Monday, June 12, 2017

The Mystery of Autism

Your brain is a mystery to me.

The way it works confuses me.

The way it functions frustrates me.

Sometimes when you are deep into a meltdown, I picture myself like Mrs. Frizzle and her class on the Magic School Bus. Do you remember the episode... you know the one we have watched it a thousand times.... the one where Ralphie gets sick so Mrs. Frizzle turns the bus, herself, and the class into the size of a pill?

Remember, she had Ralphie swallow the pill, and they move throughout his body.

I want Mrs. Frizzle to turn me into the size of a tiny pill... so I can understand the mystery of your autism.

How do the neurons and synapses function in your brain?

I want to be inside of your brain ... I want to hear what your brain says to you.

I want to hear how loud it is.

I bet that it is deafening. 

I want to hear it repeat the same message to you.

This is different.... I don't like different... Different is scary... 

This is different.... I don't like different... Different is scary...

This is different.... I don't like different... Different is scary...  

Over and over again.

I want to feel what it like to stim.  I secretly imagine that it must feel like the best foot massage in the world.

I want to feel the control it has over you.

I want to know why stimming is more important than watching tv, playing a game, or reading a book.

I want to see all the images that float in your head. The sight words that pop in and out of your brain, the brand logos that you can pick up on from a mile away, and the numbers you have memorized.

I want to learn how the routines start and why they are so necessary. Ones like, "I only play board games during therapy, I do not play game board games with my family."

I want to fix the bridges that aren't connecting, so it doesn't take you years to learn the simplest of tasks.

I want to know why some days you can communicate anything and everything that pops into your brain, while other days you can hardly tell me what your day was like at school.

I want to hear what a song sounds like to you, and feel the complete enjoyment that it brings.

I want to learn how your memory works. I want to know how much you really remember and how far back it dates too.

I want to know how you are able to remember and recall the smallest of details of our daily events... even though it doesn't seem like you were engaged at the time.

I want to understand what is like to be an individual on the autism spectrum.

So I can be a better parent for you.




xoxo - The Chaos Manager 



Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!



Monday, May 29, 2017

Calm Hands is Just Fine With Me

Fidget spinners are taking over households and classrooms all across America. In case you have no idea what I am talking about, a fidget spinner has a ball bearing in the middle with three spokes on the outside and a person takes the spokes and spins them around. The fidget spinner craze has taken off as fast as Beanie Babies, pogs, or slap bracelets did for the kids growing up in the 90's (like me).


If you have a school-age child or work in a school, chances are that you hear and see these things swirling around all day. They have even made their way into board room meetings.

The fidget spinner is advertised to help people with Autism or ADHD relieve stress.  People everywhere are whirling these things around and they are equally loved as hated. Some adults, parents, and kids swear by using fidget spinners. They report that by using a fidget spinner they are able to concentrate for longer amounts of time and have less overall anxiety. Others think that the fidget spinner is nothing more than a "toy" that provides nothing but distractions for the person using the device and the others around them. 

Both camps have come out strongly for or against this newest fad. Personally, I feel that for the majority of kids using fidget spinners they are just a toy. However, for the right kid who is taught how to use it appropriately, it could be very beneficial for them.  

However more importantly what has come out of the debate is a bigger conversation around self-stimulatory behavior or more commonly referred to as stimming. 


Stimming can look like ... 

Hitting an object in a hand back and forth 

Hand flapping 

Random sounds or phrases repeated over and over

Watching things spin 

Toe walking 

Head banging

Visually tracking objects 

Opening and shutting doors 

Turning on and off light switches 

Etc...

There are many high functioning adults on the autism spectrum that will say if there is one thing you should always allow your child on the autism spectrum to do, it is stim. Advocates of the neurodiverse movement will say restricting your child's ability to stim will cause long-term negative effects on your child.  Saying and enforcing things such as, "calm hands" is a form of abuse. They say stimming is needed to reduce daily stress. If there is one message that I have heard from each autistic adult I have learned about, it is not to restrict their stimming. 

Here is the problem for me as a parent of an autistic child ... 

Stimming is Mr. M's kryptonite


When Mr. M is allowed to stim for long amounts of time without a task given to him, he slowly fades away from us. I describe the feeling that you get after binge watching Netflix for the entire day. Your brain is functioning but it isn't moving as sharp as it could. 

If his stimming is left uncontrolled it slowly builds up and creates behavioral issues.  

His stimming removes him from social interactions.

His stimming takes precedence over everything.

There has been one sentence with whoever works with Mr. M  that I hear over and over again, "When Mr. M can focus he can do whatever is asked of him, but it is very hard to get him to focus."  

Stimming controls him. 


So we try to control the stimming. 

We say "calm hands". 

We remove objects from his hands. 

When we see he isn't listing, we ask for simple motor commands to regain his attention. 

And no we don't have a fidget spinner. 

Maybe that is a good thing ... and maybe it isn't. 

I don't know. 


However, what I do know is that when he has a person restricting his ability stim he is more engaged.  

He will communicate. 

He will socialize. 

He will play. 

He is happy.

So here I am as a neurotypical adult trying to learn my son's autistic brain. 

Trying each day to make choices that are right for him and using language and a therapy that many autistic adults hate. 

Hoping that one day Mr. M is able to control his stimming. 

Hoping that one day Mr. M is can communicate what it feels like to be him.

Hoping that one day it can be an advantage for his overall wellbeing.

Hoping, that once he does gain control of his stimming, he will be able to use things such as fidget spinner or another device that provides proper supportive sensory input. 



The perfect picture for the roller coaster of special needs parenting : ) 


xoxo - The Chaos Manager 

Sunday, May 21, 2017

Fifty Shades of Gray Autism Style

The G version ... Get your mind out of the gutter, my parents and more importantly my Mother in Law reads this thing!

As I have gotten older, I have realized more and more that life isn't just black and white and instead it is full of many gray areas. Messy, wonderful, complicated, and beautiful gray areas.  Gray areas that make you think, weigh out the pros and cons and grow as a person. Gray areas where there are no winners or losers. Gray areas that you do not know if you have made the right or wrong choice until long after the decision was made. 


One gray area for me is the biomedical approach towards Autism therapy.


Right after Mr. M was diagnosed, I became consumed with the idea of curing him. I read books written by mothers who claim to have cured their child such as A Child's Journey Out of Autism: One Family's Story of Living in Hope and Finding a Cure by Leeann Whiffen and started working with a Defeat Autism Now (D.A.N.) Naturopathic doctor. 



I read blog after blog where parents gave their personal testimonials on the naturopathic approaches they used and the success they achieved for their children. 

Children who had no verbal abilities that after trying a specific diet such as Gluten Free/Casein Free or the Gaps Diet were suddenly talking in full sentences. Children who never engaged with their parents were on the floor playing games of Candy Land. Children who by eating foods specific to their diet and using other biomedical interventions over time lost all signs of being Autistic. 

I wanted that. 

So, we did many rounds of testing, biomedical interventions, special diets and supplements for two full years and we saw no direct benefit from these interventions.

Zip ... Zero ... Nada ... Nilch ... Not a one. 

So we stopped. 


This weekend there is a biomedical conference called Hope and Healing occurring about a half and hour from my house. I really haven't given much thought about our biomedical past until a friend facebook messaged me to see if I had heard about the conference. I said, "No and after looking at the info, it seemed like the Doctor hosting the conference was a fraud." 

For the record, Dr. Bradley Rauch, the chiropractor that is hosting the conference in Stowe, VT this weekend seems to me like a total fraud. The proceeds from this conference are going to two charities that aren't autism related. Rauch talks about his experience volunteering with Hati as a reason for the conference which seems completely out of context, and the whole thing just gives me an odd vibe.



But then I started thinking again ... about those parents and their testimonials ... and the thought of further increasing Mr. M's skills and there is part of me that wants to go.  

The gray area. The unknown area. The what could be area.


See, I don't think the parents are frauds. Why would they write stories about their children success? Why would they write blogs with no monetary gain? Why would they write Amazon reviews with no kickbacks? Who are the parents whose chose biomedical interventions that have changed the course of their child's life?



Where are they in real life? I want to talk to a mom who has made this choice and has seen first hand the benefits of these biomedical interventions. 


While the host of this conference might be the 21st-century version of a snake oil salesman, there has to be a reason why so many parents want to tell their truth, and I believe their truth. 


So then I start to think ... I go back to that gray area. 

Maybe we should go back? Maybe we should look at something else? Maybe we didn't do the right things last time or maybe we just didn't do it right? 


Maybe ... maybe ... maybe.


Then I also think about the biomedical approach and what it is really saying, that Mr. M is flawed. That he needs to be cured. That the way that his brain currently works is wrong.  That he needs to think, act, and behave like a neurotypical person. That because he is autistic he is less than. 


And then I think, NO! 

NO, NO, NO!

I don't want to start to change the wiring of his amazing brain. He is perfect, innocent, sweet, charming, smart, funny, and pure. 

However, then I think about all the nuances that his brain holds so tightly to. The anxiety, the frustration, and the rigidity that his amazing brain also gives him. 

And then I start to think .... maybe I should try something else.

But then I start to look at the pieces of his brain like pedals on a flower ... and if we start picking off a pedal here and a pedal there would we loose all the beautiful pedals and be left with just a stem? 

So for me, the whole thing is just gray. I wish I knew what the right choice was to make. I wish that I knew that if I chose to go back to a biomedical approach what the outcome would be. 

I wish, sometimes I could be more solid in my convictions. 

Then maybe this area wouldn't be so gray. 



xoxo - the chaos manager