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And just like that, I am angry again

6 Oct

Today, I read something and it got my back up.  I won’t go into details of what or where, except that it related to Maura’s old school in Michigan.

And suddenly, just like that, all that old anger lit up.

What’s funny is, while I was living it, I don’t think I was feeling this sort of anger over it all.  I was probably too busy walking that fine line of making sure I only cast blame where blame was due.  There were some wonderful teachers, aides and therapists, who I completely trusted and were grateful for.  They did all they could to help my child out.  Our main problem lay with not the staff who actually worked with my child, but the administration who made final calls on stuff.

I guess I also thought at the time that well, that’s just how things are in special education.  You meet great teachers or aides or therapists, but there will be fights and battles.  You read about them all the time in support group pages and on Facebook.  Though even then, I didn’t think IEP’s should cause a person like me to have to do the ugly cry two years in a row because I knew they were shortchanging Maura.

Then we moved to Ireland, where I had a completely different experience, where schools were upfront and honest and straight with me.  Where Maura was able to get into a program suited for her, where everyone was trained on what to do if she had a seizure, where I didn’t have to ask for a daily journal home to know what she did – those came standard.  Leaving that school was the scariest part of the move.

We got here and I got prepared to Do Battle.  Ducks in row, brushing up on IEP laws, girding loins, and all that.  Only to walk into a room full of people who were friendly and willing to listen.  It threw me off, and I babbled, I can admit that now.  Then I started meeting with all the people who’d be working with Maura, all just lovely and stating all that Maura will need and “Why don’t we just start her right off in the Life Skills group if you feel that’s where she belongs.” and “Let’s see if we can’t get her an iPad for communication, she’s really taking to it.”

It is more than I hoped honestly.

I guess now, when references to Maura’s Michigan school now come up, it makes me angrier because I can fully see how the administration short-changed her.  At the time, I had the feeling that they didn’t see Maura as “worthy” of the investment.   Every time I tried to get Maura “more” (and by “more”, I mean stuff they gave to other kids and cost them nothing, like a full-fledged medical emergency plan in case she had a seizure, like they had in place for other students) I was met with balking and loopholes being pointed out.   Like with assistive technology, I was hoping for something that could help Maura write out words she knew, as she still cannot write her name even.  I was told that no, the only assistive technology she could be approved for was a communication device.  Fine, she’s fabulous with the iPad!  Nope – they only had X amounts of iPads, and she couldn’t have one of them.  (Eventually they did allow us to “borrow” one from the preschool program for afternoons.)  The bitter irony of that whole situation?  After we left, they got a grant that was to be used only for technology, so they bought every kid in the district an iPad.

<headthunk>

Here, it was “We tried this out on the iPad, as we saw she had success with a communication device at her Irish school.  Now we are going to try to get her one of her own to bring home, that can be used for communication.”

Just like that.

Without any begging, pleading, or crying, and while Maura was sitting there with her own iPad watching a movie.

How much of my time was wasted back then, going back and forth with administrators in attempts to get my daughter what she needed, what was in the IEP,  apologizing to the staff who watched me turn into That Mom over the issues?  Burning up friends ears with the injustices of it all?  All while trying to play it calm with these people because the moment you start yelling, you’re deemed “difficult” and you are forever written off.

How much of Maura’s time was wasted because she wasn’t seen as “worthy” of the investment?

I guess that’s it – I felt like in a way, we were just a big pain in the ass who wouldn’t go quietly away and be happy with what we were given grudgingly by the school administration.  We were a headache, as we were smart enough to know we were getting screwed over and did our own research, and knew how to play the game (you don’t come from families of teachers and lawyers and not learn how to play the game well).  We were worthy advocates for our daughter, to the point that I had two different (now retired) staff members tell me I should become one professionally, I should start a group, I could be the voice for the other parents.

Instead, we moved.  And I still feel a sense of guilt for leaving others behind.

Good God, it sounds like war, doesn’t it?

It wasn’t the happiest chapter of my life, that time in that school district.  I think I spent a lot of time focusing on the positives (the teachers and staff who were awesome with Maura) to keep myself somewhat sane.  I did what I needed to do to get through that situation.  In that whole “How do you ever manage?” realm, it was a “You just deal with it” situation.

I dealt with it.

But the old feelings can still rise up, especially knowing some of the key players that made life so difficult for us are still there.  One glowing reference to the place and I’m suddenly staring at my computer screen with a cross-eyed red glaze.

I can hear all the positive thinkers going “It’s in the past, let it go.”  And I should.  But I guess I’m still processing it all.  When I was living it, I was too busy trying to keep up with everything to stop and process.  Then we moved and I was too busy to go back there.  Now we’ve moved back to the states, and my experience here has been so overwhelmingly positive, that it leaves no excuse for how we were treated back in Michigan by those administrators.

We were treated poorly.  There’s no getting around it.  And the people who treated us poorly are still working there.

There’s more, but then it’ll get complicated.  My one bit that I hope to leave people with, especially parents of special ed students – help each other.  Don’t just make it good for your kid, make it a positive experience for all the kids.  If you see a parent struggling, be their friend, help them out, share advice, help them find a solution.  Don’t stand by the wayside and do nothing.  If you do, then you’re just part of the problem.   Stand together to make sure special education is working for everyone.

 

 

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12 Responses to “And just like that, I am angry again”

  1. Gayle Hernandez October 6, 2013 at 7:10 pm #

    As a staff person who works with children in Early Intervention and Early Childhood and a parent of a son with Asperger’s who struggled all the way through school, I feel your anger and I acknowledge it! I hope that parents who feel like “that parent” keep being “that parent” and advocating for their child/ren. Some of us who provide individual services are also frustrated with the same system that you’re frustrated with. I’m good friends with many parents who were “that” parent when they were in the program that I worked in–we are still in contact and still “advocating loudly” (read “fighting”) for our children. Keep it up. And keep posting about it, and keep posting your humor–I appreciate both!

  2. Joan T Warren October 6, 2013 at 7:27 pm #

    So well articulated, it made me want to give you a hug! Aware that too many parents end up in tears over these meetings, I think your ability to go back and process now is healthy. Sometimes it takes being in a truly safe place, and experiencing being treated right, before we are able to fully grasp what happened in the past and view it in proper perspective. Good for you for hanging in there, and wanting to reach out to help others. I will help with that by sharing your post on my OT Facebook page. Enjoy your new world!

    • phoebz4 October 6, 2013 at 7:29 pm #

      thank you!

  3. Cheryl @ Stop The Stigma October 6, 2013 at 10:05 pm #

    You are still my hero and my first blogger who motivated me to blog and get on my own soap box. Your efforts help Maura but so many other parents and children who read you hear and on facebook. You rock, Phoebz4!!!

    • phoebz4 October 6, 2013 at 10:07 pm #

      aw thanks!

      • Cheryl @ Stop The Stigma October 6, 2013 at 10:16 pm #

        Well, the fact that you were in Ireland helped too since my roots are from southern Ireland…and well, Okay, Michigan is real close to Canada too 😉

      • phoebz4 October 6, 2013 at 10:48 pm #

        we had Tim Horton’s in Michigan, it’s practically Canada Lite – lol!

      • Cheryl @ Stop The Stigma October 6, 2013 at 11:53 pm #

        True!!!

  4. Cheryl @ Stop The Stigma October 6, 2013 at 10:08 pm #

    Reblogged this on Cher Shares and commented:
    An amazing mom that I admire has wise words to share for parents of special ed students…be part of the change for your child!

  5. myhealthychef October 7, 2013 at 9:56 pm #

    Words cannot express how happy I am for you and Maura that her new school is being good to her and is not another Michigan. I have no idea anymore how I stumbled upon your blog long, long ago but I am so glad that I did. You write about your problems so well and make me want to fight the fight with you. Speaking of writing… I believe you mentioned one day writing a book? Get on it girl, I’ll buy it.

    • phoebz4 October 7, 2013 at 11:36 pm #

      LOL – yeah, I keep saying I’m going to write a whole book, I just now need to finish one. I’m planning on doing NaNoWriMo this November, and this time, I plan on winning that 50,000 word challenge. So hopefully that will lead to something I can con you all into buying 😉

  6. Terri Hanson October 16, 2013 at 12:28 pm #

    Welcome to the Puget Sound, Phoebe, where resources & people are great! Just found your blog & I am a friend of your MIL who single handingly made my son’s wedding reception happen. Just have to say it must run in the family to live by that philosophy “to help other’s”, as being a recipient of that just help, I am forever grateful. Being treated badly is never easy to forget & the memories are impossible to “just let go”, but time is a friend here & getting out of the environment that the badness happened in, is also a friend. More importantly though is what you do with that hurt & you’ve got that handled. Kudos to you for recognizing the need & means to your suffering. Keep writing…I’m addicted!

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