Tag Archives | emotions

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

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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Forgiving the volcanic emotions

If you are familiar with Autism in the slightest, you’re likely familiar with the term “meltdown.” There is no specific definition for this in terms of an Autism behaviour so I’ll give it a go:

A term describing a complete lack of control or reasoning during a temper tantrum as a result from prolonged or overwhelming stress

That’s how I would define it, I think it is specific yet vague enough to explain what it’s essence is. The problem is that it has more specifics such as what causes the stress, such as sensory overload, fear, anxiety, frustration and so forth… which means that there are quite a few things that can trigger a meltdown.

Lack of control or reasoning

volcanoThe key point, I think, is the “complete lack of control or reasoning” portion of the definition. Again, this sounds specific but in a sense, it’s actually kind of vague and I’d like to explain why.

When you hear “complete lack of control”, you tend to imagine someone flailing around, screaming and maybe even writhing on the ground but it’s not always that way. What you’re picturing, most likely, is a child.

However, as those children grow older, that type of meltdown will become less likely, seeming far more controlled yet still fitting the definition that I laid out before you.

As an Autistic gets older and they develop language, structure and maybe even a life of their own… they can gain a lot of control over their emotions and thus, learn how to avoid meltdowns. Also, when they do happen, they’ll look entirely different from what you pictured with the child on the ground.

An adult, or even an older child that can speak, may lash out verbally, maybe even physically… they may say the absolute most hurtful thing that enters their mind, they may hurt themselves, they may seclude themselves away from all others, they may even have what would look to us like a nervous breakdown.

For the most part, all of these would appear to defy the definition. People can stop themselves from saying hurtful things or from hitting someone or from hurting themselves. People can avoid a nervous breakdown if they calm down, breath deeply, relax… people can seek out help rather than become isolated.

These seem like choices to us because as we develop, we learn how to recognize these situations and make those choices.

That’s not always true for an Autistic.

A meltdown is still a meltdown even if it seems like something we’d have done by choice. An outburst, a hateful response, violence… these things may be happening completely beyond the Autistic’s control and reasoning.

When this is the case, when it is beyond their control, a grieving period usually follows where there is extreme levels of guilt that they have to get through.

And you and I would think that if there is that much guilt, they’d try harder to not do it next time, or “learn from it” but you have to understand, that’s probably not possible.

I titled this post “volcanic emotions” for a reason… if you can picture a volcano where pressures build and build and build for a while and then finally hit the breaking point where all that pressure is released into a huge explosion of ash and lava… you can then also picture what is happening inside many of these people with Autism.

Young and old, the pressures of stress tend to build and grow until eventually they’re released in an explosion and that explosion is a meltdown. Whether it be flailing around on the ground screaming or lashing out with hurtful words and aggression… it’s beyond their control.

Doesn’t therapy help with this?

Yes and no… it helps. The real progress is made when the person is able to recognize the rising pressures of the stress and take measures to avoid it reaching volcanic proportions. This is a way to avoid it from happening, not from controlling it when it happens.

Why isn’t there a way to control it when it happens? Well, I’m not a scientist and even if I was, I wouldn’t bore you with scientific terminology however I will say that recent studies have shown actual physical differences in genetic make up, pathways, and more within the brain of those with and without Autism. Physical differences.

That means their brains physically work differently. That’s not something you can change with therapy.

Forgiveness

Therapy is important, avoidance is important… we all function so much better without stress, without nervous breakdowns and certainly without meltdowns in our lives.

If we can’t control ourselves when it happens, then it’s certainly important to learn how to avoid it from happening at all.

However, in those cases and situations where it’s unavoidable and it does happen.. it’s important to forgive those that went through it as well as to forgive ourselves if we were the ones experiencing it.

We can’t be mad at those that did or said something while out of control nor can we be mad at ourselves. Actually, we can be mad, being mad is quite alright and healthy. After all, those things did hurt. However we must also be able to forgive.

Whether you hurt someone or someone hurt you, you have the capacity to forgive… especially if they feel guilt, especially if they still love you.

It’s not an easy situation to be in, if someone has meltdowns regularly or even rarely… you feel that they should stop after a certain amount of time but they don’t. And it begins to build pressure and stress in yourself… making for two sources of stress coming together.

If you can’t understand and forgive… for their sake and yours… the pressure will only continue to build until a whole new volcano of emotions erupts.

 

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Triggers – The Good, The Bad, The Ugly

In Autism, there are a lot of different triggers and even different types of triggers. At the core, a trigger is something that sets the Autism off. In some cases, it may be what initially brings the Autism to light, or… ’causes’ it in children. In other cases, it may be just what sends a child into a furious tantrum. There are also good triggers, which can cause a calming and comforting effect in Autistic people.

Probably the hottest of the heated debate topics is the vaccination trigger. Many parents witness first hand their child’s descent into Autism shortly after getting their MMR vaccinations…. going from a loving and talkative child into a shell of a child that can not speak, make eye contact or play normally. This issue is probably the one hot button topics which actually brings parents into the violent, out of control monsters that they so desperately fight every day to keep their children from becoming. It’s primarily due to large pharmaceutical companies having a hand in making sure that people keep paying for those vaccinations and lining their own pockets. Whether that’s true or not is not really my concern, I’m not here to settle any debates for you. I’m just running down a list of triggers, in this case, the ugly. Not just because of what many people say it can do but because of what it brings parents to do. I’ve even been silenced on one popular Autism website simply because I question both sides, rather than say what they want to hear.

Another hot button topic is the GF/CF diet which doesn’t really bring out the monster in most parents, as I think it’s safe to say that most parents agree that either it works, or simply doesn’t work in their case. Basically, in this case, the gluten/casein can trigger a drug like effect in the brain and send your child into a very disruptive, very violent state of confusion and disobedience. It’s definitely high on the bad scale of triggers.

However, not all triggers have to be bad and that’s the point I’d like to make in this post… there are counter triggers, the good side which can not be ignored. The problem is, they can be harder to find.  I’d like to give you a couple of examples and then give you a very real example from this last week-end.

Many people have said that horses can be very therapeutic towards coping with Autism, in fact, can snap them right out of it while riding. There are even some ‘camps’ set up where Autistic children can spend some time with the horses and learn to ride.  Whether it’s a bond with the animal, the motion of the riding, the feeling of the ride… no one can say for sure, but it’s widely regarded as a great trigger for handling the overwhelming nature of Autism.

If you’ve had a chance to see the Temple Grandin movie, you will recognize the squeeze machine. Temple Grandin, after witnessing a similar device used on cows, created her own device which would simulate a hug without the need to touch anyone. She would use this to calm herself, to steady herself and to handle extremely tense and overwhelming situations.  She has gone on to do studies and found that it works for most people, not all, but most… Autistic or not.

As for this week-end, I’ve come to realize that my son has his own good triggers. First, we took Cameron to visit some family that live on a lake. The moment we got out of our vehicle, Cameron began begging to go for a boat ride. When I say beg, I mean he really begged. Unfortunately, that wasn’t the plan so it didn’t happen until after dinner…. however, it kept him happy just knowing it was there. After we all ate, he got his chance at a boat ride.

He sat down in the boat, excited and eager… as the boat pulled away from the dock and slowly made it’s way into the lake, Cameron turned to his mother and said “ok mom, we can go home now.” It wasn’t that he was scared, it wasn’t that he wanted the ride to end… it was that he was content, 100%, totally, completely… content.  It was as if I had been starving, spent an hour at a buffet and said “ok, I’m done, I can go home now.”

Then we took Cameron swimming, shortly after getting home afterwards, Cameron put his hand on my cheek and said “Dad, you’re my best friend ever”… then the next day, while swimming again, he came over to me and gave me a kiss on my cheek.

I don’t know if you could fully ever understand the depth of that without having an Autistic child yourself, and if you do have an Autistic child… you would surely agree, getting that kind of voluntary, unexpected and completely random positive emotion out of an Autistic child is truly wonderful.

You must look for these times, these triggers, these moments because as important as it is to know what the bad triggers are, it’s equally important to know what the good triggers are. I really don’t want my son to go through the hard times and so I shield him, but I can’t shield him from everything all the time no matter how hard I try.

Ultimately, shielding is good, but limiting. It doesn’t bring happiness, it doesn’t bring contentment, it doesn’t bring all the good things.. it just prevents the bad things. And while important, it won’t get you the hugs, kisses or admissions of being your best friend.

Find those good triggers, find those few things that will make your child truly happy. They may be more rare than they should be but they’re out there… and when your child swims over and gives you a totally random kiss on the cheek after years of rarely getting so much as a hug….  it’ll all be worth it.

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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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Tugging on My Ear – For Comfort, For Love

One of my earliest memories of Cameron, apart from his birth, is how he always had to be playing with my ear lobes, or my wife’s. In fact, he would get down right mad if we didn’t let him or he wasn’t able. It was such a big part of his life that he would do it in his sleep. If he fell asleep on me on the couch, or slept in our bed, his hand would wander until it found my ear even though he was fully asleep.

All children find something to do that soothes them, whether it’s sucking a thumb, holding a favourite blanket or stuffed animal… we just assumed that this was his way of soothing or comforting himself. As he got older, it became more of an issue for us as he needed it more and more, even if it meant us having to be bent over uncomfortably just so that he wouldn’t be furious.

It wasn’t until years later, after his diagnosis that we discovered that it was so much more than that. When Cameron first went to school, we came to realize that his biggest fear, his biggest issue is feeling unsafe. Not just unsafe, but that those around him are not keeping him safe.

You could argue that ‘soothing’ is a form of helping yourself feel ‘safe’ but I think it’s more than that. Cameron would not do the ear thing with just anyone, it wasn’t just a motion that helped him feel better.

He tugged on our ears because it kept us close, it kept us in contact and it made him feel safe.

More so than even that, because he was unable to speak and is still very much unable to express his stronger emotions, it was his way of saying he loves us and he needs us.

I think many people dismiss Autistics as being unable to handle and express emotions but the truth is, if we look hard enough, if we don’t look passed the little things… they are telling us, in their own way.

Cameron was telling us a lot with his cute little self soothing technique, I just didn’t know how much.

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