Remembering and thanking FA 504 trailblazers and advocates

[LinksEtc]

FA 504 Plans seem to be a "hot topic" these days, but I think it's important to acknowledge and thank those individuals who were involved in education and advocacy early on before the idea of FA 504 Plans gained such legitimacy in our community.  Their efforts have undoubtedly helped to keep many FA children safer and more included at school. 

So this is a thread to say thank you to those individuals and to let them know how much their efforts are appreciated.  Feel free to post and thank whoever has helped you in your school 504 Plan journey.

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A few threads to remember ...


"Why Not Obtaining a 504 is a Disservice to Your Child"
http://www.peanutallergy.com/boards/why-not-obtaining-section-504-for-your-child-is-a-disservice-to-your-child


Re: AllergicChild blog post re: 504: input/discussion?


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Re: Docs helping patients to surf the internet

I'm beyond proud of FAS for being the force behind the shift toward Section 504 for LTFA, and for being home to several people who have said "No.  I'm NOT going to go away.  I'm going to win, and if I burn bridges so be it, because this is WRONG."  I am in awe of the fortitude that it takes to pursue due process or court action with a school (or other organization) when it is so much easier to just walk away.

[Macabre]

Thank you to:

Gail
CM
Momcat
gvmom
Notnutty
Rhonda
WarmT (and no one probably realizes just how much everyone in the country who got a 504 after June 2008 owes her)

[CMdeux]

Macabre is FAR too modest, let me just say.  Because probably people underestimate just how instrumental she has been when they stumble upon Wrightslaw in their search for food allergy 504 assistance. 

[yelloww]

Gail, I don't know if you read here still or not, but your posts way back on the old board came at the most perfect time for us. They changed my way of thinking for the better and I think my son's quality of life has been much better for it too.

The other thread for me was the "why I am not sending in safe treat" thread from the old board. That was also quite timely.

I know our lives would be much different if it weren't for your posts there. I can't even begin to tell you what a difference those posts made in our lives. 

[momma2boys]

Gail and Cam's mom helped me so much! My ds was the first in the district to have a 504 for pa. Miss them both!

[CMdeux]

Ryansmom who had the ORIGINAL "Cadillac" of 504 plans and so graciously shared so much of it for years and years.   


Really, though, my epiphany was in GVmom's "I'm not sending treats" thread at PA.com.  That changed me, and it's the reason why I continue to pay it forward here every day.

That one thread made my daughter's life immeasurably better, and opened my eyes (and ultimately-- hers) to the world in a way that I'd not allowed myself to think about it until then.  Not really.

[ajasfolks2]

Thanking the list above, most certainly.

I'd like to add my thanks to mommabear (esp discussions vs Gail) who inadvertently forced me to REALLY get the difference between 504 and IEP . . . which made me learn 504 even more.

And as to the "I'm not sending in safe treats" thread . . . I must echo CM's comments above.  That discussion (and my own experiences with son and school at the time) were life altering for me.

A "later" thank you would go to Stinky here for her thread as to why an IHP/IHCP "just won't do" . . . and her education of the school/district in her situation.

[daisy madness]

I'd like to send a thank you to TwinTurbo and Macabre.  They've both been immensely helpful to me and are gifted at reading through paragraphs of information and pulling out the key points without getting distracted by the rest of it.  I'm still muddling through our issues with the school district but I'm hoping for a resolution soon.  When I get one, I'll post it. 

[LinksEtc]

Is this the safe treats thread?  This was before I joined you all  .

http://www.peanutallergy.com/boards/i-am-not-sending-in-safe-treats

[yelloww]

Yep, that's the thread! Blast from the past with some of the old user names!

[momma2boys]

That was a blast from the past! Ended up reading that one and some others last night. Weird going back to that stage of this journey.  So many people I miss though.

[CMdeux]

YES!      That is the one.  The one, really.

While "disservice" is one that opened my eyes intellectually... and strategically...

"Treats" is the one that opened my heart and soul.   

BIG shout-out to Ark, Nutternomore, lilpig and Notnutty (as well as gvmom and saknjmom) in that thread, in addition to those I mentioned before.

In some ways, it's a bit depressing to read my own posts some 8 years on, and realize that some things have not changed for my DD.  It's like holding back the sea.      Any break in your resolve and the dike begins to crumble. 


[spoiler]

I think it is high time for ME to stop soothing my child with platitudes that she knows are nothing but sugar-coated lies. It isn't right, and nothing I can say about people's intentions will make it so for her. She knows that most adults don't care whether she lives or dies. How many other sunny 8 yo kids really KNOW that about the world they live in? This isn't about shielding her from reality. That is her reality. I'd just like to prevent her being tortured by that sort on a regular basis.

I can't make my daughter's allergies that unobtrusive in her life and ours. She'd love to be able to eat in a restaurant, or even just not wear a medicalert bracelet and carry around a bag full of thermally-sensitive medications. She'd love to get on an airplane and travel the world. It isn't going to happen for her.

Nobody is saying that our kids (or anyone else) should have a fully 'level' playing field of life. Nobody ever does-- but we are all entitled to human dignity.

Would we tolerate any other officially sanctioned activity that took any involuntary characteristic of just one child in a group and made it the basis of differentiation and isolation? I wouldn't-- it is unecessary and cruel.

She is very good at pretending it doesn't matter. But I have been very surprised at what I have heard her say since I stopped trying to 'shush' her when she complained.

Equal rights are not special rights.

And they still aren't.  When I think about what it took for her to visit Europe, I want to cry-- she'd make the ultimate world-traveller-- by disposition, I mean-- if not for her bloody FA's. 

An excellent question.

Inclusion means inclusion. That's what I think.

So if that means that I can't pass out latex balloons because of Janey's allergy, and Timmy can't eat wheat cupcakes, well, then, why don't we plan something ELSE entirely?? Oh? Juan is a Jehovah's Witness, you say? Fine. Here is a book for the classroom in my child's name. Can my child bring this and have it read during story time? We'll save 'happy birthday' for tonight at home.

The thing this thread has made me consider is this:

I need to consider carefully why I continue to ENABLE this kind of thing. Is it:

a. Because I'm comfortable with the status quo-- that I truly don't see anything 'wrong' about it?

or

b. Because I don't see what I can do to change it or fear the conflict that I know it will cause to try?


I am ashamed to admit that it is the latter. I've given up too many times, thinking, "This isn't so bad. At least.....{fill in the blank}." I've tried so many times to convince my daughter (and myself) that it was "fine" that events were "almost" accessible for her. Ugh.

Thank you, gvmom, for making my DH and I question our own personal 'comfort zone' that finds activism-based advocacy fairly 'radical' and even 'distasteful.'

I think that I owe my daughter better than to tell her that she should be 'happy enough' with the back of the bus.

I've come a long way, now that I recall this kind of thinking with bemusement that I ever questioned my attitude that my daughter's worth makes her the equal of any other human being.  It does me good to read it again.
[/spoiler]
Those reading it for the first time, though-- should be aware that much of the 'meat' in some posts has been gutted with time.  Not all posts, and some of the very powerful ideas are intact-- but there are parts of that thread that are no longer there.  Some of us were prescient enough to grab full versions during the 2008 exodus.

[ajasfolks2]

*sigh* I think my full version is on my Dell laptop that died before I did successful full backup . . .