You, Me, and Advocacy: Happy Father’s Day!

I’m so pleased that Autism Speaks asked me to write for their blog for Father’s Day. I decided to try and address three ideas: Continue reading

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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.

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.

Ode to a Therapist.

Liam and I drove into Arlington today to meet his new occupational therapist for an evaluation and to add a second session with his speech therapist that he sees on Mondays. A new clinic, a new journey in the fight against apraxia.

On the drive home Liam conked out 5 minutes into the drive so I was alone with my thoughts. I couldn’t help becoming overwhelmed with gratitude for the therapists that God has brought into our lives. Each one specifically drawing things out in Liam in a way that he responded to. It’s more than we could have hoped or dreamed of.

And so this:

Julia, You were the first therapist to come into our lives and you immediately saw Liam. You saw past the behaviours, the tantrums, the inability to socialize. You saw his interests and his strengths and only focused on those. You walked Matt and I through the red tape of EI and encouraged us to fight for everything we could. You walked us through a diagnosis and a school evaluation. And every step of the way, you saw Liam. You saw us and you brought love with you when you came to 808 every week for 10 months. We are so happy we get to see you at Fairview, and that you are still a part of our lives. We really do love our Julia.

Christina, You fell in love with Liam from the moment you started evaluating him. You were the only one in the room chuckling at his stubborn streak. You saw his sarcasm and thought it was awesome and funny and naughty. You had a full case load, but before the evaluation was done you agreed to come to our house to do consults and then as soon as a spot opened up 6 weeks later you sneaked him in. He gave you a run for your money and you still came back every week and laughed at him. You always commented on how much you enjoyed his personality. I can’t tell you how much that means to parents of a child with a social disability. You enjoyed him. It brings tears to my eyes to type it and know it. Thank you. You are going to be a really fantastic mom.

Betsy, Oh Betsy. You GOT Liam. You got his sensory. You taught from experience. You gave Liam so much room to grow and make peace with himself. You taught Matt and I how to make accommodations for Liam’s need of space and input. You encouraged us to listen to our gut. You explained one of Liam’s biggest struggles in such an empowering way. You made Christmas possible for us. You got us to the point of “not needing you anymore”. That was a sad day. And a happy day. You are one of our favourites. Thank you.

Karen, We’ve only been together for a few months, but your connection with Liam was instant. Within 5 minutes you came over to us and gave us more information and insight into Liam’s speech and related sensory delay than we had in 10 months. Your 18 years experience was a lifetime of Christmas presents for the Oakes family. Liam’s progress is amazing and we are so thrilled to see you twice a week. We know you’re going to get our monkey talking. And watch out when that day comes. There won’t be enough kleenex or champagne in the world to match our tears and joy.

Kelly, You are our newest friend and we are so pleased. You have such a kind heart and playful spirit. You had so much fun playing with Liam today. You were patient and giving and encouraging. You can’t know what that means. We look forward to our Friday’s getting our sensory fine tuned and eventually, hopefully, learning to love a fork and spoon.

Therapists, you are worth your weight in gold. We are FOREVER indebted to you. We love you and pray God’s blessing in your lives in the richest of ways.

XO, Team Oakes

Change and Frustration and Hope and A New Chapter.

{Change}

This summer as Liam grew in a lot of areas and aged out of the Early Intervention Program, Matt and I gave a lot of thought of where we were a year ago and where we are headed.

There have been so many ups and downs and ins and outs this last year. We started the EIP and despite the long lists for every therapy available, by October Liam was having speech, occupational and developmental therapies every week. Then we met a horse over Christmas break and 2 months later found a spot in the Hippotherapy rotation for another speech session added to our weekly routine.

And in the months to follow:

Autism Diagnosis.

Fairview School Evaluation.

Fine motor skills acquired.

Pointing, Listening, Receptive Listening. (Check, Check, Check)

Parent directed: Hi-fives for family, hugs for grandparents, hugs for friends.

Social Cues acquired.

Non-Parent directed: Hi-fives for family, hugs for grandparents, hugs for friends. {BAM!}

Sunday School and YMCA participation.

Sitting for 45 minutes in therapy without the use of a chair or prop to keep him centered!!!!!!!!!

Our Buddy has learned so much since last September. His bravery and courage to work against what he can’t even comprehend as set-backs is astounding. He has come so far and we have to keep this in mind.

Especially because we have so far to go.

{Frustration}

Apraxia, aka. &*^%.

Apraxia is the new curse word at our house. I can’t begin to explain the difficulty and overwhelming weight of trying to teach Liam to speak. He has amazing speech therapists that teach us how to work with him on a weekly basis, but this is not homework we can complete in a week’s time. We don’t have a time frame. We have drills and hope that if we do it enough, Liam will have words. And we hear words pop up like popcorn, but just like that, they’re gone again.

Patience might as well be a curse word around here as well. We want to hear Liam speak. I mean, it’s not that hard right? He has speech therapy twice a week?!? COME ON. Who isn’t doing their job?? (looking around) Why isn’t this working already??

This is the devil that is apraxia. What takes a typically developing child 10x to imitate and begin using a new word could take a child with apraxia 100x. ONE HUNDRED TIMES.

I’m sure I’ve said MMMMMMMOOOOOORRRREEEEEEE? 16 Billion times. I’m sure.

{Hope}

16 Billion times. Eves. We’ll do it 16 trillion if that’s what it takes. We’ll fly to the moon if that’s what it takes. I will dance on my head in the middle of the city square if that’s what it takes.

Regardless of how heavy hearted we can feel for Liam’s speech progress, our Hope is anchored firmly in God’s promise for Liam:

“I have plans to prosper you and not to harm you. Plans to give you a hope and a future.”

{New Chapter}

Liam starts school on Wednesday. My baby, My lamb, My monkey-man starts school on Wednesday!!!!

5 days a week Liam will go to school for nearly 3 hours and have really good training in an autism-contained classroom with the city’s best autism focused teacher. He is ready. He is going to grow leaps and bounds.

BUT.

We are scared to drop our non-verbal son off to people we don’t know, on a campus far from home. (it’s only a 10 minute drive that might as well be 6 hours) We are scared that his speech is not progressing the way WE think it should. We are scared. scared. scared.

BUT.

WE HAVE HOPE.

And that my friends, has to be the end of the story: HOPE.

H O P E

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Liam Bear,

You are going to hate school. But mostly you are going to love school. You are going to love driving off with Daddy every morning. You are going to love shaking your new friends hands. You are going to love having your very own locker. You are going to love your teacher, Ms. Sarah. You are going to love snack time with your new lunch box. You are going to love when Mommy and Molly come to pick you up. And you are going to love learning new things.

You are brilliant and courageous and brave and loving and kind and curious and funny. You are going to do great things.

Go get ’em tiger.

Love your Mommy, Daddy and Sister. XO

Autism Awareness & an Update

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Our meeting at Fairview school could not have come at a more appropriate time. The day after World Autism Day. Matt and I were nervous as we tried to keep our minds clear, but we had questions prepared to make sure that we were advocating for Liam in an appropriate manner.

Nothing could have prepared us for this meeting. Not the packets that came. Not the 4 therapy sessions a week for the last 7 months. Not the autism diagnosis. Nothing.

The only way that we were prepared was our answered prayer for wisdom and clear minds. We were able to sit around a table with another set of professionals and discuss the process of Liam entering school. We were quick to ask questions and made sure we understood the process. We made sure that they knew that we are parents that are present and will advocate for our son. Success.

Then we went into the gym to observe 2 autism classes and 1 typical class playing.

I don’t know how to describe what happened next.

To see children with more severe cases of autism and children without autism playing together was more difficult than I imagined. Liam has had many opportunities to play around typically developing children, but this was different.

I instantly felt shame for feeling so hopeful for Liam. I felt overwhelmed with compassion for the parents of the children with a more severe case of autism. And in all honesty, I felt angry for the difference of the kids with autism {Liam included} and those who were developing in a typical manner.

We have a brilliant support system. We have people that love and care for us and Liam, and because of that our breaths have never been taken away the way they were today.

As I began to process what we saw today, I realized that this is a small part of the Autism awareness that the world needs. The world needs our stories. The world needs help understanding. Some journey’s are easier than others, but the world needs to understand what autism is, not to dismiss it, and to ask for change on the behalf of others.

We are full of hope for Liam. While we now understand that this battle is a bit more challenging than we knew before, we have hope that Liam will be successful.

However. There are families that can not say that. There are families without the insurance that affords them the therapy to make a difference in the outcome for their child{ren}. There are families that can’t take their children anywhere because they are afraid of what the public will say to them. There are parents who never leave the house and are depressed and therefore not able to advocate for their children. They need our help. They need our understanding. They need us to help them when they are out in public. They need our prayers. They need hope that anchors their souls.

So how can we help a parent of a child that has autism? Be kind. Be helpful. Listen. Ask questions. Be an advocate for change.

We don’t know where Liam will be this fall. We don’t know what kind of classroom he will be in. But we have hope. We have resolve. We have certainty that this fall is only a small piece to the very big picture in Liam’s life. Please pray with us that we would have continued wisdom and guidance and creativity to give Liam the best possible surroundings to lead him on to success.

Thank you for your love and support. We have an amazing community around us and it’s our desire that everyone could have that as well.

XO-Team Oakes

PECS

Liam made another big step today: he accomplished phase one of PECS (Picture Exchange Communication System).

What that means is this: Using Molly’s Blueberry Puffs as an incentive, Liam independently and spontaneously selected a picture of the sign language image for more, brought it to Courtney, and exchanged the picture for Puffs. He did this at least ten times in a row after I showed him how to do it three times.

Why is this important? It’s the first of six phases in teaching Liam to use a functional communication system that allows him to communicate his wants and needs on his own terms and will be a bridge across which he can learn vebal communication.

I wish you all could have seen his little man face light up as he realized that he could pick up the picture from the other room and exchange it for what he wanted. A few times he even put the picture to his lips, seeming to know that this was a word, that words come from mouths, they are received by others, and then things happen!

I’m so proud of my little dude. Way to go buddy!

Matt.