Saturday, June 15, 2013

You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.

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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.
One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.
At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.
I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.
Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.
Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.
Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.
This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.
I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.
It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.
I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

2 comments:

Marie Duke said...

Applause! Applause!

kevin Luther said...

Wow! Thank you. I'm looking forward to trying this. I’ve been looking all over for this! Thank goodness I found it on this blog . You have made my day! Thanks again!I think this is engaging and eye-opening material. Thank you so much for caring about your content and your readers.

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