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A wish for his autistic brother

Tyler

Tyler

I would like to introduce you to Tyler. He is currently 6 years old and is as smart as he is adorable. He has an amazing sense of humour and is very clever. He’s also very clumsy, often spilling stuff but feels terrible about it and is quick to clean up and make it right with a warm hug.

Recently, a woman asked little Tyler what he would ask for if he had 3 wishes.

Now, you would expect that little boys would want all the candy in the world, or all the toys they could dream of or unlimited video game time. That’s what we want for children to wish for, right? That’s the kind of stuff that should be on the mind of a little boy. That’s the kind of thing that we like to think that all kids have to worry about… how to get more of what they like.

So what was Tyler’s first wish?

Tyler wished that his brother Cameron did not have autism.

This is the reality for siblings of children with autism. Children want their family members to be the best that they can be. Big brothers, moms, dads… they are the real superheros. And to a 6 year old little boy, they shouldn’t have anything wrong with them. And to a 6 year old little boy, who loves his brother so very much… Cameron has something wrong with him. Autism.

In the autism community, if an adult said that, many would be outraged. There’s nothing wrong with Cameron and to want his autism to be gone would be to want Cameron to no longer be Cameron.

For a 6 year old little boy though, who loses time with his brother because he’s off stimming or because they fight because Cameron obsesses too much or lacks the proper communication skills, or because he can feel his own 6 year old intellect slowly surpassing his big brother’s 9 year old intellect… his number one wish in all the world, more than games or candy, is that Cameron didn’t have autism.

What did you wish for when you were 6 years old? Was it for toys? Candy?

I don’t think he realizes it yet but there’s some small part of him that is becoming more and more aware… his big brother is going to depend on him.

As time goes on, I know Tyler will continue to love him and accept him and be happy that his big brother is just the way he is, but I also know that there will always be a 6 year old little boy deep inside him who’s only wish is that his big brother didn’t have autism.

What were his other wishes?

That I would cook dinner faster and that the wall in his bedroom had nothing on it. Phew, still a 6 year old after all ūüôā

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When you have a teenager sibling that is driving you crazy

frustratedI received a request for advice recently from a rather frustrated sibling who’s brother seemed to be doing well… until he hit puberty. Since then he’s peaked, maybe regressed, diet went downhill and has become aggressive, with yelling and breaking things.

If only I could say that the teenage years are supposed to go smoothly… if only I could say that there was some kind of therapy, or words of wisdom or even a pill that could make it so that everything would settle down and… and be normal. And I’m still talking about a neurotypical teen here. It’s infinitely more complicated with a teenager that has autism. And I’m sorry, I’m so sorry, but you’re going to have to be the strong one and be there for them and ride it out and hopefully go back to how things were on the other side.

The autistic mind is an over active mind. Brain scans will prove it but you just need to be with an autistic for a while to see it. Lack of sleep, constantly obsessing over what they love, needing to stim constantly… there is no off switch. There is no slowing down the activity of an autistic mind.

When puberty hits, as it does for anyone, the chemicals and hormones of a person go radically out of balance and changes start taking place from head to toe. Emotional states shift wildly, the mind goes on overload and the body sends rapid signals too fast for the brain to handle as if it wasn’t already overloaded already.

When your brain is set to speed times 2 and it never turns off and you have to go through all of that… let’s just say that it can be a lot to handle for anyone.

It’s easy to become frustrated with them when it’s been happening for years now, it’s getting worse instead of better and it seems like there is no end. But the teen years are finite. Puberty doesn’t last forever. And as difficult as it is to remember year after year… your teenage autistic sibling is far more frustrated than you are. They have it much worse than you right now.

At the same time, when you have all of that going on and you just wish you could fix it, you just wish you could make them all better, you start to get frustrated with your parents, with the therapists, with the people who make the drugs that are supposed to calm you down, with the teachers… and on and on. Why isn’t anyone helping? Why isn’t anyone trying harder? Why are they doing such stupid things with their dumb ideas and only making things worse?

You have to realize that they care too. And they probably understand what is going on much more than you realize. But they are as frustrated as you are. They just as powerless as you.

I have only two words of advice on this…

First, on their wild roller coaster of emotions and attitudes and outbursts, there will be down times. Times of regret, hurt and defeat. They may be momentary and they may be a lot less frequent than all the other emotional states they will be in but in those moments, they will need their siblings to be their rock. They will need their siblings to be their role model. The ones to see them through this. The ones to never give up on them no matter how hard it gets.

Second, as much as it feels like it will last forever, it really won’t. I won’t lie to you, in all these chemical imbalances and changes, people don’t always come out the other side better off. Sometimes there is regression, especially for those with autism and they may become more secluded. But most often, with someone to see them through it, they stabilize and mature and move beyond that and forever remember the brother/sister that was there for them.

This might not be the advice you’re looking for but honestly, other than learning some coping techniques to handle aggressive behaviors or in handling your frustrations and such, this is just something that you’re going to have to do. You either decide to walk away because it’s too much or you stick it out and you be there for them.

Either way, don’t judge them for it. Certainly don’t hate them for it. This is beyond their control and not something they’d wish on anyone, certainly not themselves and certainly not you.

I leave you with some links that provides more insight on how teens with autism will change, behave, grow and even may give some insight on how to help out.

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Sometimes Autism makes things easier

Most of the time, Autism makes things much more difficult… even the most simple of tasks. But sometimes, in some interesting ways, it actually makes some things easier.

Routine

All children need some sort of routine… even if that routine is a complete lack of routine. Wait, does that make sense? Anyway, when things are predictable, children feel the most safe and at ease.

This is ever more so important with autistics. Think of it as… obsessive compulsive disorder with a photographic memory. Now, obviously, not everyone is to that extreme but it should give you a good idea of what some people have to deal with.

If your child can memorize the placement of 1500 items around your house and NEEDS them to be in the exact same place at all times… you may as well invest in super glue because those things are not allowed to move.

So how is this a good thing? Well, think about it… your child kind of forces structure into your life, whether you’ve had it or not. You will always know when supper time is, bath time, bed time… you’ll always know which movie(s) or book(s) you’ll have to choose from… you’ll always know where you need to be and when.

Ok, imagine this.. you have one child with Autism and one without. Nap time is at 2pm each day. At 2pm every single day, your autistic child runs off to their bedroom and gets mad if you’re not there to turn off the light. Your other child? (S)He’s in the living room screaming and crying because they don’t want to have a nap today.

See the difference?

Same goes for bath time, bed time… you name it.

When the clocks were changed for Day Light Savings time one year, my son had a meltdown because we tried to keep him up a little bit later to adjust him to that extra hour. He was mad because he wasn’t going to bed when his internal clock told him it was time to do so.

My other boy? He has a tantrum when it’s time to go to bed… at bed time!

School

Dropping off my autistic son at school, in the beginning, was easy. You take him in, he sits down, picks up a book or a puzzle or a toy and you walk out. He did what he needed and at the end of the day, he went home. He’d have the occassional meltdown, not listen or what ever… but the fact that there were other people, that we weren’t there.. that life was just happening around him, didn’t seem to matter a whole lot. (this is aside from the break in routine, as discussed above. He did not like the routine change, but I’m talking about how it was once school became a routine… anyway, I digress)

My other son, on the other hand, was super excited about school because his older brother went there every day. It was a magical land filled with friends and games and stuff to do and you got smarter doing it. However, when you’re 3 and your parents abandon you at the door and there’s strange people all around you… that perception of the place quickly changes.

I’m writing this mid way through November and my son still cries when we leave him at school… he started at the beginning of September. It’s not a routine for him yet. It’s not feeling safe for him yet. He has a lot of emotions going on and a lot of needs and, while is doing very well at school because he listens and does his work, it’s a bit heart breaking to hear him bawling his eyes out as I walk back to the car (don’t look back, don’t look back, don’t look back!)

Presents

My son with Autism told us what he wanted for Christmas in July. JULY! While that may not be all that surprising in itself, what is a bit of a shock is that it has remained and still is the same wish. See, most children want what other children have or what they see on the television or what they hear is the next cool thing to have… my son figures out what he wants and that’s it. There are no other options. In fact, you can’t even ask him for other options (“What else do you want besides that?”) because there is nothing else. He spends a great deal of time thinking about it, but comes back with no answer. He wants what he wants.

By the way, heaven help us if we don’t get that for him! Yeesh!

My other son… ¬†put it this way, when family members phone me and ask what to get for him, I say “I have no idea.” It’s not that I don’t know him, I do…. it’s just that his tastes change, his desires change and, this is totally just my boy, but he has no specific want.

When I ask him, he tends to say something that he knows his big brother wants… why? Because there is nothing specifically on his mind.

What I expected is that his mind would change from product to product as he sees them on television or passes them in the store, and to an extent that does happen, but once all that is removed and we’re sitting around the dinner table, he has no Christmas wish list in mind.

One, I know what to buy for… the other? Haven’t a clue!

enjoy the little thingsConclusion

That’s only 3 examples but this is getting long already so I’ll end with this… Autism truly is a disorder and as such, can cause much disorder. In your life, in your family… it’s a struggle and no one can argue with that.

But there are positives. There are some ways in which you can appreciate the good differences. Not just the savants, not just the lessons of life in being more appreciative and patient and loving… but also in just realizing that it’s not all doom and gloom.

Take the positives, no matter how minor or insignificant or trivial they may seem… and smile.

I’m not asking you celebrate with me as my son doesn’t care if I leave him with strange people or not… but smile. Because it’s different.

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Balancing the attention between one child with Autism and another child without Autism

One of the most powerful scenes in the NBC hit tv show Parenthood, for me, was when the father sat down to talk to his daughter about how he missed her soccer game due to her younger brother’s Aspergers diagnosis. He needed to be somewhere with his son and couldn’t make it to her big soccer match.

He apologized for how disruptive it had all been for her the last couple of weeks, at which point she says “Weeks? Dad… try years.”

It came as quite a shock to him as she sat there and listed off a bunch of events in their life that was affected by Max (her younger brother with Aspergers)… “ever since I can remember, it’s been all about Max.”

It’s at this point, I wished television had a “look inside his head and see what he is thinking” component but it doesn’t.. in a way, it’s a good thing because that leaves you and I to really take it in with him and realize…. wow.

Advice on how to maintain balance

Cameron and Tyler

Brothers

I’ve had a lot of people ask me lately how I maintain balance between my two boys, Cameron (6yrs old with Autism) and Tyler (3yrs old without Autism)… the truth is, I just keep them both and the need to keep them balanced in my mind.

That may be hugely over simplifying it but at the core, that’s it. I am just always conscious of it and even concerned about it. I don’t want either of them to ever feel left out. So every time I’m with one of them, I wonder what the other is doing or thinking.

Cameron is in a special class, it’s a very very different class from Tyler’s class. He gets better technology to use, there’s less children, more adults and even though the routines are more strict, the structure is less so. Being a class of autistic children, there’s no real¬†curriculum, not in the sense that some other classes have anyway.

We’ve missed out on carnivals and amusement parks because the noise and crowds would simply be too much for Cameron. That means that Tyler has missed out as well. We have avoided some restaurants because Cameron might be overwhelmed at them… that means that Tyler has missed out as well.

Right now, Tyler is 3 and so, that old cliche about not missing what you don’t know about applies. But soon he will…. and he may resent having missed out on some things in his life due to his older brother.

So, every time we don’t do something or change something to¬†accommodate¬†Cameron, we have to keep Tyler in mind… going to a different restaurant, or someplace else that is fun.

It likely never really balances exactly but it’s something. So long as you’re conscious of it, it’s something. An effort will be made.

It goes both ways

When Cameron was little, like, really little, he needed some snuggle time with me every single morning when he first woke up. As he got a little older, he rejected that idea. He not only didn’t need it but didn’t want it. Now he enjoys a hug from time to time, we have our routine hugs and kisses before bed but any semblance of affection in the traditional sense beyond that is nowhere to be seen. Which is ok by me. I know he loves me with or without it.

Tyler on the other hand loves to snuggle while he watches tv, gives me hugs quite often and is not shy about showing his affection at all.

Sometimes this has me wondering though, as I sit with Tyler on my lap watching tv while Cameron is in a chair across the room… does Cameron feel left out?

I have asked him multiple times and will continue to do so from time to time, if he’d like to sit on the couch with me, he always says no… and I respect that. Still though, a part of me wonders if there’s a small part of him that actually would like to but prevents him from doing so. I’m not sure I could describe it adequately enough but you get the idea… a part of him longs for that show of affection but a bigger part of him prevents him going through with it.

It’s also entirely possible that he doesn’t feel left out at all and really couldn’t care less that I snuggle with Tyler and not with him. Unfortunately, there’s a good chance that I’ll never really know for sure… or if I do, it’ll be later in life… when it’s too late.

The future

The problem with all of this is the resentment… what we all fear of our children, regardless of special needs. The last thing we want is for our children to resent each other for something that was our, the parent’s, fault. Something that we could have done better, avoided, recognized… done something about.

Hindsight… it hurts because by the time you get it, it’s too late.

Unfortunately, I don’t know your family dynamic, I don’t know you and I don’t know you’re children… so I won’t be writing any blog posts on tactics to use or methods to apply to your daily life. The only thing I have to offer is…. keep it in mind.

So long as you keep yourself aware of it, you’ll do something about it. Your mind kind of makes you do it.

There are quite a few articles out there, by doctors, with good suggestions… like having nights dedicated to each child, having “desires” lists for each child where they each get to have their desires¬†fulfilled… putting them on equal footing… ¬†some of those articles will have some insights that may help you.

But ultimately, only you can know what will and won’t keep things fair and balanced. In fact, chances are you won’t know, not at first. But you’ll figure it out… so long as you always keep it in mind.

Me?

I give Cameron an extra “I love you” from across the room while I have Tyler sitting on me. I just like for Cameron to know that Tyler may be on my lap, but I’m thinking about him too.

See? It’s not complicated. It’s not worth putting into a “how to” article to share with the world.¬†It’s something I do… you’ll find something you can do.

Just remember, it’s not just the negatives (missing out on things, avoiding fun stuff, etc) that cause resentment… it’s the good things too (showing affection, spending more time with, etc).

Keep each child in your mind equally because they are equals. They deserve to be treated that way.

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The complexities of a hug

My son used to need snuggle time with me every morning when he first woke up. For the first little while, it was a bit of an annoyance (I sometimes had other things I needed to do) but a very pleasant and welcomed one. I cherished that time we had each morning and even though he refuses to do that with me anymore, I still remember it fondly.

While he never was a hugger or anything, that snuggle time was pretty awesome… but, once he no longer desired that, it all came to a stop. He still loved me but there were no more “signs” of love, in the traditional sense.

Then, a few years later, he become more and more willing to give and receive hugs… until eventually he became to depend on them. Every single night, before bed, we do hugs and even kisses… as regularly and routinely as we had done when we had our morning snuggles.

This too will stop one day, as he gets older, but that’s ok. I love it for right now and knowing what I know about Autism, it’s not something that I would ever take for granted.

How does a hug work?

hugsNo one ever thinks to ask what it is about a hug that makes it so comforting… how does it work, what the rules when hugging? That’s because it pretty much comes naturally. Someone hugs you, you hug back and all is good with the world.

It just isn’t that simple for my son. I mean, for the most part, he gets it… he loves to hug me before bed and there is no way he could get that wrong.

Have you ever hugged someone because they got hurt or felt sad? Cameron does that too… all on his own. No one taught him that. However, this is where the complication comes in.

Egg timer?

Believe it or not, at this point, we have to start timing his hugs… so that he knows when to let go. That may sound a little odd but basically, it’s become necessary.

When his little brother is hurt, Cameron will grab him, and hug him with every fiber of his being… and not let go. To Cameron, that’s what you’re supposed to do.

And I love that about him… I truly do. He really truly cares, he really truly is trying to make it all better for his little brother.

But if you’ve ever grabbed onto an upset 3 year old and tried to hold him there, you know that it doesn’t work very well. After a few seconds, the little guy goes completely nuts and matters only escalate from there.

This makes Cameron want to hold on tighter.

When his little brother gets more upset, Cameron holds on more, thinking that it will help. He’s truly a wonderful big brother, I love that about him. However, he’s going to need a little guidance on this one.

Hug Instructions

As a parent of a child with Autism, I’m sure you can relate with this but…. there are just some things in life that you never imagined you’d have to give instructions on. Like giving a hug for example.

But that’s what it boils down to. Hug instructions.

The trick is to make Cameron understand that he’s not doing anything wrong. That we are so very happy that he loves his little brother and that he wants so bad to make everything all better.

While reassuring him of that, we simply need guide him in how to do it in a more appropriate fashion… for example, counting to 5 and then letting go. Recognizing when his little brother gets MORE upset and then letting go. Things like that.

And they’ll take time and take work, but it’s so worth it because I’d hate for Cameron to feel bad about what he’s doing and shut it out of his life forever.

I lost those morning snuggles and while I understood why and I didn’t really mind, I realized never to take such a wonderful thing for granted. And it’s entirely selfish of me, in a way, but I don’t want to lose Cameron’s desire to hug us.

And as much as his little brother gets upset when Cameron holds on too long… I’m fairly sure that he wouldn’t want his big brother to stop either.

Who knew that hugging could be so complicated?

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