Quick to improve, Quick to regress, Quick to forget

I make no secret about it that my son (Cameron) has been making great progress… he’s even reading from a Dr. Seuss book now. But again, this brings up the inevitable conversations with people, including family, where they ask us if ever had Autism, or compare him to other children.. of differing ages!

In this case, it was a discussion about a daycare worker we knew that took care of Cameron before we had him diagnosed… she was wondering why we stopped taking him there after the diagnosis if he’s so well behaved.

Well, the thing is, he’s almost 6 now… back then, he was around 2. The differences are astronomical between a 2 year old and a 6 year old child to begin with but when you add in years of Autism therapy and treatments… let’s just say that there is no comparison.

It wasn’t that the daycare worker wasn’t great, she was… but after the diagnosis, we realized just how much one on one attention he’s going to need… specialized time at that, and a daycare worker just doesn’t have that kind of time or energy.

Big SpectrumAnyway, the point of all of this is that it brought up the topic of how people with Autism can improve and regress, sometimes extremely slowly and sometimes it’s seemingly over night. Not only that, but the amount of improvement or regression can also vary greatly.

Granted, we all have good and bad days but for someone with Autism, it can be extreme. A child progressing well and speaking and being social can regress suddenly to the point of being completely non-verbal, aggressive, disconnected and so on.

On the flip side of the coin, a non-verbal child that seems completely disconnected from the world can discover their voice one day, perhaps even discover the ability to recreate classical music just from hearing it, or draw a completely detailed city from memory.

These things can happen over the course of many years, or they can happen over night. It can be a regression such as being miserable one day or it can be a total loss of communication skills. It can be an improvement such as learning to say thank you…. or it can be like going from non-verbal to having an IQ greater than Einsteins.

You just have to remember that the regressions are not your fault… the improvements might not mean having a savant in the family but never dismiss them, no matter how small or how slow.

It can be so very hard for people to learn what a huge spectrum Autism really is but it’s so very easy for people to forget that an Autistic’s place on the spectrum can change from day to day.

Don’t judge my son now based on how he was years ago, or even a day ago, and don’t judge how he was a day ago based on how he is today… and don’t assume where he’ll be tomorrow either.

I’m going to work hard on keeping those improvements coming but my focus will be on the here and now. It’s who he is.

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Happening right now, it’s still Autism Awareness Month

I’ve been receiving a lot of emails recently, people offering me copies of movies, products to review, information on charity events, surveys or new book launches… it’s very obvious that it’s a busy month in the Autism community!

Short Survey

The Autism Program of Illinois (TAP) is conducting an online poll concerning autism awareness and government policy. It’s only 3 questions, so please take a moment to give your input here: http://www.theautismprogram.org/

Autism and Golf

On Saturday, April 30, the Tucson Autism Community Center is hosting its annual Autism Charity Golf Classic at the beautiful Tubac Golf Resort & Spa. The special guest will be Rodney Peete, NFL veteran quarterback and author of recent acclaimed book, “Not My Boy! A Father, A Son, & One Family’s Journey with Autism.” The book highlights Peete’s family’s experiences raising a child with autism and is told from the often unheard point of view of the father. All proceeds for the event will benefit the Tucson Alliance for Autism (TAFA). The weekend will incorporate other autism-related events as well.

The tournament will take place at Tubac Golf Resort & Spa, a luxurious hotel with a state-of-the-art golf course (“Tin Cup” was filmed there) and world-class spa.

http://www.tucsonallianceforautism.org/

http://tubacgolfresort.com/

Big Daddy Autism wrote a book!

The truly remarkable part is that it’s not in crayon… there are some cartoons though.

This book takes a look at Autism from a father’s point of view but it also incorporates humour as it demonstrates that there really is a lighter side to Autism sometimes.

The book includes some of his blog posts from http://www.bigdaddyautism.com, some of his cartoon work as well as contributions from many other parents around the Autism community.

Read more about it and buy it here: Big Daddy’s Tales From the Lighter Side of Raising a Kid With Autism

 

Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism

Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism

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Autism awareness? I live it every day

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

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Thank you for an amazing week!!

What a truly amazing week it has been..  no seriously, truly amazing. I’m a bit overwhelmed. Not just because I’ve been so busy, writing a LOT for people and changing jobs but more so in the support and recognition that I’ve received.

6 days ago

While browsing Facebook, I noticed someone post a link to the Top 30 Facebook Fan Pages by Babble.com and thought, hey.. I have two of them, but there’s no way I’d make it. Perhaps I’ll check to see which pages did make it though.

To my surprise, one of my fan pages did make it! Listed at #24 out of 30, my Autism Understanding and Acceptance page had made the list, and was even #6 in the “best for activism” category.

5 days ago

In a 4 part series on Autism, The Talk on CBS has dedicated each of it’s Friday episodes in the month of April to Autism and on April 8th, focused on the “forgotten parents” of Autism, the dads. This lead to a FollowFriday shout out not only from their Twitter account, but also on television!

1 day ago

I received an email from RNCentral.com mentioning that they created a page listing “50 Blogs you should Bookmark for Autism Awareness Month” and that my blog was included!

today

Once again, while surfing around, I came across the Babble.com article called “Top 25 Autism Spectrum Blogs” where once again, my blog was listed! Coming in at #21 and #6 in the “best from a dad’s perspective” category… you can see my blog listing here.

Believe me when I say that I’m truly honoured to be recognized but more so to be included among so many other amazing blogs and fan pages. And none of it would be possible without wonderful people supporting me… by reading, commenting, sharing with me… you all have encouraged me to keep this up and keep sharing.

It’s amazing comments on Twitter and Facebook where other parents thank me for sharing my story and advice… positive feedback from people that read this blog means far more to me than any “top x” lists but making those lists is a great indication of just how much of an effect that you all have on me and this blog.

So thank you RNCentral, Babble.com and to you… perhaps something I said one time might have had some sort of impact on your life, however big or small, but your being here and reading makes an impact for me every single day.

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Autism and the honest opinion, where does it all go wrong?

Normally I write posts to help describe Autism traits to those without Autism but recently, I was asked by @ThatSPKid about a previous post I made called “Do you really want my honest opinion?

So I thought I’d take the opportunity to change it up and explain to those with Autism a trait that the rest of us share (well, most of us anyway).

The problem

You have a friend or loved one that asks you a seemingly trivial question, usually about themselves personally. Some of our favorite questions include “how do I look?”, “do I look like I’ve gained weight”, “what do you think of what I’ve done?” and of course, “do these pants make my butt look big?”

You get the idea.

The problem here is that a person with Autism is likely to answer honestly… the first answer to enter their mind, the obvious answer, the honest truth, is likely to be what leaves their mouth.

Chances are, unless the person asking is a super model, and even then, they’ll likely not want to hear the truth.

What a person really wants

When a person asks for a personal opinion from someone, unless they are very secure and confident in themselves, will likely not be able to handle the absolute truth, unless they truly do look fabulous and your opinion of them really is a perfect 10.

When a person asks a self gratifying question, they do it because they want re-assurance… or, as I like to call it, ego stroking.

If a person asks about how they look, that means that they’re concerned and need you to tell them that they’re just being paranoid and that they look great.

People know when they’re fat, they know when their look is questionable, they know when the artwork they did is amazing or not.. what they want from you is to reassure them, validate their feelings or simply… to give their ego a boost.

Why so upset?

Some people are more than capable of hearing the truth and may accept the fact that you find they look fat and therefore will simply choose to wear something else or hit the gym after… and they won’t be upset with you in the slightest.

But those that aren’t so secure in themselves won’t take it so well and very likely will get upset with you. Not because they think what you said was untrue but it’s because they already knew what you’re saying, they just wanted you to make them feel better and you didn’t.

For no real rational reason what so ever, they asked you a question to which they knew there was a good chance they’d get a negative answer, especially if they already knew it to be true, and yet they asked it anyway anticipating you to make them feel better about themselves.

How do you know when to say the truth?

For the most part, a person will make it very obviously clear that they can handle the truth and if they do and still get offended, then you know not to repeat it next time. But if they take it as constructive criticism and don’t get mad then you’re free to be yourself.. your honest self.

However, it’s a good general rule of thumb that anyone, anywhere, that asks a question about what you think about them, their weight, their look, something they created and so forth is simply looking for your appreciation… you to give their ego a boost.

If you do tell them they look great or what they created is wonderful and they push you further, asking if that’s really your honest opinion, then it’s ok to give more honest feedback.

Encouragement or Discouragement

In the case of a person’s efforts, your honest opinion may make the difference between whether or not a person is encouraged to do better next time or discouraged from ever doing it again.

My children are a perfect example, which is what I used in my previous post. My 3 year old (Tyler) put a bunch of blocks together in what he felt was a nice pattern. He showed my 5 year old (Cameron) with all the pride a person could possibly have to which Cameron replied that it was nothing and just dismissed it.

He was right, it really was nothing. It was a 3 year old putting blocks together in no real pattern or anything.

However, my 3 year old was proud of it and would very likely continue to play with his building blocks and get better and better.

With proper encouragement, he could one day become an architect or engineer should he continue to enjoy working with building blocks. But if he shows off his work at the age of 3 years old and is discouraged from ever trying again… well, becoming a builder is likely not to be in his future.

In this case, someone that does not have enough expertise is not going to put together a masterpiece but is looking for positive feedback simply to help encourage himself to proceed further, to keep trying harder.

Anyone that is just starting something is likely to do poorly at it, but relative to their experience level, it might be right on par to what they should be able to do. And when they come to you for feedback on it, they’re looking for that encouragement. They need to know that they’ve done well and their work is “amazing”… because it will give them that push to keep at it.

Conclusion

There’s no perfect science to this… everyone is different and some people really want the honest truth and that will be what motivates them to look better, lose weight to try harder… but for the most part, it’s a safe assumption to say that the person just wants you to tell them what they want to hear.

And what most people want to hear is something that will make them feel proud, feel happy and feel encouraged. Appreciate is what feeds most of us what we need to push ourselves harder… we’re not nearly as good at taking constructive criticism as we tell people we are.

Put it this way, when someone asks you a personal question, think of it as a multiple choice question. There is a) the truth and b) what they want to hear.

Unless ‘a’ matches ‘b’ (the truth is what they will want to hear) or they’ve proven themselves to be very good at handling the truth without being offended… you’re probably best off taking a moment to consider both options before giving your answer.

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