October 25th, 2011~The day "Autism" became a reality for my son. Ethan was 26 months old at the time; the diagnosis didn't come as a surprise. Yet, it hit my heart like the Titanic struck the iceberg! Only difference being; we refuse to sink.
"Moderate/Severe" is where we spent years 3 to 7. Discouraging statements made by providers who looked at my son as a DIAGNOSIS; rather than the extraordinary individual he is!
Non-verbal. Poor safety awareness. Elopement. Sleeping in front of doors (even w/safety precautions in place). Property destruction. Sensory overload. Meltdowns & Behaviors. Insomnia. Anxiety. Always on the go. Back then, some days were so terrifying, I wondered... Is today the day I will see my son's face for the last time. A heartbreaking experience as a parent. Although, it was always a possibility with how chaotic things were back then. Dispite every precaution my husband and I put in place; it was never enough.
At age 5, it was being recommended - advocated for by professionals would be a more accurate description - that we look at inpatient care.
No resources. No support. "You don't qualify... You exceed income limits... His needs are too 'severe'... We can't accommodate non-verbal..." Ect.
The individuals that were supposed to provide support were only willing to provide a life boat big enough for 4; as if Ethan had no value to offer this world. Yes, it was stressful. It was exhausting. Miserable at times. Our family was drowning and we were met with resistance everywhere we turned. Even requesting a life jacket was too much to ask!
So we did as any parent would in our situation. Putting Ethan in the boat. As my husband & I took turns in the bitter cold water... All the way to shore!
We gave up everything!! Essentially gaining so much more than we ever dreamed of.
October 2016~I became a stay at home mom. One income. Blindly testing the waters. With a hopeful heart that our sacrifice would pay off.
Different city. Different school district. New providers. An entire new team for Ethan. Only allowing those who saw him as a person be involved in his care.
Here we are three and a half years later...
We have a child doing what we were once told wasn't going to be a realistic outcome. Ethan has made astounding progress! And continues to - daily. He's verbal. It's still a struggle with some language skills, but he's able to verbally communicate - MANY, MANY - things. He's thriving in school with academic goals on his IEP; no longer 'life skill' type goals. Ethan even spends time with his neurotypical peers in the educational setting. The most confident individual I know, by far. Our home is nicely decorated. Property destruction, and poor safety awareness, are only a memory now. He is social; always looking to make new friends. We enjoy outings in the community. He can play in the yard without the fear of him running off. Ethan follows directions. Well, about as much as an ornery 10 year old does. LOL.
When I think about 'how' all this progress has been attainable. One single thing comes to mind.
_ LOVE _
Without that, our family couldn't have survived & conquered all that we have. Love is what allowed us to make the choice to fight for Ethan, with him, if you will. After all - HE has had to work the hardest to achieve all that he has. As parents we simply seek out and provide appropriate resources to help our children be as successful as possible.
There is beauty in Autism. If you need someone to remind you of that - I'm only a click away!
INDEPENDENCE, MO