Saturday, November 26, 2016

Nothing is Happening Tomorrow

Have you ever had someone start to say something, in the sense of revealing information, and you would do anything to stop them? We have many times.

When our two children with autism lived with us, both had sleep issues but in different ways. Abby was just messed up when it came to sleep. It was not unusual for her to get up between 1 and 3 am.

Logan generally slept well, getting up around 7 am. Unless someone said something.

If in the evening, we or someone else, mentioned that something would happen the next day, there would be a problem.

"Logan, Grandma is coming for a visit tomorrow."

"Logan, tomorrow is a day off school."

"Logan, Abby's birthday is tomorrow."

If anything was going to happen the next day, Logan would get up extremely early. Sometimes midnight and sometimes he wouldn't sleep at all.

We came up with the policy that NOTHING was going to happen tomorrow, no matter what was really going to happen. It was easier to train ourselves than others. It is natural to share the excitement of what was coming. Sometimes the event was so minor, that it did not seem to be a big deal. But we had to cut off people and re-educate people about what was allowed to be said.

Anticipation was something too disruptive to Logan's sleep.

And that is a glimpse of autism.

Friday, November 11, 2016

A Theology of Autism

This is a lecture by theologian John Swinton that was given at the Summer Institute on Theology and Disability in 2011.


Wednesday, November 9, 2016

The Church and People With Mild Autism

I think that there has been some improvement in the church's willingness to embrace and minister to people with autism and their families. But often the people with autism that the church has in mind are those on the severe end of the spectrum.

What about those with mild autism?

These are the people who have what was once called Asperger's Syndrome but is now just mild autism. You may not even know that they have autism. These are people that have intense interests that they want to talk about all the time. These are the people who struggle to know what is socially appropriate. You likely think of them as quirky rather than autistic.

There is a certain amount of compassion for those who are on the severe end of the autism spectrum. But those who are more mild do not necessarily benefit from this compassion. They may be easily left out and isolated.

Remember that autism does not always look the same. Have the same love for that teenager who always talks about airplanes as you do for the child who is nonverbal.

Saturday, November 5, 2016

An Autistic Evening

One of the purposes of this blog is to increase awareness about autism. As much as I love to share the positive experiences, the reality is that there are some difficult times. I have no desire to use this as a platform for complaining, but I believe sharing the reality of autism will help people to understand what parents go through.

We just made a major change in how our visits with Logan and Abby go (they live in a group home 1.5 hours away). Previously, the group home brought them to our house Friday nights and I brought them back Saturday mornings.

Starting today, I went early in the morning to get them, with the plan that the group home would come and pick them up in the evening. That is two major changes for Logan and Abby. They are no longer staying overnight and I am now bringing them here instead of taking them back.

They actually did very well. Our visit was fine, with lots of laughter. Even when the van pulled up to get them, Logan and Abby got there stuff together and went out to the vehicle. Everything was going smoothly.

Then the van door got stuck.

Abby, a couple of minutes after a meltdown.
The worker tried to compensate by putting Logan in a different seat than normal. That was one too many changes for Abby (she was already stretched pretty bad). Abby got upset, which got Logan upset, which made Abby more upset and on it went. There was a lot of crying and shouting. They were both in meltdown mode and they were feeding off each other.

There was no getting them both in the van. The only thing we could do was for me to take Abby into the backyard and jump with her on the trampoline, while Amanda got Logan into the van. They then took off, while I got Abby into our car with the promise of a stop at Tim Horton's. Then off we went for my second round-trip today.

This is what autism is like. Changes in routine can easily lead to meltdowns. People with autism can feed off each other when upset.

Amanda and I were able to work as a team to deal with the situation. Not every parent is able to do this.

Again, none of this is meant as complaining. This is simply the life of autism parents. But of you want to support families such as ours, you need to know what life looks like.

How to Talk to a Person With Autism Who Seems to Ignore You

If you tried to talk to our son, you might find that he would avoid eye contact and probably would hum while you spoke. I suspect that our son is not unique in this. In fact, there is a young man in our church who is very similar. What should you do if you find yourself in such a situation? Here are some pointers.

  • Don't force them to give you eye contact. Parents might do this on occasion, but there usually is a reason why they are avoiding eye contact. You might find that if you don't push the issue that they might give you more eye contact as they get to know you more.
  • Don't raise your voice. Unless there are additional hearing deficits, yelling will make them less likely to listen to you.
  • Just because they seem to be ignoring you, don't assume that they are not listening.
  • Talk to the person with autism and not the person with them. Address them directly.
  • If they don't answer a question, don't keep repeating it.
  • Look at them directly and smile.
  • Don't speak to them like they are a little child (unless they are a little child). Many people with autism who are nonverbal have normal or above normal intelligence. Do not judge their intellect by their communication difficulties.
  • Don't give up, no matter how much they may seem to ignore you. Greet them with the same enthusiasm every time you see them. It really matters.

Wednesday, November 2, 2016

What is an Autism Service Dog?

Many people have heard of guide dogs for the blind, but what is an autism service dog? The principle is the same, in that the dog wears a jacket that allows the person to go into public places.

One of the main purposes of an autism service dog is safety. Many children with autism are runners and safety is a big issue. The child with autism is tethered to the dog and so can only go as far as the tether will let them.

Service Dog
Logan and Halo
We had a service dog for our son and it was incredible the freedom that he gave us. I could go for walks with Logan and go to the grocery store with him, and not fear that he was going to take off.

For many children with autism, the dog also provides a comfort factor. I used to take Logan and Halo (our dog) to a men's breakfast at our church, and even if they were not tethered, Logan would be much calmer if Halo was there.

How can a church help?

One way is to make sure that service dogs are welcome in your building. Public places are required to allow access but that doesn't stop some places from trying to stop it. We were once asked to leave a store even though we were well within our rights. It is a good idea to have this conversation with your leadership before a family with a service dog shows up.

Another way that churches can help is to find out if there is a local family seeking to get a dog. The dogs are expensive (at the time we got our dog over a decade ago, it was $12,000) and families need to raise their own funds. It would be amazing if churches helped do fund raising for these families.

The final thing is simply to be aware of their purpose and role.

There are many organizations that provide service dogs, but the organization we worked with was National Service Dogs. You can find out more about service dogs at their website.