Saturday, August 6, 2016

Autism: It's a Marathon, Not a Sprint Race

This summer marks the 11th anniversary of our son Noah’s diagnosis and I have to admit I never thought I’d still be talking about Autism. Back then my reaction was one of relief...finally we have a name -- I know what I'm fighting.  Now, I wake up with a little less gusto. For those of you who are runners – I’ve hit The Wall.  In running, the wall typically refers to a point when a runner’s energy levels plummet, breathing becomes labored, and negative thoughts begin to flood in.

And it’s not just me, my Autistic son is tired too.

“Mom, why did God make me this way?”
“I’m so stupid!”
“I should know this stuff by now!"
“I hate myself…I wish I were dead.”

His feelings go beyond tween angst. Which by the way –there is no shortage of. It seems completely unfair he is delayed in so many areas except puberty – that one is right on time! 

“Look Mom! There she is!”
“Mom, I don’t think she likes me anymore.”
“Mom, I’m afraid I’m going to be alone for the rest of my life.”

When we first received the diagnosis, he was hitting some milestones, but being the type A person that I am – I thought it meant we just needed to do work harder…


But if hard work were all it took, we’d have licked it years ago.
In the beginning, parenting our son included all the things you’d expect to do - Changing diapers, establishing routines, providing a healthy diet, play and exercise
For us it also included:
* Brushing and joint compressions -  10 times a day
* Listening therapy  - twice a day
* Swinging therapy – twice a day
* Systematic desensitization food program –  twice a day
* Managing seizures (30% of Autistic children have a seizure disorder)
* Dealing with atypical sleep patterns (sleep difficulties are common among Autistic children and our son regularly started his day at 4 am without a single nap).
* Potty training…not for days or weeks or even months, but years (Autistic children are among the most difficult population to train)

Our son struggles with
a host of learning challenges including expressive language, sensory processing, hand-writing, reading comprehension, and social skills – meltdowns are still a’plenty, but the big hairy challenge which covers every inch of his being is anxiety – it’s the cornerstone which links kids on the spectrum together. It’s part of their fabric and not something one can simply medicate away.

To demonstrate how debilitating it can be I’ll use the old light bulb joke – How many autistic children does it take to change a light bulb?

My guess is you’d be hard-pressed to find one to change anything if it is not already part of their daily routine.  In fact, it’s likely their first response would be ‘Why?’
This may seem like a silly response but that’s just because your typical brain hasn’t considered all the options like someone with an Autistic brain.
For example:
Outwardly the light bulb looks the same as it did yesterday. There seems no reason to change it. On an anxiety scale of 1 to 10, people with Autism rock a Spinal Tap 11.  Any change, whether trying a new food, rearranging furniture in a room or taking a different route to school sets off the fight or flight response in them.
If the light bulb doesn’t work…just go to another room. No matter if it is inconvenient or not even a suitable solution to a problem – someone with Autism will always prefer the path of least change. Because what if they try to change the bulb and mess up? What if they break it? Changing a light bulb could be dangerous…what if they get hurt? Better to be safe than sorry. Anxiety over choosing a new bulb from the dozens of different watts and styles available isn’t worth it either…someone with Autism would likely prefer to just buy a new version of the old lamp. Making decisions, whether it’s what to eat for lunch or what to wear to school can cause panic which is why many people with Autism may eat the same things every day or treat clothes like a uniform – selecting similar styles. Our son eats the same breakfast every morning and his uniform of choice is a Star Wars t-shirt and athletic pants.

Hard work is only a piece of the puzzle.

Autism is not a sprint race…it’s more like a marathon.

I have to remind myself at least once a day that worrying over the fact he still can’t tie his own shoes and has difficulty writing more than his own name – won’t help things. While we run a very tight ship, Noah’s needs always seem to outweigh our budget. We are so grateful for Action for Autism’s willingness to help us fill in the gaps – especially during the summer months. Their support has kept our son from losing skills during the 12 week school break while also gaining new skills…like the summer his speech therapist taught him all about idioms. Or, the time his camp counselor convinced him to try roller skating.  Another year, he was among the few campers to climb to the top of a 30 foot ladder. Sometimes in the day to day, I can feel exhausted by the gaps or what feels like snail-pace progress he is making in areas of social skills and problem-solving  – only to stop and look at the big picture: Our son is 13 and nearly as tall as me. He still has Autism and more than his fair share of learning challenges, but he’s also bright, funny, and empathetic. He tells me he “enjoys my company”. He has a keen musical ear and has been teaching himself to play the piano by watching youtube videos.
Eight years ago we connected with Action for Autism and their support has been invaluable for our family. And while our son has made a lot of progress, we still have a long way to go.

It’s a marathon…

We need more time.

Children with Autism need more time - to learn skills that most of us take for granted, to discover their talents, to become contributing members of our society.

If it takes a village to raise a takes two, sometimes three villages to raise a child with special needs.  We are so thankful for the wonderful team of caring people at Action for Autism. We are thankful for people like you - your donations are helping families like ours obtain access to therapies and educational resources we may not otherwise be able to afford.  Thank you for believing a family's financial standing should not determine a child's life potential. 
For those of you who have been supporters of Action for Autism since the beginning – I want to encourage you to continue in your efforts. You are making a difference. 
A few years ago I wrote this poem called The Rules We Live By. While many of “the rules” still apply in our home – I’m happy to report, we are breaking some, too. Our family motto is and always will be to never give up.
And we won’t – how can we - with supporters like you!
If you can, please consider making a donation to Action for Autism for their upcoming Family Fun Walk. Type FELGENHAUER in the comments section. 

Thank you.

The Rules We Live By
Always three things on his plate
Don’t let the foods touch.
Always round meals chosen
Don’t serve spaghetti.
Always Star Wars topic of speech
Don’t talk about sports
Always few friends and invites.
Don’t bring up recess.
Always struggles with recall
Don’t ask about his day.
Always concrete with his thoughts
Don’t expect him to read between the lines.
Always Velcro fasteners selected
Don’t ask him to tie his shoes.
Always focused on the details
Don’t ask him about the plot.
Always rises before dawn
Don’t stay up for Letterman.
Always answers honestly
Don’t forget to wear thick skin.
Always pure in his heart
Don’t dash his superhero dreams.
Always loving hugs me freely
Don’t forget to pinch myself.