Thursday, October 6, 2011

The Good Fight!

This week I was reminded of a misconception when it comes to raising a child with special needs that makes me want to scream. 

Someone that is very close to me felt the need to point out that it seems like I like to fight. I just shook my head and responded with something like.... I am not sure I LIKE to fight but at least I am good at it. 

Raising a child with special needs requires and immense amount of advocating or fighting as some would call it. Much of the time it does feel like fighting and I am sure to an outsider it looks like a whole bunch of self induced drama. 

However, I would like to ask that before you view advocating for your child as fighting you show up to an IEP meeting with a bunch of big wigs who seem more interested in the schools budget then your child and can twist your words and the law to fit their agenda  or maybe sit in a surgery waiting room  reflecting on how sick your child is because of someone else's negligence while they poke unnecessary holes in your child's gut. Maybe you would rather sit on the phone making appointments, getting referrals, and jumping through so many hoops you run out of battery on your phone before 10 am. 

In the last couple of weeks I have found myself telling more people how sick I am of having to fight for every single little thing that is right and true. I am tired of being the underdog. I am tired of asking to speak to the higher up just to get somewhere. I am tired of getting one thing resolved only to have the rug pulled out from underneath me on 3 other issues I thought I had already taken care of. I am tired of fighting. 

The fight however is far from over. If you want to call all of the things I do to give my daughter the best quality of life fighting, then go for it. Call it what you will but what ever it is called, I am far from too tired to keep going.

In fact today I feel like a huge weight has been lifted off of me. I have been asking for accountability and action in two very different areas of my children's life. Today I got VERY good news on both issues which just reminded me once again why I go to such lengths to advocate for my children.

Given the public nature of this blog I am choosing to keep the specific events of today to myself but know that soon I should be toasting to some major successes and when that happens I will fill in the blanks here for all of you to toast right along with me. 
I will continue to advocate or fight for my kids. Call it what ever you would like. This mama bear ain't backing down! 
Believe.... Prayer Works! 


Anonymous said...


The Henrys said...

Oh I so understand you here! I get so tired of fighting, for everything, all the time. It isn't fair and it isn't right. Special needs parents need more help and support, but instead we are busy fighting.

Anonymous said...

If you don't fight for your kids, who will? Keep fighting no matter what people tell you.
I don't know you but I admire you greatly and love seeing updates about your beautiful girl!

Candice said...

I know exactly what you mean about "fixed issues" rearing their ugly heads weeks/months later. That sometimes is the hardest part!

Congrats on today's victories!!

Anonymous said...

As a preschool director who goes to many CPSE meetings to help parents fight for what their children deserve...yeah you! Keep fighting, because Makenzie deserves to have the best that is available for her.

Anonymous said...

How have you learned your advocating skills? I feel I am too easy on what I expect for our little one. She is a kindergartner who also has quadriplegic cp, so I am at a loss what I want - torn between dreams and realism I guess. It probably doesn't help that I taught special education for so long, so it might color how I look at long term. That's not nesessarily a negative as much as again realism. Also, since we were Meya's foster parents first, we couldn't advocate with an educational advocate, but now that our adoption is complete we can advocate to beat the band, so... where to start. Anyways, just curious how you have taught yourself to fight the good fight.


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