The following guest blog post was written by Michelle Kiger of My Redhead Warriors
The last thing I ever want to do is lose hope. When our life gets really hard I try to think of our past. Look back at all the obstacles we have overcome. Remember the challenges that are no longer issues. Stay positive things will get better.
I’ve spent 16 years immersed in this world. A world I knew little about and never imagined being in. A mysterious world. One where it’s impossible to track milestones or foresee the future. A world that can be every bit as cruel as it is amazing.
There is so much hope in the beginning. I spent years thinking I could possibly cure severe autism. Tried everything I could find in my endless nights of internet searching. Spent a fortune on biomedical interventions that did very little. Blamed myself for not being able to find the right therapy or treatment. Even with each heartbreak, I kept my resolve. My hope that autism would not dictate our lives forever.
Maybe having that hope made me a bit naive. Naive what a life with autism would look like. I often wonder what I would have wanted to know all those years ago or if my ignorance was bliss?
I don’t know if I could have grasped just how isolating this life is without living it. Would I be shocked how little family support we have? No one willing to give us much needed breaks? Or how lifelong friendships would be so easily dissolved. How few friends would make an effort to include us. How hurtful it feels to be judged and pitied.
I’d like to think i would have been better if the situations were reversed. But who knows? Maybe autism has to touch your life to have compassion. A true understanding not possible without living it.
My baby girl is turning 18 next month. My beautiful Claudia. My firstborn who still loves Dora and can melt your heart with her sweetness. The girl who never stops moving or talking, yet has very little functional language. My introduction and guide in autism.
I know Claudia will always need 24/7 care. She will never live independently. She likely won’t be able communicate above her basic needs. She won’t care about having friends and will need to rely on the kindness of others more and more.
I need to make peace with autism. Accept that it will always affect every aspect of our lives. I can see the future better now. Losing the hope that got us this far is not an option.