October 7, 2017
Bradley has a backpack that he takes with him to school. It isn't like one of those cute little character backpacks that the other kids are carrying to school. Nope, he has a full size backpack, in orange because that is his favorite color, but it's the size a big kid or an adult carries. It fits an adult nicely, I know this because I carry it into school and out of school for him. What? Mom does the work? No, you need to make him be more independent... yeah, yeah, yeah. My son is 44 inches tall. He has about a foot on his backpack. In his backpack he carries: a lunchbox, extra can of Pediasure, extra bottle of diluted Vitamin Water, two changes of clothes, his communication book, extra syringes, extra tubes, and a box with his complete G-Tube button replacement. Although the pack is not the same weight as he is...it has considerable weight to it, and height. So yeah, I carry it in and out for him.
I take him to school and pick him up. It's not that we are opposed to the bus, we are opposed to him not having someone with him all the time. Again with that lack of Independence thing.... Sigh. Bradley has a G-tube, if it pops out it has to be replaced within twenty minutes or he could be back into surgery for help with getting it replaced. Bradley suffers from Reflux which means that there are times when he will suddenly start gagging and retching because the Reflux is forcing fluid up and he can't prepare for that. He has a small pouch area near his wrap, it will hold fluid until such time that it doesn't and when it comes pouring into his esophagus there is no way for him to prepare for that and be able to swallow past that. It is what it is. Bradley has seizures. Without me realizing it, my son has been labeled with Epilepsy. Always before, he was referred to having Seizure Disorder, but after a sedated EEG last year, he came home with a new name for a new diagnosis. So all of that together means he could be in trouble at any moment, there is no way he can be on a bus with an aide that is not properly trained to treat his button, vent him to help with the retching, or administer Diazapam to stop a seizure. Without a medical Assistant on the bus, Bradley can't go on the bus.
Bradley has never shown any desire to go on the bus.
Bradley likes to surprise me.
Friday, Bradley met me at the door wearing his backpack. He usually hands me his backpack. Instead, he turned like he was walking off to the car, but made a left turn and walked back towards the buses. At first, he took a seat on the ledge, like he has done before. He has always liked to wave at the buses as they leave, but has never made any inclination towards wanting to be on one. Today, he waited until a staff member made to walk through the gate for the buses and then tried to go with them. He'd move forward and I would pull him back. He reached over and hugged me and then kissed me bye, then tried again with the teacher from the class next to his. He took her hand and tried to get her to walk him to a bus. Nothing doing buddy.
We had to wait for all the buses to leave, for Bradley to attempt to persuade every adult there to take him and then wait a little longer to make sure that the buses were really and truly gone. And then heartbroken, he walked up the stairs and passed his classroom to go down the ramp. Once there, he finally let the backpack fall to the ground, tired of carrying it. His teacher saw us and joined me, while I explained our predicament. She ended up walking to the office with us because she was helping to coax Bradley past the busy playground where the Kindergarten classes were enjoying their weekly Obstacle Courses, something he loves and so badly wanted to be a part of but couldn't. I promised him an Icee, but he wasn't interested. He did turn when I offered him an ice cream, but he decided to sit instead, watching the other kids. I dug in his pack and pulled out his McQueen car and offered it to him if he would stand up. He did stand and I gave him the little car, but then he just finally looked up at me, utterly defeated and put his arms up to be picked up, so I did.
I carried him to the office, once there I put him down and we walked the rest of the way holding hands. He climbed into his car seat with my guidance (sometimes he over compensates and almost falls out of it), then let me buckle him in while he played with the red, shiny vest he loves to wear. Does he need a vest yet...nope, but he walks out of his room with it, trying to put his arms through or wearing it backwards completely, so yeah he gets help putting it on and wears it on these last almost chilly mornings.
We returned home, Wendy's Frosty in hand, only to see that my little trooper had fallen asleep in the car. The Frosty waited in the freezer until later and he took a much needed nap until his sister's volleyball game. We're at the doctor at UCLA on Monday, so I have to admit I am both curious and dreading his dealings regarding the bus on Tuesday. We live five to eight minutes away, it doesn't seem worth the effort; and yet, maybe it's the most important effort out there as he exhibits his independence and his desire to follow his friends. Things to think about and talk about in the coming weeks as we try to determine what would be best for Bradley all around.
Ending Day 7 of the 31 for 21 Blog Challenge. Buses or Mom's taxi.... what to do, what to do!
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