How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Sunday, August 22, 2010

Our School Decision, and Resources for Yours


A few months ago I shared the struggle we went through in our attempts to find a school that is worthy of our little guy, Simon. I use that phrase "worthy of" intentionally. I am tired of the mentality that leaves us feeling our kids need to be good enough for the school, and I think that mentality has played a big part in making the school "system" so rigid and painful for kids with differences like ours. Time to expect the school to be good enough for our kids.

As you might expect, this is a rather tall order, but I'm just not willing to settle where my son's education - and self-esteem - are concerned. None of us should.

After much consideration, and a lot of self-doubt, we decided to give Simon's old school another chance. Here's why:

1. Our other options were limited - the private school we so hoped would become Simon's new school, changed principals immediately (days) before Simon's application was to be reviewed, and the incoming principal is apparently not "keen" on having more autistic kids in their school. Which is such a shame, because the school was becoming a real model of meaningful inclusion, thanks mainly to the outgoing principal. All the best schools outside of our division were full, no further applications were being considered. And while we were given the opportunity to explore other public schools in our division (thanks to yet another letter writing campaign on our part, after we were told the deadline had passed) we were no more confident in any of them, than we were in Simon's old school.

2. The difference between taking a chance on other schools in our division, and taking a chance on returning to Simon's old school, is that Simon has a number of good buddies at his old school who we made sure to have regular playdates with during the past year of homeschooling. Many of the challenges stemming from autism in a neurotypical world, are social. And when I consider how hard it is for Simon to be in a classroom in the first place (meeting unreasonable expectations and dealing with sensory overload), how much harder would that become in an environment where he didn't even have a single friend and had to start from scratch making social connections?

3. Finally, the only reason we even considered Simon's old school is because they ousted not one, not two, but THREE staff associated with the trouble he had last year. To me that said a) they took our situation seriously and weren't going to tolerate it, and b) the environment is a safer place for Simon now.

So... here we are planning for Simon to return to school. If I had my way, I have to admit I would keep him home. This past year of homeschooling has been more of a blessing than I could have ever anticipated. We are so much closer as a family, I have such a better sense of who I am, who Simon is and what he really needs. I feel much more empowered to be his advocate, because I really "get" him.

But Simon REALLY wants to go back into a classroom full of his friends. And I don't think at this stage (Grade 2) that I can deprive him of the chance to try. Of course the big unknown is not how hard Simon will try - I can guarantee you he will try his hardest because I've seen how far he's come in the past year; the big unkown  is how hard the school will try.

I have resigned myself to the possibility that this coming year may be a complete write-off for Simon academically. I have very little confidence in the teacher, having met her before school started, and unfortunately the principal sounded MUCH different in meetings where the division rep was present (ie. when someone who's job it is to enforce meaningful inclusion is in the room) compared to when they were absent. The principal's tone changed markedly and shifted away from discussions of how to accommodate Simon, to discussions of how Simon needs to find ways to assimilate. Hmmmm. I can deal with that - if it is a starting point for a journey in which the school and it's staff are open to working with us to gradually learn more about autism, deepen their respect for Simon as an idividual, and come to accept his differences as bringing their own gifts, rather than bringing a need for assimilation.

Only time will tell how the school handles Simon. Right now, their focus is entirely on Simon growing into their vision of inclusion. The test of whether we stay in this school beyond this coming year, will be whether their vision of inclusion grows to accomodate Simon. If I see progress and growth in them, then we will continue to work with the system. If not, then Simon deserves better, and we will have to find it elsewhere.


We have arranged to start with half-days and proceed from there. How quickly - or even if - we move to full days depends entirely on how Simon is feeling about himself and what kind of relationship the school fosters with us. Academically, we have plans for homseschool lessons during the part of the day he is not in school and over the weekends (which are good for Simon anyhow, since he really needs a consistent routine) and for exploring a math tutor from the University to foster his gifts in that subject (which will also mean I will be asking to have Simon pulled out of math class for resource work instead).

I will continue posting homeschool info and resources, especially from a sensory homeschool perspective. And for those of you who will be embarking on a year of school outside your home, I thought I would share some of the resources we are using to ensure three key areas of preparation:

1) the IEP (Individualized Education Plan) process:


http://www.wrongplanet.net/postt46527.html

2) modifications needed to a child's learning environment:


http://www.hartleysboys.com/2010/07/creating-sensory-friendly-classroom.html?

http://www.hartleysboys.com/p/sensory-accommodation-suggestions_23.html

3) materials we can supply to the school to improve their understanding of our son:

http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html

A mini-library for the classroom comprised of Can I Tell You About Aspergers?;
All Cats Have Aspergers; This is Gabriel Making Sense of School; I'm Not Weird I Have SPD; Sensitive Sam; Squirmy Wormy (all available on http://www.amazon.com/)

Photocopied excerpts from Raising a Sensory Smart Child and The Out of Sync Child (also available on http://www.amazon.com/), since it's unreasonable to expect the teacher to read those books in their entirety, but I want her to read certain key parts.


4) Tools for Sensory Success (vetted through the teacher in advance):
  • sit fitter (wiggle seat)
  • fidget toys
  • chewlery
  • gum
  • a band that wraps around Simon's chair legs so he can bounce his legs while working
  • mp3 - just for school - with playlist suitable for school to block out extraneous noise
  • tennis balls on chair leg bottoms to reduce all that screeching when chairs are moved
I would also encourage you to look up the inclusion policies or special education policies in your province or state. They are the standards your school is legally bound to uphold but - you are the police. I know most of you are not here in Manitoba but these are our inclusion policies: 
http://www.edu.gov.mb.ca/k12/specedu/aep/inclusion.html
http://www.edu.gov.mb.ca/k12/specedu/aep/p_f_c.html
http://www.edu.gov.mb.ca/k12/specedu/aep/regulations.html

And finally, some time ago I read this excellent advice for beginning the year with a child who has special needs:

At the beginning of the year, discuss with the teacher your desire to: a) have them as the single point of contact for regular feedback between home and school (this means you will not be getting one call from the music teacher, one from the phys. ed teacher, one from the principal, etc., but rather one single call from the teacher when necessary; b) have regular meetings set up on a pre-arranged schedule - depending on your child's needs/challenges this may be once a week, twice a month, once a month, etc. (this helps prevent those dreaded phone calls from the teacher every day or every few days - ask that all issues that do not need immediate resolution be dealt with at these regular meetings).

I hope these resources will help you if you're feeling somewhat (or overwhelmingly) unprepared for the battle ahead. I sit here this evening, with a mountain of work ahead of me to sculpt my son's school into an institution of acceptance and accommodation, with the challenge of educating the educators on what meaningful inclusion really is. And I am left with a feeling that is too close to resentment, because of that word: battle. While so many of us are left feeling day after day that we are losing the battle with the education system, I do in my heart believe, we will win the war.

May the force be with you, my magical little man.  

15 comments:

  1. Great information.

    My son wants to get back to school soon too. I've been told I might be in for a fight, so I'm pulling on my armour, full metal jacket and picking up my light sabre.

    grraaagghhh!

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  2. All the best Caitlin. I hope it works out and the school grows with you. It's a shame they kept the principal - or did they?

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  3. Oh Caitlin, you are working so hard to help your little guy succeed! I hope that all goes according to plan.
    My son is a star wars kind of guy too. I'm expected to make a vader cake this year. Yikes!

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  4. Thank you for posting such great resources!

    We are going back to public school again this year too, and are hopeful that with a new, more experienced teacher and aide, things will go better for our son, who also has Aspergers.

    We have tried private, public, part-time public and homeschooling with varying results, but like your son, last year he wanted to try school again for second grade, so we did. I'll have to say that he is happier in school this time than he was during kindergarten; his anxiety is gone and he is trying to make friends.

    He knows his diagnosis now, and has made several friends on the Spectrum and even has a child with HFA in his class, so the "mystery" of some of that has been eliminated. We also have to provide more academic challenge at home because our school, like your school, only has resources to focus on behavior and social skills for the most part. Our son's sensory issues are such that focusing on truly challenging academic work is almost impossible in a large classroom setting anyway.

    I am trying to take all this one day at a time and be patient with the whole process. This is hard for me!

    I wish you and Simon all the best for this school year!

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  5. We are starting second grade this year also-- with a new teacher, one who I had wished for during our kinder year-- she is eager to have Shane in her class-- But she is also new to teaching second grade-- . We are also starting out our school year with Shane going part days-- and then fasing into full days. I am trying to be patiently hopefull. :)

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  6. Thank you so much for all these books and resources. My son was only recently diagnosed, but when I read about your arsenal of fidgets and chair adaptations I got SO INSPIRED. I've been fretting about my son's first IEP meeting of the year (we're new to the whole IEP process) and I've pulled out his IEP and am making notes on each and every one of these areas. I've wondered, what are we going to do to address sensory issues not just in pull-outs but in the classroom? What are we going to do about his need to move? THIS IS SO HELPFUL. Thank you, so much for all your hard work and sharing the fruits of your labors.

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  7. Best of luck with back to school! Eli starts Kindergarten on 9/3. His anxiety is building as is mine. This part is so hard! It's nice to know there are others out there. Thanks for sharing all of your great thoughts!

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  8. I hope all goes well. I really like your attitude about the school needing to be good enough for your son. I need to switch my attitude. I am so afraid of confrontation sometimes that I lose sight of the fact that I need to make demands sometimes....I'm working on it.

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  9. Thank you for writing this and posting all those great links. I recently added you to my reader, though I don't think I've commented before, and I have a very important IEP meeting tomorrow-wish I had more time now!

    I hope that this school year goes better than expected (for both our boys, and us mamas too!)

    Thanks again.

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  10. therocchronicles - since you have your meeting tomorrow I wanted to address your comment first: bear in mind that (unless your IEP rules are different than ours) you do NOT HAVE TO SIGN your IEP while you are in that meeting. Take it home, review it in relation to the links I posted, revise it, and bring it back. You cannot be bullied into agreeing to an IEP that you have not had adequate time to review.

    Lulu - love your imagery!

    Father of Four - it was actually the principal who we never had an issue with, and she appears to be the reason the 3 staff were let go (or transferred, or put on leave etc). How are things going on your front?

    Lora, if you need Star Wars Party ideas, email me (contact button at the top of the blog) - Simon has an annual Star Wars party so needless to say, I consider myself an expert (an easy light sabre cake, that's great for little kids who don't eat much cake, is made out of cupcakes arranged in a line like a light sabre with m&m's for buttons - I have a link if you want it).

    Elizabeth, your comment gave me a bit of a mini-epiphany... all along I have been steaming full force ahead thinking school was all or nothing (all=social+academics) but... perhaps I need to rethink that at least in elementary school. Perhaps I need a 2 point plan that targets social wellbeing in the classroom but supplements with academic brain food outside the classroom - not just for this year (which I was prepared for) but in an ongoing fashion. Hmmmm. Maybe by easing up on the pressure for Simon to soak up learning in a classroom for the next few years (a place that makes it nearly impossible for him to focus), maybe by doing that we can emphasize the social/emotional at school, and work on learning what he actually WANTS to learn outside of school. I've only considered that as an annoying patch-job to make up for the system's inadequacies but... I think it may be doable in a more positive, long-term model as well. Thanks for your thoughtful comments, hope to see more of them in the future!

    Stacey, I hope you have great success with the new teacher! Keep us posted!

    RR, I'm so, so glad you found this post helpful. There are many, MANY accommodations that can be made for our kids. It just takes the emotional fortitude to fight for it :)

    Brotherly Love - oh how I feel that anxiety too. It's messing with my health to some extent too, so I've really got to get it under control. Not to mention, I'm sure Simon picks up on it.

    Patty, I know you will do what's right for your son, confrontation or not. And to some extent, a healthy avoidance of confrontation can play to your benefit if it means you don't go marching in with a list of demands, and instead walk in with a more subtle strategy :)

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  11. Thank you, thank you, thank you for this.
    I just got in a "battle" yesterday with a "friend" on my facebook about how she thought I was already setting Jayden up for failure by being prepared.

    We homeschooled Jayden last year because there was just no way he was ready to be in a school setting. This year we are trying (depending on the schools response) to put him into kindergarten instead of first grade. The school thus far has not seemed very receptive of us putting him in kindergarten.
    However, here, it is full day kindergarten 2-3 days a week. Mon & Friday and very other Wed. I am not sure how Jayden is going to do with this. First of all going straight to full day and then not being on a regular schedule.
    Thank you for all the great resources. I am definitely going to be needing them as I start on this long journey ahead.

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  12. I admire your ability to homeschool your child. I don't know if I could, but I think if put in similar circumstances, I would find the strength to. I hope that you are able to get what you need for your little guy and know that you will fight for it if you don't. :)

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  13. Missy are you home with him on the days he will not have school? If so, you can try to mimic the school's schedule as much as possible to help with transition issues. And that misconception your friend has about setting kids up for failure by accommodating their needs is still far too prevalent. Resist the temptation to lash out or recoil, use the opportunity to share your knowledge and spread awareness. Not everyone will wise enough to 'get' it, but many will.

    Ninja, I thought I was off my rocker when I started contemplating this last year. But I know you well enough from your blog to say unequivocally that yes, if Nathan was feeling about himself the way Simon was last year, you would not only do it, but you would ROCK at it! Because you are a creative person, and they make the BEST homeschoolers!

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  14. Coming in with a late comment just to say, this was a worthy read. :) Exactly the question to ask - is the school worthy of your child? Such strong evidence for the love and acceptance of a child. Barbara

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  15. Just saw your comment - Thanks Barbara, that's a lovely thing to say :)

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