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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The Happy Birthday Colin fan page vs the ghost of Christmas future

I’m sure you’ve heard of it by now but if not, there’s a Facebok fan page out there called Happy Birthday Colin that a mother created for her son to prove to him that there are caring people in the world. To best explain it is to use her own words from it’s title status:

I am Colin’s mom, I created this page for my amazing, wonderful, challenging son who is about to turn 11 on March 9th. Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him. So when I asked him if he wanted a party for his birthday, he said there wasn’t a point because he has no friends. He eats lunch alone in the office everyday because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that would be better than any birthday party. Please join me in making my very original son feel special on his day.

It’s a nice gesture, a well intentioned thought. And the response has been incredible. Their fan page just hit over 2,000,000 likes as of the time of this writing, which is more than most Hollywood celebrities get. They also get a lot of mail delivered to their local post office, again, more than most Hollywood celebrities. Naturally, this will be rather short lived as he’s not a Hollywood celebrity and his birthday is just one day and basically, his 15 minutes are finite.

However, as it circulated through out the social media world and the news media, many people took up arms and went on the attack against this well intentioned thought. The idea that a mother would make her son a celebrity based on the fact that he has no friends is going to leave a mark on his soul that can never be erased. The fan page might be removed one day and his 15 minutes will be up at some point but those news stories will live on and the history of what she did and what was said will live on forever. And he’ll have to live with that.

GhostOfChristmasFutureScrooged400Those people refuse to ‘like’ his page. They have no problem though with blogging and writing about how terrible the mom is. They have no problem with predicting a very dark and grim future for Colin.

I have a few questions though. What sort of rosey, magical rainbow paradise are you picturing this kid is going to live in when he’s older if only this fan page didn’t exist? Do you honestly think the bullies will just go away as he gets older? Do you honestly think that he’ll just one day start making all kinds of friends for no real reason other than him being older?

Don’t get me wrong, yes I think people will find this page or it’s story in the future and yes, some will likely even laugh at him for it or maybe even use it against him in some way. But do you honestly think people that would do be so mean really even need it? Do you honestly think that a bully, wanting to hurt someone for no other reason than for the enjoyment it brings them to make someone suffer, would take the time to surf the web and drum up decades old info to use on someone?

Let me put it another way, if this mom hadn’t done this, do you honestly think that a bully would think to himself “well, I didn’t find anything about him on Facebook, I guess I just won’t bother him.”?

No, a bully is a bully and they’ll make something up if they don’t have the ammo they need. A person that would laugh at someone else because of something embarrassing his mother did to him as a kid is a person that is going to laugh at you for no good reason at all. A potential boss that decides on whether or not to hire you based on stuff from your childhood? Not worth working for. Anyone that would judge you because you had a rough childhood or worse, because you had a mom that did something so incredible for you even if it was embarrassing? Those people aren’t worth knowing.

You are not the ghost of Christmas future anymore than I am. However, there are a few things that I do know.

1. Parents embarrass us. It’s just the way it is. It’s like it’s their job. They hug and kiss their kids in public, they wear old outdated clothes, they don’t understand the latest slang or music and they go over the top to show their love sometimes. It’s what parents do. No, not usually to the tune of 2,000,000 Facebook fans but honestly, to a kid, does it feel less embarrassing when your mom shows people a picture of you in your underwear or naked in the tub?

2. Bullies don’t disappear just because your parents shelter you from them. This mom could stay out of this kid’s life completely but he’ll still have no friends. He will still get bullied. She could be the most perfect parent on the planet and do everything right and he’ll still have no friends. The bullies will still be there. During his birthday, as he gets older and later in life… whether she makes a Facebook fan page or not, the bullies will be there.

Listen, the phrase “it gets better” is true but it’s not because our parents hide us better or because the bullies or bad people go away, it’s because we grow up. We begin to understand that those bad people have no power over us and that it only ever felt like it did because we allowed them to have that power. It does get better but not because of anything anyone else does, it’s because we just won’t take it anymore. We get stronger.

Telling this mom that she did something terrible by doing this? That makes you the bully. Telling this kid that the bullying doesn’t stop and that he’ll have no friends in the future? That makes me the bully.

But whether his mom embarrasses him, or whether you rip into her for it or whether I tell him the future is still pretty sucky… none of that matters. It’s on Colin. Just like it was on you, me and everyone else. We need to be the ones that love our parents for embarrassing us like they did because of just how much they loved us. And we’re lucky to have that. We need to be the ones to stand up and say that those bullies are wrong and worthless and have no power over us. We need to be the ones to say that it’s going to get better because we say so. Not anyone else.

You can judge this mom all you want but don’t do it from your pedestal of mystical foresight as if your best guesses of what the future will bring are some cold hard facts when you know full well that you hate it when other people do that to you as they dissect your every parental decision. Don’t be a hypocrite. Don’t be the person you hate when this stuff happens to you.

Finally, consider this.

What if your message hit home, not just with this mom but with every parent every where and collectively we all stopped doing every single “well intentioned” thing we could do for our children for fear of what a bully might say later in life.

What then?
Did you win?
Or did the bullies?

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Your brand of acceptance is hurting us

hurting_usIf you’ve ever lashed out at someone in anger, if you’ve ever expressed your opinion as if it were fact in opposition of someone else’s opinion, if you’ve ever labelled a complete stranger as something terrible when you couldn’t possibly know, if you’ve ever accused a stranger of something without possibly being able to know if it’s true or false, if you’ve ever attacked someone because they think differently than you… you are a part of the problem.

If you fight for acceptance for yourself, a loved one or on behalf of an entire community but you use hate, anger, bullying, accusations or any other form of verbal (or physical) attack as a method of gaining that acceptance… you are hurting us, not helping.

I have watched for years as the media tries to portray autistics as potential time bombs of aggressively violent energy. They try to pin autism on mass shootings or tell stories of padded cells in classrooms that are designed solely for autistic children. I hate seeing these stories but I do like the aftermath in which the entire community often joins together in an effort to show the media and the world just how wrong these portrayals are.

But then I visit a Facebook fan page, read a Twitter update or scroll through the comments on an autism blog and what I find is so discouraging. I see good people fighting a good fight but instead of sharing or expressing opinions, they’re lashing out. They’re hating each other. They’re… aggressively violent.

When I see a self advocate lash out repeatedly at parents or even other autistics, accusing them of being potential murderers or I see a parent telling all other parents that they must hate their children because they don’t word things in a certain way or I see a parent accusing another parent of supporting domestic violence because they don’t report their autistic child for having a meltdown… I see our collective efforts falling backwards. Not progress.

All this negativity, all this lashing out, the accusations, don’t you see where the media is getting it from? Don’t you see where the misconceptions are coming from? It’s not from something they make up. It’s not from fantasy. It’s from you.

How can I ever hope to prove to anyone that autistics are good people, because I’m a good person and my son is a good person and other autistics that I know are good people, when I see so many other autistics that are so full of hate everywhere they go? How can I ever prove that parents want a more peaceful, tolerant and accepting world for their children when I see so many other parents focusing so much of their time and energy on judging and hating other parents that they don’t even know?

If acceptance is what you want but all you ever seem to do is hate… you are hurting us. And by us, I mean you and me and everyone. You are a part of the problem. Like a car crash during a Formula One race, you are what the people will see and they’ll think that’s all there is. They’ll quickly forget all the good things done and all the great things said and they’ll report on your hate. And that’s how we will all be painted.

What I fear most is that you won’t even realize that you are the one that hurt us. You won’t even realize that you hate the media even more after and be even more hateful then before. And you won’t even realize that the hate you spread will only hurt us more from there.

Yes, it sounds crazy, but it’s what I see. It’s what my opinion is.

You might not like me for saying it but if you are trying to hurt someone else, then you are the problem. You are hurting us.

And honestly, if you don’t like that I’m saying this then perhaps you should ask yourself why that is. Perhaps it has more to do with you than it does me.

 

This is part 3 of what I want to say on bullying, hate and the autism community.
Parts 1 and 2 can be found here:
Hate me, for I am but a lowly autism parent!
Adults are bullied too. Don’t let it happen to you.

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Adults are bullied too. Don’t let it happen to you.

Every day I see people, grown up people, being bullied online. Only they don’t know that they’re being bullied.

What’s worse is, I see people, grown up people, being bullies online.  Only, they don’t know that they’re being bullies.

Chances are, if you’re in the autism community, you’ve been bullied. Yes, people get bullied online every day no matter what community they’re in. But when it’s parenting, especially special needs parenting, either you’re very new to the experience or you’ve experienced bullying.

Parents, instead of receiving suggestions, advice, education… they’re demonized, accused of being potential murderers, abusive, future stealing wrong doers. Every decision, choice and even every little word they say is put under a microscope and ripped apart. A parent receives an autism diagnosis for their child, visits an autism Facebook fan page and asks a simple question. The next thing they know they are in tears, hating themselves and feeling worthless. Sounds extreme? I’ve seen it happen. And it is not ok.

Autistics, instead of being heard are told that their opinion doesn’t matter because they’re “not high functioning” or “not low functioning” enough. They’re told that they need to be cured or worse, that they never should have been born at all. When the media rolls out in search of someone to talk to about autism each Autism Awareness Day, who is it that they search for? Parents. And if they do look for autistics, they seek out the children that are behaving the worst… the ones that will make headlines and drum up sympathy.

It is even worse if you’re an autistic parent. Believe me, it makes absolutely no sense because to me, it seems to me that the smart thing would be to get the perspective of someone that has been an autistic child, is now an autistic adult and also the parent of an autistic child. Who could have more insight into all angles than that? But sadly, no. Instead of seeking autistic adults out for guidance, they are bullied by all comers. Other self advocates, other parents, the media… all of your choices are wrong, all of your opinions are invalid.

Now, don’t get me wrong. Not everyone in the world is a bully. Not every experience is going to go that way. However, as I said, unless you’re very new to the community, you’ve experienced it in some form or another.

What I’m saying is, you need to not be the victim. You need to not let yourself be bullied. You need to stand up. Whether it’s to stand up and not take it, to stand up and walk away or stand up and just declare that you won’t take it anymore, you need to stand up against bullies. Prove to your children, all children, your fellow adults and everyone that bullying doesn’t belong in the autism community or even on the internet anymore than it does in our children’s schools.

In many ways, this is worse than what children get in school. I’d rather take a punch in the face than a bunch of other parents or self advocates telling me that I’m a terrible parent.

But just like the punch in the face from my school days, I don’t have to take it. Neither do you.

Acceptance can not be achieved by bullying others. Lack of acceptance does not bring about more acceptance. Anyone that professes to want acceptance for all but bullies you into it is lying, or strongly misguided. Not one single person on this entire planet that truly wants to be accepted or for others to be accepted would ever, in a million years, attempt to make you feel like you’re worthless. They would never ever want you to feel like they feel… bullied.

Why do some people hate me? Why do some people attempt to bully me? It’s because I refuse to believe that their brand of bullying is acceptable and furthermore, I refuse to join in. I will not be a part of it. Even if I do not agree with someone else’s opinions, methods or decisions… I will not bully them for it.

Don’t ever let yourself be bullied but more so, please, please please… do not ever find yourself being the bully either.

We are in this together. The bullying stops now.

It’s my hope that you share this with everyone, far and wide… if not this blog post then certainly the message; do not let yourself be bullied. You do not have to feel that way.

Please watch and consider this:

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Hate me, for I am but a lowly autism parent!

Oh, the ‘anti-parent’ movement grows. It grows!!! There is a small band of self righteous, holier than thou haters out there that insist on finding faults in us all. If they can’t find faults, they’ll just compare you to someone that they did find faults in because we’re both parents so, hey, if the shoe fits…

Fine, fine I say! Bring it on. Hate me if you must. Not only do I not care (after all, what you think of me is none of my business) but I sat here pondering… if they must go to such lengths, the least I could do is make it easier for them.

So here is my list of reasons that you should hate me, for I am but a lowly autism parent.

  • I try to change my child ever single day. Both of them!! That’s right. Autism, no autism… I don’t care. I change them. And I like it.  One of them is mean to their brother? Damn right I stop it. Both of them fighting over nothing? Time outs all around!! Not saying please and thank you today? Best believe they’ll be changed children come tomorrow. Don’t know how to spell antidisestablishmentarianism? Time to pick up a book kids, you’ll study till you’re changed and you’ll like it! Judging some other kid because they’re different from you? That changes… NOW. Yeah, I want to change my kids. Not because I don’t love them the way they are but because I do.
  • Drugs and therapy for all!! What? You’re not suppose to use meds on your kids? I guess that fever should just run out of control until it’s hospital time then huh? Oh, that infection? Who needs anti-biotics??? Super hyper? Unable to sleep? Super depressed?? As strange as I am but any time I have to choose between a doctor recommended prescription or a child that is unable to do anything due to what that prescription could help… I choose the prescription. Oh, therapy too. One child didn’t talk until he was older than 3, so I paid $150/h that I didn’t have to get him speech therapy, cause I’m an evil parent like that. Now his vocabulary is right on track and he reads books that are 2 grades higher than his age level… you should hate that. He’s doing so much better than he would have if I just accepted him for who he was and let him be. Hate me!!
  • ABA is so cool!! My son went and played with other kids and was encouraged to be kind, courteous and even engage other children in conversation. He even started conversations!! From there we went out for lunch and he met more children. You should hate me for that because hey… ABA right?
  • The things I say… oh man, they’re great things and come from the heart but the way that some people can magically turn them into the most vile, attrocious non-sense with a single wave of their “what I hear when you say” wand… and man, I even hate myself! I can’t believe “I love you” could mean so many terrible things. But you manage to twist it up enough and I disgust even myself.
  • I struggle. You should definitely just toss me in the pit for that one. I mean, no sleep, huge debt, emotional strain, lost marriage, hours and hours of meetings, appointments… you know, years and years and years of giving 110% for my children, with and without autism… you should definitely just kick me in the head now for how much you hate me because this is about my child, right? It’s all about what he feels so I am not allowed to feel anything. None of any of what I go through is even really happening. It’s just pixie dust in the wind that I make up and pretend makes me tired so that I can say that it can be hard on me sometimes too. I hate me for even being tired. I mean, come on… 4 hours sleep, 3 meltdowns, hours at the IEP meetings, therapy and grocery shopping for gluten free food I can’t afford… that’s just today! I shouldn’t be tired at all. Stop pretending it’s real dammit. See, even I hate me.
  • My child is happy. Yup, I said it. He has friends and is doing well… not abused in the slightest, not alienated or singled out… not at all the autism life that you anti-parent hater types seem to profess that a life of autism is supposed to be. I don’t fit into the mold. I don’t have a say. I’m a pox on the community. I made sacrifices and worked my tail off and did absolutely everything I could and more and now my child is happy… I’m a terrible parent. You should hate me. I’m sure it goes against everything you believe a parent should be or that an autistic child should be with their parent… happy. Sheesh!
  • I don’t hate everyone else. That’s a big one. You should hate me for that. Those other parents that want a cure for their kids? I don’t hate them. Those other autistics that want themselves to be cured? I don’t hate them either!! Those people that struggle for acceptance, for understanding, for awareness, for finances, for an IEP that works, for a few more hours sleep, for more education, for more understanding law makers and enforcers… for… well, for it all really… I don’t hate a single one of them. For that you should definitely hate me. It’s almost like I’m on their side. On everyone’s side! It’s almost like… I care.
  • I’m not every other parent. Another big reason to hate me. Yeah, I know that some parents do over medicate and some take drastic actions when things get too hard and some people really are just lousy stinking parents. You should hate me for not being them. I mean, I’m a parent, just like they are, but aside from that, we have practically nothing in common at all. And you hate them right? You should totally hate me too because if you hate them, and I’m nothing like them at all, that’s more than enough reason to hate me too.

Oh anti-parent squad, if you didn’t hurt so many people, you’d make me laugh. But you do hurt folks. Good folks who are good parents. And you hate them before you know them.

And there’s nothing funny about it.

I don’t hate you, but I do wish you would just stop.

In the mean time, you should hate me. Because I’m a parent and I have a child with autism. And the one thing that having a child with autism and you haters hating me will have always in common is… I’ll enjoy every second of it.

Tyler and Cameron

Tyler and Cameron

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