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Acceptance is the greatest gift you can give a child with autism

By on September 6, 2011 in Autism

It’s a scary thought, it truly is, but there are parents out there, far too many really, that simply can not accept that their child has Autism.

Either they’re in denial and refuse to believe the doctors, or they refuse to believe that their isn’t a cure to make their child how they want their child to be… or they just refuse to accept that their child is different… I feel so very bad for those children.

If you can’t accept me, who will?

A child’s only wish is to make their parents proud. To receive praise for those first steps, to get a treat for remembering to tidy up, for getting a shiny new bike for doing well in school… but when your parents see you as broken, defective…. less than you should be… what message does that send to a child?

Children grow up to be self confident because their parents instill that strong self worth in them. Children learn to be happy with themselves because their parents believe, through and through, that their child is wonderful exactly how they are.

Whether a parent tries to fake it or not is irrelevant because a child that can not be accepted by their parents will always feel they’re not wonderful, they’re not worthy of acceptance… that no one will ever like them for who they are.

Acceptance is not giving up

The biggest misconception is that accepting your child for who they are is the same thing as giving up and doing nothing to help them. That’s the furthest thing from the truth.

Only when you accept your child’s disorder can you begin to move forward in truly helping your child overcome, excel and maybe even turn that disorder into an advantage.

Many people who refuse to accept that their child has Autism will also refuse to start therapy, treatments and such… losing valuable time, if they ever do come around to accepting it all.

Also, acceptance in finally believing that your child is who they are, how they are and that they are simply always going to be different can help you to adjust your strategies and methods in that you recognize the need to incorporate your child’s wishes, behaviors, activities and “quirks” into the therapies/treatments that you’re trying to use.

Until you stop forcing change on your child and rather, accept the differences and work with your child’s differences, you will keep hitting road block after road block.

Therapy isn’t meant to make it so that your child is no longer autistic, it’s to help your child succeed with Autism, not despite it.

Acceptance leads to self respect, self confidence, self reliance

self acceptanceA child without his or her parent’s acceptance will grow up with self doubt, no self value and will always feel like they don’t belong… like they’re broken.

With acceptance though, a child can grow up to feel that they are respected and have real value to themselves and others. With confidence, children will feel more bold, more brave and more willing to take the steps necessary to becoming independent.

If you look at your child like they’re broken… they may never learn to brush their teeth. But if you love them for who they are (yes, including the fact that they have Autism) and begin to work with your child, with the Autism, you will find a way to have them brushing their teeth and you’ll find that way together, because you’ll work together to do it.

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening….

Acceptance is not giving up. Acceptance is not saying something you don’t really believe.

Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities.

Acceptance is the door that you need to open… step through and close behind you.

Move forward with your child, not against your child.

Your child can be perfect. All you have to do is believe it. Because they are.

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Does person first language indicate a lack of acceptance?

By on September 2, 2011 in Autism

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.”

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism”

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

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If I had Autism

By on August 23, 2011 in Autism

questionsAs I see parents writing articles on what Autism is, or how to describe it, I wonder how many of those people ever asked themselves what it would be like if they had Autism themselves.

Have you thought about it?

I have.

These are just some of the questions I asked myself:

  • Would I see the sounds I hear?
  • Would it be beautiful? Would it be painful?
  • Would I feel the ridges of my finger prints when I rub my hands together?
  • Would I feel anything at all?
  • Would people expect me to have special skills?
  • Would people expect me to have no skills at all?
  • Would I speak the same language as everyone yet still not understand anyone?
  • Would I be unable to speak any language but understand everyone perfectly well?
  • Would I require constant control over myself and my environment?
  • Would I lose control easily?
  • Would I really need hugs?
  • Would I really not want to be hugged?
  • Would I notice the flicker of a fluorescent light?
  • Would I not notice the dangers all around me?
  • Will I be loved for who I am?
  • Will I be hated for who I’m not?

Even though some of these pairs seem like opposites from each other, would I still answer yes to both? Would my answers change from day to day?

Would I be able to explain these things to other people? Would I want to?

Would I be me? Would I be less than me? Would I be more?

There’s so many more questions…. I quickly find myself becoming overwhelmed by it all but strangely, as much as I’ve thought about this a lot, it never really hit me like this until I asked myself…

If I had Autism…

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The TSA responds to Autism concerns over new “behavior screening” being used at airports

By on August 2, 2011 in Autism

tsaEarlier today, I wrote about my concerns over how “Autism symptoms may make the TSA think you’re a terrorist“, in which their new “behavior screening” process is essentially them making conversation with you and looking for any “suspicious behavior” which may indicate that you are hiding something.

At the same time, I emailed the TSA and asked them if they are going to include Autism and other special needs information for this training so as to avoid potentially embarrassing and very real damaging mistakes.

Their reply email comes with a disclaimer that says that I can’t copy or distribute it (which is a tad strange for an email) but I can give you a breakdown of their response.

Separate screening for special needs

The TSA has a special process for those with special needs/disabilities and what ever equipment/aides they may have. They take great care to include all areas (mobility, hearing, visual, and hidden) and has gone so far as to establish a coalition of more than 70 organizations that can instruct and train the TSA on their related conditions and issues.

They didn’t say how all of that would be included or associated with the new program they are testing at Boston’s Logan airport but one would assume that they’d make sure that those issues are brought to everyone’s attention.

Disability Notification Cards

The TSA has developed some cards which you can download (http://www.tsa.gov/assets/pdf/disability_notification_cards.pdf) and fill in. Obviously, as it says, it doesn’t exempt you from screening/questions but it will help to get your message across.

Also, in their email, they advise that anyone travelling with a person that has special needs/disability to voice their concerns and needs to the TSA officers.

The cards are a little more discreet though, than having a conversation about it in front of everyone.

If you need them later and forget about this post or the direct link, just visit http://www.tsa.gov/and search for “notification card” in their search box.

Thank you TSA

Well, they answered my question and didn’t… I still have some concerns. As I said in the first post, terrorists could take these steps which would mean they fake a special need in an attempt to get through the process.

Still though, it is a great first step and it shows that they are fully aware and doing their best to include special needs into their process.

There was a lot more about the program and how it works in the email as well, which was quite nice of them. However, as I said, I’m not supposed to “distribute” it or anything. I’m sure though, if you have questions, they will provide you with answers as well.

Contact them, as I did at http://www.tsa.gov/contact/index.shtm

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What a difference six years can make

By on July 29, 2011 in Autism

Yesterday was Cameron’s birthday… the day he was born… 6 years ago. I originally started writing this post yesterday, to be posted on his birthday but we did so much the whole day that I never did get that chance.

Even though he’s taller than many nine year old children, he’s still and always will be my little boy.

If you have a few minutes, I’d like to give you 6 years.

Once upon a time, I think it was a Thursday…

cameron 0 days old

Cameron - 0 days old

Showing up at the hospital at 8am on the 27th, my wife was “induced” at 11am… wait, wait, wait, push, push, push… my beautiful little boy was born 14 hours later, after 1am on Thursday morning.

That whole first year was amazing… having this little baby sleeping on my chest as I lie on the couch, feeling his little fingers grab onto my finger.

It was everything that parenthood was meant to be. Even the 3 hour feeds all day and night. Friends and family would look at me with this wide smile, sarcastically asking how much sleep I was getting or how tired I was… to their disappointment, I was more than happy with how it was. I don’t even remember how much sleep I got, all I know is that I would have been happy being awake for the whole year… so that I wouldn’t miss a thing.

I loved it.

Enter the villain of our story

first birthday - cakeOn Cameron’s first birthday, my wife had this wonderful vision of a smashed up birthday cake all over the place. She had one made with 2/3 icing and only 1/3 actual cake… this makes it easier to get little fingers into and spread around.

But that didn’t happen. It turned out that we had the only little boy in the world (or so we thought at the time) that didn’t like to get dirty. My wife took his hand and buried it into the cake, which fascinated Cameron but again… it wasn’t what we had hoped for.

With the help of some off camera funny faces, we were able to get the picture that we thought would make it all… “normal.” It was what we had to do to get what we wanted. Not what he wanted.

On top of that… his entire first year was without any words, toilet training and without any more snuggling on the couch together.

His first year, he had to spend a good 20-40 minutes with me on the couch at the start of each day or else he’d be upset.

That hasn’t happened since.

The battle begins

After Cameron turned 1, he spent most of his time separating blocks by colour, lining up cars, flipping them over to spin the wheels, doing his Thai-Chi and other very unusual and repetitive behaviours.

I spent a fair portion of that year doing research and when Cameron turned 2, I asked our family doctor for an assessment.

He told me that Cameron was a bright boy, that he was likely just going to be a late talker and recommended we just wait.

We respected his opinion but insisted anyhow… 6 months later, I was in Toronto with Cameron, visiting a hospital.

Cameron in the news

Cameron in the news

During Cameron’s assessment, Cameron shocked me. Almost even worried me…. he spoke!

The doctor took out a little bottle, a little wand and filled the room with bubbles. To my complete and total surprise, Cameron said “bubbles!”

To be perfectly honest, and the reason I say it worried me, was that this.. of all times, would be when he speaks. That these people would look at me like a neurotic parent that was just wasting their time or worse, making things up. See, I had told them that Cameron can’t speak. He just proved me wrong… right in front of them.

How embarrassing! Wonderful… but embarrassing.

It turns out that I didn’t have anything to worry about because they diagnosed him with PDD-NOS, on the Autism Spectrum. One word certainly isn’t enough to fool a doctor out of a diagnosis… I know that now, I didn’t then.

Fast forward a bit

I’ve written previously about the 3 year wait lists we were put on, the $150/hour speech therapy appointments… how my wife took it upon herself to learn the treatments and therapies so she could do it at home…  I’ve even written several times about how we gave up our house, everything we had and moved pretty far in order to get Cameron into a special school where he could excel rather than regress… so I won’t repeat it.

I will, however, tell you about something amazing.

When Cameron was diagnosed, despite having said one word… they told me that it’s entirely possible he might never have “normal speech” and even if he does, it’s even more likely that he’ll never be very good at social interaction and communication.

We were told not to be too disappointed or hard on him if he just can’t grasp toilet training.

Essentially, we were told not to expect the worst but to be prepared for it. Cameron may never progress, he may progress and then regress… anything was possible.

Cameron proved them wrong. Not us, Cameron did.

Truly inspirational

Cameron iPad

Reading Cat in the Hat

I will never deny that my wife and I have done a lot to get where we are.. we’ve never given up and always tried our hardest. But the truth is that the real person responsible for where Cameron is today is Cameron.

At 6 years old, Cameron is reading Cat in the Hat books himself, he has friends, he’s doing well at school, he can ride a bike now (for the most part), he can finish video games, he speaks in complete sentences (he even says “You and I” instead of “me and you”!!)… he’s doing exceptionally well.

That’s not to say that he doesn’t still have his issues… his senses are still very sensitive, he still needs his specific diet, he still gets overwhelmed quickly and needs quiet time… you get the idea.

I try my best to support people, give them positivity and even inspire people as best I can but the honest truth is that the real inspiration is Cameron.

It’s just simply amazing to think of how well he’s doing despite all of the things I was told almost 4 years ago. He’s overcoming obstacles, he’s smashing through barriers. He’s never giving up.

I don’t just say that as a proud parent.. if you ever get to meet Cameron, you’ll see it in him.

Never Giving Up

As soon as I could have actual conversations with him… I would ask Cameron “What do you do when you fall down?” and his very simple answer was “get up”.

I asked him that at least 2 or 3 times a week, for over two years now. Half the time he answers on auto pilot (without thinking about it), the other half he is always happy to answer because I always praise him so much for being right.

He didn’t learn that from me. I learned it from him. All I ever do is remind him.

Cameron didn’t learn to ride his bike until he was 5… he started learning when he was 3. It took a long time but he never gave up. Cameron had a very hard time playing any sort of video game due to poor motor control but a year later, he could win most races at Mario Kart Wii.

Reading, writing, math, puzzles… it never mattered what it was, he would do it every day, on his own, never willing to give it up.

It was really quite easy for my wife to sit him down to learn the alphabet or numbers or how to do tasks because he was always eager to learn them and no matter how hard it was, he was always eager to keep doing it over and over.

And if there is something he can’t do, if a bad guy in a game can beat him… he gets mad. Not meltdown mad… just… mad. When that happens, there is no turning off the game, there is no doing anything else. It drives him.

No matter how inspiring people can be, no matter how much wisdom they have to share with me… no one inspires me as much as Cameron does.

My hope is that one day he’ll be able to look back on this blog and anything else I do and realize how much he has done for me. I’m so very proud of him.

Cameron - 6 Years Old

Cameron - 6 Years Old

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