Wednesday, December 30, 2015

What Does an Autistic Christmas Look Like?

Family
Our two oldest children have autism and currently live together in a group home. For many years our life has been shaped by autism. But when first Abby and then later Logan went to live in a group home, our pace of life changed.

It is not that life is easier, it is just different. Our other three children have their own issues and there are times that Logan and Abby are easier. My point is that our family has adjusted to not having long periods of autistic energy.

With a recent move, we have transitioned from weekly short visits to biweekly overnight visits. For Christmas we decided to stretch things and have them over for two nights. This was a strong reminder of what life with autism looks like.

Our son is a runner. He has escaped our previous houses and so it was very much on our mind. So we locked some of the locks on the doors that we don't normally use. These wouldn't stop him but what at least would slow him down.

I also chose to sleep on the couch. This allowed me to be in a position where I would know immediately when Logan was up. It would also allow me to stop Abby from ripping apart (unwrapping) all the presents, which she really wanted to do.

The other thing we need to do was to watch for signs of possible meltdowns. People with autism don't have tantrums, they have meltdowns. If the child gets escalated enough, it could take hours to calm them down. We had to be watching and ready to intervene if we sensed a meltdown was coming.

Do we have it easy with our children in group homes? I'm not so sure. It takes a lot of work to get from our regular rhythm back to our autism readiness.

I need to say that none of this makes Christmas bad. It was actually one of the best Christmases we have had in a long time. Much of that was because Logan and Abby were with us.

Monday, December 21, 2015

Ron Sandison: I Am Able Because

Ron Sandison has a great story. Make sure to visit his website.

Saturday, December 12, 2015

Spectrum - Autism Resource

If you are interested in issues surrounding autism and the church, I recommend Ron Sandison's Spectrum website. Ron is a Christian speaker and author and has much to give to the church. Ron also has autism. Visit his site, read his story and discover his resources.

Friday, December 11, 2015

Thursday, November 19, 2015

10 Asperger's Symptoms

This is an interesting video but I need to say that these symptoms are not universal. This is what this young man experiences but another person may have different experiences.

Thursday, November 12, 2015

Autism and Emotion

Spock
I was once told by a well meaning lady that it must be tough to have children that I cannot connect with emotionally. I was really taken off guard as that is not my experience.

More conversation revealed that her only encounter with autism was a young neighbour who seemed completely unemotional and lost in his own world. This is another example of, "If you have met one person with autism, you have met one person with autism."

I am sure that there are people with autism who have difficulty expressing emotion. My children are not like that. My children love to hug and kiss. They show affection in other ways, such as sitting with us or putting an arm on our arms and so on. My son has even verbally (even though he is considered nonverbal) told me he loves me.

Our son has issues with running away. At one school, one of the kids in his class got hurt. Logan intended to use this as a distraction to escape the school (he was successful). However, before he took off, he went to his fellow student to make sure she was okay. He cared.

When people are upset, both of our children empathize with this by demonstrating their own sadness. Our daughter loves nothing more than hearing other people laugh with joy. She gets right in there and laughs with them.

Sure, some people with autism demonstrate emotion differently than some people who are neuro-typical. But please do not assume that all people with autism are unemotional.

Tuesday, November 10, 2015

Friday, November 6, 2015

What Nonverbal Does Not Mean

Nonverbal
Two of my children are considered nonverbal. I find that there is a lot of confusion as to what that means. Some think it means the same as being mute. In this post I hope to clarify what nonverbal means by looking at what it is not.


  • Nonverbal does not mean that the child is unintelligent. It is possible for a nonverbal child to have average or above average intelligence.
  • Nonverbal does not mean that the child is illiterate. Our son can read books and do searches on the computer.
  • Nonverbal does not mean the child is without words. Our children are nonverbal but can make basic requests with words.
  • Nonverbal does not mean a child cannot speak in sentences. Our son can speak in perfect sentences but chooses not to 99% of the time.


In the end, nonverbal simply means that the person does not use spoken, conversational language as their primary means of communication.

Saturday, October 31, 2015

What a Visit With Our Children With Autism Looks Like

We have two children with autism, both on the severe side, both considered nonverbal. They live in a group home together with two other children. We try to have them over for a visit every week.

This is what an average visit looks like.


  • I show up at the group home. Abby is usually watching out the window beside the door and so she sees me right away. She grins and does wild hand gestures. Logan hugs me and says, "Hi Dad."
  • We get into the car and Logan says to me, "Turn up music please." He doesn't seem to care what kind of music, but when I am driving it is classic rock.
  • We arrive home and Logan and Abby run into the house. I am working on getting them to close the car doors first. It is coming along.
  • They immediately head for the television. We have often watched DVDs but Abby has been frequently changing movies soon after they start and so we have switched to Netflix.
  • We then sit down to a Veggie Tales marathon. Our three younger children claim they hate Veggies Tales, as they are too old for that now, but they are glued to the screen while Logan and Abby are here.
  • There are frequent interceptions of mostly Abby (but sometimes Logan) as they try to find food in the kitchen. Neither of them ever feel full so we have to be careful and only do controlled snacks.
  • Logan grabs his superhero books and reads them while watching TV.
  • Abby starts grabbing toys, books, DVDs and anything else to create a display on top of Faith's bed.
  • There is a lot of hugging, laughing and smiling.
  • Both Logan and Abby tell me, "No thank you!" when I try to sing.
  • Then they get picked up to go back to their group home. But not before we get a hug and kiss from our children.


That is what a typical visit looks like and it always gives us great joy.

Family

Thursday, October 15, 2015

5 Reasons I am Glad I Have an Autism Diagnosis

I was diagnosed with autism at the age of 46. Why would I do such a thing at my advanced age? My doctor didn't suggest it. It was all my idea. In addition, it is not as if there are programs or treatments (not that I would want them).

Since I do get asked this question frequently, I thought I would share five reasons I'm glad I have an autism diagnosis.

1. My primary motivation was to be a better husband. My diagnosis gives some meaning to the differences between my wife and I. I hope to learn on how I can connect better with her.

2. The diagnosis also helps my wife. She can see that my lack of romance is not because I am uncaring but because I have trouble understanding it.

3. The diagnosis helps me to understand many things that were a part of my childhood. I used to think I was just weird. Now I understand it was that everyone else was weird.

4. I am more comfortable with silence. I used to try and fill silence with meaningless chit chat. It was very painful. Now I learn from my nonverbal children and am okay not saying anything.

5. I am now more confident and happy with myself. For many years I compared myself to others (mostly people without autism). I am fine with my brain wired a different way. My only goal is just to be the best possible me.

Each of these reasons make me thankful that I have my autism diagnosis.

Monday, October 5, 2015

Vilifying People With Autism

Fear
One of the most disturbing things that I have encountered recently has been the creation of a Facebook page, "Families Against Autistic Shooters." To find out background on this situation, read this article.

I really do not know why anyone would do such a thing. Were they really afraid of people with autism? Was it just a gimmick to get attention? I really do know.

What I do know is that there is no excuse for such behaviour. Are people with autism more likely to be involved in shootings? No, not at all. Those shooters who may have been somewhere on the spectrum, would not have been violent because of the makeup of their brain. Having something does not make it a cause.

I also know that there is fear of people with autism. Some may fear violence and it is a good idea to not be in the middle of an autistic meltdown. But I have seen neuro-typical people punch each other in the face for getting impatient and honking a horn. Autism does not make it more likely that someone will be violent.

The fear is usually more about the unknown. I have seen people afraid of my daughter. They don't know what she will do or how she will react and so they get scared. She senses that fear and gets stressed out. The truth is that no one has anything to fear from Abby. She is a sweet girl.

One of the main points of autism awareness is to help stop the fear. People with autism are simply people with different wiring in our brains. The autistic community does not need people like the creators of that Facebook page to increase the fear.

I am glad that so many people have been outraged by that page. I would ask that you take it to the next step and get to know people with autism and spread the word about no fear.

Tuesday, September 29, 2015

My Autism and My Faith

Bible
I have heard from some people with autism that faith can be difficult. I have also heard from parents concerned about how to explain Christian faith to their child with autism. I have blogged previously about autism and faith. What I would like to do now is just talk about my own experience.

How can I as a person with autism hold on to such an abstract thing as faith in an invisible God?

What I need to make clear is that I do not have a blind faith. Some people can be just told the Jesus story and feel such an emotional connection that they instantly believe. That is not be.

I believe because I see that there is evidence for Christianity. Between the historical evidence for Jesus and my experience of answered prayers, I am forced to go where the evidence leads. It is not the emotional faith that many of my friends have but it is just as real.

Even as a church-goer, I was always annoying to my friends. While they would automatically accept what was said from the pulpit (even if it contradicted the guest speaker from the previous week), I would notice the biblical and logical mistakes. To some it looked like I lacked faith, whereas I felt it was the faith God wanted me to have.

I continue to be a skeptic in many ways. While I am a Christian and a pastor, I do not automatically believe everything I hear. I want to see the evidence and I am okay with that.

My autism does not prevent me from having faith, rather it pushes me to have a more reliable faith.

If you are interested in my reflections on Christian evidence, you find my other blog here.

Monday, September 28, 2015

An Autistic Person or a Person With Autism?

Stephen and Amanda Bedard
As I became more involved in autism awareness, I quickly noticed that there was some sensitivity toward phrasing. While many will talk about autistic people, the preferred wording is a person with autism. It is more politically correct.

I am not super-worried about being politically correct. If you communicate in any way, you will offend someone. Still, I tried to keep to the preferred phrase out of respect for people with autism. But I'm sure if you dig deep into my blogs, you will find references to my 'autistic children' rather than my 'children with autism.' Sometimes it just gets wordy.

Then I was diagnosed with autism.

I would hate to be introduced by my wife as her 'autistic husband' or to be described as an 'autistic author.' I am not embarrassed to have autism, but autism does not define me. Autism is just one part of who I am.

Having the diagnosis, I must confess that I now see the importance of the the right phrase. It is not about being politically correct. It is about respect.

Inside Autism

Autism Studies (Distance Learning)

If you are looking for training in autism studies, there are a number of options. One is to study at the University of Kent in the UK. They have a few programs, that seem to include both distance and some attendance. If you are interested in what they offer (which includes an MA), you can find information here.

Saturday, September 12, 2015

Can I Be a Pastor and Autistic?

Church
One of the reasons that some people are surprised by my autism diagnosis is my history of Christian ministry. I have worked as a pastor, chaplain and Bible teacher. All of those roles require social interaction. Since autism affects social interaction, I shouldn't be able to do those things.

Except I did and continue to do so.

I suspect that the problem is that many people have a stereotypical view of autism. They assume that people with autism are completely anti-social and are not able to connect with people emotionally. My children with autism are both on the severe end of the spectrum and yet are very social. In fact, it is usually more of an issue to get them to act appropriately socially rather than seeking interaction. They feel and show emotions. They care when someone is hurt and when someone is happy.

And so do I.

What does this look like in a pastoral context for me? I will admit that writing sermons and preparing Bible studies come the easiest to me. I love to preach and I love to teach. My gifts allow me to do these without too much effort. Pastoral care does not come as natural to me but I can do it. When I visit a person in their home, hospital or nursing home, I genuinely care about what is happening in their life. Chit chat does not come easy, but I know how to talk to people about their challenges and struggles. I can listen and ask probing questions. I can pray. Basically I can do my job.

What I am saying is that pastoral ministry is no different for a person with autism than it is for people without autism. Each pastor has strengths where things come naturally and other areas where more effort is required.

I have high-functioning autism and I am a pastor/chaplain/teacher.

Friday, September 11, 2015

How Can I Have Autism When I am So Normal?

I have had a number of people find it hard to believe that I have been diagnosed with autism when I am so normal. There are two errors in this thinking. One is a misunderstanding of autism and the other is that I am normal. Close friends can see the latter more clearly.

Family
Three points on the autism spectrum
What people need to remember is that autism is a spectrum. Yes I am very different from my children in some obvious ways. But those who know my family well might see some of the similarities. For example, I made sure to arrange our family's five finger nail clippers in a row, smallest to largest. My daughter would be proud of me. I need to manipulate something in my hands, somewhat similar to my son.

The type of autism I have is what was once called Asperger's Syndrome. That diagnosis is now gone and all there is, is autism. I have high functioning autism. My autism does not limit me in my education or career. I would suggest that my autism has allowed me to accomplish much of what I have.

Why many do not see the autism in me is because I have learned how to act appropriately. For example, I have strong interests and would be happy to talk about them all the time but I know most people don't want to hear it. That is why I blog. I can explore my interests and if people want to read they can, if they don't, they can move on.

Autism is not just about lack of eye contact, flapping hands, trouble communicating or meltdowns. It is something deeper. Instead of focusing on those outward signs, they should be asking why people with autism are doing it. Some of it I understand, some I still am learning about.

So if you are having trouble believing I have autism, just take the time to get to know me.

Monday, September 7, 2015

Autism Behavioural Science Graduate Certificate

I am always on the watch for educational opportunities for people working with people with autism. Mohawk College offers an Autism Behavioural Science Graduate Certificate. This certificate is available online but you can also take it through full-time studies at the college.

Sunday, September 6, 2015

I'm Not Unfriendly, I Have Autism

I can only speak for myself, although I have heard of similar stories from other people with autism. I can sometimes come across as unfriendly. I seem eager to end the conversation and move on. Why don't I like people?

I like people just fine and I'm not unfriendly. What is difficult for me is chit chat. It is hard for me to understand the point of talking just for the sake of talking. I will respond but I can't keep up chit chat for too long.

But wasn't I a pastor?

Yes I was a pastor and I spent a lot of time talking to people. I hope I never made anyone feel uncomfortable. I am happy to talk to people within a pastoral context. There is a reason for such conversations and there is a topic to discuss. Even if the person just wants to get to know me, I am happy to talk about my family.

But when it comes to light conversation about nothing in particular, I am going to struggle. Please don't feel that I don't like you. It is just the way I am wired.

Sunday, August 30, 2015

5 Things You Need to Know About Faith and Autism

One of the most common questions I get is about how people with autism understand faith. At first I tried to guess from my children with autism, which is hard because they are both nonverbal. Now that I have been diagnosed with autism myself, I have a bit more insight.

Here are five things to take into account.

Stephen Bedard
1. Every person with autism is different. This will make every list about autism. I am sharing some generalizations but saying "all people with autism are..." is as difficult as saying "all people without autism are..." So take the rest of the list as only things that I have observed.

2. Try to be concrete in your explanations. Jesus in your heart really does not help people with autism very much. In fact, you might as well get rid of all Christianese. Be a follower of Jesus is an example of a concrete image. It makes sense.

3. Some doctrines are easier than others. For myself, Heaven is hard to get my head around. But the resurrection of the dead (which the Bible emphasizes much more anyway) makes sense.

4. People with autism are vulnerable to legalism. Many with autism think in terms of rules. If a church has a set of unhealthy and unbiblical rules, this can be damaging to the faith.

5. Apologetics may play a role. Why am I interested in apologetics? I was studying apologetics long before I ever considered autism. Apologetics makes sense to me. It helps to see the faith in a reasonable and rational way. Don't dismiss apologetics because you don't find it helpful.


Thursday, August 27, 2015

Autism Support Training Certificate Program

Do you work with people with autism, either children or adult? You may be interested in this certificate program from the University of New Brunswick. It can be completed in six months on a part-time basis. Make sure to visit the site if such training would be helpful for you.

Autism and Learning Infographic

Autism-and-Learning-Infographic
Find more education infographics on e-Learning Infographics

Friday, August 14, 2015

A New Perspective

I have been interested in and active in speaking about autism for some time. Two of our children (ages 14 & 12) have autism. It just makes sense that I would want to promote awareness about autism and provide resources on how to minister to families with autism.

I now have a new perspective.

Yesterday, I was diagnosed with autism. You can read my blog post on it here. Some people may doubt that I have autism. If you see me with my children with autism in a room, you would immediately see differences. I can communicate clearly (I'm a preacher, teacher and writer), while they are nonverbal. My children have "stimms," which for Logan is manipulating a block-shaped toy within a sock within some plastic and for Abby is pushing on the corners of her eyes or flapping her hands. I don't have anything obvious like that.

The most important thing about autism that you can know is this:

"If you have met one person with autism, you have met one person with autism."

Even my two children, both severe and nonverbal, are very different from me. I have high functioning autism (once called Asperger's) and I have had 46 years to build skills to cope. I can look at people in the eyes even if I don't want to. I can choose to stop talking about my favourite subjects, even if I don't want to.

How will this affect me? It certainly gives me a new perspective on autism and how ministry to families with autism looks like. But in the end, I am me, with or without autism.

Saturday, August 8, 2015

Tyndale Research in Autism and Community Education

Tyndale University College (where I am a sessional lecturer) offers a special autism program called Tyndale Research in Autism and Community Education or TRACE. They do research into autism intervention and also offer an autism summer camp. I took my son twice to the camp and it was a great time. If you want to learn more about TRACE, go here.


Thursday, August 6, 2015

What Happened to Asperger's Syndrome?

You will still often hear people being described as having Asperger's Syndrome, which was considered a form of autism but without the communication difficulties. There are plenty of characters in popular entertainment portrayed as having Asperger's.

However, Asperger's technically no longer exists as a diagnosis. Now there is only Autism Spectrum Disorder. This means people previously diagnosed with Asperger's now either are diagnosed with autism or have no diagnosis. You can find out more information here. You can find the new diagnostic criteria here.

Wednesday, August 5, 2015

Humanizing Autism

This is a great video that reminds that autism is really about people.

Sunday, August 2, 2015

First Disability Pride Parade

I think this is an awesome idea. It is about time and I hope it continues.

Monday, July 27, 2015

The Buddy Ministry

I love how this church has developed a ministry to bless special needs kids and their families.

Saturday, July 25, 2015

Online Autism Courses

Are you a teacher? Perhaps you have another role and want to go deeper in your autism training. The Geneva Centre for Autism offers some online courses that you might find interesting. Take a look at their course offerings here.

Friday, July 24, 2015

I Had That Dream Again...

Autism
I have a recurring dream. Perhaps other parents of children with autism have this same dream. In my dream, I am interacting with one of our two children with autism. Both children are considered nonverbal. In my dream, our child starts speaking in full sentences. I always have the same reaction. I try not to look surprised as if I might jinx the moment.

Most of the time, my dream features our son. This is hard because he has the potential to do something like this. He has the ability to speak and we have heard him on the odd occasion speak a full sentence when he is motivated. But most of the time he just hums or recites lines from movies.

Last night, it was our daughter. I had never had this type of dream with her. She too is considered nonverbal but she is more severe than our son. She can give a handful of one word requests but has never spoken much more than that. That is why in my dream I was particularly filled with joy.

But then I woke up.

It was only a dream. My children are still nonverbal.

I say this not to complain but to say that some days are harder than others. Those of you with children who can communicate, with autism or without, be thankful for what you have.

Sunday, July 19, 2015

Autism is Not Always Cute

I have posted many pictures of our children and people comment on how cute they are. But autism is not always cute. In this video, a mother allows people to glimpse what autism can really be like. I can tell you that our two children have had many episodes similar to what you will see in this video.

Tuesday, July 14, 2015

5 Characteristics of a Welcoming Church

A Conversation With Jean Vanier

Jean Vanier
Jean Vanier has been an advocate and friend of those with intellectual disabilities for many decades. He is the founder of L'Arche, a community that values respect for all apart for any disabilities. You can find out more about Jean Vanier at the L'Arche site.

Recently there was a roundtable discussion with Jean Vanier and a number of theology and philosophy students. It was recorded and presented by the Unbelievable podcast (normally focused on apologetics), with Justin Brierly as the moderator.

It was a good discussion that is worth listening to. You can find it here.

Saturday, July 11, 2015

Autism Kindle Deals

Reaching out to families dealing with autism requires, among other things, knowledge. One of the easy and affordable ways to learn are through Kindle books.

Here are some Kindle deals that deal with autism. Warning: I have not read these books and so I cannot guarantee their quality. But at these prices, it is worth taking a chance.

Autism: 44 Ways by Margaret LaRue
Autism: Ultimate Parenting Handbook by Suzanne Jensen
Autism: 20 Things You Must Know by Lauren Charleston
I Think I May be Autistic by Louise R. Allen
Asperger's by Hannah Warner

If you don't own a Kindle, download this free Kindle app.




Wednesday, July 8, 2015

Autism and Church

I love this little video about a family with a child with autism and their adventure of going to church. People without autism in their life have no idea how easy they have it.

Friday, July 3, 2015

Church Toolkit

One of the great Christian organizations working with people with special needs is Christian Horizons. They are involved in many things but are often thought of as primarily an operator of group homes.

One of the areas that people do not know about when it comes to Christian Horizons is their dedication for supporting churches and leaders. They have put together this Church Toolkit to help churches to minister to those with special needs. It really is worth checking out.


Thursday, July 2, 2015

Certificate in Special Education

Biola University is often associated with apologetics. I am actually enrolled in their Certificate in Apologetics program.

But Biola does much more than apologetics. Biola offers an online Certificate in Special Education, which includes training in autism. If I was a teacher, I would strongly be considering this. You can find out more about their program here. It is worth checking out.

Wednesday, July 1, 2015

Carly's Cafe

This video gives you a sense of the experience of a nonverbal teenager with autism.

Monday, June 22, 2015

Come Visit on Facebook!

How to Make Your Church Autism-Friendly is also on Facebook. Come and like the page and you will find very helpful passages dealing with autism and other disabilities. Hope to connect with you soon!

Saturday, June 13, 2015

What is a Meltdown?

A meltdown for a person with autism is not the same thing as a temper tantrum. This video will give you a good idea of what a meltdown is.

Thursday, June 11, 2015

Going Deeper into Autism

In April (Autism Awareness Month), I had the privilege of being interviewed by Nick Peters on his Deeper Waters podcast. Nick is a great guy and we have a few things in common. One is a mutual interest in apologetics. Make sure to check out his website for plenty of good apologetics resources.

We also have a mutual interest in autism, although not in the same way. My interest is as a father of two children with autism and his is as an individual with Asperger's Syndrome, which is a form of autism.

Nick and I had a great conversation about autism and you can listen to it here. It is just over an hour but I think you will find it helpful.

Wednesday, June 10, 2015

The R Word

How often do you refer to something as "retarded"? It seems be a regular part of our communication. But is it right? In this video I share my thoughts on it.

Sunday, May 31, 2015

Ministry and Disabilities Online Training

While much of what I do is encouraging churches to have the right attitude, there is an important need for training.

As a result, I was very happy to see that Biblical Training is offering some courses on Ministry and Disabilities. This is being done in cooperation with Joni & Friends. Go and check it out here.

Saturday, May 30, 2015

Ban This Word from Your Church

Do you want to make your church both disability and autism friendly? Here is a simple but difficult step to take.

STOP USING THE WORD RETARDED.

Yes, I realize that 'retard' has entered the English language as a common way to describe something that you think is unwise. Even pastors will make statements about something that looks foolish by saying, "that is so retarded." I am sure that each Sunday, such phrases are used very often in churches by all sorts of people.

I also understand that most people do not mean it as a slur against people with disabilities.

But let me share my perspective as a father of two children who have been diagnosed with a global developmental delay (the current term for mental retardation). When I hear someone being described as a retard or as being retarded, what I hear is that this person is so stupid, they are as bad as Logan and Abby (yes, they do have names).

I do not say anything when I hear it, as people are free to say what they want. But if you want your church to be sensitive to disabilities, it may be time to do some teaching.

When I have talked about this before, I have been accused of promoting political correctness. I am far from being politically correct. The only agenda I have is basic respect for people who often do not have the opportunities to speak up for themselves.

If you want to call people retards, go ahead. But don't pretend that you care about people with developmental disabilities.


Saturday, May 16, 2015

What is Stimming?

If you spend any time with families with autism, you will either hear about or see stimming. What is stimming? You have to watch the video for the full answer.

My children with autism stim. My son likes to have a block like toy in a plastic bag that he constantly manipulates. He started with the toy in a sock, and he sometimes still includes socks, but it is the bag that is most important. We have to hide the sandwich bags when he visits or he will use them all. Our daughter has her own form of sign language. This is no official sign language but through it we can tell when she is really happy or really upset.

This video by a person with autism does a great job of explaining stimming.


Monday, May 11, 2015

Does God Create People With Disabilities?

"The question arises, however, whether God creates people with disabilities. On the one hand—yes—insofar as people with impairments of one kind or another are persons created in the image of God. But on the other hand, as something tragic—no. There is nothing inherently wrong with disability or with the people who have disabilities. Disability is a factor of being finite and contingent in an open universe subject to elements of unpredictability, instability and conflict."

- Thomas E. Reynolds, Vulnerable Communion.
Purchase in: USA Canada

Saturday, May 9, 2015

Parents, Children and Group Homes

For some parents with children with autism, it is feasible to keep their children in their home well into adulthood. It is fantastic when that happens but it is not the story for all families.

It is not the story for our family.

In some cases, the situation calls for the child to go into a group home. It is not an easy decision, but it is sometimes needed. How do parents who have children in group homes feel about this?

I have not done research into the experiences of other parents, I can only speak of what we went through. Here are five things that we felt during and after the process of having two of our children move into group homes:

1. Desperation. This decision does not come up without a lot of pain beforehand. This does not emerge out of hope of becoming early empty nesters. The situation has to get very bad before parents send their children to a group home.

2. Guilt. Even though logically it seems clear that the child can be better cared for in a group home, the heart does not embrace the decision so easily. Parents can feel like they have betrayed their child. Dropping the child off at the group home for the first time is a heart wrenching experience.

3. Relief. After months or years of dealing with crisis after crisis, there is a sense of relief. Things are not getting broken. Children are not running away or getting physical with other siblings. For the first time in a long time there is a sense of peace.

4. Guilt Again. At first that relief is very nice. But then parents can feel guilty that they are appreciating the relief. Are the parents just being selfish by having the child outside the home? It takes awhile to overcome these feelings.

5. Healing. It is a terrible situation to have to send a (or more than one) child into group home. But over time something good emerges. It is possible to just enjoy your child. There is no resentment about the damage being done to the home or the family. The visits become a wonderful time of enjoying each other. Even if there are some difficult behaviours, they can be endured because they will go back to the group home. Our experience is that we get the best behaviour from our children during their visits.

Saturday, May 2, 2015

2 Big Autism Myths

There are plenty of myths about autism out there but here are the two I most often encounter:

1) People with autism can't be touched. There are plenty of people with autism who do not like to be touched. But this turns into the problem of imposing an experience with one person with autism on another. We have two children with autism. They are extremely affectionate and huggy. They thrive on the pressure of a really deep hug. They both like their backs rubbed. If anything, they are not discriminate enough in physical touch. Basically, people with autism are like everyone else, some like and some don't.

2) People with autism have special gifts. There are people with autism who are savants but most are not. I often get asked what our children's "special power" is. Sorry to disappoint you but they don't memorize the phonebook and they don't count cards. They are not musical prodigies either. It is really neat to see savants but do not assume that all people with autism of these gifts.

Tuesday, April 28, 2015

What is Sensory Processing Disorder?

Many people with autism have difficulty processing what is happening around them. It is easy to become overloaded. This video is an explanation of this phenomenon by someone with autism.

 

Thursday, April 16, 2015

Nonverbal Does Not Mean Unintelligent

People say that you shouldn't judge a book by its cover. But we do it all the time. This includes how we look at people with autism.

Two of our children with autism are considered nonverbal. If you met our son, you would probably consider him low functioning. He doesn't talk (much). He hums and moans and makes weird sounds. We have heard a number of times of people who should know better who think that he is unintelligent.

It just isn't true.

Our son is very intelligent. He taught himself a song on the piano without a lesson or even the encouragement to play. He can read, in fact when we play a CD, he pulls out the lyrics to read along. Put him in front of a computer and he can navigate the internet no problem.

There has been some research done in this area. You can find the article here. The main point is that we should not be making assumptions about people with autism or anyone else.

Image by pixaby

Sunday, April 12, 2015

Autism and Eye Contact

It has been long known that children with autism have issues with eye contact. This was the case with Logan and Abby. People at our church used to try so hard to get them to look in their eyes. When my dad was dying in the hospital, a nurse tried to get them to look and Abby kicked her hard. They are much better now, at least with us.

Here is an article that includes some of the updated research on this topic.

Eye
Image from pixaby

Saturday, April 11, 2015

Autism and Wandering

Wandering is a very serious problem for families dealing with autism. Our son wanders and he has gone missing many times. The most recent time we almost lost him for good. Thankfully, we have had strangers step in and help.

I encourage you to watch this video and learn what you can do,


Autism & Wandering: 60 second PSA from NCMEC on Vimeo.

Wednesday, April 8, 2015

Silver Linings Have Clouds

As a parent of special needs children, I try to stay positive. I look at the bright side. I rejoice in the little victories. I celebrate those moments when everything works.

All of that is true but special needs parenting is still very difficult.

Our two children with autism live in group homes. While that takes off a lot of pressure, there are still plenty of challenges. There are still committees and government agencies and boards and financial concerns to navigate.

I just came across this post called "The Dark Side to Special Needs Parenting." I don't know the person who wrote it, but I will tell you that this post rings true to our experience.

We don't like to talk about this stuff much, but if you want to understand special needs parents, you are going to have to know it.

Image by pixaby

Tuesday, April 7, 2015

Becoming Pre-Autism Friendly

What if you want your church to be autism-friendly but you don't have any families with autism in your church?

Image by pixaby
I'm glad you asked! 

This is exactly the time to be thinking of these things. It is so much harder to start the process after you have had people with autism for years. The best thing is that these steps will make your church healthier even if no one with autism ever attends.

So here are some things for you to consider before the families with autism show up.


  • Make sure have you have some Plan to Protect safety plan. You should have this anyway.
  • Have a strong theological foundation of the image of God in all people.
  • Learn to deal with loud and unexpected sounds in the worship services. Babies should help.
  • Do a study of the role of the marginalized in the Bible.
  • Find families in your community that are dealing with disabilities and bless them with no expectation of them attending your church.
  • Educate yourself on autism and other disabilities. This is one of the major roles of this blog.


This should get you started.


Sunday, April 5, 2015

Jesus' Resurrection and Disabilities

Easter Sunday is the most important day for Christians. It is the day that we celebrate the resurrection of Jesus.

Does this have anything to say about disabilities?

When we think of the afterlife, we think about becoming perfect according to popular understandings of normal. All the things that we think make us stand out will be removed and we will have the bodies we always wanted.

What will the afterlife really be like? The only hint that we have is Jesus. The resurrection body of Jesus is the type of body we will have at our resurrection. Yes, it will be a better body. It will be a body that will be built for eternity. Jesus was also able to do things that his other body could not do. He walked through walls and even seemed to travel differently.

But there was something else interesting about his body. He still had his scars. The holes in his hands, feet and side would not seem to be ideal by normal standards. None of us would choose them. And yet there they are in his resurrection body. While a resurrection body is, what I tell my Bible college students, "an upgraded body," for Jesus it was a body that was in continuity with his "weak" body.

What does this means for those who have disabilities?

It is possible that some aspect of what we consider disabilities may be represented in our resurrection bodies. The difference is that it would no longer be a disability any more than Jesus was still being bound to the cross.

I am not necessarily saying that those in wheelchairs will be unable to walk in the resurrection or the blind be unable to see. But it is very possible that those parts of their life will be represented in some way in the resurrection.

Easter Sunday is a day of hope for all Christians. The possibilities that it opens up are limitless.

Image by pixaby

How to Talk to a Nonverbal Child

Some people who have autism are able to communicate clearly, even if they had early delays in speaking. Other people are what is called nonverbal. Our two children with autism are nonverbal.

What Does Nonverbal Mean?

It would be easy to assume that nonverbal means that a person is unable to speak. That is not exactly correct.

Our daughter has pretty severe language limitations. Even so, when she is hungry she can say, "Toast please," or request, "Juice." She is able to say a few other things that she has learned by rote.

Our son is different. If you met him, you would understand why he is considered nonverbal. What you would not realize is that he is actually able to speak clearly if he chooses to. This most often happens when he is angry or sad. However, he generally does not communicate with verbal language.

How to Connect With Nonverbal Children

So how can you communicate with a child who is either unable or unwilling to speak. Although we have discovered ways to connect with our children, I think it is better to share from someone else's experience. Here is an article by Lois Prislovsky on how to connect. There are some very useful suggestions.

What I really want you to get is, it is possible.

Image by pixaby

Thursday, April 2, 2015

What Does Autism Awareness Mean?

Today is Autism Awareness Day. Individuals and organizations have been working hard to build awareness about autism. I am thankful that awareness is growing.

But what does autism awareness even mean?

The first step is knowing what autism is. Autism is not a disease. Autism not a bad parenting choice. Autism is a disorder. Autism is also a spectrum. The symptoms range form relatively mild to quite severe. Knowing one person with autism does not tell you much about autism in general. Autism affects learning, communication and social interactions. If you know this much, you have made a good start.

The other step is to know people with autism. You cannot be truly autism aware until you are aware of the people who have autism. Autism is not just theoretical, it is about people. When people talk about 1 in 68, I don't think of statistics, I think of Logan and Abby. People with autism have likes and dislikes, personalities, fears, relationships and everything else that all people have. To be autism aware means that we need to see beyond the label and to see the person.

Happy Autism Awareness Day and I hope that you have become a little more aware today.

This is what autism looks like

Wednesday, April 1, 2015

Autism Infographic

They say a picture is worth a thousand words. We can type and type about what autism is but an infographic often gets the information across much more clearly. I hope this infographic helps you.

Autism - Spectrum Disorder
Explore more visuals like this one on the web's largest information design community - Visually.



Autism Awareness Month

Today is the beginning of autism awareness month. It is an opportunity for all of us to both grow in and to spread awareness about autism.

I will be sharing a number of resources throughout the month. But I want to focus on what churches can do for autism awareness month. Here is my advice.

DO SOMETHING!

Seriously, just do something. It does not have to be big. It can be including an insert in your bulletin (which I happen to provide here). It can be a link on the church webpage. It can be doing something special for a family with autism in your church. It can be reaching out to a family in the community. It can be as simple as including autism in one of your prayers.

My point is that anything is better than nothing. Autism awareness is growing but unfortunately churches have not caught up with the rest of society.

So if you are in the position to do something in your church, do it.

Autism Awareness Month

Sunday, March 29, 2015

What It's Like to Have a Brother With Autism

I absolutely love this video by a young man who explains his relationship with his older brother with autism.

Thursday, March 26, 2015

Autism Awareness Resource for Churches

April is Autism Awareness Month and April 2 is Autism Awareness Day. What will your church do to acknowledge this?

There has been much work done for autism awareness but there is a lot of work yet to be done. I regularly get asked by people who have no idea about what autism is.

As a result, I have put together this bulletin insert that explains what autism is and how the church can respond. You may not have anyone in your church with autism but you likely have people with family that have autism. Imagine how they would feel if they saw this insert.

If you are a parent with a child with autism, send this link to your pastor or leadership team. Use this as an opportunity to educate your congregation.

There are all sorts of possibilities for this. So please download this autism awareness bulletin insert and show your congregation and community that you care about autism.

Wednesday, March 25, 2015

Brian Doerksen and Special Needs Parenting

This is a powerful video by Brian and Joyce Doerksen on their experience as parents of special needs children.


Brian Doerksen from Christian Horizons on Vimeo.

Monday, March 23, 2015

Churches, Parents and the Vaccine Controversy

It is good for people who care about autism families to know about the autism-vaccine controversy. For those who do not know, some people believe that certain vaccines either cause autism or have some other strong connection.

Image by pixaby
This is what you need to know. Parents who believe in the autism-vaccine connection are very passionate about it. There is anger toward those who they see as allowing something dangerous to continue. Parents who believe that there is no autism-vaccine often have much more than just a lack of belief. They may feel hostility toward those who refuse to vaccinate because of the possibility of outbreaks of other diseases. There is a tremendous amout of emotion on both sides.

What is the truth? I have strong beliefs but I will not share them here.

For a church who wants to support autism families, what is important is that you do not judge. Even if you have a strongly-held belief, in the context of ministry that should be kept to yourself. Church is not the place to debate emotional controversies such as this.

It is good to be aware of what parents are feeling but you should not use the church's authority to take a stand.

Saturday, March 21, 2015

What We Can Learn from Odin's Birthday

It was so fun last night to watch the response to a mother's plea for her son's birthday. If you have not heard about Odin, you can get the basics here. Odin has Asperger's and a local community and far beyond reached out to him with love on his birthday. It was extremely moving.



As wonderful as this was, there is a danger that this can be just one moment of good feelings which will soon drop off our radar. There are two things that we can learn from Odin's birthday that applies to all those with autism.

1. Having autism can be lonely. The story began with Odin having trouble making friends. This is all too common for people of all forms of autism. It is easier to exclude people with autism than to include them. This is particularly an issue with high functioning people with autism. They are aware that they are different. They are often the victims of bullying. If you know a person with autism, be watching for how people are treating them and reach out to them in love.

2. People can make a difference. There was not a whole lot of notice or planning for Odin's birthday. A number for text messaging was put out. A hash tag of #OdinBirthday was created. The location for the bowling was announced. People caught the vision and did something. This does not have to be one time thing. It may not include thousands of people or greetings from politicians and sports figures. It may be just a few people who decide to make a difference. Odin's birthday shows us that it is possible.

What have you learned from Odin's birthday? 

Friday, March 20, 2015

Let Church Go to the Dogs

What if you are a church that is aware of the needs in the autism community but do not have anyone with autism in your church? What if you want to make a difference but do not have the resources to start a disability ministry?

I say, let church go to the dogs.

I mean it. One of the best things that happened to our family was getting a service dog for our son. A service dog is a specially trained dog that can go anywhere our son goes. The child is tethered to the dog and so can only go where the dog is. Not only does the dog provide safety, it also provides emotional stability. I noticed a huge difference in our son when the dog (in jacket) was in the same room as our son but not physically connected. On the safety side, our dog saved our son's life a number of times.

Here is the catch. The dogs are very expensive (well over $10,000) and it is up to the parents to raise the money. Parents are desperate to find people and organizations that will support them during the fundraising stage.

What if your church contacted an autism service dog organization and asked to be connected with a family. What if your church came along side them and help raise money? What if you just wrote them a cheque? What if you did anything?

I am saying that your church can make a difference in the autism community without starting a disability ministry. There are many service/assistance dog organizations out there. We used National Service Dogs but there are many other good organizations as well. Consider what you could do as a church.

Oh and dog spelled backwards is God. Just sayin'.



Thursday, March 19, 2015

Temple Grandin on Autism

It is always good to hear Temple Grandin's thoughts on autism. In many ways she is a window into autism that many cannot express.

Wednesday, March 18, 2015

Helping Children to Understand

There has been a lot of work done to promote awareness, understanding and acceptance for those with special needs. That is wonderful, but most of that is aimed at helping adults.

What about the children?

How do we help children to understand those who are different? It is not an easy task. Thankfully, Tim Huff has provided a resource that can make a difference. Huff has written a book called It's Hard Not to Stare: Helping Children Understand Disabilities that might be just what we need.

Here is the description from Amazon:

disabilities
It's Hard Not to Stare is the second book unpacking StreetLevel's children's Compassion Series. Tim Huff addresses issues related to disabilities in this book, as he did homelessness in the first of the series, applying the same tender and truthful prose, along with bright and courageous child-friendly illustrations, which have been heightened by the insights and wisdom of his professional peers, educators, moms and dads. The material encourages children to look at their world through the lens of compassion and understanding, rather than assumption, judgment or fear. Tim believes this approach will impact the way we care for, and befriend, people in our communities and beyond, and that when we nurture compassion in a child in one area of life, the potential is greater that this goodness will spill over into all other areas.

5 Things Autism Parents Fear About Church

It is not easy for parents of children with autism to start attending church. It is not as simple as just packing the kids in the car and heading out. There is a huge psychological barrier before they even leave their house. Churches should be aware of the fear that parents experience. Here are five things that parents may be afraid of if they do bring their child to church.

Image by pixaby
1. Will their child make noise? It is common for children to make noise at what others may consider inappropriate times. That noise may be questions, scripting from movies, moaning, humming or yelping. How will the church respond? Will there be dirty looks? Will they be asked to leave?

2. Will their child be bullied? Just because it is Sunday school does not mean that other children are going to be any more understanding. Children with autism look "normal" and they are easily the targets of teasing.

3. Will their child have a meltdown? An autistic meltdown is much more than a temper tantrum. Sometimes they can be predicted, sometimes they can't. They often happen when expectations are disappointed. There are few things as humiliating as having your child having a public meltdown. We have experienced it many times.

4. Will their child be safe? Some children with autism are flight risks. Stress makes them want to run and to run fast. They are smart and so as soon as an adult turns their head, they are gone. Is bringing the child to church going to put their life in danger?

5. Will their child be treated with respect? Some children with autism who are nonverbal may seem low functioning. Adults do and say things around them assuming the child can't understand. However, these children are often very intelligent and understand everything that is said. All children should be treated with respect, no matter what level of disability they may have.

Tuesday, March 17, 2015

A Biblical Perspective to the Increase of Autism

A guest post by Ron Sandison.

A Biblical Perspective to the Increase of Autism David, a young adult with autism and mute from birth, was admitted to the hospital for medication adjustment (Names and details have been changed). Two weeks earlier David’s parents had reluctantly placed him in a group home. They were unable, in their seventies, to control his frequent, violent outbursts and provide for his total care needs. David punched and scratched the staff at the group home and was placed as in-patient with one-to-one staff supervision. He required constant redirection and care for his activities of daily living (ADL’s) showering, dressing, feeding, and toileting.

David would jump side-to-side, two feet high, humming in a loud monotone the phonetic sounds he-ma. As David followed me into the day-lounge, he began to jump side-to-side, humming loudly. Patient Jim, an agnostic, asked me, “Why would God ever create a young man like David who is unable to do anything?” (Names and details altered) I looked at Jim and said, “Do you like TV, computers, electricity and cell phones?” “Of course I do!” Jim replied. I said, “You cannot have the high end of the spectrum of autism traits that can create geniuses and inventors, like Isaac Newton, Albert Einstein, and Thomas Edison, without the other end of the spectrum. Psalms 115:13 declares, “The Lord will bless his followers, great and small.” (Easy-to-Read Version)  Not everyone will be great in the eyes of the world; God loves and cares for David, a man created in His own image, as He does for you and me.”’

For those on the low-functioning end of the spectrum, daily activities such as, brushing their teeth, tying shoelaces, or putting on clothes can be mountainous challenges. We tend to take these for granted. Alberto, a young adult with autism, refers to these mundane tasks as his mountains of practical moments. When Alberto feels frustrated, unable to accomplish these normative tasks, he lapses into stereotyped actions—flapping his hands or flickering his fingers in front of his eyes. (Douglas Biklen, Autism and the Myth of the Person Alone (New York, NY: New York University Press, 2005), p. 266.)  As believers, we should feel compassion and love for these individuals and realize we also could have been born with these same disabilities. This understanding should prompt us to search our own hearts and provide help to individuals with ASD and their families. The apostle Paul wrote, “Carry each other’s burdens, and in this way you will fulfill the law of Christ” (Gal. 6:2).

We bear burdens by seeing the image of God and face of Christ on those with disabilities. We demonstrate Jesus’ love by our caring deeds. As Mother Theresa wrote:
The more repugnant the work, or the more disfigured or deformed the image of God in the person, the greater will be our faith and loving devotion in seeking the face of Jesus, and lovingly ministering to Him in His distressing disguise. We need to realize that we have the privilege of touching Jesus twenty-four hours a day. When I’m feeding that child, I’m feeding Jesus. These poor people are Jesus suffering today. (Angelo Devananda, Total Surrender: Mother Teresa (Ann Arbor: Servant Publications, 1985), pp. 116, 117, 130, 139, 150.)
Psychologist Wayne E. Oates says, “Our personal devotions, as we contemplate the image of God in those to whom we minister, become ethical enquiry rooms of our own hearts.” (Wayne E. Oates, The Presence of God in Pastoral Counseling (Waco: Word Books, 1986), p. 40.)

The Apostle Paul wrote:
But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things- and the things that are not- to nullify the things that are, so that no one may boast before him (1 Cor. 1:27-30). 
Dr. Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge, notes in his lectures that engineers are twice as likely to have children with ASD as the general population. Generally, the relatives of people with autism tend to score higher on tests of systemizing. Individuals with the gift of systemizing are particularly skilled for developing new technology and tend to belong to one of these professions: engineers, computer software designers, mathematicians, or architects. Temple Grandin said, “Without the genes that give rise to autism, the world would be full of charming people who sit around the campfire, chatting gaily and empathizing mightily but inventing nothing.”

Hans Asperger wrote in his 1944 doctorial thesis:
It seems that for success in science or art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to rethink a subject with originality so as to create in new untrodden ways, with all abilities canalized into the one specialty. 
The increased prevalence of autism in the twenty-first century has followed the expansion of technological advancements. Daniel 12:4 says, “But you, Daniel, close up and seal the words of the scroll until the time of the end. Many will go here and there to increase knowledge.” We have witnessed an enormous increase in knowledge with the dawn of the computer age and the internet. Would this advancement in technology have been possible if not for an increase in individuals with autism who are prone to systemizing?

What if God does use the David’s and those with autism to confound the world’s wisdom and test the condition of our hearts?


Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He has a Master of Divinity from Oral Roberts University and has memorized over 10,000 Scriptures. On April 4th 2016 Charisma House is publishing, Ron’s book, A Christian Concise Guide to Autism. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their pet rabbit, Babs, and cat, Frishma. You can contact Ron on Facebook or email him at sandison456@hotmail.com.

Building Communities of Belonging 2015


The Building Communities of Belonging conference, put on by Christian Horizons, is coming up on May 9, 2015. I attended and spoke at the conference last year. It is a tremendous opportunity to connect with leaders, pastors, parents and those with special needs. You will find all sorts of resources that will help your church to be more effective in ministering to those with special needs. I highly recommend it.

You can find out more about and register for the conference here.

Here is an article I wrote in Faith Today magazine about last year's conference.

Monday, March 16, 2015

What is Disability Ministry?

What is disability ministry? For some churches, that may be a formal ministry with their own budget, volunteers and pastor. For smaller churches that may look much different. I recently wrote a post for the Disability and Faith Forum (which is a resource you really need to check out) on this very subject.

Here is part of the post:

I recently encountered a comment by a church leader who was asking if it was worth having a disability ministry since they “only” have about four children with special needs in their church. To be honest, this statement shocked me.

I understand what the person was saying. They were asking if that is enough children to have an organized ministry that was aimed solely at children with special needs.

But is that the definition of disability ministry? Does disability ministry require its own staff person or volunteers? Does it require its own room and time to meet? As a parent of two children with autism, I would just assume that any church that we attended would provide ministry even if there were no other children with special needs.

You can read the rest of the article here.

Sunday, March 15, 2015

7 Things Churches Need to Know About Autism

This post originally appeared here.


One of my goals is to equip churches to minister to families dealing with disabilities, especially autism. I have an ebook planned on this very topic.
This post is aimed at the mid-sized to small church that suddenly has a family with a child with autism attending. What is it that the church needs to know?
Autism1. Not every child with autism is the same. You may have known a child or had a family member with autism. Do not assume that the child attending your church is the same. It would be safer to assume that the child is different.
2. Anticipate safety concerns. Not every child with autism has safety concerns but it is better to be prepared. Find out if they can be aggressive to others or if they tend to run. If so, put a plan into place.
3. Do not assume that non-verbal means unintelligent. Some children with autism do not communicate with verbal language (either by ability or choice). That does not mean that they are incapable of learning.
4. The siblings need ministry. Often it is the child with autism that gets the attention. If that child has siblings, this is an opportunity for the church to minister. Make the effort to give them the attention they need.
5. The parents need ministry. It is exhausting (physically, mentally, spiritually) to parent a child with autism. Try to arrange date nights for the parents. Look for practical ways to make their life easier.
6. Children with autism make noise. I know that people like a nice peaceful and tranquil worship service but children with autism make noise. The glare you give during the service will not make a difference. The child will not notice or will not care.
7. The family did not come to find a cure for autism. There are dozens of “cures” for autism floating around the internet. There is no need to pass these on to the family. They are much more informed about autism than you are. The family came to worship God and have fellowship with people.
If a family with autism has started attending your church that is a great thing because it is much easier to stay home. The best thing to do is welcome them and love them. They have made themselves vulnerable to the church, please respect that trust.