Ramblings on summer, change & a need for a fresh batch of hope.

It’s been a challenging summer for us. This was our first year of summer school for Liam and while it was good for him and important to keep his skills sharpened, it has led to a summer that has thrown us all for a loop.

All of us gear up for summer fun.  We all dream of the dog days of summer. We embrace ice cream for dinner and romping in our grubbies with our friends. This year, our moments came dispersed and in-between therapy and school this summer, which is not that big of a deal. It can put a damper on the hippie-wake-up-and-go feeling of summer, but we get on and adjust.

What has been more difficult about this summer is that we are seeing a difference in our family. We saw it before, but the circumstances weren’t as impacting as they are now. Summer camp dates, play dates, aquarium visits, trips to the library,  dinners with friends, in all of these moments we see such growth in Liam. He is so open to his surroundings this summer, and he is all in for FUN. He LOVES exploring and running around with friends and laughing and carrying on. LOVES IT.

And yet in all that fun, our new challenge is how Liam reads social cues. He wants kids to chase him-to no end. He wants to run from exhibit to exhibit-with no guidance. He wants to explore-without caution. And while all these things can sound typical of a 4 year old, they aren’t. Not when you have autism and can not understand why you can’t have all the penguin eggs, or why that kid doesn’t know the trains line up THIS way, or all you want to do is see what is so special about this bowl of water you can’t touch. And because Liam doesn’t have his language yet {see hope}, he can’t communicate his frustrations properly and we have melt-downs and tears, and it’s heartbreaking.

All Matt and I want for Liam is for him to be happy and successful at life. We are thrilled at the progress in speech and awareness that he is making, but we are entering a new, challenging and what seems like a lonely season. Liam’s therapy agenda’s are going to need to change to accommodate his growth in social awareness. Liam has one more year left with the award-winning autism teacher at Fairview to learn and grow in a controlled environment. The next step in Liam’s education depends so greatly on this year’s growth that it has us a little paralyzed. We have hope and faith that regardless  of how or what the following year looks like, that it will be what he needs, but we are a bit paralyzed nonetheless.

So.

I am currently sitting in the therapy clinic waiting room, in a corner with music filling my ears, overwhelmed with the enormity of what special needs parents walk through every day. Every week I see children that can’t walk, can’t speak, can speak but with different delays, leg braces, kids with autism, wheel chairs, you get the idea.  And until this summer, I’ve had a feeling of solidarity when I sit down. I would look around and smile. I would smile at the beauty that passes by. I would smile at the courage and bravery of these little people and their parents.  I felt a part of a community that understands.

But today I don’t want to understand. I don’t want anyone to have to understand. I want every child to speak freely and run wildly, and socialize appropriately. I don’t want there to be special needs. I don’t want there to be any reason that child or adult would feel lonely or excluded. Inclusion all the way. All the time. That’s how I feel today. That’s how I feel this summer.

Team Oakes need a fresh batch of strength and bravery and courage so we can keep fighting the good fight. We need a fresh breath of hope in us so we can advocate for Liam and make sure he has everything he needs to be happy and successful.

So. Today, I plug some music in my ear and ask for these things. A fresh batch. A fresh batch for everyone in this waiting room and in this world that needs it.

you are good, when there is nothing good in me
you are peace, when my fear is crippling
you are here, in your presence I’m made whole
you are God, of all else I’m letting go

Amen.

XO-Team Oakes

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