Happy Birthday Mr. L
When my oldest son was diagnosed with autism I had never heard of autism but I was ready to learn ALL the things. Then soon I learned that there was more to raising my child than just learning about his diagnosis and patiently guiding him through this confusing and complex thing we call life. I quickly learned a new word call, advocacy.
Here's the thing about autism, it is a neurological disorder. It's not like a broken bone, where there is a straight path to solve the issue. There are so many different ways to help autism and so many professional and non-professionals who have ideas of how to help- some great, while other ideas can be tossed into the gutter and should be washed down the sewer.
So not only did my husband and I have to learn to navigate these ideas, but I had to learn to find a voice I had never flexed before. And let me tell you how strenuous, nerve wracking, and terrifying that felt most of the time! I found myself in many conversations with doctors, therapists and school meetings where I found my voice shaking, my hands clammy and my forehead breaking out in a stress sweat I had never felt before. But the goal was too important to waver. My son's success meant more to me than my personal comfort level.
Young Baby, Young Momma
And may I just add that I had to learn not only how to think ahead and plan my son's daily activities, but I had to learn how to predict and plan for what these professionals were going to recommend. I chose to brainstorm how I was going to not only navigate these conversations, but I had to come at it with angles of building relationships, partnerships, collaboration while still demanding the changes and services my son needed to become who he is capable of being.
Through all of this and with the help of my husband I learned how to advocate.
But here is another thing I learned, once you find your voice, you should use it not only to speak for others- But you should teach others to find theirs.
So the next step was to become an advocate for others… And that is what I'm working on now.
Just like the path of raising a child with autism, becoming an advocate for other families is not a straight and clear path.
The Beach is Therapy
I do have friends, family, and occasionally acquaintances reach out with questions and I am always more than happy to help where I can and. But back in 2020 my sister in law sent me an email and asked if I wanted to be a parent advocate for a state board that was part of an emergency, disaster, national board. And I told her that I'd give it a go.
Truth be told I'm still figuring it out. I do know that I am a special needs parent advocate for emergency responders. I am on a board that meets quarterly and without a parent advocate they can't get their grant funding, so that's kinda cool. It's basically a whole bunch of professionals who come up with ideas of how to improve ambulance services, paramedic responses, and ER procedures and then they check in with me and ask, would this actually be helpful? And then I let them know if they missed the mark, and how to look at it from a different angle.
I bring the perspective of a mother who is raising children with special needs. These needs are not only often forgotten and overlooked, they are not even known to exist. There is a whole population of people who many in this world have no idea how their lives look. So I'm here to speak up and to share. This can also be nerve wracking, but it's also important work, and it's pretty cool.
Parent Advocates at a Conference.
I like being helpful. I want this world to be a better place not just for my children, but for everyone who is left aside, and I can't sit by and wish, I gotta do something about it. So I am, one day at a time. Wish me luck!
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