Fortius


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We interrupt these IDEA/IEP/Special Ed Follies to take a brief walk down memory lane and, specifically, to Charlie's first school. That's him, with an aide named Pat, going into an elementary school in Kirkwood, Missouri. Charlie attended a preschool class for kids with and without disabilities in the spring of 2000. Two of our home ABA therapists alternated as his aides. Charlie was 4 years old and he was pretty challenged to do everything, from sitting in a circle to the craft activities to following the other kids in an obstacle course.

School has never been easy for Charlie. Counting that first Missouri elementary school (off of Manchester Boulevard), he's been in (if I'm counting right) eight schools. He's technically in the 7th grade, meaning that he's been in a different school almost every year of his education (all but one have been public and, except for that first Missouri school, all have been in New Jersey). I guess you could say, it hasn't been the norm that Charlie has been completely totally settled in any school. So our current situation is not at all unfamiliar, though if you had told me this in 2000 as I stoof on the sidewalk waving bye to Charlie and so thrilled to see him turning around to look back at me, I would have told you, I don't think I have the strength. 

For here are Jim and I, going at it yet again for Charlie, though now in the knowledge that this time ain't gonna be the last, oh no. 

(And, it just occurred to me yesterday that, between the two of us, we're teaching 9 college classes with 9 preparations. Good thing I've taught Latin so often I could start teaching it at any waking moment, kid you not.)

Citius, altius, fortius. "Swifter, higher, stronger." Those Latin words are the motto for the modern Olympics and I was thinking about them last night while writing something up for one of my own students. When it comes to Charlie's education, it often seems that things have changed more and more slowly rather than more quickly, and that his learning has proceeded in balky starts and stops. (All very fine; learning is learning, at any speed.) And, too, it's more often felt that there's as many and more low points than high points and that things (like Charlie's experience at his current school) too often settle into a downward trend, despite Jim's and my, and Charlie's, every efforts. 

Fortius, though, means not only "stronger," but "with more bravery, with more courage," and, whatever is going on or not, Charlie continues to show a lot of heart. A friend asked me how he even tolerates wearing the helmet and I honestly don't know. Despite daily scrubbing, the inside has gotten stained and molded. We check Charlie's scalp daily: He's gotten patches of acne on the skin that comes into contact with the helmet. Noting that football players get the same rashes and skin irritations from prolonged wearing of their helmet, Charlie's pediatrician has told us, "he'll keep getting those as long as wears it."

 Maybe you're already hearing the words: What doesn't kill you makes you stronger. 

Makes you fortius, buttressed by too many good, by so many great memories, of life with our most excellent boy.

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Comments
22 Responses to “Fortius”
  1. Jasmine says:

    Awww, how adorable is he!!!
    Your one-line description of Charlie at age 4 sounds very familiar to me. Will we travel on a journey not too different from yours? Really, I do not think I have anywhere near the strength that you have.
    Citius, altius, fortius … Citius, altius, fortius …

  2. Emily says:

    He is sooooo cute. He’s got that big head, so familiar. And a HUGE backpack! So sweet.
    Fortitude, fortify, and sometimes, to shift roots, fortuitous. Look for those open windows and doors. There may be more than one way. Wishing you the best this week, whatever the best turns out to be.

  3. Evan Tasch says:

    Hope you can hear us cheering you on!!!

  4. karen d says:

    I look forward to the day when you, Jim, and Charlie can destroy the helmet. Thinking of you lots. xoxo

  5. Club 166 says:

    What a cute little guy he was! Now he’s just a handsome young man.
    That pic was shot on film, wasn’t it? Looks like Kodachrome. I miss film (except for the cost and the waiting for it to get developed thing).
    Best wishes for this week. It is certain to make you stronger.
    Joe

  6. Hai Dang says:

    I know that my sons (with autism) and most kids and adults (NT) can not and will not wear a helmet eight hours a day everyday. I know I can’t. Your story of Charlie at four years old is similar to my story of my three boys at the same age when they first entered the school systems. My oldest son began high school and my youngest son began kindergarten this school year. Like you, in 1998 when my oldest son entered preschool, if someone told me about the things I would have to deal with the school systems the last 11 years, I would told them I do not have the strength to do it. We did it somehow. I really like the word Fortius. It can be used to describe attitudes of parents and especially children with autism.
    “What doesn’t kill you makes you stronger.”

  7. Regina says:

    “if someone told me about the things I would have to deal with the school systems the last 11 years, I would told them I do not have the strength to do it.”
    Yeah, but isn’t it a little bit indicting that so many (too often) have to go through the additional stressors thrown up by the very systems that are being funded, posited and touted to provide resource and education (often, ironically, “second to none”, “best practices”, etc.), or take cold comfort of being “made stronger” by running additional bureaucratic gauntlets. Personally, I’ve found the strain of dealing with systems and what the system “needs” to be at times far more crazy-making than what my child has dished out.
    I’ll take the “Citius, altius”, and think about the “fortius”.
    Take care.

  8. Rose says:

    I loved those days…although it was hell figuring out the path to follow at times. Charlie was so cute, and so was my little Ben!
    I always hunkered down and crashed through…never gave up…tried EVERYTHING I thought would help. If you weren’t with me, you were against me.
    I’m a little more relaxed these days! It’s a lot more fun now, too!
    My new motto?
    1)don’t sweat the small stuff
    2) it’s all small stuff!!!
    Sounds like the school takes itself WAAAYYY too seriously. I won’t say the words that comes to mind.
    If you could put them in your shoes on Friday…who of them would want their child or themselves in a helmet 12 hours? Raise your hands, now…

  9. Rose says:

    I loved those days…although it was hell figuring out the path to follow at times. Charlie was so cute, and so was my little Ben!
    I always hunkered down and crashed through…never gave up…tried EVERYTHING I thought would help. If you weren’t with me, you were against me.
    I’m a little more relaxed these days! It’s a lot more fun now, too!
    My new motto?
    1)don’t sweat the small stuff
    2) it’s all small stuff!!!
    Sounds like the school takes itself WAAAYYY too seriously. I won’t say the words that comes to mind.
    If you could put them in your shoes on Friday…who of them would want their child or themselves in a helmet 12 hours? Raise your hands, now…

  10. autismvox says:

    @Rose,”2) it’s small stuff!!!”
    Yes it is!
    @club166, yes, the photo was an actual real photo shot with actual real film—-those were the days!
    @Regina, you’re too right. Life with Charlie is a walk in the park compared with the monkey business dished out to us.

  11. ange says:

    I wish you much luck on Friday. I couldn’t do it anymore…just couldn’t do it. And when the seclusion room stuff broke out here last spring, I think the trust (that hadn’t been there for years) was 100% not reparable. It began damaging my relationship with my children…too much time spent fighting the system, not enough time spent loving them. ANd I began to see my children through THEIR eyes, which was unacceptable. Some days I feel like the school “broke me” but usually I think I am doing what is best for my family (homeschooling right now).
    Much love and preservation!

  12. ange says:

    I wish you much luck on Friday. I couldn’t do it anymore…just couldn’t do it. And when the seclusion room stuff broke out here last spring, I think the trust (that hadn’t been there for years) was 100% not reparable. It began damaging my relationship with my children…too much time spent fighting the system, not enough time spent loving them. ANd I began to see my children through THEIR eyes, which was unacceptable. Some days I feel like the school “broke me” but usually I think I am doing what is best for my family (homeschooling right now).
    Much love and preservation!

  13. ange says:

    Um, I meant “perseverance”, I think….

  14. ange says:

    Um, I meant “perseverance”, I think….

  15. autismvox says:

    @Jasmine, So much has happened since when Charlie was little, much that has been difficult, but also (and even more) much that has been fabulous and good. I wouldn’t want to have missed out on any of it!
    @ange, I’ve been trying to focus mostly on the loving part. Charlie needs us much more than we need to spar with those who we’ve concerns about—-perseverance, yes, and some self-presevation too…

  16. Hai Dang says:

    @Regina, I agree with you “the system… be at times far more crazy-making” than dealing with my old children. It was the way I said “What doesn’t kill you makes you stronger” created a misunderstanding on my post. I did not mean for us to accept whatever the “system” wants or pushes on our children. On the contrary, I believe we should be stronger in voicing our concerns and challenging teachers, administrators on educational issues for our children. Being a father and a strong advocate for my children, I have always been vocal on all educational issues for my children. I realize that learning is taking place more than the four walls in the school classroom. I was so impressed by the fact that Charlie has great times outside of the classrooms. At the end of the day, spending quality times with our children is more important than anything else. Yes, I have become stronger, but if you ask specific special education teachers or administrators you would heard many other “nasty” names used for me. Oh well, I am not here being nice guy but just doing my parenting job.

  17. feebee says:

    Could he wear a different helmet? Like Motherofshrek’s son’s helmet? That thing Charlie has is just awful.

  18. Regina says:

    @Hai Dang
    I *think* that I did follow what you said, and my statement was not an indictment of your efforts, but rather of systematic problems of needing to challenge teachers, administrators, etc. and having to end up being called “nasty names”, in addition of the inherent challenges of meeting the needs of a child with special challenges and skills. (I contrast with our experience with our older child in regular ed in which giving the “best” to the students was pretty much a given and everyone more often than not was pulling on the same end of the rope). I realize that we are on a continuum to establish fair treatment and rights for our children and those with differences – ‘just some days I wish we were just a little further along.
    I take my hat off to your advocacy and doing what you need to do to obtain a meaningful education for your children. Thank you for sharing your experience and thoughts.

  19. Regina says:

    @Hai Dang
    I *think* that I did follow what you said, and my statement was not an indictment of your efforts, but rather of systematic problems of needing to challenge teachers, administrators, etc. and having to end up being called “nasty names”, in addition of the inherent challenges of meeting the needs of a child with special challenges and skills. (I contrast with our experience with our older child in regular ed in which giving the “best” to the students was pretty much a given and everyone more often than not was pulling on the same end of the rope). I realize that we are on a continuum to establish fair treatment and rights for our children and those with differences – ‘just some days I wish we were just a little further along.
    I take my hat off to your advocacy and doing what you need to do to obtain a meaningful education for your children. Thank you for sharing your experience and thoughts.

  20. autismvox says:

    @feebee, I don’t know about a different helmet, as he does not need it at home and elsewhere. When the helmet was first used on Charlie in February, the district said that they were getting one with detachable pieces—the face guard was to be removed first and then the rest. But this hasn’t happened.

  21. autismvox says:

    @feebee, I don’t know about a different helmet, as he does not need it at home and elsewhere. When the helmet was first used on Charlie in February, the district said that they were getting one with detachable pieces—the face guard was to be removed first and then the rest. But this hasn’t happened.

  22. Hai Dang says:

    @Regina
    I am glad to hear the things I said not causing any misunderstandings. 🙂 English is my second language, and I, at times, wrote things difference than I intended. I like your statement that “we are on a continuum to establish fair treatment and rights for our children and those with differences.” I want “fair treatment and rights” for my children and all children with disabilities. I feel if we let one child with disabilities being mistreated we fail all children. After all these years, it is not getting easier in fighting for fair treatment and rights with school districts.

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