Advocate Like a Mother

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Go ahead and call me a Mama Bear because I am that Mom.

There is not a day that has gone by in my life as a mother that I haven’t cheered on or supported my children. I would have never used the word “advocate” for myself until an April day a couple of years ago in our pediatrician’s office when I heard words that changed our world.

Suspected Autism Spectrum Disorder

I had heard of ASD before that day, but I didn’t know much about it. The truth is what I did know was pretty much what you see portrayed in movies or TV. That knowledge could have filled a thimble and was mostly inaccurate. I was determined to immediately rectify that.

I set out on a mission after that diagnosis was confirmed to learn all I could about Autism and how it would be a constant companion in our lives. Never would I have imagined that I would learn so much or that my boys would teach me as much as they have.

Subject Matter Expert: My Kids

I am by no means a subject matter expert on Autism. But, I am a subject matter expert on Jack and Wyat. I know my boys, their triggers, and their limits. They see me as their person and they look to and for me when things are uncertain.

Advocacy has very much become a part of my life because of them. I never dreamed of myself being an advocate for anything really, but here I am killing.

Autism lives with us daily and weaves itself into every aspect of our daily lives. The month of April, however, is World Autism Awareness Month with April 2nd specifically designated as World Autism Awareness day. It is a month that Facebook and other social media turn blue and a focus is brought to ASD.

I am always willing to spread awareness and educate others on our journey. In the month of April, that advocate role goes into high gear. I take advantage of that spotlight.  Thirty days are spent with a focus on sprinkling awareness in attempts to achieve more understanding, compassion, and resources for all individuals living life on the spectrum.

There are some things you should know in the spirit of advocacy and awareness.

The Stats

The CDC estimates that 1 in 54 children are living with an Autism Spectrum Disorder diagnosis. Boys make up 1 in 4 of those diagnoses and sadly, girls have a tendency to go underdiagnosed. These states have seemingly skyrocketed in the last decade or two, but it is really a reality of a better understanding of ASD itself.

Stats like these mean you likely know someone living with Autism whether you realize it or not.

The Spectrum

There is a saying that if you have met one person with Autism, then you have met one person with Autism. That is so true. Autism a spectrum. There are varying degrees of it and it manifests itself differently in everyone.

I see this day in and day out in my home. My boys are complete opposites in every way. I can admit that had it not been for Wyat’s amazing speech therapist it is entirely possible that I may have missed his diagnosis. He is in a completely different area of the spectrum. I had convinced myself that since he was so different from Jack he did not have Autism. That was a hard lesson to learn.

Just because you know a person who knows a person with ASD or have watched Rainman, doesn’t mean you know my boys or that I know that person. And please, forget about Rainman.

There is no cure.

Autism doesn’t come with a cure. It isn’t a deadly disease and doesn’t need one either. There are treatments that work to help individuals with ASD like speech, occupational, physical, and behavioral therapies to name a few. If someone tells you they have the cure, you need to run fast because it doesn’t exist.

I received a message once from someone who I went to high school with who promised me a cure. She could give it to me if I wanted to be a good mom and fix them. Let’s just say that that conversation didn’t end very well for her.

My boys are perfect in my eyes. They don’t need to be fixed or cured. God doesn’t make mistakes. They are wonderfully and beautifully created and they will change the world one day– they’ve already changed mine. I would not change them for the world, but I sure would change the world for them.

Speaking of the world…

Inclusion. Inclusion. Should I say it one more time for the people in the back?

Throughout the school year, I sit in on Individualized Education Program (IEP) meetings with a team of professionals. We hammer out what sort of supports my boys need to receive a basic education in the least restrictive of environments. Read that again– BASIC.

We have an amazing team in our corner and they are quick to focus on strengths and progress, but IEP days are hard. It can be a lengthy process that centers around deficits and how to overcome those gaps. I like to focus on the power of yet– we’ve yet to do that, we’ve yet to get there, etc. So focusing on the can nots can pretty be hard.

Take it outside the classroom

Inclusion doesn’t just start and stop at the schoolhouse doors. Everyone in this world wants to be loved, accepted and included. A person with Autism is no different. They know when they are being left out or mistreated. It is an awful thing to experience and it is an awful thing to sit back and watch as a parent.

We live in a world where differences are feared more than accepted and it makes for a very isolated feeling at times. We’ve had to make changes in our lifestyle, lost friends, or missed out on experiences because of certain limitations we have. It stinks, but sometimes it has to be that way. What I am trying to say is, don’t stop the invites. Don’t stop trying to include. Sometimes the gesture means more than words can say.

Educate Yourself

Ask the questions. Read the answers. Listen.

I am happy to help you. Never will I ever be offended by someone asking questions over making assumptions about my boys. I will happily share knowledge and experiences to spread awareness and drive acceptance. The two most amazing and adorable teachers schooling me on life on the spectrum. I will spend the rest of my days advocating like a mother for them.

 

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Marisa was born and bred in the Toledo area and spent most of her life in Point Place. She is a SAHM and currently resides in Waterville with her husband, Josh, four kids, Emma, Lily, Jack, and Wyat, and two dogs, Molly and Luckie. She is a self proclaimed Golden Girls, Disney, and organizational junkie. You can often find Marisa sipping a good cup of coffee (or wine), reading, watching terrible reality TV or Lifetime movies, or Pinterest dreaming. She loves to travel, online shop, and has spent her life perfecting her well-crafted use of sarcasm. Marisa finds she gets by most days with a whole lot of Jesus and coffee and that well-placed sarcasm. You can follow along with her misadventures and organized chaos @risasue040582.

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