Saturday, August 20, 2016

Autism Parent's Worst Nightmare

This is not the care for every autism parent, but I know that it is for many. In fact it has been for us. For a certain number of children with autism, there is a desire to run. Not to run laps for track but to just take off. Unfortunately, some of those children never make it back. There are too many stories of children with autism who have gone missing and then eventually are found dead.

While our daughter is not a runner, our son is. He has taken off many times from our home. Legally, parents are not allowed to lock their doors and so anything can happen during the night. We have tried a number of things to keep him in, once even piling boxes in front of our front door. The only thing that really worked was to get a lock that you had to enter a code to unlock the door. Even now, when Logan visits from his group home and stays overnight, I sleep on the couch so that I'm more aware of where he is during the night.

Once our son opened the door, took off all his clothes and then took off. It was winter and we lived on the water. It could have gone very bad. Thankfully he was found safe. There was another time when he went missing for a number of hours and we really thought we had lost him. I tell the story in this article with ChristianWeek.

I share all this, not to complain, but to let you know that many parents fear they are going to receive that bad news from the police that they found their child's body. It is really any parent's worst nightmare.

Sunday, August 14, 2016

Differences Within the Autism Community

What is the autism community? Obviously it includes all people with autism. But it also includes, at least in some definitions, the families of people with autism.

How does the autism community feel about autism?

It depends on who you ask. There would be plenty of parents that hate autism. They see it as a terrible disability that robs families of hopes and dreams. Autism sometimes destroys marriages and makes life miserable. Let me make it clear, that is not the experience of all families with autism. But I will say that in our experience, we have had many "I hate autism!" days. Even in our most recent visit with our children, there were things that happened that reminded us of how much we can dislike autism.

But if you ask people with autism, especially those on the milder end of the spectrum, you might get a different answer. They might find any negative connotation to autism or even its description as a disability as being highly offensive. Autism is as part of a person's identity as much as one's ethnicity or gender, and there can be nothing negative about it. Any attempt to see autism as bad is seen as "ableism."

What do I think? I have a foot in both worlds. I am on the autism spectrum and I have two children with severe autism. I see autism as one of my strengths (see my book The Autistic Pastor) and yet there has been much grief that has gone with the autism of my children. I wish they didn't live in a group home. I wish they were not nonverbal. I wish they could get jobs and start families. There is much that is lost because of autism, at least from my perspective.

Are there answers to these differences? The only answer is respect. We need to respect those who have autism and value that part of who they are. But we also need to respect the pain that parents of children with autism go through.

Thursday, August 11, 2016

Feeling Uncomfortable Around People With Disabilities

I have two children who are on the severe end of the autism spectrum. They are considered disabled. But I must confess there are times that I'm uncomfortable around other people with disabilities.

There I said it.

Judge me if you want.

I don't know why this is. It happens more often with physical disabilities. It has become less since my children were diagnosed, but it is still there. I don't think I'm alone.

Why do people feel uncomfortable with disabilities? I suspect part of it might be that physical disabilities remind us of how fragile and uncertain life can be. Perhaps disabilities in general make us question the goodness of God. Why does God allow any disabilities?

I think that it is important, if a church is going to become disability-friendly, to address this common reaction and not pretend that it doesn't exist.

How do we respond to these feelings? We shouldn't respond with self-condemnation. That doesn't do anyone any good. The most important thing to do is to get to know the person with the disability. As the relationship develops, the disability slips into the background. It doesn't disappear, but it is no longer the defining factor.

For a while, our daughter went through a lot of workers at her group home. People were afraid of her and there was a high turnover. This seemed strange to me because I knew Abby and didn't see anything to be afraid of. But this was because I saw Abby as my daughter and not as a person with autism. For those who first meet Abby, it will take some time. But it is worth the wait.

So my advice is to acknowledge the feelings but don't let them control you. Enter into relationships and love the people for who they are.

Tuesday, August 9, 2016

The Assumption of "Normal"

It is common that when you meet new people, that you ask each other about family. I tell people that I have five children and they respond by asking about ages. When they hear that I have two teenagers, they often respond with common understandings of what teenagers are like.

The truth is that my teenagers are not typical. They have autism, are nonverbal and live in a group home.

I have a moment in which I decide whether or not to explain our situation. I'm not embarrassed by my kid's autism. It is just sometimes a pain to go into the details and I hate the look of pity that I frequently get. Often I just nod my head and pretend that I know what teenagers are like.

People make the assumption that your children are "normal." By normal, I mean without disabilities. I'm using other people's definitions here, because I think my kids are pretty normal. There are times they seem more normal than our children without autism!

Why do I bring this up?

I'm not suggesting that people don't ask about families in case someone is offended. Nor am I suggesting that people shouldn't assume that children are typical. Most often they are going to be right.

I guess I'm just sharing this because it is something that I go through regularly. I never resent the person that asks. But there are days that it stirs up the feelings of missed opportunities. I'm telling you all this, not to change what you say, but to let you know that there are complex feelings that may go along with the answer.

Monday, August 8, 2016

Autism Lives Matter

autism lives matter
A fairly recent story included a therapist (who happened to be black) who was trying to bring a man with autism back his home being accidentally shot by police. With all of the racial tension in the United States, it was later revealed that the police officer was trying to shoot the autistic man and not the black man. I'm not sure how much that revelation helped things. You can read the details here.

This post is not meant to be anti-police. I am so thankful for our police officers. They put their lives on the line every day. I can't imagine what the officer who was involved in shooting must feel. He has to live with both the shooting of an innocent man and the attempt to shoot a man with autism. This officer, like all officers, is put in positions where he has to make serious decisions with very little information. In this case, the report was that there was a man with a gun. He had to take that report seriously.

So what am I trying to say?

People with autism offer a special challenge to police officers. Police have certain steps that they use to de-escalate a situation. If the suspect responds correctly, most of the time everything works out fine. But there are no guarantees that a person with autism will follow the commands given by the officer. What are the police to do?

I have no easy answers. I am thankful to hear that there is an increase in training about autism within many police departments. Education will be a big help. It is also crucial that officers be given the correct information, including the person's ability to communicate.

We need to pray for our police officers as they navigate a very confusing world and attempt to keep us all safe.

Sunday, August 7, 2016

How Veggie Tales Saved My Life

Veggie Tales
Well actually Veggie Tales didn't really save my life. But is sure helped make my life as an autism dad easier.

Our daughter, Abby, had some pretty bad sleep disruptions. For some reason, she just would wake up between 1 and 3 am. Every night. It was pretty rough.

I finally found a way for me to get her back to sleep. But I had to do the same thing every time. When she would wake up, I would bring her upstairs and I would give her a rice cake and a cup of milk. Then I would put on the Veggie Tales video, King George and the Ducky (because I knew it was only a half hour). The key was to tell Abby before the video started and about half way through that as soon as it was done, she would be going back to bed. I had to make this announcement before the video was finished. It didn't work every time, but it did probably 80% of the time. And when you are talking a nightly occurrence, that makes a big difference.

I share this just to give you a glimpse of what it is like to be an autism parent.