A teacher from high school who lives down the street contacted me a while back, asking me to consider working with a couple of high school seniors who would like to focus their senior projects on the topic of autism. She told me to be thinking about what these students could do for our family, for our girl.
I've let this swirl around in my head for a few weeks now. I'm so thankful that there are children out there who want to make a difference, who are taking the time to learn about autism. It gives me hope for the future. And, you would think after so much time living in the land of autism, I would be able to spew a laundry list of ways that families like ours could be supported and helped.
But, the truth is... I'm drawing a blank. Well, that's not really true. I guess the real truth is that the things I've been thinking about can't be accomplished in a high school senior project...
I want Olivia to be able to communicate her needs to us so that she won't be filled with anxiety. I want her to not be so overwhelmed with emotions and sensory input that she must bang her head for relief.
I want her to be able to live a day without diapers. Better yet, I want there to be a day when you can open our broom closet door and not see a. single. diaper. there.
I want to be able to go on family trips or to a restaurant or to the park and not be focused on whether or not a child will squeal in delight or that an adult talks too loudly. For my girl can't handle such noises and it makes for very unpredictable outings.
I want to play with my girl. Not with the hundreds of flash cards that she has, pulling one from the back and placing it in the front. I mean pretending to be mommy with baby dolls or making a fake dinner of plastic vegetables and empty tea cups.
I want Olivia to have a friend.
I want to climb into her brain and understand how it works. I want to know exactly why she could say her alphabet backwards at the age of three, but she can't tell me she is thirsty. I want to see how connections are made in her mind. I want to think like her and truly be immersed in her world.
I want a cure.
That's so hard to put out there... I've said before that I'm thankful God doesn't allow us to choose our path, because I would have Olivia walking and talking, and that would change her. Who she is. And it would change us. So, I'm glad I don't have a choice. But, there are a lot of moments when I pray that autism goes away. Not just for us, but for so many others who are on this path. I want a cure for the child who cannot stand to be touched, let alone hugged and kissed. I want a cure for the agony that comes with watching your child suffer through the anxiety and stress that so often comes with the territory of autism. I want a cure for my girl, so that she can call me mommy and tell me about her day. Yes, I want a cure.
I want a world where you don't have to fight to get what your child needs. I want to be able to get the equipment and therapy and medical evaluations and treatments that help autistic children be safe and healthy and growing. I want it to be easier to do what's best for my girl.
I want parents to know exactly how to get help for their child. There are too many gaps, too many disconnects, not enough clear paths to get information and services, and way too many parents who are just trying to survive the day and who don't have time or energy to wade through it all. I want parents and families to be able to raise their child with confidence, knowing that there are supports in place to meet all of their needs. I want autistic children to have the education and therapies and equipment and love they need and deserve.
I want the whole world to experience this journey. Not because I want pity, or even empathy. But, simply because this girl has changed our lives and I want everyone else to be changed, too. Olivia has transformed our faith. God has worked through her in so many awesome ways. I want the entire world to know what that's like. I want every soul on this earth to feel Him near when Olivia sings. I want each human being to be touched by the way this child, in all of her mysterious ways, grabs your heart and takes your breath. I want every single person, no matter their journey, to know God's peace the way it has overcome me when everything is falling apart and I'm scared and feeling helpless. That peace that surpasses all understanding.
I want so much...
I don't mean to imply that there aren't small things that can be done to support families. It's the small things that make this journey so much easier to handle. It's a call from a neighbor at midnight when she reads your facebook post about Olivia not sleeping and she offers to bring over a heavy blanket to try. It's a prayer lifted up to God on our behalf. It's an ear and a shoulder at just the right time. It's being in the valley with us when things are rough, and celebrating with us when Olivia learns something new. It's loving our girl exactly how she is. Oh, these things matter. So very, very much.
But, what can I ask these students to do? I need to call the supervising teacher back. I need to respond to the email from one of the students who has already asked how she could get started. I still don't know what to say, really. But, I'll keep letting the idea swirl around in my head until I come up with some ideas on ways these students can support autistic children and their families. I can't pass up the opportunity to spread awareness, to nurture compassion.
To bring hope.
If you have an idea that I can share with these students on how to support and help our children and our families, please let me know!!
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