Tag Archives | learn

Do you really want my honest opinion?

It’s certainly not that those with Autism can’t find something pleasant to say, or that they’re not capable of “lying” for the sake of being nice, but chances are that if you ask for their opinion on something, you’ll get an honest answer.

First of all, I don’t want you to think I’m stereotyping here at all because it’s not my intention. However, this does illustrate how, in some cases, this is very much the truth.

Yesterday, while Cameron (5 yr old with Autism) was at school, Tyler (3yr old without Autism) was home working with building blocks at the kitchen table. He is the little hands on one, needing to have a paint brush, marker, chalk or building blocks of some kind on the go at all times… but he’s 3. He’s doing well but let’s be honest, even stick figures are a little beyond him yet.

So Cameron gets home from school and Tyler’s very excited to show off his work… he has quite the large, elaborate collection of blocks strewn out about the table, in what to him, is a nice pattern.

As soon as Cameron gets close enough, Tyler runs and says “Look Cameron!! Look Cameron! Look what I did!”

Cameron drops his winter coat onto the floor and says “it’s nothing.”

This is where my wife and I step in and ask Cameron to say something nice, to be nice to his little brother, to make his little brother feel good… yatta yatta… Cameron continues to insist that it’s nothing, that there’s nothing else to say.

So we say that if he can’t be nice to his little brother, he’ll have to play by himself for a while to which he quickly says “no!! It’s a caterpillar!!”

It’s not that I want to be mean, I knew he’d change his tune (not exactly that he’d see a caterpillar though) and I really don’t want to teach him to lie exactly but learning to share a nice word of encouragement is a pretty important skill.

This hasn’t been the first time, not by a long shot. And you never really realize just how hurtful honesty can really be when all you’re trying to do is get someone to acknowledge your hard work…  and you’re 3.

Over time, I’m sure he’ll learn to throw a “ya, that’s nice” just to avoid getting into trouble again but I also know that in the back of his mind, it’ll always be a conscious decision that he’ll have to make any time someone asks for his opinion.

When you say “be honest with me”… do you really mean it? Do you really know what you’re asking for?

If not, I welcome you to ask my 5 year old.

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He has become self aware

Ok so my son isn’t a robot, but he does have some challenges that differ him from many other children, namely, Autism.

My two boys share the same bedroom which presents certain problems around bedtime. They tend to talk or play rather than go to sleep. This can be a bit of a problem when Cameron has school the next day. Like all children, he needs his sleep, but as a child with Autism, he needs it that much more or else his stimming and meltdown tendencies may become much more evident the next day.

In the past, I’ve separated them by putting one boy in my bed (mom’s bed, as they call it). I alternate between the boys so that they feel it’s fair but really, this is not the best solution. We can’t keep doing this until they get separate rooms, can we? What if I want to go to bed early?

Finally, one night, I decided to take on the discipline route… putting X’s on their behaviour chart, threatening to take something away. Finally, after being awake 2 hours later than their bed time (this was not a school night so I wasn’t hugely worried)… I said “that’s it… no video games and no television all day tomorrow!”

Sadly, this sounds like more of a punishment for my wife and I but ultimately it was a good thing. They needed a reminder that they have a lot of things they can do besides video games and television anyway, and it is also what would hurt the most.

So the entire next day, they moped around but found other things to do as they were supposed to. They even got a treat just before bed, since they handled their day so well, they got to watch Cat in the Hat on tv for 30 mins before bed.

The next day things were back to normal, and come bed time, I asked Cameron “Do you want to sleep in your bed tonight? Remember though, if you talk and play instead of going to sleep, you get no video games or tv tomorrow.”

Cameron thought about it for a little while, like… really thought about it… and said “uhmm… maybe I can sleep in mom’s bed tonight?”

Wow. Did he seriously just figure that one out on his own? I mean, he must have realized that in his room, he would be far too tempted to talk and play. In all that serious thinking he did, he must have realized that if he was in his bed, there’s no way he’d be able to resist the temptation to play.

Rather than risk it, he opted for the separation right from the start. Not just opted for it, but suggested it. I didn’t even include that as an option in my question.. I implied that it was an option by asking, but didn’t make it an option for a very specific reason.

The reason I titled this article “He has become self aware” is because this has been a big focus for me… to have him recognize upcoming hazards and avoid them by suggesting something better. Stop and think about your own child that has Autism and question how often this happens.. it’s really not an easy thing to do when your mind is so focused on the “here and now”.

As with many things in my blog, this is only a first step and certainly not going to dictate his actions/thoughts for his life but this is a great first step, I think. He’s become aware of his limitations and suggested a course of action to get the results he desires.

Good job Cameron!

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5 things to tell every parent right after their child is diagnosed

Learn, Learn, Learn, Learn, Learn!!

What? Oh, you expected an intro and information and conclusion and so forth… right.

Recently AutismSpeaks asked on Facebook and Twitter what 5 things that people would tell parents right after their child was diagnosed. Even though there was hundreds of really great answers, I found that you could boil them all down into one fundamental response… “learn”. Every answer involved the parents having to learn one thing or another!

So having boiled it down to one answer, which encompasses them all but is still a little too vague entirely on it’s own, I will broaden it out to answer the original question: what 5 things would you tell a parent right after their child is diagnosed with Autism?

1. Learn what Autism is.

LearnThe scariest part of getting the diagnosis is that most of us really don’t know what Autism actually is at the time and so our minds start racing about all the things that must be wrong with our children and all the ways their future is going to be impacted. We start going through our memory files trying to think of every single thing we’ve ever learned or heard about relating to Autism.

The only way to really conquer a fear of the unknown is to learn about it. Don’t bother yourself with causes and cures, just learn what it is. Talk to your doctors and also hit the information super highway to learn how Autism affects people. As you learn the signs, symptoms and effects it has, you’ll begin to recognize them in your child. It’s the first step to learning how those symptoms are treated.

2. Learn What Services Are Available To You

This has to be your second step because early intervention is the key to helping your child overcome Autism and live a productive life. Unfortunately, not all treatments/therapies are covered for you, not all are free, not all of them work, not all of them available to all people and many, especially the good ones, have a rather long wait list.

The sooner you find the best places to go for help, the sooner you can get in the door to talk to them. It may be months or even years down the road so you have to find these places ASAP.

Also, some places will take you but not until after you’re approved for funding, or some other stipulation and again, applying right away means you get the paperwork done faster.

3. Learn the treatments, therapies, diets, etc. yourself

If you’ve done #1 and #2, you’ll find yourself quickly thrown into terminology hell with abbreviations thrown at you from every direction, including ABA, IBI, GFCF, IEP and on and on. You’ll learn them as you go, don’t stress out over it.

It’s very important to remember to take notes all along the way!

Some of these things will work brilliantly for your child and some will not. The very nature of Autism is that no one solution works for everyone.  So you may need to keep track of the results of each attempt so that you can tell what is and what isn’t working.

More so than that, many therapies are effective but so very limited. That is to say, you may have speech therapy appointments once a week which help a lot, but how much more would it help if it was daily instead of weekly??

Ask for notes and information on how you can continue the work at home. Ask for books or copies of what they work on that week so that you can reinforce the work.

If it’s a nutritionist, ask for a list of essential foods to try for, ask for suggestions on how to get a picky eater to eat the things they have to instead of just what they want to.

Never just expect a professional to do all of the work for you. They are professionals but they can only do so much because it’s not just your child that needs them. However you are not them. You can devote your time to one child far better than they can. But you’ll need the information and tools to do it.

Also, maybe one day you’ll meet another parent along the way that is really struggling and can’t get the same help you did, and you’ll have all that information for them to be able to use if they have to!

4. Learn where the support is.

The one good thing about Autism being everywhere is that there are so many people out there going through similar situations. Someone you are going to deal with will likely have some information on how to get involved with a support group, whether it’s your doctors, therapists, teachers, nutritionists… what ever, keep asking them all if they know of any.

Do not be shy.

Children with Autism are extremely diverse and you’re very likely to find parents that have children that are extremely low functioning, some that are high functioning, some that have had made great progress in getting their children developing and even some poor parents that have had their child regress.

They all have information to share and support to give. And they all have had to start at the same place… scared of the unknown. So don’t feel you don’t belong because you have nothing to share yet. You will, in time.

Also, remember that the Internet is there to help out. It can be daunting at times, all these people from all over the world that you don’t know but they’re real people and will help you just as much as a person face to face can. In fact, you will likely find a much larger support group online since you literally have the whole world at your finger tips. Twitter and Facebook groups/pages are a great place to start but there are also many forums and such to find.

5. Learn to be a super hero

That sounds a little strange but when you think about it, a super hero is compassionate, patient, strong, capable of doing amazing feats… that’s going to be you. In time.

I used to enjoy reading comic books, especially the early stage comic books where the hero has to learn what it takes to be a hero… and I find that it’s very similar to what you’re going to go through.

You’re going to learn to be far more patient than you ever thought you could be. You’re going to learn that all those children you thought were being bad actually weren’t. That they really wanted to be good kids. You’re going to learn that all those “weird” people that seem extremely socially awkward really aren’t that weird after all. You’re going to stand up and make sure that people are treated far better than they have been, when before you might have let it go or just said something without getting too involved.

On top of all that, unlike most parents that are forced to become doctors, psychiatrists, chauffeurs, banks and so forth, you’re also going to have to become a researcher, scientist, psychologist, therapist, nutritionist, supporter, event manager and even more.

It sounds pretty daunting actually, but the good news is that even though it does happen pretty fast, it’s still not over night. You’ll tackle each step as it comes along the way.

But in the end, so long as you never give up and you keep in mind who it is that you’re doing it for… when your child grows up and becomes capable of far more than what people told you they could do way back when they were first diagnosed… you’ll be a super hero.

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The Lessons We Learn the Hard Way

Parenting is one of those things where you can’t help but share your experiences and insights with other parents, especially if they’re new parents. It’s one of those things where, even when you know you shouldn’t, you still speak up when you see them doing something you don’t agree with. It’s one of those things where, when you take care of their child, you ‘sneak’ in some of your own brand of parenting because you think they’ll be better for it. It’s… well, it’s really quite invasive, isn’t it??

We all do it and we all mean well, it’s always done with the kindest heart, even when you just want to scream at them to just shut up… please just shut up! But you don’t, because you know they’re not wrong, and they’re just trying to help… it’s just that, they don’t know your child as well as you do and their methods, although they may not be wrong, may be a bit dated.

Let’s take grandparents as an example because I think we can all agree that they can be some of the worst in this department. They raised you and you turned out just fine, right?  And they are a great source of wisdom, so it’s only natural they’d have the most to ‘share’ with you.

But sometimes, it can be a bit much for the young parents who just want to do things for themselves, right or wrong… they need to be their own kind of parent, not someone else’s.

Now, this brings me to Autism… let’s face it, even if they had an Autistic child, they didn’t have yours… and they’re all different. But chances are, they didn’t. And they haven’t done all the research you have nor spent the same amount of time with your child as you have and therefore, they keep giving their same old advice and it really doesn’t even come close to applying to your situation now. But they still mean well and you still listen with a smile knowing full well that you can’t do what they did.

What I am trying to say is that it’s up to you to educate, even the most stubborn “I did it and I know what I’m talking about” kind of advice giver… you can’t just smile and nod because they don’t know. They don’t understand. They haven’t been in your shoes.

I’d like to share with you one example where we didn’t educate enough, we didn’t make ourselves clear enough or… we simply never would have been able to but after the deed was done, the lesson was definitely learned.

We took my wife’s mother with us to a pasta restaurant where we knew full well that our choices would be extremely limited since Cameron (my son) is on a strict gluten free diet. We got him some pasta but never intended for him to eat much of it. Just a little… and we’d pad that with other food, even deserts if we had to.

Well, being a good grandmother, she disagreed with filling a child with deserts or ‘other food’… she knew full well that he was on the diet, and knew fell well that we’d object. However, she didn’t know just what the gluten did to him. She didn’t understand the full extent of his condition. As I said, we tried to explain but really, who believes that a little pasta will set off a child like a grown man on heroine?

So, as my wife and I went off in search of food for him (at a buffet), Cameron’s grandmother took it upon herself to feed him some more of his supper before we got back. As I said earlier, she wasn’t really wrong in doing it… it’s what I would expect a grandmother to do. However, as I also said, in the case of Autism… we failed in educating her properly.

We got back to our table and protested what she did, she argued that he’d be fine… damage was done, what can we do.

So we returned home afterwards where the monster quickly revealed itself… and when I say monster, I mean it. He was screaming, going wild, jumping off of furniture… to say he was bouncing off the walls is quite a literal expression. He actually got a big bruise under his chin from hitting a wall… under his chin!!

He finally went to sleep some time after midnight (his bed time is 7pm) and woke up very sluggish, very slow and proceeded to spend the entire day on the couch, in a ball, rocking back and forth apologizing to us, telling us he loves it, saying sorry…  just, so secluded, so alone.

I swear to you, it was like watching a drug addict go from a major high to a very extreme low and it all happened so very fast. Even other family members that were around that day or the day after commented on how bizarre he was acting, how different he was. They were shocked that a few bites of pasta would cause such a huge change in him.

His grandmother felt terrible (I really hope she doesn’t mind me sharing this story) and she realized then and there that despite her good intentions, she really needs to take what we say seriously. That when we say he has extremely bad reactions to gluten, we mean it.

It’s a lesson I wish we could make really clear to those around us without them having to see it first hand… but I have yet to find what works. Parents are proud people and they raised children successfully. Plus, Autism is still very foreign to many people, especially older people. To some people, they just see wild, disobedient children and some even go so far as to dismiss Autism entirely… they figure it’s just the parent’s fault these days.

What ever the case, it’s hard to convince more experienced parents that they really don’t know better than you. But for your sake, for your child’s sake, you have to.  Don’t wait until they learn the lesson the hard way. Sit them down, show them videos, show them information, make them understand.

You have to prepare your child for the world as best you can but you also have to prepare the world for your child.

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