Some of us have had a better week than others.
Mine was a little shaky. First of all, I've been tracking my blood glucose levels for the past week and a half or so on account of a somewhat disastrous doctor's visit, and it's been something of a struggle. I'm not going to go into it in detail because any time I mention my diabetes, I seem to hear from the kook fringe on a whole new level, about how I'm a fat piece of shit who deserves my diabetes, or how I'm a Type 2 and not a Type 1, so I don't even KNOW how bad I could have it. So no, not a topical door I'm kicking open, but the beedies have been something of a bummer.
On top of that, Schuyler went away for a three day camp. By herself. And I was a big ball of anxiety the whole time.
I've been calling it "Adventure Camp" for weeks, even though the school inexplicably (and boringly) refers to it as "Fifth Grade Outdoor School" for some reason, but I was pleased to note that the facility itself is actually called the Collin County Adventure Camp. Schuyler has been in a state of alternating excitement and fear about going to camp. She's indicated that she's having a tough time making new friends at school this year and that some of the kids have been mean to her. She told us that she didn't want to go to camp unless we were there (apparently there's no party like a Smelly Old Boring Parents Party), and at school, she told her classmates that she wasn't going (because we wouldn't let her). But in the days leading up to camp, her excitement level grew, and she was telling stories about how she was going to catch a bear at camp, and quite possibly eat him, too. By the time Monday rolled around, she hopped on the bus excitedly without so much as a glance behind her.
I wish I could say that my own anxiety level diminished, but I've been very keenly aware of how high the stakes are here. If she made friends and had a good time, it would very likely make the rest of her school year go much more smoothly, and help grow the community of classmates that will follow her into the horrific Lord of the Flies wasteland that promises to be middle school next year. And if camp went poorly, I feared that she would never get back on track.
Well, apparently Adventure Camp went very well for Schuyler. She missed out on that bear hunt, sadly (although really, I would prefer to be with her when she makes her first kill), but she engaged in archery, paddled a canoe, and even caught a fish. ("But just one," she's quick to emphasize; apparently she already has an intuitive feel for some of the wackadoo animal rights email I've gotten over the years.) She came home with a souvenir mug signed by her friends and teachers, a layer of kid filth that was impressive even for her, and a general air of contentment that we hadn't seen for a while. I think Adventure Camp was exactly what she needed. What we all needed, really.
Things aren't perfect; this didn't reset any of our concerns about the school year. The notebook that was supposed to be filled with scientific observations was mostly blank, for example. And in the few weeks she's been in school, Schuyler has yet to bring home a single piece of homework from her mainstream class. We won't be meeting with her mainstream teacher for a few weeks yet, but when we do, we'll still have the same questions and concerns that we've had for some time now. We're not interested in mainstreaming as an exercise in macaroni art; Schuyler will not be attending Potemkin Village Elementary School if we can help it. And I know that we're not the only parents who have had a rough year so far. There's still a lot of work to be done here.
But at the same time, Schuyler's experience at Adventure Camp appears to have been a step in the right direction. She survived, and she wasn't tormented or abandoned in the woods by the mean girls. For that, I am happier than I have the words to express.
Incidentally, we only heard about Schuyler's activities from her teacher. When asked how it went and what she did, Schuyler merely gave the same infuriating little smirk and said nothing much more than she had fun. Maddeningly, Schuyler still loves her secrets. I hope that the ones she chooses to keep over the next few months and years continue to be positive ones.
But I fear otherwise, and that breaks my heart.
Glad Schuyler had an awesome time at camp, with the archery and fishing and bear-catching.
ReplyDeleteHope she gets some good homework.
Pometkin Village! Yes, I have heard and seen of Eisenstein in my movie-viewing years.
Rob,
ReplyDeleteYou Did Not Eat Your Way To Diabetes discusses and links to dozens of research papers pointing to the real causes of diabetes, genes, epigenetics and environmental pollutants mainly.
This page summarizes a simple technique that has helped thousands find their own, unique diabetes diet: How to Lower Your Blood Sugar.
Yay! For Schuyler! And for you! :)
ReplyDeleteAnd you know my stance on asking for diabetes - that's the biggest load of bullsh*t I've ever heard. I'm glad you're making choices (recording, working with doctors) that will make a difference in the long run.
In my day (LOL!) we didn't do adventure camp until 6th grade. It was alright except that I sprained my ankle by the pool during free time and missed a lot of the actual "adventure" stuff.
ReplyDeleteAs for the diabetes, I think any kind is hard to manage and pretty much sucks.
With her rouge spirit and interest in bear hunting Schuyler will make a great intern for President Palin!
ReplyDeletePerhaps Schuyler can teach her to keep her mouth shut...
ReplyDeleteGood for her!! So happy she had fun at camp. Most NT girls your daughters age start to keep some secrets from their parents. It drives me insane, I have to say.
ReplyDeleteMaybe adventure camp experience is a clue to 'unlocking' more of Schuyler- hands on-up to your elbows activity is just as important to her learning experience as sitting and reading...maybe building or making something with simple directions at first...and having something to show for the work she put into it ...I don't know...but if it was FUN run with it...
ReplyDeleteAs another Type 2 struggling with the same sh*t, er, issues, I was going to recommend Jenny's site, too. (Hi, Jenny!)
ReplyDeleteAwesome that Adventure Camp was actually an adventure. And judging from the target pic, Schuyler's archery skills are much better than mine were, even in high school. Bears beware!
Hang in there. I am glad camp went so well.
ReplyDeleteI found a wonderful book worth reading. "Knowing Jesse" by Marianne Leone. It is the story of grief grace and every day bliss. I especially like her battle with the school system and insensitive teachers and admin. One teacher wrote in the home school book
" The para and I are discouraged as every time we tell you Jesse is having a behavior (screaming) your find a reason for it. YOu must realize this behavior is not acceptable for any reason. It is not even acceptable for pain"
The book is a joyous and funny celebration of Jesse's life. HE was non verbal ( CP ) but used AAC devices and created loving poetry.
He typed independently when he was in middle school
Inside /outside.
ON inside I walk
On outside I give
ON outside I am mute
On outside I give
ON inside I speak
On inside I walk.
Teacher Sherry
During the all-too-brief life of their physically disabled son, Jesse, who died in his sleep five years ago at the age of 17, the actors Marianne Leone (who played the mother of actor Michael Imperioli on HBO's "The Sopranos") and Chris Cooper (an Academy Award winner for his work in "Adaptation"), often sought relief in black humor. They would joke that if they were booked onto an afternoon talk show, their screen ID would read: "Tragic parents of severely handicapped child." What made the line funny was not just that it was politically incorrect but that it captured their dilemma. Others may have seen them this way, but that was not how they saw themselves.
ReplyDeleteBorn 10 weeks early, Jesse Cooper suffered a cerebral hemorrhage on the third day of his life. Nearly two months in a neonatal intensive care unit followed. When his parents finally brought Jesse home to their tiny apartment in Hoboken, N.J. (neither of their careers had yet taken off), they knew they were in for a struggle. The diagnosis was cerebral palsy, and the symptoms were overwhelming. Their child was a paraplegic. He might be mentally retarded. He suffered seizures. In every aspect of existence, he would require assistance.
The Coopers' battle took on a thrilling urgency when, as Jesse neared 3, they began to perceive that he was mentally intact. For all of his physical shortcomings, he had an attentive demeanor and expressive features. Although a neurologist informed the couple that their son would never be "intellectually normal," they disagreed. Vowed Leone: "He will learn.... Of this I am certain."
At 4, Jesse discovered how to say "yes" by making a kissing sound and "no" by clicking his tongue. At 7, he attended a computer class and technicians attached electrodes to his eyelids that enabled him to move a cursor on a screen: He beat his father in a video game. Soon thereafter, the Coopers adapted a Mac laptop to take advantage of their son's sole physical skill — he could grasp a toggle with one hand. With the aid of a special program that made it possible for him to scan the alphabet one letter at a time, Jesse learned to read. At 10, he wrote his first poem. Soon, he was studying Latin. "If we had stopped trying to teach Jesse," Leone writes, "the neurologist's dire prophecy would have been fulfilled. But the neurologist was right about one thing: Jesse wasn't 'intellectually normal.' He was intellectually superior."
Thanks to the Coopers' determination, Jesse enjoyed a fairly typical adolescence. He attended the prom, albeit in a wheelchair. He took up wind surfing. Like every teen, he acted out and got banished to his room. Through it all, however, Leone was filled with dread. The seizures wouldn't stop. She never doubted that one day she would find her boy dead in his bed. Yet she and her husband never ceased to fight for him.
"To behold Jesse," Leone asserts in a particularly beautiful passage, "to see the light shining forth from his helpless body was to understand that his helplessness gave him his greatest power — the power to teach others by drawing out the best in them."
Several months before his death, in his final school theme, Jesse observed: "Courage is an attribute that allows you to face difficulty and danger with firmness and without fear. Atticus Finch said on page 112 of 'To Kill a Mockingbird' that courage is 'knowing you're licked before you begin but you begin anyway and you see it through no matter what.' "
Jesse was not only describing himself but everyone else on Team Cooper. In her fine and moving book, Leone enables us to know a boy who was well worth knowing.
The review from the LA times
(although really, I would prefer to be with her when she makes her first kill)
ReplyDeleteLines like this, among other reasons, are why I love you. XD (Not a stalker, really! ...I'm too far away for that.)
And I'm really happy to hear how well Adventure Camp went. When I was in 6th grade I went to Outdoor Ed despite REALLY not wanting to; 12 years old and I cried all week because I wasn't ready to be away from my family for so long. Obviously I've improved a bit since then, but I'm almost 29 now and I still wish I had Schuyler's guts!
I'm so glad that Adventure Camp went well - whew!! Not a stalker either, :-), but gotta say I look forward to all of your updates of Schuyler. I feel like she's family.
ReplyDelete- Carol, mom of Megan, 4th grade, non-verbal, using a Dynavox V and iPod touch with Proloquo2go
Sigh.... as one who isn't obese and yet high risk for Type 2 and high bp... gotta love them genes, eh??.. Not casting stones.
ReplyDeleteJust hope you get it under control and feel better soon.
Glad she enjoyed camp.
I don't know if you will remember me but I wrote to you a while back about my son who has what your daughter does. It does not matter if you do or not but I felt compelled to reach out to you. I have not kept up with your blog since I originally wrote you but have thought of your daughter often. Today I decided to catch up on her. As I read your entries I was shocked at how hard you are on yourself and how depressed you seem. While I understand your fears and battles " I have all the same ones " I hope you can find some sort of outlet for yourself. Maybe that is what this blog does for you and you don't live your life this sad, I hope so. Our son is involved in miracle league (special needs baseball) and happy trails (horse riding therapy). I find these things very therapeutic for me (probably more so than for mason) because you see all these other parents and the issues that they have to deal with and realize that you don't have it so bad. Be patient our kids tend to do things on their own time, and I believe that they will do great things even if they will need our assistance for their whole lives. Mason attends a special day class and does go to a mainstream class for a given amount of time each week. ( this will be his first year doing this so I don't now what the schedule will be for sure yet. Our cousin teaches at his school and she has requested to be his mainstream teacher. We are very fortunate. ) I have been asked repeatedly over the corse of masons life if I think he will ever speak and I always say I don't know when but I have to believe he will eventually. Over the last 6 months he has slowly been becoming more and more understandable. Now I know he will speak, but I still worry how well and if it will ever be perfectly clear. No matter what progress our son makes we will always find something else to worry about. As I am sure you will to. Focus on the positive and don't abscess on the negative. Take care of yourself and your marriage because you can't take care of Schuyler if these things fall apart. Right now you are probably thinking no shit or I've heard all this before but it doesn't make it any less true. YOU are doing great!
ReplyDeleteBonnie
She looks so grown up in that picture.
ReplyDeleteBut I wasn't aware archery was performed with a guy's arm slung around one's shoulder. Is he her fiancee whom she met at camp? Are you pleased about your future son-in-law?
And don't worry about the no-homework thing; it's highly overrated.
Gosh you have been so down so much this past year. I no longer think I can read here.
ReplyDeleteI deal with many of the same issues regarding my own daughter's disabilities. And I can identify with much of what you write, where you come from. But I only have moments, okay sometimes days or weeks when things are really bad.
You are having much more than that, and it is apparent here. I really hope you are seeking professional help or some sort of guidance to deal with your fears and sadness. There are so many ways to look at things more positively, and not so doom and gloom.
Skyler may appreciate a new outlook and attitude too, and model that.
Loved your book, but she's getting older. . . and it is what it is. . . it's what we do with it and how we see it that matters and will last once you are gone.
Perhaps meeting with the mainstream teacher will help you to feel a bit better. Have you asked to meet with her soon? Waiting a few more weeks may be fine for parents of other kids, but you have a wonderful child who needs for you and the teacher to be in contact.
ReplyDeleteI hope everything works out well and you are able to feel better soon.
Congrats on surviving camp. I'm glad to hear that she loved it. I'm excited for you both.
ReplyDeleteOne thing to keep in mind... a lot of neuro-typical kids also have crap school years. I know the stakes are huge right now, and far higher for her than for most. But there are a lot of kids out there who have had one or two amazingly bad school years. My fifth grade year was one of those... and the following year things got a lot better and I made new (and better) friends and had a good year again. Certainly I hope Schuyler (and every other kid) can avoid the problem in the first place. But even if things don't go the way you want, it doesn't doom her to long-term scholastic misery.
I'm trying to figure out some way that we can have a Diabetes Adventure Camp. Fight off cupcakes in the wild! Slap down goody-goodies who make remarks when you ask for Splenda for your tea! Get extra exercise credit for kicking the butts of people who insist that you "take just one piece" of whatever carbstravaganza they're pushing! I mean, my lord, every day is a freakin' adventure with diabetes anyway. Might as well get a badge or something for it. (Maybe it should have our a1c on it. Mine's now 5.7 and I still feel like 6 feet of crap, so ...)
ReplyDeleteAnd speaking of badges, we send Best Kid Ever Invented badges to The Talented Miss Schuyler. We also send Very Most Best Parents badges to you guys. You *do* need some steenkin' batches. You also deserve them.
Believe it or not, Rob, you have some of what you might call "right wing nut-jobs" reading your blog, caring about the three of you (from a healthy distance), and rooting for your family.
ReplyDeleteI'm so sorry about your health issues and I know from first hand experience, that can be the cause of depression. Yes, like others have said here,you sound depressed.
So I'm hoping they can get your levels all straightened out so you can continue to be the husband your wife needs, and the father that Schuyler needs. They are both counting on you. Fathers, have a heavy load and it sounds like you carry it willingly.
You just sound tired and weary--like you need a good rest. We all know that is probably not possible in the near or distant future. So somehow, someway, you are going to have to reach down-deep (or ask for some help) and figure out how you can have a good attitude in this situation.
Your daughter is depending on you. She is watching your every move, she will mimic your behaviour and attitude. Taking into account that some can be mean and cruel, most people are going to respond to her by the way she behaves herself, disablity or not.
Yes, you all got a bad break and many of us feel for you. I'm hoping this blog is a good way for you to vent those emotions, that must be overwhelming. But, if you are presenting yourself to others out in the world (teachers, professionals, parents, students etc)in a sad-sack, woe-is-me manner----that is how you are going to be treated in return.
I did write this to say that agree with her or not (which I don't), Sarah Palin has her own issues going on with her family, a child that struggles. So I was surprised to read you being a bit rough on her. Giving you the benefit of the doubt, and taking it as a good-natured poke at someone on the other side of the fence.
Read your book, always reading your blog, Someone Who Cares
Wait, where did I say anything about "right wing nut jobs"? I mean, seriously, when was the last time I even brought up politics? I think you might be bringing your own issues to the table here. But thanks for your positive thoughts, anyway. They are appreciated.
ReplyDeletethree days away from home! my daughter is only eight months, and I can't imagine here leaving ever!
ReplyDelete