Try Everything.

Autism Awareness Day. Every year since 2013, this day has brought a mix of emotions. We have grateful hearts for the growth we’ve seen, the angels dressed as therapists, early intervention specialists, chiropractors, teachers, our paraprofessional, and a community that surrounds us with love and support. While we are reminded of hope and gains made, we also live in our reality and the fears that we try our best to keep at bay. The tension of both hope and fear. On our best days we play loud inspiring music and dance the fear away, and on our worst we get ice cream cones and snuggle a bit longer on the couch and remind ourselves that the love we have created at 808 is enough and we trust that God will surround and keep Liam beyond what we are capable of doing in our own strength.

This year has been a challenging year for our little man, for his educators, and for us as his advocates. He is growing in awareness and his world expands by leaps and bounds for which we could not be more thankful for. With that growth, however has come an awareness of how frustrating things can be for himself. He’s beginning to see a difference in the speed and ease at which some of his classmates are able to do things and this year it has upset him. Matt and I have had to increase our awareness of the classroom and advocate for what he needs to be successful. The school team has had to regroup more often this year.

In the middle of this frustration, we found some answers and have come to understand all over again that things are fluid and not fixed when it comes to Liam’s support. To do our best for Liam, we have to be willing to be patient and listen and watch and see HIM. That while it is not about the institution, or the classroom, we have to understand all these components to figure out the pieces that make sense for Liam and HIS needs.

And yet, in his most frustrating year, our buddy has showed an amazing amount of creativity and curiosity. Creating comic books, independently reading, asking questions and looking for the answers on the internet. He is learning how to swim and takes the best care of his baby sister. To know where we began 6 years ago to where we are today is mind blowing.

We watched Zootopia awhile ago and Molly picked up on this song so we started listening to it in the car. I had to hide the tears that were streaming down my face as I listened to the words. If ever there were a song that fit this season for Liam it is Try Everything by Shakira:

I messed up tonight

I lost another fight

I still mess up but I’ll just start again

I keep falling down

I keep on hitting the ground

I always get up now to see what’s next

Birds don’t just fly

They fall down and get up

Nobody learns without getting it wrong

I won’t give up, no I won’t give in

Till I reach the end

And then I’ll start again

Though I’m on the lead

I wanna try everything

I wanna try even though I could fail

I won’t give up, no I won’t give in

Till I reach the end

And then I’ll start again

No I won’t leave

I wanna try everything

I wanna try even though I could fail

Oh oh try everything

Look how far you’ve come

You filled your heart with love

Baby you’ve done enough now catch your breath

Don’t beat yourself up

Don’t need to run so fast

Sometimes we come last but we did our best

I won’t give up, no I won’t give in

Till I reach the end

And then I’ll start again

Though I’m on the lead

I wanna try everything

I wanna try even though I could fail

I won’t give up, no I won’t give in

Till I reach the end

And then I’ll start again

No I won’t leave

I wanna try everything

I wanna try even though I could fail

I’ll keep on making those new mistakes

I’ll keep on making them every day

Those new mistakes

Oh oh, try everything

So we continue to live in the tension, and know that we always will. We learn not to be scared of the tension, but to find the grace for strength in the middle of it. We continue creating an awareness and understanding of what autism is for Liam and how people in his life can support him. And then we snuggle some more on the couch and just live our lives together, enjoying the big and the small moments and everything in between.

Dearest Liam,

There will always be a nagging feeling telling you that you can’t. That you’ll never. At every turn. And you can’t listen to it. You have to be ignorant to the pessimism-do not give in or give ear to it. Do not let yourself be overcome by the inevitable insecurities that have and will come. You were created for immeasurably more; for showing off kindness, love, courage, and fortitude, while teaching the world to take a breath and give somebody a hug. You are not marked by this world, or by its limits. You are marked by God and His limitless abundance for your life. Do not look to be the same as the person next to you, because you are not. You are different. And you are exactly who you are meant to be in your difference. We will forever advocate for you, push the boundaries for you and get out of your way so you can grow and be. You are you, and you are GOOD.

We love you to Uranus and back.

Forever,

Your Team Oakes

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A Beginning

We would never have started this blog if not for the previous nine months of our son’s life.

We would have welcomed Liam’s sister Molly into the world a week after Liam turned two in July and continued on our merry way. But at eighteen-months old Liam–our monkey, our buddy, our joyous little monster-man–started to change: he stopped doing things he used to do and starting doing things he’d never done before. The language he was learning slowly slipped away; our always-somewhat-shy boy began avoiding other kids and adults; eye contact didn’t happen as often.

So when Molly came home from the hospital, we began two new adventures: one to welcome our little lady into the family and the other to find out how to help our little man.

We’re starting this blog for a number of reasons. We’ve found that we need an outlet, somewhere to process the adventures of this season. There are people in our lives with whom we want to share these stories but don’t have the time, energy, or opportunity to do so. There are things we want our community to know so we can make it the best place we can for our kids. And of course, we want to share adorable pictures of Liam and Molly, like these two:

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So, what’s going on? Why is our son having such difficulties right now?

Right now, that’s a question without an answer. Autism? Maybe. Maybe not. Only time and response to therapy will tell. What we do know, however, is that Liam has a developmental delay (he hasn’t learned to do some things that are typical of a kid his age), he has a social delay (he doesn’t interact with other people in ways that are typical of a kid his age), and he has a language delay (he doesn’t communicate in ways that are typical of a kid his age).

Imagine that–someone in this family who isn’t typical.

In addition to these delays, we’ve discovered that he has sensory processing issues. Courtney explains sensory processing better than I, and she would tell you that:

We all have minimum and maximum sensory input levels. To make it through a boring meeting at work, some people need the minimum stimulation of tapping their pen or shifting in their chair;  at a busy party, some people avoid their maximum stimulation by camping out in the kitchen or leaving early. Liam’s minimum sensory input level for learning is higher than most others (ie. he needs more of it), but, at the same time, the maximum level with which he can cope is lower than most (ie. he overloads sooner).

As a result, the last few months of our lives have been filled with multiple early intervention evaluations, lots of phone conversations with a case worker, too much paperwork, way too many Google searches, and even more fear and worry. Let’s not forget sleepless nights and diapers (we have a four-month old, after all).

And we’re in the middle of it, friends. We don’t have answers, but we do have three therapy appointments a week and a lot of homework. We know a few things for certain, though: Liam is a smart, funny, kind, generous, loving, and joyous kid.  We also know that we are not alone. We have our faith, our family, and our friends surrounding us in prayer and support. Without all of these things, this process would be so much more difficult.

We’ll leave it at that for now. More to come.

Matt & Courtney