Tag Archives | patience

The Younger Sibling, Autism’s Worst Nightmare

I’ve talked to people who tell me that they wish their ‘normal’ child would have more understanding when it comes to their Autistic sibling… my answer to that is… if they didn’t get on each other’s nerves, they wouldn’t be brother or sister. It’s like a law.

But I do understand what they mean, I live it every day… in my case, there can’t be any understanding because Cameron’s younger brother is only 2… yes, the terrible twos!!

Right now we have 2 issues on our hands when it comes to brotherly love…  one is Cameron’s personal space when he’s overwhelmed and the other is Cameron’s return home from school.

Cameron’s personal space is important to him, as it is for most people but more so for someone with Autism. Cameron will literally separate himself from people and play on his own, quietly, in an empty room for a good 15-30 minutes until the feeling of anxiety goes away and he’ll rejoin the people. He does this entirely on his own, when he needs it. However, tell this to a 2 year old and you might as well talk to a wall. His little brother Tyler will follow him and continue to push and push and push. We bought a little tent, not so much for camping but for just playing in and Cameron likes to hide himself away in it.. he even flips it forward so that the entrance to the tent is on the floor. This means there’s no way in or out.

Well, his little brother doesn’t like that at all because now he’s being excluded from something fun and he freaks out… fighting ensues.

The second primary reason for issues is when Cameron returns home from school. You see, at 2 years old, poor Tyler essentially stays home on his own most of the time to play games and do things with his mother. Sometimes he has friends over, or goes places, but a lot of times he’s on his own. And so when his big brother Cameron comes home from school at 3pm, he latches on for fun and games.

The problem with this is that Cameron is returning home from an already overwhelming day of learning and socializing. He returns home and would love nothing more than to grab a couple of familiar toys and play quietly, calming himself down but his little brother immediately glues himself to his side and tries to play with him.

Cameron typically responds by telling him he’s a bad baby, that he’s going to have a time out… you know, anything and everything that we’ve ever said in his life to tell him that he’s done something wrong. This causes Tyler to react by screaming and it escalates from there.

The best we can do in these cases is explain to them, each and every single time, why they’re behaving the way they are and what they should be doing to be nice to each other. At first it’s like talking klingon to a bunny rabbit… but over time they let it sink in a little.

In our case, Cameron is willing to give a little and play with his baby brother for a few minutes to make him happy before he finally has enough and leaves.

There’s only one thing I can tell you that makes any sense about it all…  some day, some how, they will look back on these times with fondness… although it may be 40 years from now. But in the end, Autism or not, the fights and bickering is pretty much to be expected. They’re siblings.

Just remember to put your ‘extra patience’ hat on and do your best to either let them settle it or solve it for them… just as any parent would.

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People Need to Realize that Autism Is Not Less, It’s More

I think that something that is lost in the translation to people who do not deal with Autism, is that yes, Autistic people have less communication skills, less social skills, less ability to understand non-literal speech and on and on…. but that does not mean that there is less to the person. In fact, it could be argued that there is so much more!

What most people fail to realize is that a person with Autism does not miss details, they get it all. All the sights, sounds, smells.. everything. When you walk into a grocery store, your mind filters out the white noise… the buzzing, humming, mumbling, background music, stuff being moved around, people walking, doors opening and closing… on and on. An Autistic person can’t. And that’s just sound.  Next you take the harsh lighting, things moving everywhere, glints of light off things, flashing lights, labels on everything, colours everywhere, people constantly doing something with something… there’s a lot to see. We say excuse me to the person in front of us and look for items on our list or that’s on sale. And Autistic person can’t do that.
And then there’s the smells… I’ll spare you the gory details on that one.

Now, on top of the sensory issues, you also have to take in the fact that the computers in their heads are working a mile a minute as they process every conversation, work out the math on all the numbers in the place, study the geometry of the fruit… all of this is happening faster than any science fiction computer you’ve ever seen.

What happens is, and is to be expected, a mental break down where even the best and brightest on the planet would agree that it’s simply too much to bare. We’ve all heard of that fun little torture technique where you poke someone in the forehead long enough it drives them crazy, or there’s a high pitched sound you can’t get out of your head?  That’s one… one thing that happens for a matter of minutes… and it drives you crazy. Now imagine a thousand things… for an hour… for a day… forever??

If you are not touched by Autism, then it’s hard to understand… even harder still to understand why we parents and friends are so vocal and fight so hard for our loved ones… and why we hate you oh so ever much more than you hate us while you stare at us because our child screams in line at the cashier.

And if you are touched by Autism, your child, relative, friend… always try to remember that if it seems like they’re behaving irrationally, there’s likely a very good reason for it. Have more patience than you thought you could as you take a deep breath, slow things down a bit and have a look and listen around. You may find that they’re dealing with a lot more than you ever thought someone should have to.

It’s not their fault… it does not make them less… it makes them different.

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Have Patience – Routines Are Hard Enough to Change Without The Autism!

Imagine having something set in stone in your life, something you’ve done since you were a child… no matter what happened, you never missed it, or if you did, you were thrown off for the whole day. Now imagine someone asked you to stop, or change it…. right now!

I think that would be a pretty overwhelming task for even the strongest willed of us, humans are pretty good at being able to adapt but I think it’s safe to say that we’re really routine based creatures. We all go to school, we all work, we all live in this wacky social society system we’ve built up around ourselves.

Now imagine that your brain is wired differently where any slight deviation from your regular routine sends you into a turmoil of raw emotion that you can’t understand, much less control.

I can’t even pretend to know what that is like even though I witness it first hand from time to time.

You see, my son is about to turn 5 and he is Autistic. You have to understand that to a 5 year old, a routine that’s lasted 2 or 3 years is pretty much the majority of his life, certainly the portion of his life that he can remember clearly.

The reason I bring all this up is that many people forget what it is they’re doing when they ask a child to stay up later, walk a different route, take a different bus… even to have something else for breakfast because you’re out of their favourite cereal!

Routines take time to change or break, for everyone. But for an Autistc person, it may not be possible at all, but if it is, it will take even longer. Routine is the foundation to a clear mind, feeling safe and feeling in control.

The trick in all of this is to make others understand, to have others realize the difficulty involved. Even the ‘experts’ that recognize this, sometimes simply forget, or don’t realize the impact of their actions. One big area this affects many children is at school as it can be quite the dynamic setting.

Cameron’s teacher and helpers are really great and they write into a daily journal to let us know everything that happens, but one time, they let something slip through the cracks… we noticed a behavioural difference in Cameron but didn’t know the cause. It wasn’t until a while later that we were told that the Autistic children were moved from a private small area to play outside to the common large public area to play for their recess.

They thought they had told us but it never made it into our book… and so some time later, we finally realized why it was that Cameron was behaving slightly different lately. Once realized, we could address it and help him to understand and feel comfortable with it.

As with anything involving an Autistic child, don’t take anything for granted. The smallest detail to you and I can be very important to them.

If a routine must be changed, be prepared to have a lot of patience. Be prepared to be very understanding. Be prepared to weather a storm. Because you’re asking a lot from them, more than you may realize. The sooner you respect that, the better it will go.

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The Hardest Thing My Son Has To Do is Love

It’s always seemed odd to me that an Autistc child is so prone to letting negative emotions out like a hailstorm but the good emotions so easily get lost, deep and buried behind cold lost eyes. No one seems to be able to provide a solid answer but violence, aggression, outbursts… these are normal and even to be expected from a child with Autism, especially the more severe cases. What’s also to be expected is that the child will likely never want to hug you, kiss you or say ‘I love you.’

Now, for those of you reading that has a child or children, and they’re not Autistic, I want you to imagine what that must be like. No hugs good bye, no kiss goodnight. You say ‘I love you’ over and over again and never get it back. But if you tell them no, they can’t have an electric toy in the bath, they’ll instantly go into a tantrum and try to hit you in the face.

Does that make you feel loved?

That’s what life is like as a parent of an Autistic child. Not every single child, but as a general rule, that’s pretty much how it is.

I think, the hardest thing to come to terms with when raising a child like that, is that they do love you, they do want to show you… they just can’t. I compare it to an arachnophobic person being asked to walk into a room with one thousand spiders. Likely, if they really really love you, they’ll do it to prove it… but it’ll be the hardest thing they ever do. I picture my son walking into that room every time he gives me a hug… and he does hug me.

The one thing I’ve learned more than anything over the last 2 years is patience… to have far more patience than I ever thought I could have, even more than I ever thought was possible in a person. You have to find a way to keep reminding yourself, to keep telling yourself that your child not only loves you, but they have a hailstorm of love buried in there… it’s just not coming out like the temper does. But it’s there.

If anything, he may love me even more than he would if he didn’t have Autism… even though he may not understand emotions or know how to express them, I bet he feels them every bit or more than others. I just have to never forget that it’s there.

One night, as I tucked Cameron into bed, I told him that I loved him and he looked at me. So I asked him why he never says ‘I love you’ to mommy or daddy. He just sorta shrugged and so I asked if it made him feel embarrassed and he nodded yes. I asked if it was hard for him to say it and he nodded again. I assured him that it doesn’t make us mad, it doesn’t make us sad… we understand and it’s ok. I think it’s important for him to know that we know how hard it is…

Then he did, as he does quite often… he put his index finger tip around to the tip of his thumb, much like you’d do if you were to do the ‘ok’ sign. Then he put it up in front of his face and looked through it with one eye, and moved it back against his face, still with his eye looking through the opening.

I then asked him why he does that, to which I got no reply. I asked if it helps him to see better, like glasses and he just looked at me… so I asked if it helps him to see me and he said ‘yeah’. So I asked how it helps and he glanced around a bit…  I asked him if doing that helped him to not see the rest of the room and he again said ‘yeah’.

Cameron did this motion, almost ever night, quietly, sometimes completely without my notice, as his way to see me, and only me. Without interference or distraction. It occurred to me then that he had been doing this for quite some time, months… a year? I can’t remember but it’s been a while and it was always something I just thought was something silly he started doing.. like a child looking through the middle of a roll of toilet paper.

But it was so much more than that. I like to think that it’s his way of telling me he loves me…. that… he sees me.

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