Thursday, October 11, 2012


ad·vo·cat·e, ad·vo·cat·ing, ad·vo·cates. 
To speak, plead, or argue in favor of.   


Several years ago I was in a meeting with the school principal. I made a comment, a slip of the tongue, and said something like "I have been fighting for him for a long time". She responded with "we don't like to use the word "fight". 

Yeah, I'm sure they don't.

There are very few people who know the full background of my sweet Justin. Very few people who know that when he was young we had him tested for Autism, then Aspergers and so on. There are few people who know the countless days I spent waiting in OT and speech therapy offices. I don't retell the story of the teacher the kindergarten teacher that, very loudly, announced in the hallway at drop off she felt Justin was OCD; because he was picking at dried glue. I try not to share the story about the teacher who put him in the closet. Yes, I said the closet; it happened in preschool, when Justin was only 3. 

But isn't that part of advocating? Sharing your story to let others know they are not alone. 

I have been fighting advocating for Justin for more than ten years. I'm a little worn out, but my job can not be done quite yet. I'm starting to wonder if it will ever be done. I have visions of me calling corporate bosses to tell them Justin NEEDS his snack and that he MUST be able to bring his work home to complete. They won't want me to go down there. 

To me... advocating is directly connected to fighting. I wish it felt differently, but I always seems to be fighting with someone. The school, the insurance company, the doctor that wants to treat in a way I don't feel comfortable with. I have however learned, over the years, to not back down and choose my wording wisely because it could mean the difference between getting what your child needs and them getting the bare minimum. As an advocate, I think it's sad words can cost our kids so much. 

I have learned, the older Justin gets, the harder it becomes to advocate for him. With each added diagnosis, it gets harder to word your concerns in such a way that they don't sound like a bunch of excuses. School has to be the hardest... instead of a couple teachers, we now have seven. Keeping up with seven different teachers, in addition to making them understand, kind of sucks (or in proper terms... it's unsatisfactory)? 

My most valuable lesson in all of this has come over time. Time has showed me that it has ALL been worth it. Every bout of anger, every tear, every phone call and email sent has all been worth it. I've witnessed it's worth as I have watched Justin grow. I have witnessed how far he has come in spite of those who give up because he has been blessed by those who won't. I have had the chance to watch a child grow everyday that could have easily been chalked off to a behavior problem, and almost was, when all he really needed was a different approach and someone to care enough about him.

To be honest, I had hoped to hang up my advocacy belt soon, only I know I still have a long road ahead. Not nearly as long as Justin's, but I have to lay the groundwork for him now; and that's a big load to haul. All I can do is keep truckin along and pray with all my being that what I can do will be enough. I don't have any other choice if I want Justin to have a fighting chance. Hmm, there goes that "fighting" word again.

Thank you, from the bottom of my heart, to all of those who didn't give up and have been influential, to both of us, along the way.  



Meri said...

Those fighting characters made me laugh! I was so distracted by them I'm tempted to label myself with a diagnosis too!

Warrior moms fight. It's our calling. It's what we must do.

And I must do it well!

Tammy said...

Anyone who stands between a parent and the care their children need should be prepared for a fight. Keep up the great work.

Kelly said...

This post really spoke to me and where my heart is right now...thank you for that. Justin has one of the best "fighting" for him! xoxo

Sarah said...

you're an incredible advocate who just knows when it turns into a fight and doesn't back down. I too feel incredibly frustrated that I feel we have to request the appropriate treatment of our loved ones when it seems the doctors/insurance co/etc are just doing the bare minimum to get by - I have the hope that eventually others will want the best for everybody rather than just the easiest. Thank goodness our kiddos have us, right?! :)

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