Tag Archives | comfort

Understanding and acceptance means listening, even if you disagree

By on May 7, 2012 in Autism, General

Understanding
Adjective: Sympathetically aware of other people’s feelings; tolerant and forgiving: “people expect us to be understanding”.

I started the Facebook fan page called “Autism Understanding and Acceptance” a while ago with the goal of moving beyond awareness. What this means is that, rather than just simply knowing that autism exists, we must begin to do one simple, but very difficult thing… listen.

We must listen to autistics, parents of autistics, “experts” and even those that we might not want to listen to… the bullies, the disbelievers, the critics… the haters.

And this is quite contrary to what we’ve always been told and have always believed. We’re supposed to ignore the haters. Ignore the ones who’s only goal is to make you angry.

I hope to explain why, at least in my opinion, it’s important to listen.

understandingThe misconception of what it is to understand

First of all, there seems to be this big misconception among some people that tend to believe that “understanding” is something that applies to others who believe the same thing that they do.

The thing that makes “understanding” so difficult is that it requires us to be willing to listen and understand the position of someone that we do not agree with.

We don’t have to agree with them, just listen. Perhaps, through civility, there can emerge a mutual understanding of how each person has come to believe what they believe… even if, in the end, they still do not agree with each other.

For example, this whole post… I am trying to explain how I’ve come to believe that it’s important to listen to the critics and haters while you (the reader) may think that they should be ignored. When you finish reading this post, you may still not agree with me. But you may understand why I think the way I think.

In fact, I could argue that, to be truly understanding, one should seek out people that they disagree with, if only to listen to them.

It is not your job to change their mind. Nor is it really your job to listen. But it is best to recognize that they are two entirely different things. You can listen without having to convince them how wrong they are.

Understanding isn’t something that happens when two people agree. It’s the ability to comprehend why a person feels the way they do.

The uncomfortable position it puts you in

I won’t lie to you, you’ll get stuck in the middle of some sticky situations… and I’d like to give you my fan page as an example, particularly how it relates to the autism community.

When it pertains to autism, “understanding and acceptance” is often considered to be the opposite of “cure”…  there are those who want to cure themselves or their children of autism and then there are those who want for society to have more understanding and acceptance of themselves or their children.

This is such a small part of what it truly is to be understanding. It’s so much more than that.

It’s about understanding why a person might want a cure. What they’ve been through.

It’s about understanding why some people dislike autism, or any disorder or disease or their hair colour or how tall they are or their dripping kitchen faucet. Anything and everything.

It’s about remembering… people are allowed to dislike something every bit as much as they are allowed to like it.

“Understanding” is not a thing that is to be thrust on someone that dislikes something until they learn to like it.

This means that, on my Facebook page, when I post something by someone who feels sad, angry, betrayed…. just… dark… it is I that comes under attack for it. Not the person that wrote it.

It also means that when I post something triumphant, positive, happy…  it is I that comes under attack for it. Not the person that wrote it.

Why? Because people have perceived notions of what “understanding” is and feel that I should share those notions. That by being “understanding” of their feelings… I should also have those same feelings… and only share things on the page which coincide with those feelings.

It puts me in the middle. And unless I share items with people that they are personally comfortable with, they will see me as not being understanding….  for they would not have shared it… because they do not understand it.

But no one single feeling will pertain to everyone. Which means there will always be someone that does not “understand” it.

I can’t win.

Acceptance for the win

Perhaps I can win though… not in a victory, holding up the trophy sense of the word… but by persevering.

You see, understanding and acceptance is not the opposite of wanting a cure for autism.

It’s listening. That’s all.

To those that we do not agree with and those that we do. To those who want a cure and those that don’t. To those that are full of hate as well as those that are full of love. Even to those that will never understand and accept us.

They are people, with valid opinions, feelings… lives.

And it’s true, they might be wrong. We tell ourselves there’s no reason to listen to someone that is wrong.

But how can we ever show them what is right if we can not take the time to understand why they are wrong or how they came to be wrong?

How can we ever hope for them to listen to us if we can not take the time to listen to them?

Besides, right and wrong is such an abstract concept much of the time anyway. Differences, sometimes, are simply that. Differences. No right or wrong.

Understanding the “how” and “why” is the only way to understand the “who”… it’s the only way to move forward towards acceptance.

If acceptance is all you ask of others, then you have to be willing to do the same. Of all others. Not just those you feel comfortable with. Not just those that share your feelings.

Take the time to understand those that you disagree with completely… before you ask someone else to do the same.

Autism Understanding and Acceptance

Autism is not a superpower. Autism is not a curse.

It’s a spectrum of different stories ranging from one end to the other and only those who take the time to listen will be able to truly understand it.

It’s people. Autistic or not. Happy or not. Angry or not. They’re all people.

And they might not understand us. They might not agree with us. They might not accept us.

That doesn’t mean that we can’t take the time to understand them. All we have to do is listen.

That’s what understanding and acceptance is.

Perhaps you disagree. And that’s ok. At least now you understand what it is to me.

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Guilt, grieving and other emotions when your child has Autism

By on September 13, 2011 in Autism

There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.

“Should be”….  such a funny concept in a world of differences.

In my experience

emotionsI can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.

I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.

I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.

It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.

As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.

For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).

No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).

“Should Be” does not mean right or wrong

What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.

There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.

It’s not right or wrong, it’s just different.

Fear of the unknown

For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.

Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.

Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.

If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them.  They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?

Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.

We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.

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Autism can’t stop my son from being a great big brother

By on September 9, 2011 in Autism

This year, my younger son Tyler (3yrs old) started JK… his first time in school. He’s so very excited for it because he’s watched his older brother, Cameron (6yrs old), go off to school for 2 years now.

And even though Tyler is still only 3, he’s more than ready. He can count pretty high, knows his alphabet, goes to the bathroom on his own and most of all… he’s just so crafty. He loves to paint and build things… school is so perfect for him.

Still though, even when it goes perfectly for the most willing of children, school can be overwhelming for the first little while.

Still bragging about this school

Cameron

Cameron - Big Brother

I’ve written many many times about how I picked up my family and moved over 850km away to get Cameron into this school because of their amazing Autism classes… this year, Cameron is back for his 3rd year (grade 1 this year!) and he gets the same teacher, the same teachers assistants and some of the same classmates.

A couple of children have gone off to IBI or to another classroom but his familiar friends are still there. Cameron is doing exceptionally well thanks to this.

There is another added benefit though, which I have not discussed, because we had not yet reached that point but this year is the year… his little brother gets to attend the same school!

It’s a normal, run of the mill public school but they have 4 special classrooms especially designed and equipped for children with Autism.

This means that while Cameron is in his class of 4 children (including him), with 1 teacher and 2 aides…. Tyler, his little brother, is across the hall!

Overcome Autism? No problem with the right motivation

Cameron has never had a huge problem with hugs or showing his feelings but then again, it’s not as natural for him as it would be for most other children either though.

Trying to get that out of him where he’s not quite as comfortable is even tougher… like say, at school.

But that doesn’t stop him when Tyler needs him!! Oh no.

Tyler knows that his big brother is across the hall and when the anxiety gets too much for him, he knows to ask his teacher… so his teacher takes his hand, walks him across the hall, Cameron stops what he is doing, gives his little brother a big hug and tells him that he’s ok… and Tyler goes right back to his class, feeling so much better.

This is huge!

Cameron told me that he remembers when he first went to school… for the first 6 months or so, he had a very hard time because he “didn’t feel safe.” I told him that sometimes, Tyler might feel that way too but mom and dad can’t be there to help him.

Cameron stepped up to the task in a huge way and is genuinely eager, excited and willing to help out his little brother. He wants be the big brother that Tyler needs.

Not a surprise to those that know him

Tyler

Tyler - Ready for his first day!

While I am excited about this, I’m not surprised.. and I’m sure those that know Cameron won’t be surprised by this either.

Still though, as a parent, I’m still so very proud. Also, if you’re a parent of a child with Autism, I’m sure you can understand that even though I’m not surprised, I’m still… well, I wasn’t going to believe it until I saw it.

Cameron amazes me every day, as does his little brother, but I still put no expectations on him before hand. He won’t disappoint me if he doesn’t do it, he won’t surprise me if he does do it… but it’s never necessary because sometimes, he just doesn’t do what some might expect of him.

And while it doesn’t surprise me, what does get me is that he’s so willing to stop what he’s doing… to break routine… to show affection right there in front of everyone… and to know and understand what his little brother is feeling.

In that moment, when his brother needs him most.. he is not autistic. There is no Autism. There are no teachers. There are no parents.

There is only Tyler. His little brother. And he loves him.

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Autism and Parties, the two don’t normally mix

By on January 21, 2011 in Autism

My youngest who is aged 7 with autism hates the thought of socialising at birthday parties and other similar events. Just the mention a friend’s birthday party invitation brings the little mite out in beads of sweat, making sure we understand that he’s not going to the party under any circumstances “send them a text now and tell them I’m not going, do it, do it now before it’s too late” is what we’ll get.

Before he was diagnosed with autism we just put it down to extreme shyness and nervousness, the hubbub of screaming kids, balloons popping and the happy birthday song were all too much, and the few parties we did attend saw us leaving early, and I mean early, usually before everyone had arrived. As it happens most people understand why he doesn’t enjoy the situation and usually left with a party bag and a balloon.Noise and Autism

The only party that I’ve seen him enjoy was a soft-play activity area, he was agitated before we arrived but once we were there settled down, maybe it was because he could crawl into a ball pit and get away from the other kids? It’s difficult to say but we were relieved that he got some enjoyment out of it.

A family get together is a completely different affair. Not so long ago he would spend the entire occasion watching TV in his bedroom and having food hand delivered on demand until it was time for bed. Now it’s a complete change around, and almost looks forward to the occasion as long as it’s been organised by one and only, going through the fine detail of the arrangements over and over again with military precision. Every detail has to be spot-on and no surprises, surprises are not welcome and don’t go down too well with most autistic children.

We’ve just come to a conclusion that children’s birthday parties are not his scene and he doesn’t feel left out or sad, in fact it’s a huge relief and does not miss them at all.

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A Comfortable Rut

By on August 13, 2010 in Autism

Even if you had never heard of such a thing before, I’m sure you can identify with what it is. A comfortable rut is a period of your life where things are just easier to keep doing them as you did the day before, rather than make a disturbance that would be deemed uncomfortable even if it means moving forward.

The most popular of these would be diets, or lack of exercise… or both. Basically you get into the habit of eating the foods you like, you can’t find the time to exercise and eventually it’s just easier to just gain weight even though you don’t want to.

In the case of parenting a child with Autism, it’s a very very easy rut to settle into.

What happens is that you try various diets, various programs, therapies, routines and everything else until eventually something seems to work… something starts to show results and in a little while, it becomes comfortable.

And a few months later you start to realize that your child has been eating the same 4 things every day because it’s just easier than fighting or dealing with the issues that come from not eating. You just start getting used to sleeping at certain times and not sleeping at others. You start dressing your child in the same 3 or 4 outfits (if you’re lucky) because it’s less of a fight to put it on them.

A comfortable rut is exactly what your child with Autism is looking for. We can’t confuse this with a routine. A comfortable rut is what your Autistic child wants, a routine is what they need.

What is the difference between a routine and a comfortable rut?

Well, a comfortable rut sees no progress. There’s no moving forward. For example, instead of trying new foods or dietary supplements or pushing your child to break boundaries, you just keep feeding them the same old thing.

A routine involves doing the same things at the same time but can still be a push forward. For example, when eating with Cameron, we eat at the same time, and he generally eats the same meals but, each day we get him to try something new. Even if it’s just a bite or just a nibble, he tries it. Some things he’s liked, such as combining his cheese and gluten free crackers. Others, like fish… he did not like.

That’s progress while still being in the same routine.

Cameron would prefer to wear the same two Super Mario shirts every day for ever if we let him, which would make for a comfortable rut indeed. Instead, we dress him similar yet different shirts… nothing that will irritate his sensory sensitive skin too much but something that will be less than the most comfortable thing he could wear.

You’ve all heard the motivation speeches, the leaders talk and the get rich guys go on and on… push your personal boundaries if you wish to become more than you are! Well, why wouldn’t it be the same with your kids, especially if Autistic?

If you want your child to get out into the world and be independent, whether your child is very severe on the spectrum or very high, you must push their boundaries if they won’t do it for themselves.

I know, it’s really easier said than done in most cases but I never said it would be easy.

I’m not going to get into the specifics of it or anything because your doctors/therapists will likely be able to help you more than I could if they’ve worked with you before. Moving forward doesn’t mean you stop what you’re doing now, it doesn’t mean breaking from routine… it just means getting out of that comfortable rut and doing it!

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