I Don't Want You To Think My Kids Are Awesome

I see a lot of it around the Internet, people fawning over kids with disabilities because they are disabled. Because they don't know what else to say, since clearly a disabled child has nothing much to offer. That because these kids face challenges in life, the only things that can ever be said are over-the-top, candy-coated, and superficial. As though nothing deeper exists beneath the surface. Under that expertly posed, or not, cute kid photo. Descriptions of their hi-jinks the child never meant to be funny, but is used that way, anyhow. It's condescending. It makes these kids into nothing more than a marketing ploy for a blog post. Click-bait.

That's not to say our kids aren't fabulously beautiful creatures, but I would never want either of mine to be viewed as only that. I don't want my kids to be "awesome" when they do the most mundane things. That means expectations are low, and that's not OK. I don't want people patronizing my children by calling them geniuses, or special, or amazing, when they do something any other kid their age does. Being autistic doesn't mean they are incapable of even the simplest things. It doesn't mean they need to be fawned over like babies. Besides it being disingenuous, it teaches them that no matter what they do, they're perfect little people who can do no wrong. That the world revolves around them. That they should expect high praise every time they accomplish even the most trivial task, or have an independent thought. Sure, progress is always great, and celebrating new achievements is not a bad thing, but there is such a thing as going overboard. It's about respect. Presuming they know everything that is said, and goes on, around them.

I want more for my kids. I want them to be seen as whole people. As capable people. As individuals who will accomplish great things in life, surprising no one. Their paths might be a bit different, but they should be treated the same as their peers, with an attitude of "I knew you could do it!", and not,"Omigosh, you actually did it???"

My kids are awesome, because they are pretty cool people. Not because they are autistic and so they have to be, because it's a nice thing to say. Or because the bar is set so low, anything they do is a miracle. That's the opposite of how they should be viewed. I want them to grow up knowing they have to work hard, like anyone else. That they can achieve their goals. I want the accolades they receive to be well deserved because of their abilities, not their disability. Sure, each kid is different, and each child takes their own, unique path, but how we treat them along their journey is important. Treating them like you would anyone else, as much as possible, is the best gift you can give.

Too Bad, So Sad?

Fair doesn't mean everyone gets the same thing, it means everyone gets what they need.
(photo credit) 

Another Disney post made it's way around social media yesterday. I read it, but didn't pass it around, myself. I figured I'd beaten that horse to death, and I don't seek to be purposely annoying. People know my stance, and since all my (one-way) communications with Disney fell on deaf ears (hey, I'm not a super blogger that's going to tow the Disney line just because), I basically let it go...for now.

So, yeah, dead horse, except...something I read made me really angry. A comment made by another parent, who basically said if your kid can't access Disney like everyone else, then they just shouldn't go. I'm paraphrasing, here. There were really long comments, listing all the reasons why kids like mine shouldn't be allowed(?) to ever go to Disney, and that, sure, they'd miss out on certain experiences in life, but people with neurological or medical issues don't deserve special accommodations, so they just shouldn't go. It's just not fair to everyone else. Oh, and we are being irresponsible parents taking them, knowing it will be hard.

Now, I'm no shrinking violet, and in non-shrinking-violet form I responded. I wasn't especially nice in my comments back, for which I did feel a tad bit guilty, but I suppose when you know you're fighting a losing battle (kindness and compassion just can't be taught), you don't feel the need to play as nice as you would otherwise. I will admit I took the comments personally. Maybe they weren't meant to be taken as harshly as I read them, but the message was the same, whatever the tone.

I am sure a lot of people feel the same way as this commenter. That because my kids face certain challenges when visiting someplace like Disney, going there should be off the table for our family. Never mind that my kids, especially B, want to go, and ask to go, they just have to miss out because they aren't typical.

People being OK with any form of discrimination is bad. Teaching kids that everyone needs to receive the same exact thing, or life isn't fair, also bad. Sometimes there are individuals who need more help than others. Is it their lot to just hide away at home? Miss out on life? Live on the fringes of society, because they don't deserve to be accommodated?

This type of thinking goes against everything we say we want, when we talk about inclusion. It's separating people. Saying there are those who don't deserve happiness alongside their typical peers, because they access things differently. It's taking a group of people and seeing them as less. As not worthy. Only everything I'm trying to fight.

My kids work hard to fit into the world around them. Especially K. I mean, that girl works her tail off just to make it through the day, and I don't think it's wrong to expect others to work just a fraction of the amount to accommodate her, at times. I don't think I should feel guilty about wanting those accommodations. I don't think expecting human beings to show a little compassion for others is beyond reason.

So, to those who say I should just keep my kids home (unless I want to give this blog an over 18 rating, I can't say how I really feel), just know, we refuse to hide. I refuse to limit my children's lives. I refuse to give in to those who are mean-spirited, and who were actually born without an empathy gene.

All of this goes far beyond Disney, and it doesn't just have to do with autism. Every person on this earth deserves to be treated with respect, and dignity. Telling them to just stay home, well you might as well tell them to just not exist. None of us should stand for that.

Just Right

As you know, K started a new school about a month ago. After a long search, we found someplace I felt she would be comfortable. Tiny classes. The ability to take breaks, or do work outside of the classroom, whenever she needed. Understanding. People seeing her as a kid who wants to do well, and not as a kid who is trying to make life difficult.

She has been happy, and I have been happy.

But, I started to hear this nagging voice in my head. Can K really succeed at this school? There's no ABA. I mean, how can she succeed without ABA? There aren't incentives to change behavior. How will she do well without incentives? I felt like maybe it was impossible for K to succeed, have a future, without these things. She has autism! How else will she learn?

Then I realized something. For years K has had all those things. ABA, incentives, behavior plans. People structuring her day with rules and routines, barely allowing to make a choice on her own. Not respecting when she needed space. Forcing her to stay someplace, or do something, even when she couldn't handle it, because that is what's "expected". And guess, what? Things never got better. This is K's third program this year! Third! That doesn't exactly scream success. Not by a long shot.

I think we are so conditioned to think our kids need this therapy or that, we forget to stop and see if anything is helping. Or, if anything is hurting. And that's not to say that every kid is the same. It's about taking a look at your child, and seeing what is right for them. If things have been bad for a long time, or your child is such a ball of anxiety they can barely function, it's time to figure out why.  

I had a kid this year who was so consumed by anxiety, she never wanted to leave the house. Somehow, in my mind, I felt that she just needed more. More ABA. More structure. More therapy. Because obviously she wasn't getting enough if all she wanted to do was sit in her room, alone.

Now I realize it was too much. The pressure to change. Act differently. Make "better" choices. It took its toll on my girl. The fact that she fought me on therapy didn't mean she needed more, it meant I needed to back off, and let her voice be heard. That no one's opinion is more important than that of  my own child. Sure, she's an autistic 9yo, but she's also her own person, and I need to respect her as such.

This realization will also help me going forward with Ben. I won't make the same mistakes twice. I will be much more aware of what works, what doesn't, and what he truly needs. I don't care what the "gold standard" is anymore. I care about what makes my kids happy, and successful in their own right, not compared to their typical peers.

So, no, K's new school doesn't use ABA. She doesn't have a bunch of different sticker charts driving her behavior. Things aren't taken away when she doesn't meat the standard for "typical" that day. She is allowed to be herself, even when things aren't going perfectly. She isn't restrained, or put in a room alone. She is loved and cared for, viewed as a whole person, and not as someone who constantly says and does the wrong thing.

It's hard to break away from everything you've been told is "right", when it comes to autism. Taking the time to look back, and realize nothing has been "right" in a long time, gave me the strength to let go of everything I thought needed to happen, and see that my girl is happier than she's ever been. Sure, we still have more trying times, but now I am more open to seeing that maybe those times are caused by us trying to force K to be someone she is not.

She is K. She is autistic. She will always be autistic. It's time to just let her be. Maybe that's what she's needed all along.

First, Do No Harm

I have two children on the spectrum. Very different, yet much alike. They are who they are, and I love every piece of them. If I could literally carry them around with me in a kangaroo pouch, I would.

But, something has been drilled into me since receiving their diagnosis. That I have to help them. That I need to send them to this therapy or that. That society won't accept them how they are. That they need to change.

So I send them off to speech therapy, occupational therapy, social groups, counseling, ABA. In school, outside of school. Forget after school activities, we just have therapy. Even the fun stuff is not typical...it's fun stuff meant for those with autism.

I don't think twice about it. I'm their mother, and it's my job to do everything in my power to help them succeed in life. To be happy and independent. To find fulfilling jobs, and have fulfilling relationships. Because success is only measured one way. By what people consider normal. By the achievements of typical peers.

Lately, though, something has been bothering me. The fact that my kids, at every turn, are being told that they are wrong. That how they think is wrong. That how they behave is wrong. That being autistic is wrong, and they have to change who they are. They must fit into a specific mold, and if they don't...

Wrong, wrong, wrong, wrong, wrong. 

I can't fathom going through each day being forced to change who I am because I'm not "normal" enough. I can't imagine what it's like to set aside who I am as a person, so I can earn stickers and pick a prize. To memorize scripts of what it's like not being autistic so I don't get in trouble, or lose my favorite activity.  Allowed to be myself only when a cute picture can be taken to show "acceptance", or so my parents can claim they respect all that I am.

Even in small ways, we are telling people something is desperately amiss. It leads people to feel sympathy for parents when they kill their children, because those kids (and adults) were just wrong.

Worthless.

Empty. 

Incapable of thought. Feelings. Barely human. 

What am I putting out into the world about my kids? My kids who are my life, my loves. I claim to accept them, while spending every extra penny on things that scream, something is wrong here! 

We place the burden of acceptance on our kids. We don't teach their peers to accept them. We teach our kids how to be accepted. 

It's not OK.

I've seen what this year has done to my kids. My children who have been told in so many ways, by so many people, that they are not good enough. That they are bad. That they need to change.

And I wonder why they aren't happy. Why their self esteem is shot. Why they hate school.

The murder of Alex Spourdalakis not only devastated me, but awoke something inside me. The fact that because our kids are looked at as less, things like this continue to happen.

I am supposed to protect my children, but I now realized I've failed. I've inadvertently made my children feel as though they are not OK. I've allowed them to be around people who drill that into their brains. Not that anyone did anything malicious. We all thought what we were doing was right. It's what every doctor and teacher and professional told us to do.

But, we were wrong.

Wrong, wrong, wrong, wrong, wrong.

What we put out into the world about autism is why there is no help for our kids. Why people look at them like they aren't whole. Not worth time, money, care.

I really think it's time to take a good, hard, look at what we are doing, and why we're doing it. What we are conveying about our children. About autism. How truly accepting we are of our kids, and if we are doing more harm than good.

All I know is something has to change, because human beings are being murdered (abused, mistreated, silenced), and it needs to stop.

We need to start really presuming competence, and seeing a person, not a diagnosis. Teaching our most affected to communicate, making that a priority above all else. Giving them a voice, because they are people who deserve to be heard. 

We must look at our higher functioning kids, and realize how our words affect them. Even if they don't come out and say it, put yourself in their shoes. Say this, do that, act this way...all of it telling them they just aren't good enough. Even coddling them, lowering expectations and treating them with kid gloves, sends a message of inequality, not just to them, but to the world. 

I don't know all the answers, or how to be a perfect parent. Not by a long shot. I just want my children to know they are good enough. Worth as much as any one else. That I am here to support them, and keep them safe, but not change. Not fight. I am on their side. I will follow their lead. It's not about me, the parent, it's about my children. All of our children.

Your children.

And the people, children and adults alike (because autism doesn't go away at 18), who have suffered at the hands of their caregivers, who deserved so much better.