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.

What is Autism?

Much thanks to Nick Walker and his blog post at 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.


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.



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!


XO-Team Oakes

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