Saturday, April 20, 2013

Lessons I Have Learned As An #Autism Advocate

Yesterday, I learned some valuable lessons at Bubby's IEP meeting. Most not good, and some even carry with it an abrasive ability to leave me jaded, perhaps forever.

I learned that right isn't always right. This might seem like an odd statement. It's contradictory, to be sure.  What I mean by that is, logical sense, data, and proof doesn't always get things moving in a sensible direction. People may say, but the school has to do this, or that. Yes, in a perfect world, where people didn't come saddled with baggage, and ulterior motives when the moral, right, and data-driven initiative is revealed it is accepted as fact, because it is fact. I learned yesterday that I can sit in a room with nine people, and one person can effectively shut the whole meeting down with such intimidation, even with seasoned professionals involved.

I learned that some people will always see any deviation from the norm as wrong. 
Not necessarily wrong in the sense of bad, but wrong in the sense of needs to get fixed.

I learned that some people will never understand autism. They won't try.  They don't want to, and no matter how long we talk about it, their percepetion of my son will never change.


I learned that some people see my son as a burden. This was pretty much said outright. This was meant to instill shame into my mothering for "taxing" the school system with so much extra work. This tactic has not worked so far, and I don't know why this person seems to think it will work now.  Most mothers would have been a puddle of tears by the end of the meeting I had last night.

Not me. My voice may have raised, and I may have gotten snarky, but I did not cry. I was not sad. I was angry. Any tears that come from this situation will be tears of frustration, and despair.

I learned that sometimes, school staff really do take on the stance of us, against them. I always thought this was a bit of an overstatement by parents who don't always get how IEP meetings work, and such.  Last night was a clear us against them approach. It felt like they were protecting their resources from my son. Some of what I asked for made no sense to be denied, because it seemed it was denied on the basis of  them believing that he needed to know, or to learn certain things, because it's just how it's done.

I learned that Bubby is just as misunderstood as he was when he was a toddler. This hasn't changed, as I hoped it would.  I want so much for the world to know what a great person Bubby is. He is kind, gentle, organized, smart, funny, and responsible. He is (and was noted by more than one staff member at the meeting) very obedient, and wants to please others. It seems that the world is so bent on seeing his anxiety, and rigid behaviors as who he is. He doesn't get the chance to be seen for the person he is, because they're too busy trying to make him into something he isn't. I have to really stop, and wonder how long this can goon before I need to be done with this whole thing, and pull him out of that environment before it damages him more than it already has.

I have learned that when it comes to Bubby, I have to trust my own judgment, because 99% of those around me will always think I am overreacting when it comes to him. I live in regret all those times I never spoke up for him, that I didn't do what I felt was needed for him, from the doctor's office telling me he just has ADHD, or is a boy, and boys learn slowly to the school insisting he learn to be like his peers by doing this or that without the exceptions he needs.

17 comments:

  1. Oh man, shit things to learn... hugs Shawna

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  2. I wish these weren't lessons to learn. Some of the things that have been said to me by school admins without their batting an eye or Wagner music playing astonishes me.

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    1. I am sending strong thoughts to you as you advocate. School was okay for my son until he transitioned to high school. If I knew then what I know now (ah, hindsight, how I love you) I would have pushed for a different approach to schooling. We do the best we can, but sometimes the options are not a good fit. I've found that schools are about the budget. In this last year the school has been bending over backwards, but when I see parents I tell them not to give away ONE thing in an IEP. Because once you let a support go, it is impossible to get back.

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    2. I could see that. They are fighting me about adding services that should have been in place since the beginning. Things like his own para, and a set metric of how to reduce his workload based on a percentage per assignment, that isn't based on teacher discretion. I got a little of those things added, but now the whole thing as needed. They took bus service off, and when I tried to get it put back on a couple yrs ago it was like pulling teeth. If they're gonna hold their ground on something as inconsequential (and that costs the school literally no more money, or resources) as bus service that drops my son a few blocks from school on their way to drop off other kids, then getting other things added is almost an impossibility.

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  3. I relate to this. We had our bit with the school last week. Hugs to you and thank you for putting your feelings into words. It can be so difficult.

    Lori

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    1. Hope things improve on your end! Hugs to you too!

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  4. I'm sorry things went that way. As the year comes to an end, it's very similar for my little guy, too. I am so disappointed, I thought this school actually understood. I'm glad your son has such a strong advocate, I'm thinking about you guys.

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    1. Thinking of you, too. I hate that feeling of thinking they get it, and things are going well, to that realization that it certainly is not, and they had no intention of helping your child. They were just stringing us along so that they can do what they want, and look civil.

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  5. So sad and frustrating, but yes there is always that one person that just doesn't want to adapt to anything that is not "normal" for them. They make things hard if not impossible. Fortunately for me there was also that one person that always seemed to be on my side and take me aside and advise me on what I needed to ask for for my son as I was clueless back then. I would have thought things were different now but it seems not. :(

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    1. In some places it is different. My younger son goes to another school, because he needs to be in the self contained Autism only classroom, and that school operates on a totally different inclusion model that is truly inclusive, and accepting. I KNOW Bubby's school could adapt to be more like Bean's school with minimal effort. All it would cost them is a change in attitude.

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  6. My mom works for the school district as a guidance counselor, and even she says that they do as much as they can to keep as many kids as possible off of IEP's. I don't understand how or why we can't work together, why does it all have to be so freaking difficult? I'm very sorry you had such a hard day Shawna, I've been thinking about you all day today, believe it or not, and I'm sending prayers for peace your way!

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    1. Awww. thank you! I am so lucky to have so many supportive friends to turn to. I wonder what mothers like us did before the internet? Must have been awful lonely.

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  7. Reading this brought back sad memories. When my mom used to fight for my brothers rights, I would sit back quietly assuming that my mom must be wrong and crazy since that's what the "professionals" kept saying. In my mom's case, and maybe even in yours, I can't help but wonder if her own autism helped her to see the truth clearly, while everyone else sat around throwing out words like 'burden' and 'institution' and 'be realistic' blah, blah, blah... yucky, yucky, yucky... not that you have to be autistic to insist on and see fairness clearly. Just that I didn't, and I wish I had, so I like the idea of blaming my allistic brain!

    Thank-you for writing this. I hope you don't mind, but I would like to share the piece I wrote about my own guilt and how I learned to see that my mom was not only right, but strong and beautiful for holding onto that knowledge in the face of such adversity.

    Like you! Your children are very lucky!
    http://www.opednews.com/articles/Because-my-Mom-was-Autisti-by-Tsara-Shelton-120520-981.html

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    1. Thank you so much for offering your perspective. I loved that piece that you wrote. While, I do differ in the way that i believe that one never really outgrows ASD, we certainly grow, and learn.

      I suppose that maybe, I am perseverating on fairness. Not quite in the way your mother did, but yes it is a special interest of mine. It's really confusing to me as to why the school can't adapt things for my son that would really not be all that hard for them to do. As I said on my page the other day, with Beans, everyone acts as if I am under-reacting. I am not doing therapy outside of school, or making my life about treating his very severe autism. My approach is much different than the average mother, and I see him different than the average mother. With Bubby, because of his autism affecting him much more mildly, and unoticeably, people assume he does not need any help, or accommodations when he does. They think I coddle him, and hold him back with my unrealistic ideas of how the world should bend to his needs. What they don't understand is that I was once him, and I know how hard he works everyday to just keep up as much as he does. The way they're talking to him now will stick with him forever. I know that invalidating his whole experience by constantly telling him his struggles don't exist is very damaging.

      I think that you brought up so many good points that I may have to make another blog post! lol Lots of good points to respond to, but I will say, yes... my autism has left me with the social politics part taken out of the equation. I understand how to be more socially appropriate than maybe your mother was, but I still can't stand the whole social climate of how nonsensically things are done.

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    2. I look forward to that possible other blog post!!

      You really, really do seem to know your children well. I love that! I think it's such an important thing for our children to know that we really see them. Any mistakes we make, or our kids make, or the school makes (and they make so very many!!!) can be learned from and taught to, if we are willing to truly see our kids without the clutter of worrying about what other people are saying, or what they think. Helping our kids feel less alone isn't easy--especially the teenagers!!-- but really knowing them helps. It helps a lot! I hope that makes sense?

      And just a quick note: my mom didn't outgrow autism. With neurofeedback she has been able to change the way her brain works just enough that she no longer qualifies as 'autistic'. She no longer sees sound, and her face blindness is no longer so intense that she won't recognize her husband. Also, her interests have broadened and her perseverations lessened, and her sensory issues are no longer true challenges... to the point where she is now quirky and intense, but not challenged enough for an autism diagnosis.

      I know this is a controversial and emotional issue... and I absolutely respect everyone's right to choose for themselves whether or not that means a person can actually be no longer on the spectrum or not. I only bring it up because I didn't want to make it sound as though she just grew out of it--quite the contrary!! It was years and years of struggle and hurt and looking for and finally finding things that could help balance her brain and make her feel comfortable in her skin, and in her environment.

      Huge hugs to you!! I hope you've had a lovely Sunday!!

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