The Thanksgiving break holds different meanings for people. To some it is travelling to be with family. To others it is spending days in the kitchen to put on a big meal. Football, Black Friday sales, and hopefully, gratitude and charity are somewhere in there too. For me, Thanksgiving break has also come to mean Parent Teacher Conferences (PTCs). My children get the entire week off from school, but that Monday and Tuesday before Thanksgiving are the dedicated days for parents and teachers to meet, sometimes for the first time all year. These meeting usually have a formula: the teacher walks you through some work the student has done, pointing out how it is meeting, exceeding, or not meeting the standard. Now-a-days, Common Core propaganda is also worked in, and parents walk away with a thick booklet justifying it. Hopefully, behavior issues are not voluntarily brought up by the teacher. If you have to elicit them by asking “how is their behavior?” it usually means the offenses are not too distracting. As elementary students, both of my kids were rather chatty (what, YOUR kids? NO!), and often got minor infractions of talking to neighbors or calling out without the required hand-raise.
Now that I have kids with a disability and plans of action, my PTCs are changing. Usually discussing medical needs is done during what is known as a 504 Plan meeting, if your child has one. The Stretchy Son, who is in 3rd Grade, was awarded his 504 Plan last year after he struggled with hand writing through all of 2nd grade. He would cry, yell that his hand hurt and that he “HATED WRITING!” at home. In school, he would merely scratch out one sentence and just sit there staring at the wall for 20 minutes while his teacher prodded him to finish. This is where I am so thankful for good teachers: my son is smart, but he was only 7, and none of them could write very well, so for a while it was hard to know whether he was frustrated because he is just not good at writing or because his hand truly hurt as much as he said it did. I should also point out that he is a lefty, and so his chicken-scratch writing and odd way of holding the pencil didn’t give me any clues. Stumped, I met with his teacher. She suggested we go through with a 504 (which I had not heard of) so that we could consider getting him adaptive equipment, like a keyboard, if necessary. What that entailed was an official meeting and evaluations by an Occupational Therapist and a Physical Therapist provided by the school. I have to admit, even I was nervous when I thought that people I didn’t know would be evaluating him. Would our problems be obvious to them? After all, we had slipped through so many people’s cracks…
No worries there. The OT looked at me during that meeting and pronounced him “a mess.” He only had the hand strength to write for 30 seconds before accessory muscles took over and tried to help out (that’s not good.) He got his keyboard. The PT said the same thing – my son had no core strength. They also recommended that he use a “fidget stool” instead of the large lumbar support pads I was trying to send in that were too big for him. The stool forces him to sit up or he will tip over. I was in tears: for the first time, people were giving me ideas and telling me things I didn’t know. I loved it. The best part is, because he has a 504, the school pays for this equipment. (a year later, I have come up with some ideas of my own, as I wrote about in Life Hack For Kids Who Hate to Write.)
Cut to six months later – my son is doing great with his keyboard, but he doesn’t always need to use it. He no longer complains about handwriting, and he is strong enough to do it half of the time. The stool and his dance class are making his core muscles much stronger, which makes his neck and arms much stronger. However, when prodded, the teacher did tell me that he has a tendency to rock way back on his stool, to the point that she thought he was going to crash to the ground and take out two of his neighbors. Sigh. Boys. I gave her my secret weapon: what I do at home when he doesn’t sit properly is glare at him and mutter “do you want to stand?” It works every time.
The Durable Daughter does not yet have a 504 Plan* (at the time of this writing she did not, but she got one in December 2014.) Though after one concussion, many joint subluxations, battles with headaches, and weekly or even daily encounters with bigger kids in the halls where she is on the losing end of an accidental side-swipe, we have all decided that it is time to go through with the process. I had the pleasure of having my first middle school PTC, and was shocked to walk into the room to see that every one of her teachers had coordinated to be in the room with me, plus the guidance counselor. Perhaps they did that because she is a special case, but the fact that all of the teachers will meet with the parents is very impressive to me. (For those of you who do not have middle schoolers yet, it can feel like you are disconnected from their school life. I met one of her teachers for the first time during that meeting.)
I learned several things from this meeting: all of her teachers love her. They all think she is very smart and sweet, and a good advocate for her health needs. And they are all experiencing instances where she is getting in her own way, and they are afraid to push her, thinking that “she knows best.” I found myself having to remind this group of adults that she is only 11, and she does not always know her own limits. “Because she is so mature and articulate for her age, she often throws people off. She is still young and stubborn. She may be sweet and gentle, but underneath her demeanor is a will of steel.” I saw nods and smiles all around the table. I explained to them that it will be a lifelong battle for my children to lean when to advocate for themselves, and when to push through their pain and problems. “Even I am still learning how to do this.” My daughter’s teachers looked relieved, because I empowered them to stop egg-shelling around her, and to push her to do better, like they know she can. “Please don’t treat her like a poor little disabled girl,” I said. “That’s not how we treat her.
It’s not that we were accusing the Durable Daughter of being manipulative. This is a tremendous responsibility that we chronics bear. We hold the ultimate time out card in our hands at all times, and we need to learn when to use it, and when not to. Most healthy people don’t have a specific reason to get benched if they want to avoid responsibility, and they experiment with feigning “female problems,” headaches, fevers and stomach aches, and the like. But when you have a diagnosis and a government-issued plan that accommodates you? It’s the Golden Ticket. And yet, it’s not. There are consequences for overdrawing that account. I discussed it with the durable daughter after my meeting with her teachers: “The adults in your Life are smart. They know when patterns are emerging that are probably not medical. If you cry wolf, you will lose their trust.”
As an adult, I don’t have to answer to a boss, but I have an even greater authority to answer to: my integrity. I have spent my life struggling against the image of the whiny sick person, who annoys everyone with their constant excuses. I hold myself to a high standard, because it keeps me doing better and more every day, instead of giving up, and that in turn keeps me strong and healthy. It prevents me from using my handicapped parking placard on days where I can walk, even if there are no convenient spots available, because that is not right. As a parent of little patients, I am instilling these values in my children so they, too, can self-monitor when they leave the nest. Sometimes we love on each other by cuddling and wiping away tears, and sometimes, we have to show love by picking up the megaphone and yelling “Get out of bed! Drop and give me 10! You can do it!!!”
This Thanksgiving, I will be counting many blessings: a comfortable living, family and friends that love and support me. And among them, I thank the many adults and mentors that are in my children’s Life that will be there to honor their needs, but push them to do their best anyway. I am also thankful you for, my readers, my tribe. You have given me a place to vent and document my journey. I raise my glass to you – Cheers!
XOXO The MM
(Please note, I am not a medical professional. I do not diagnose or treat problems. If you have any serious medical concerns, seek the attention of a professional.)