A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Sunday, July 18, 2010

ad·vo·ca·cy

"I want a girl...
who uses a machete to cut through red tape"
-Cake


A few months ago, a mom I know was starting to freak out about what to do with her son for school next year. She'd been given the run around by the public schools, and most private schools won't take kids like ours; they seem to define special needs as dyslexia or some learning disabilities. I have about 9 months before I really need to freak out about this. Still, it's there. Anyway, I ran into this mom today and we talked all about how important inclusion is, how much Little Bird has benefitted from it, and how much her son is loving being at an inclusion summer camp. We talked about the big A. Well, the other big A: Advocacy.

A new friend found her way to these parts recently and sent me a message that I'm an "amazing advocate" for Little Bird. Such kind words, but really, I think most moms in my situation would fight the same way. My friend Lynn says she's an unwilling inductee into the Autism Army. Love that. Because we are warriors in battle. We are an army of moms fighting like mad for our kids. 

And we're everywhere. Hear us roar!
Two years ago my friend W's son entered a full inclusion preschool program and then she never stopped talking about how amazing it was, how her son progressed leaps and bounds just by being around typical kids. The next year, I wiggled my way into that program. I was uncertain, but wanted so badly to have the same experience W did. It took no time for me to sing the praises of the program. In fact, the director of the program told me to slow it down because she was getting too many calls and didn't have enough spaces. I can't help it! I love this program! Of course, Little Bird will do Kindergarten there, but that's the end of the line for her- the program ends at Kindergarten. We'll have to see where we can find a good fit for her. I'm willing to fight fight fight for inclusion and for whatever services my bird needs and deserves. Grrrrrr!

Not all moms are as tough, but that's kind of what we're here for. We are tough for those that can't be. We are fighting for inclusion so the schools, teachers, social workers can see just how amazing it can be. They'll see that every child benefits from an inclusive environment, and they'll be more ready and willing to join our fight. Of course, Little Bird is my number one. But there's a part of me that knows I'm doing this for YOUR kids, too. I'm doing this for the families whose kids haven't yet been dx'd- even for those who haven't yet been born. Because we tough cookies, we mother warriors are gonna get this done. Grrrrr!

A few days ago I sat with a woman watching our children get occupational therapy. She's from Pakistan and her son is about 4. She's so intimidated by the system because English is her second language and she doesn't seem to know all of her or her son's rights. She accepts whatever is offered to her the first time around. I say the first time because most of us warrior moms rarely sign an IEP on the first round. We bring it back to our private therapists and we consult other moms who have gone before us. Some of us seek legal help. These might not be the very best services she can get for her son, but she doesn't even know that she can ask for more. She is, I believe, being taken advantage of. She might even know it. And so, it's for her, too, that I fight; that we all fight. We're changing the world, the way the system deals with kids with special needs. One IEP at a time.

Grrrrr!


15 comments:

Acting Balanced Mom said...

I am totally with you on the advocacy front... I figure it's my job to ensure that both my kids benefit fully from everything that the world has to offer them... and since both my kids have ieps at opposite ends of the education spectrum, I've learned to make sure I get my point across....
I do feel bad for parents who haven't caught the advocacy bug, either through language or other difficulties - they, and their children may miss out on some opportunities... or just get sucked down the education vortex of mumbo-jumbo and edu-speak...

michelle said...

Negotiating the school system is like negotiating the health care system. You need to inform yourself and be aggressive and hopefully have someone on the inside who can help you cut through the tape.

It's all about the $$$

sigh

keep kicking a** for your girl

Lynn said...

Thanks for the shout-out! Grrrrr....we are indeed all fighting for the same cause. I hope I can keep up the pace when Audrey is mainstreamed and then through middle school and beyond. Is the machete reserved for bureaucrats, teachers, insurance companies, etc., or can I use it on a peer that bullies or makes fun of her? Warrior mother indeed.

Deann said...

You are the mom that makes me remember then unsigned IEP's the first time around are ok! : ) That is a teacher's worst nightmare! lol. I love you anyway! Will e-mail later today....

Penny said...

Sometimes, it's better to give up the fight and advocate in a new way. Mama Bird, you and I need to have a talk - you need to know some of the obstacles I faced and why I did what I did.

tulpen said...

I'm so lucky I never had to fight about school. Within days of his hearing loss being diagnosed, the director from a Deaf school was in my living room describing her school and the Deaf world and I never considered taking my son anywhere else.

The Hearing world isn't for him, neither is the exclusively Deaf world. He's learning to navigate BOTH worlds and I can't think of anything better for him.

Don't hate me, but, I LOVE IEP MEETINGS. They are a great big love fest.

Anonymous said...

As a teacher, mom of a kid with an IEP, and an administrative designee at many, many IEPs, it is even hard for ME to understand all that goes on at IEPs! Sign only when you understand everything, and are in agreement. If not, go back to the table and keep the negotiations going!

Oh, and full inclusion, when appropriate, ROCKS!!!
xoxo
Jenn

melissa said...

i've been through the iep process three times...twice..with the same kid. and i still don't quite *get it*
but it's there.
one thing...if you request your child to be tested, im public school. they have 30 days to comply. they HAVE TO! i learned that from my son's counselor at warner...she was awesome.

as parents, a main part of our job description is advocate. we gave birth, adopted, fostered these children and they are number one priorities.
after all, they'll be taking care of us in our golden years.
you, my little bloggy friend, rock at taking care of business for little bird!

Heather said...

Just had a similar conversation yesterday at the family retreat- I have made it a rule to never, ever sign an IEP on the first trial...even if I agree with it it keeps the "professionals" on their toes ;)

Grandmother Crone said...

Machete is a great quote! I love it.

The fighting, the struggle, the advocacy, the educating ourselves to what's available out there is hard but rewarding when we accomplish what our child needs, bit by little bit. Always we need to be vigilant.
When my daughter was born with two difficult health problems, I understood really fast that a doctor is not an all knowing god. I learned to research and fight for what I thought was the best way to deal with her problems. Many medical people have contempt for anyone that challenges them. Not only medical people, but systems and people who run systems. We always need to be on top of our game. Too many times we find ourselves at a dead end and so isolated, sometimes we find kindness and intelligence. Hard not to give in to exhaustion.

TherExtras said...

I used the machete analogy in my upcoming post on Thinking Person's Guide to Autism. It's a jungle out there!

But

I resist the warrior-mom model for EVERYONE. Parents have to machete their own paths - some closer to the comforting shore instead of up the mountainside.

I also resist the idea that inclusion is right for everyone. It.is.not. Promoting only ONE placement choice as best for everyone is antithetical to the individual decisions that need to be made by the small group of people meeting to determine the IEP.

Also, advocacy is not for everyone. Parents come to that role when they are ready. I encourage those who are not ready to not feel guilty about just working for their own child/family before taking on issues that apply to all.

Barbara

Susie Kline said...

Warrior moms rock! I love this post!

xo Susie

Kristine said...

We have yet to enter the world of IEP's, but if it's anything like the assessments by OT or SLP it'll be a big deal and then all of her therapists will forget all of the goals the next week. I'm expecting that I suspect that I'll have to advocate even more during Katie's school years. I just LOVE how some of her therapists look at me like I'm asking too much of them or that I'm too involved in my own little girl's development. I think a lot of them prefer that I step back and let them do what they decide with no interference. Seriously?!

Katy said...

Oh, Dani, I SO needed to read this today. I just got back from a meeting and this woman was such a huge advocate for her son who has Down Syndrome and I thought, "I want to be her when I grow up." It is scary and hard to fight with other adults, but you are right--we must.

mommy~dearest said...

Grrr! You said it, momma! :)

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