Different – and normal – are in the eye of the beholder

What does it mean to be normal? What does it mean to be different? These are big questions in any discussion about autism or other disabilities. The term “disabilities” itself begs this question, since a disability is defined based on “normal”.

I like what Kristin has to say on the matter (the emphasis is hers):

“Normal” is such a complicated word.

We each grow up with our own entrenched ideas of what normal is, which means, of course, there is no such thing. Yet the world loves to pretend like there is—if normal doesn’t exist, exactly, then at least there’s a perceived ideal normalcy that we should all strive for, or even pretend to have grasped….

There is no “normal”—at least not in a societal sense—and we need to stop pretending there is. We need to stop talking about it, observing the world through it, and assuming it as we report on and read the news.

Most of all, we actively need to teach our kids to identify the falacies embedded in “normal,” and see through to the other side…. We need to embrace rather than hide what makes us different. We need to prove to the world that what they see as “messed up” can be a very beautiful thing.

What I like even more is that Kristin is not talking about autism here, or any other disability for that matter. These are not questions limited to autism and autism awareness, they are questions for us as a whole.

Different, as Kristin says, is the new normal. Time to get used to it.

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Take time to listen, and to learn their language

Open and clear communications is one of the most important things between parents and their kids, and a lot of parents spend a lot of time trying to figure out how to do this. Read just about any book on how to improve your communications skills and you will find that one of the most important aspects of interpersonal communications is the ability to listen. 

Unless, of course, you are reading a book about helping autistic people “learn to communicate”, in which case it is all about trying to get them to listen, and pay attention, to you; very rarely will those types of books try to help you, a non-autistic person, figure out how to listen to an autistic person.

In fact, the very definition of autism in the DSM-IV is based on, among other things, “qualitative impairments in communications.”  What the DSM is really saying is that autistics are autistic because they don’t communicate with non-autistic people in a way that non-autistic people can understand and they don’t understand the way non-autistics communicate.  Almost like they speak a different language.

As if communications is something that autistics can do on their own. 

Communication is a two way street for parents and their kids. This doesn’t change just because a kid is autistic. In fact, it is even more important then, because in many qualitative ways, the parent and the child are speaking different languages.

Unfortunately, there is no Rosetta Stone to help out. But there are plenty of other parents, and plenty of autistic adults, who are willing to help you out.

Autistic kids – and their parents – deserve to have fun, too

Many parents of children diagnosed as autistic spend a large majority – sometimes all – of their “free” time trying to make their child “more normal” or “less autistic”, and not enough time on letting their child just be a kid. This is also true – maybe more so – at school, where the focus is often a single-minded (dare I say, “autistic”) dedication to implementing an IEP.

Many IEPs are so focused on making kids normal that they deny kids the chance to be part of a normal environment. It is not uncommon, for example, for schools to take autistic students on “life skills” field trips to a grocery store or McDonald’s while their classmates take a trip to a museum or other entertaining – and educational – locale. Life is for living, and this is as true for our autistic children as it is for our non-autistic children.

In her book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities, autism parent and blogger Lisa Jo Rudy addresses these questions, that really fall into two distinct categories:

  1. Why should you “get out, explore, and have fun” with your autistic child?
  2. How do you do this?

The first two chapters of the book should be required reading for all parents of children who receive a diagnosis of autism, that’s how important her message is in answering the “why” question. If autistic kids are never given a chance to experience life, how will we – or they – ever know what they want from life?

Lisa spends the bulk of the book exploring the “how” of getting out. As the parent of an 18 year old autistic son who has gotten out there, explored, and had fun, I can say that she has done an excellent job compiling not only lists of possible activities, but the good and potential bad of each as well as tips on how to make sure the experiences are valuable ones.

What I most appreciated in the “how” section is that she doesn’t sugar coat anything. Far from being pessimistic about things, she is simply honest about what you are likely to experience. She also reminds us to be realistic in what we expect of our kids, and of those we interact with “out there”. Even though the “why” applies equally to all kids, the challenges of the “how” will vary. Autism is, after all, a spectrum, and the experiences parents will have when they “get out” will cover a wide spectrum as well.

Only parents can appreciate the challenges they will face with their own kids in trying to get out there. My only suggestion here is that you lean toward stretching your boundaries, and your kid’s, by trying something just a little bit harder than what you think you can do. You will find that this can be hard work, but you will also see that it is worth every ounce of sweat you put into it.

If you are the parent of a young – or not so young – autistic child, you should get and read this book. And give a copy to your child’s teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

Is there autism in heaven?

If there is indeed a heaven, and your autistic child goes there when he dies, will he still be autistic?

Over the years I’ve come to believe that asking someone this question about autism in heaven is one of the best ways to understand how they view autism. Even better than asking them whether they believe that autism needs to be cured, though of course there is probably some correlation between a person’s answers to these two questions.

I guess it really comes down to an even simpler question: Is there autism in heaven?

But it isn’t really that simple, is it? Because if you ask that, you also have to ask, “Is there deafness in heaven? How about blindness? Are schizophrenics still schizophrenic when they get to heaven? Are there wheelchairs in heaven?”

Obviously there are no “diseases” like diabetes, heart disease, cancer… in heaven, those are all physical things. So why would there be a need for wheelchairs. And blindness and deafness, those things are usually physical manifestation, so they shouldn’t be in heaven either, right?

But what would heaven be for someone who is blind here on earth? Or deaf? Or confined to a wheelchair. (Kind of gets you around to the question of what, exactly, is heaven, but I really don’t want to go there.)

Many years ago I heard a story on NPR‘s Morning Edition, Ben Mattlin’s commentary Valuing Life Whether Disabled or Not. It was, in fact, this story that first prompted my question about autism in heaven.

Commentator Ben Mattlin has been quadriplegic since birth. At the memorial service for a disabled friend who passed away, he came to realize the world needs to expand its definition of what it means to live a successful life, disability or not.

What caught my attention:

Are there no wheelchairs in heaven? I’m not buying it. For me, if there is a heaven, it’s not a place where I’ll be able to walk. It’s a place where it doesn’t matter if you can’t.

Is heaven a place where there is no autism? Or is it a place where it doesn’t matter if you are autistic?

Enjoying the scenery on your autism detour

If parenting is indeed a journey (as I wrote yesterday), parenting an autistic child is a detour from the path that a parent’s journey normally takes. Several years ago I heard the following (I wish I could remember the source):

A truly happy person enjoys the scenery on a detour.

Would I have chosen this detour at the beginning of the journey, if I’d been given the option? Probably not. The road has been rough at times and it has taken a little bit longer to get from way point to way point along the path.

But I’ve seen things, experienced things, that many parents will never even know are possible. I’ve learned things about myself, about others, and about my kids that I would never have otherwise learned.

I have to say that I’ve enjoyed the scenery on our detour. I encourage you to try to do the same.

Parenting is a journey, not a destination

Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

Consider this quote, from George Leonard’s The Way of Aikido:

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice. Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing to spend most of your time on the plateau. [T]o join the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Sounds a lot like parenting, doesn’t it?

Take the time to learn from your kids

I have had a lot of teachers throughout my life. Some taught me because they were paid to, some because they were supposed to, and some because they wanted to. Many of the best teachers in my life, though, had no idea that they were teaching me. (Or, perhaps more accurately, that I was learning from them.)

At the top of this list of unintentional teachers are kids, especially my own.

When the relationship between parents and their kids is discussed, “parent as teacher” is a common interpretation. There is no doubt that parents need to teach their children. But if we only see ouselves as teachers, whether it is because we are supposed to or because we really want to, we are missing out on some of the greatest learning opportunities we will ever be given the chance to experience.

This is especially true if your kids are different from you, or different from what you expected them to be. For example, if you are a “jock” and your kid a “geek” ( or vice versa). Or your kid is disabled and you’re not.

If you are a parent, take the time to learn from your kids. You’ll be amazed at what they can teach you.