To Liam.

Dear Liam,

You did it, you made your way through your first two years of school!!  Your dad and I have been recounting all the ways you have grown in the last two years and it is overwhelming in all the best ways.

You had just turned 3, and finished a year of Early Intervention with 4 hours of therapy a week.

You didn’t have any words, and only a couple of signs to communicate.

You went to school 5 days a week, with 3 hours of therapy a week.

You learned how to follow a schedule and how to communicate your needs and wants.

You gained friendships and even a very best friend.

You learned how to use a device to communicate and were so thrilled to tell daddy and I about the friends in your class.

You began to build sentences with pictures on your device, and then words were quick to follow.

And then. You began to TALK. One word here and there and then the words came faster than we could have imagined.

And then you began inclusion into Ms. Becca’s classroom.

And today you graduate with words and sentences and friends and a very bright future.

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We can not say enough how proud of you we are, Liam. You have taught us what it means to be courageous.  We love you and are so full of pride that we get to be your parents. The best is yet to come.

Cheers to you, Liam The Brave.

XO,

Daddy, Mommy & Molly

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Grateful.

I’m not quite sure where to begin, probably because my emotions have the better of me right now and probably because so much has happened in the last two years.

We were so scared to send Liam to school with people that didn’t know him, for 5 days a week, 2.5 hours every one of those days. It seemed like a huge amount of time that he would be out of my care, with strangers. I arrived at the school parking lot 30 minutes early, apple in hand, waiting to pick up my buddy that first day of school.

Then there was a second, and a third and a fourth day. And before we knew it, Liam had made himself at home with three women and a classroom of friends. It’s hard to remember that little boy. He was l i t t l e and non-verbal. He had sensory needs that we were still figuring out. Eye contact was still not a strength of his, and he was still deciding if he wanted Molly to stay with us or not, so friends weren’t a priority.

But of course, he blossomed. Bravery will do that to a person.

He first started growing into his little body. Sensory needs came into check, then eye contact, parallel play, and even a very best friend. He had FUN at school, and he thrived in his new routine. He had bad days, days that all he wanted to do was talk to the fish in the hallway. But he carried on, as he is want to do.

Then came a communication device and then….W O R D S.

And a year and a half later came a new classroom and a new teacher with a beautiful spirit. A new best friend was quick to emerge, along with weather goggles and holding the flag for the pledge of allegiance with great pride.  And now, this brave little man of ours is fully integrated and will make classroom #6 his new home.

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Ms. Kristine, your sweet spirit and mothering instincts have always comforted us, knowing that you care for Liam as you would one of your own. I’ll never forget the image I have in my mind of the first time I saw Liam dance. You were right beside him, helping him with timing and having a GREAT time with him. My heart was so thankful. Thank you for your patience and guidance as you walked Liam through the early days of the transition, which we know wasn’t always easy. You are a good, kind woman and your smile will be dearly missed.

Ms. Saundra, we laugh about you and Liam a lot at home. We will always be grateful that you saw Liam and fell in love with him. He felt safe at school, and I know you played a large part in that. Thank you for the extra hugs and loves, he needed those and that helped him grow. Thank you for the dirty work you did and for encouraging Liam to do his best. Our hearts will have a Ms. Saundra shaped hole in them. 

Miss Sarah. You are an angel straight from heaven. Your heart of gold, your spirit of hope, and your actions of wisdom, grace, and faithfulness have made all.the.difference. You see each and every child that comes into your care and you have a vision for them and see that through as long as they are in your care. This is not.normal. I am confident that in 30 years we will look back and still talk about Liam’s very first teacher and the difference she made. THANK YOU for your bravery and persistence to care and make a difference. Thank you for loving Liam and equipping him to be his very best self. We will miss you and we pray God’s richest blessings in your life.

Classroom #13, you kids are our hero’s. We’ve seen your eyes, and we’ve seen your hearts. We’ve shared struggle and success. You’ve blessed our hearts and filled us up on the really hard days. You are our community of people. We see you and love you and believe the very best for each and every one of you. We will miss you all terribly. Thank you for being kind with and having fun with Liam. He loves you all too.

And thank you friends and family for your encouragement and kindness, prayers and well-wishes. Thank you for allowing us the space to process our hopes and dreams and fears. This journey is so much sweeter because of the community we share.

Onward and upward, with Liam leading the charge.

XO, Team Oakes

Why “God” is not the answer.

If you are a person of faith then we have all have a common ground, don’t we? We believe that good came down and brought hope and peace to a messed up world. We believe that everyone has access to that hope and peace if they want it. We also believe that hope and peace are our cornerstone, rock, and anchor.

Where our common ground gets muddied is when God becomes the universal answer for struggle or success. What’s the answer for that hurting person? “God”. What’s wrong with that person? “They don’t have God.” Why does that family have it so hard? “They must not pray to God.” Why is that family so blessed? “God”.

Now, we don’t (or at least I would hope not) say it quite that bluntly. But we may think it. Because surely, if something is wrong, or tension is felt, or doubt and the unknown surrounds us, or someone is rich and has a golden touch then God is either present because we’re good or He is not because we messed up. Either way, we walk in a belief system that holds us responsible for our own luck.

But fellow faith friends, where is the hope in that?

Matt and I were recounting conversations had with friends tonight who also has a son with autism. This particular conversation went something like this:

“There’s been so much growth in the last six months.”

“What do you think has made the difference?”

“I don’t know.”

Now, as a person of faith, and as a special needs parent who calls on every bit of hope and faith and strength from a power much greater than our own being, that answer is unsettling. We want the answer to be “God”. We want to say “hard work”.

But. We can’t. Do you know why?

Because that assumes that God isn’t listening to the other person’s prayers. Because that assumes that you work harder than someone else. And you know what happens when you ass u me.

Autism has grown us, shaped us and changed us. It has rocked us to the core of our physical, mental, and spiritual beings. We do it wrong. We sometimes do it right. We are not always graceful or forgiving or loving. But we are learning. We are growing. We have hope and it anchors us. We have faith and it comforts us. We have grace and it strengthens us. And we believe that God gives all of those things freely to whomever asks for them.

But we do not believe that God hears our prayers and not someone else’s. We do not believe that the consistency of our prayers enable God to choose what child with a disability gets to meet a milestone and who does not. We believe that doors have been opened for us and we did nothing to deserve it. We believe that Liam works his little tail off and hard work does produce fruit. But we also believe that part of living with a disability means that hard work looks different, and so does its fruit.

We believe that faith works the same way. And as a community, we need to acknowledge that and watch how quickly and mindlessly we answer questions with “God”. Matt and I give every ounce of credit for our hope, faith, strength, grace and love to God, because we are people of faith. But we have been changed. We can not, to the best of our ability, make someone else feel less than because we rattle off an answer to success as credit for something that we did nothing for.

Anchored hope. Inclusive grace. Merciful faith.

XO-Team Oakes

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

Living in the tension of autism, apraxia and faith.

Last week at church we watched a video of Andy Stanley talking about tension and how it relates to faith. The take away for us, was huge: Tension. I still can’t get it out of my mind. There are so many areas of life that I live in tension; battling this extreme from that extreme. I had never thought to put the word “tension” to what I was feeling in these certain circumstances, but that’s what it is. And I love putting a word to how I’m feeling. It makes sense of it all for me. I’m able to move forward, instead of stuck in this realm of wandering and frustration. I have tension, and that’s okay. It’s even normal! {who knew??}

Last weekend we spent a lot of time outside, enjoying our pre-summer weather. We took the kids to Lockwood and as we pulled up to the park, Liam quickly searched his device and pushed the button for “farm” and then gave us a big cheeky grin!! This kid loves him some animals! He could have jumped out of his skin, he was so excited to feed the animals and hear them make sounds. It was equally as exciting for Matt and I to watch him be so aware of his surroundings, wanting to share his experience with us. 
 
However, it’s moments like these that the tension of autism and typical development are felt. Like any other kid, Liam gets excited for adventure. However, when we are out in public, Liam is the buddy that is running back and forth 100x in the same, restrictive repetitive manner. Now clearly, we don’t care how he enjoys himself, only THAT he enjoys himself and his surroundings. That’s the real battle we deal with, trying not to care what other parents think, or what the workers think when Liam doesn’t do the craft in a typical manner. Do we come to his defense? Do we just love him, let him be and live our lives? It seems an obvious answer, and it is. But that’s the tension we live in. We FEEL that. We don’t care about it, but we feel it. And in that moment, we can feel the difference. 
 
Cue to today, when I pick him up from school and his teacher tells me that he said “cow” in class. Cow??? Just a random “cow”?? They are learning about farm animals this week and with all the excitement of last weekend, Liam had so much built up energy about it, out came “cow”! 
 
Now, herein lies the devil that is apraxia. At random moments, words like “cow”, or “igloo”, or “Liam” come flying out of his mouth, clear as day, and it’s just for that moment. So there is a lot of, what I can now call tension, in that as his parents. We want to scream from the roof top “Liam said COW”!!!!!, but then we are really frustrated for Liam because we see evidence that so much information is in that beautiful mind of his that just can’t get out. We are always thrilled about any progress, and we praise and encourage Liam, because he works so hard and he deserves to be celebrated for it, but man. 
 
So.much.tension.
 
Another angle of the tension we live with is faith vs. reality. We don’t mention our faith much on these posts or as it relates to Liam’s struggles because sometimes in the church world, we like to give platitude to struggle. We don’t like living in tension. We like clean lines, clear answers, no heartache. We don’t know what to do with tension. We feel guilty for it. We feel embarrassed by it. It doesn’t sit right. If I believe in God, how can I believe in pain and hurt? It’s ugly. 
 
We don’t have the answers to those questions, but for us, and as it relates to our journey? All we have is our faith. All we have is hope. We read the statistics. We hear what the doctors and therapists tell us to expect. But we also see opened doors, and culminating progress, and surprised faces on therapists when Liam blows past expectation. We see both. We feel both.
 
It’s not been easy the last few years to be full of faith and hope and fear and anger, all at the same time. We’re not use to that as people of faith. We are angry that Liam has to struggle. We are hopeful that he will live an independent life. We are fearful that something could happen to us before that happens. We have faith that God will open doors that need to be opened for Liam to get the help he needs. We are angry that Liam has to learn so many things that most of us naturally know. We have faith that God can turn ugly, frustrating, door-closing situations into something beautiful and unexpected.
 
And so we have tension We live it in. We celebrate in it. We cry and struggle in it. But we’ve learned that living in truth is freedom. And that freedom of truth and hope and grace is a difficult, but beautiful place to be. 
 
xo~Team Oakes

The Hidden Work.

Remember that time you were on hold with your insurance company for what felt like an eternity and once you finally got to speak to a human being you were bombarded with phrases like “diagnosis code,” “pre-approval of benefits,” “in-/out-of-network,” “family/individual deductible,” and “denial”? I have that phone call about every three weeks. 

One of the hidden parts of parenting a kiddo with a special need is how quickly you become an expert on everything related to your kid, including how to navigate an insurance company.

For example, you’ve probably seen pictures of Liam using his NovaChat speech generating device. The process of getting that device has now stretched into its sixth month and it’s not over.

We started in November when we got on a wait list to get an assistive technology evaluation. We had the evaluation and recommendation in January. Then we got on two more waiting lists. Four weeks later, we got a trial device.
After four weeks with that device, we filled out form after form, wrote report after report, and submitted 18 pages of documentation to the company who makes the NovaChat who would process the request and forward it to the insurance company.
Why? We had to prove that our non-verbal kiddo needed a speech generating device. Right.
Two weeks after that, we got our second loaner so Liam could continue using a device while the insurance company processed our claim (if you’re keeping track, this was waiting list number two from January and we were on it for ten weeks).
At the same time, every Monday I called NovaChat to see if they had processed our request. Five Mondays later, they had.
Then I started calling our insurance company and just this morning received confirmation that they approved the request and would send prior approval back to NovaChat in a few days.
But now our loaner device is due back on Friday, so I had to contact that organization and ask for an extension, hoping that by the time the second due date rolls around, the insurance company and the NovaChat company have sorted all the paperwork out, we’ve scrounged up our deductible, and Liam has his very own NovaChat 10 (and if you’re wondering, the device costs a whopping $5900). I’m hoping it’ll all be done in about another month, for a total of seven months and hours of work, phone calls, and filling out forms.
This is why non-profit organizations like IATP (Illinois Assistive Technology Program), Easter Seals, and TAP (The Autism Program) are so crucial because they help point parents in the right direction and give them resources to navigate the maze of funding sources for getting their kids the help they need.This is the part of parent a kiddo with #autism that is invisible, but absolutely necessary.
#autismawareness

What is Autism?

Much thanks to Nick Walker and his blog post at raisingrebelsouls.blogspot.com for this fantastic post on “What is Autism?”.


Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

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The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

Autism Awareness.

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Matt and I started to reflect back on our journey a few days ago as we began to prepare for Autism Awareness Month and the reflections are overwhelming in a really fantastic way.

Liam has come so far in 2 years, but these past 7 months have been mind-blowing. To think how scared we were to send him to school, to trust someone else to interpret and teach him, to let go of the control and give that to someone else that we don’t know, it’s laughable to compare that to the reality that stands in front of us. Liam has grown in ways he never could have had we kept him at home.

It’s so laughable because it’s nearly impossible to list all the ways he has grown. He is crossing things off his IEP like a champ. He now has a communication device and is doing a fantastic job learning how to communicate with it. He even tells us who his friends are and that he loves school family. (((heart-swell))

It is our hope that through sharing Liam’s story that we can encourage, empower and educate our family and friends about autism so that you can share in the journey of advocacy for those who need our help. As you all know, we don’t want to only be aware in April, but we want to be aware every day.

Imagine you are out in public and maybe see a parent having a difficult time with a child who is melting down. Or maybe you’re at Sapora Playworld and there is a child who looks like they are causing trouble and indifferent to direction. Or maybe you say hi to a little person and he or she looks right past you. It’s in these moments, that you can remember that ((maybe)) that kiddo struggles with something and isn’t being naughty. ((Maybe)) he’s autistic.

Not everyone can wear a stamp on their forehead that says “Hey! I struggle with ________”. We are all so busy in life that it is so easy to be in a rush and then judge and get frustrated, especially with little ones, but let’s do our best to give grace and lend a helping hand to those who seem to be struggling. I know that we would definitely appreciate a smile instead of some of the glares and frustrated or annoyed tones we get when we are out with our kids.

Matt and I are going to share some simple facts this month to help you understand in a more detailed way what autism can look like on a daily basis. One of our favourite sayings in the autism community is “When you’ve met one person with autism, you’ve met one person with autism.” It reassures us that Liam is unique in the way he moves through the world, and it also keeps us aware that other children with autism have different struggles and that we need different grace for them than we do Liam.

Thank you friends and family for your prayers and love and support. Knowing that we are not alone and that you want to hear how our brave champion is doing, makes the journey that much sweeter.

Here’s to Autism Awareness Month!

Cheers!

XO-Team Oakes

and just because he is so darned cute….???????????????????????????????

 

We do things this way.

I was late dropping Liam off at school because Molly threw up all over the floor (again). Instead of meeting his teacher in the gym, sitting with her while the other kids arrive, and walking together to their classroom, we met his class halfway down the hallway. His teacher said hello to him and reached to take his hand so he could join them. Liam darted around her and kept going. She looked at me knowingly, nodded, and said “We’ll see you guys back at the classroom.”

Liam and I went to finish his morning sequence: we looked at the fish in the aquarium outside of the gym; we went into the gym and sat were his class meets; we put the trains he was carrying into his backpack (there are now about 12 trains in his backpack); we stood up again, walked back to his classroom, and met up with his teacher and class at their lockers.

Everyday we do the same thing, and in doing the same thing we lay down patterns of expectations that make the world feel comfortable and manageable. Of course, because this morning we were running late I could feel myself getting stressed and a bit frantic, but I quickly decided to just go with the flow. And do you know what? Liam’s routine made me feel better. We said hello to the fish, we went into the gym, we put our things away, and we walked back to the classroom. Ahhh. To top it all off, I got to watch Liam march proudly into his classroom, wave to his teacher, and sit in his seat ready for circle time.

I still have so much to learn from this kid.