While out shopping yesterday, my son (6 years old with autism) said something that is so profoundly brilliant that it took a little while to realize the whole scope of it.
You have to realize that this is a boy who really has no concept of the value of money except that we parents make it and use it to buy them stuff. He doesn’t really get that some things can cost more than others or that sometimes we just don’t have the money for what he wants.
Award winner for Ambition
So what did he say?
“Stuff that we need shouldn’t cost anything because we have to have it and that way, we’d have more money for the stuff we want.”
Simple right? Makes sense too. I mean, you start to think about all of the homeless people, the hungry people… the people who need basic necessities that simply can’t get it because they have no money. They should have these things because they need these things. We all should.
The things we want, now that’s what we need to work for. That’s what we need to earn.
The things we need, we deserve… simply by being human. The things we want, we have to work hard to deserve.
So it stands to reason that, if society could be revamped, from the ground up, the things we all need should be made available to everyone while the things we want would cost money.
The problem, as my wife and I saw it, is that most people don’t really know what they need. For example, most people think they need their cell phone. They don’t.
Many women think they need a good hair-do and make up while many men think they need access to sports or a fast car/big truck. They don’t.
It’s a bit of a warped mentality that we’ve all become accustomed to.
But I think that a system as my son envisions it, would really help to put things into perspective and firmly place that dividing line between needs and wants for us.
Another problem would be that those people that provide the shelter, food and other basic needs need to be compensated for their hard work… but with enough thought, I’m sure that could be worked out.
Anyway, I’m not trying to work out the foundation for a new society, I’m just demonstrating how sometimes the most simple, yet profound, thoughts can really get you thinking.
And it came from, of all the unlikeliest of places, my 6 year old son who really has no grasp of needs vs wants nor that of money/value on things.
I started out wanting to write about changes that I’ve noticed in Mike, and how this, to me anyway, signaled a positive step forward in his journey with autism. On further reflection though, it reminds me that although he has taken some steps forward, like everyone else, he might very well encounter some obstacles along the way.
Mike is 12 and is entering puberty, and he is noticing the changes in his body. We too have noticed how he is starting to sprout pubic hair and has begun to notice girls. My wife laughed hysterically when, upon discovering said pubic hair, he exclaimed, “I’m turning into a sasquatch!!” In the past six months we have noticed that he has asked more than one ‘girl’ to kiss him, including his married after-school teacher among them. So yes, we are kind of freaking out about puberty.
Perhaps we were unglued because his two older brothers were (comparatively) less demonstrative in noticing the fairer sex upon entering puberty. Or maybe because autism did not give Mike a ‘filter’ that neurotypical children have when expressing themselves; he just says what’s on his mind. As parents of an autistic child, any verbal expression (appropriate or not) is like gold; we just want to keep hearing it. So we have begun weaving social stories about girls and kissing and appropriate behavior. Personally, I hope this works for at least a little while; I don’t think I’m ready to give Mike ‘The Talk’.
Puberty, in and of itself, may have unintended effects on his developing brain and cognitive ability. Research has shown that there is an association between fetal testosterone and autistic traits. To many in the research community, it is not simply a coincidence that a diagnosis of autism is made four times more often in boys than in girls. To this end, I worry about what effect the influx of testosterone during puberty will have on Mike. Could it ‘worsen’ his autistic traits? Could it blunt his cognitive development? Could it make him more aggressive?
These are certainly possibilities that tend to keep us up at night, but are comforted in part by knowing that Mike is learning to be empathetic, and has a degree of self-awareness. Just like noticing the physical changes in his body, he knows when he becomes angry with others, and is apologetic and often embarrassed by it. He readily takes note of babies and younger children who are crying and wants to “make them happy again.” He has initiated greeting our neighbors, and has asked to play with some of the neighborhood kids.
Big change.
Not all of change is bad per se; his verbal and comprehension skills have markedly improved in school and his brief chats with us have slowly progressed to often conversational proportions. His teacher confided that she is thinking of submitting him for consideration for a self-contained class in a General Ed school (otherwise known as a satellite program). Mike has shown he has the capacity to do more academic school work, as opposed to being vocationally-inclined only. With this thrilling possibility brings change, and change always brings the possibility of failure and regression. Mike has thrived and become transformed at his current (out of district) school for the past three years after languishing in-district as the Special Ed department struggled to develop its resources and plans. The thought of returning him to a similar setting is tempering our enthusiasm but reinforces our feeling as parents that our son has more possibilities open to him now. I have quietly begun to think that Mike is inching toward the higher-functioning end of the autism spectrum.
His desire to someday become a paleontologist/chef/zoo keeper/book writer is not so far-fetched after all. Big change indeed.
It seems Mike is poised and ready for bigger and better things, despite all the pitfalls inherent with puberty. My little boy is growing up. I hope his mom and I are ready.
I have a bit of a booming voice, it can get loud… so when my dog is particularly bad or my boys stop listening and I raise my voice… it gets attention. I’m not yelling or screaming out of control by any means, it’s just… raising my voice is… loud.
The problem with this is that my son Cameron is especially affected… since a sudden loud voice like that can send him running to hide under some blankets.
At least when that happens though, it’s instant. I’m done, he’s done… we go about our day. No worries.
The real issues come into play when it’s not done and over in an instant.
A positive is a negative
Cameron shows some pretty amazing resilience sometimes when it comes to being able to handle himself. Yesterday was a perfect example of this.
My boys were invited to a birthday party at an indoor playground where kids were free to just go anywhere and do anything. There were games all around, flashing lights and a huge network of netting and tubes to climb and go through.
A child’s paradise!
Cameron is in green
When we arrived the place was full which meant the entire place was just a wall of noise. An occasional crying child somewhere in the distance, lots of screaming and a bit of laughing mixed in.
Cameron and his little brother jumped right in and played just as any child should… it was quite nice to see. They had a lot of fun.
But I knew, I just knew that this was going to be too much. It was too much for me and I wasn’t right in the middle of it.
See, Cameron won’t just have a meltdown right in the middle of the place… instead, he’ll store all that pent up energy until he’s back home where he feels safe.
So, even though he can have a great time and handle himself quite well for quite some time… it comes with a price.
Solving the mystery
At first, this presented quite the challenge for us as parents as we’d have to figure out why our little guy was completely out of control for a day or two. To us, it would seem completely random that he’d just be really moody, extremely hyper and very much unwilling to listen to us or do the things we asked of him.
But it wasn’t random. It was actually very much a cause and effect situation (which most things are), where the effect was hyperactivity, irritability and lack of control… and the cause was over stimulation that no one had noticed.
What would happen is that my son would go to school and they’d have an assembly, or go on a field trip, or a party like the one I just described… something somewhere would happen and even though my son had a wonderful time and everyone thought he was just the most perfect little boy… there was actually a time bomb building up pressure, waiting to get home.
The biggest thing is, it’s entirely up to us as parents to solve that sort of thing too because no one else will ever see it. They only see the boy that holds it all together during the day.
Over time, I’ve come to recognize the clues though. For example, at that birthday party, when it came time for everyone to sit and have cake, all of the kids were excited.. but only Cameron bounced in his seat. Literally.
He had so much pent up energy in him, beyond what the other kids had, that he quite literally could not keep his butt on his seat. And while he was still quite happy and having fun, I knew that if he can’t keep his butt on his seat even after I ask him too, that it’s a sensory problem that’s been building up.
Something he just has to do for himself
This is one of those cases where, we as parents, could decide to just not go to those places so that we don’t have to deal with the after effects but that’s not very fair to him. He loves going to those places and doing those things.
We could read every book we have and talk to every professional we can find and try to set up systems and procedures to deal with the after effects at home in a constructive way.
But ultimately, this is something that he has to learn to deal with. I can help to guide him as best I can, help to calm him, focus his energies somewhere… but this is something that is likely to stay with him for the rest of his life.. unlike me.
And to be honest, I think he’s starting to get it. When he gets home, he’s still moody and hyper but he’s learning to take time for himself to go off and make believe something on his own. His little brother gets mad sometimes that he can’t go be with his brother but it’s obvious that it has to be that way.
When he’s given his space and allowed to get that energy out through pretending his favorite video games, pokemon or bey blade battles… what ever it is he needs to envision… it works for him. At least usually.
It’s great that he’s able to do that. And it’s even greater that he’s able to put it all aside in the moment and be “just one of the kids” when there is fun to be had.
It’s been hard for us to figure out and to deal with… I’m sure it’s been even harder for him… and we’ll always get people asking questions about it as it’s not quite ‘normal’… even by autism standards… but it is what it is and it works for us.
We went to the Friday evening show of The Dinosaur Petting Zoo at the Tilles Center last week. We had to get their early to pick up our tickets for the general admission show; showing up at 4pm for a 5pm show. When other families started arriving, my wife’s first comment was “uh oh, it’s a little kid’s show”. Indeed, the overwhelming majority of children showing up for this puppet show were under 8 years old. Mike, our youngest of three and bona fide paleontologist-in-training, is 12 years old.
As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.
Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.
You get the idea.
So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.
As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.
Independence, that place where you can have chocolate for breakfast every single day if you want… but that you know you shouldn’t. It sounds simple enough for those of us who just do it but having a child really has a way of putting it all into perspective.
This month, we’re taking the first steps, which seem so very trivial and yet, so huge.
First of all, we’re encouraging them to do some things on their own.. they can both get dressed on their own now, which is a great first step. Now we’re pushing forward with having them brush their own teeth, dry themselves after a bath and little things like that.
But now, the big one… getting their own juice!
This is a very scary one for one simple reason… one wrong step and it’s sticky, juicy, splash city all over the kitchen!
So what we did was visit the local dollar store and pick up a smaller jug. It has a smaller handle and is smaller over all.
This makes it a lot less heavy and much easier to get their little hands around.
Also, we moved their cups from being up in the cup/glass cupboard to down into the gluten free food cupboard under the counter. This way, they can go and get themselves their little plastic cups any time they want.
The pouring is still a pretty scary task but it is now so much more manageable for them and they feel so proud each time. Often, when they ask for juice and I give them the go ahead, one of them will rush off to pour glasses of juice for both of them because they’re so eager to be such big boys.
This is one little step closer to me no longer being a servant and one huge step closer to them being able to do things for themselves.
It’s also worth noting that Cameron is 6.5 years old while Tyler just turned 4…. and while Cameron is doing grade 2 school work while he’s only in grade 1… when it comes to the motor skills required to pour juice, because of how autism affects him, they’re actually pretty even skilled.
In a way, I kind of feel bad that he’s learning the things his little brother learns at the same time, when it comes to tasks such as this but at the same time, I do like that they get to learn them together and gain an even closer bond that comes with the success of independence.
