her needs? Just curious since I am a school counselor and part of my job is facilitating 504 meetings.
I understand. I left public education after 11 years in April to work from home and at the same time, pulled my children out of school and am homeschooling. Not because my children did not have the most awesome teacher/principal/school/school district…but because they are a small number in a very large messed up system. The education system caters to the middle of the road, borderline student. Anyone below that or above that gets brushed aside. I have 2 GT children who have to sit in class going over and over a stupid state test (and then pass without missing anything bc they are above average). I have a sister with a special needs who CRIES to me to move to the same town so I can homeschool her special needs child who was once 504, but is now classified special ed…because being 504 just does not cut it. Modifications were not being made and the teachers are just not held accountable. Now with RTI being all the rage, the whole point is to get the student out of 504 or sped so the numbers look better. 🙁
It has been a rough year homeschooling (and working full time) for my girls because they miss their friends. But when I offered to drop them off on Friday last week, they insisted that they would not change things. I am so down on what our state is doing to education…and it is not just Texas, but I see it everywhere when I travel for work.
Luckily we live in a state that is very supportive of homeschooling if you choose to go that route. I would suggest reading The Well-Trained Mind. There is a great forum with TONS of information on it (and free). http://www.welltrainedmind.com/forums/
I would like to tell you it will get better, but I am afraid it won’t. Middle school for a child with special needs (like my nephew) gets even worse. Since I have only known education (all of my friends and even family work in education), if you ask them, given the chance, they would pull their children out and homeschool or go to private school. My own MIL has scolded me and my DH for homeschooling (she is a 7th grade TX History teacher). Two weeks ago she finally broke down and told my DH she understands…as much as she hates to admit it…why we made the decision to homeschool.
Feel free to contact me if you have questions.
Oh how I feel your pain my friend! We are fighting was feels like a losing battle for Oliver right now. One step forward, four steps back. Lots of hugs and warm, fuzzy thoughts for you guys!!
They are all hard decisions. He has charged us with a an awesome job, never said it would be easy, but He did said He would always be with us. He takes ordinary people and does extraordinary things. He will show you the way. Sending you love and prayers my sweet friend.
I am sending you an email with some information.
Hi I am a friend of Kristi’s. I will be happy to help anyway I can. My special needs child is now in college. We made it through public school but not without fighting every step of the way. If you would like to talk have Kristi give you my info.
Just wanted to send warm thoughts and tell you I am sorry that you are going through this right now.
Thank you.
Kristin, the first 504 was not followed by the school. It is now being rewritten.
I feel for you during this rough time! I know how hard it is to find acceptance, patience, and support. Yesterday as a neighbor child offered my son a skittle and I directed him (and he agreed easily) to say “NO thank You”, another neighbor scolded me for not allowing my son “just one skittle”, if only we could have the support or the very least the patience of others free from judgment than we could continue on doing what’s best for our children! Good luck to you and I’ll continue to read and pray for strength for you and your husband.
I’m so sorry for the struggles, but I hope you can work through it. I plead with you not to do the home schooling. I don’t care what websites say, experiences, struggles, dealing with life, that’s the learning experience. If you closet her up, you closet up her learning. Yes, anyone can sit in a room and learn from a book, etc… but as I watch my husband’s mother homeschool her adoptive son, It kills me. He is socially withdrawn, and lacks ambition because there is nothing and no one to help inspire him. Sheltered living is not living. Good luck to you guys, I hope you find a solution.