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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. 
