Autism

Autism and Church

Recently we attended a service for Easter that was a multi generation service. All ages were in attendance, and there were no programs for the children. When I was a child and attending church, there were no church time programs for children over the age of three and we were all expected to sit quietly in church…or else!
I didn’t want that for my children, and we have been so pleased to find a church that has extensive programs for youth and children both during the church service for ages 4 to grade 5 and programs throughout the week for all elementary, middle school and high school aged children. In a perfect world, they’d be perfectly well behaved, but let’s face it – they are kids. And they have autism.
I was thinking about this after we painfully sat through the service shushing children who sat still for awhile, then wiggled a lot, who talked louder than the pastors (I am sure the whole church could hear us from the back row), and who let out an occasional yelp when things got dicey. I looked over at my husband and mouthed “never again” and then later “why do we do this to ourselves?”
Okay, let’s be honest. It’s hard. It is difficult for them to sit still and quiet for so long. It is uncomfortable and embarrassing for us when they make noises and actions that distract other church members who are just there to worship God. Some people give us the stink eye. Some people smile and give us a thumbs up because they know we’re trying our best. And some just hug our children and us when it is all over.
Those things I mouthed to my husband? I feel like that a lot. I often ask him, “is it worth it to take them to church this week?” He always answers yes. I know my heart answers yes, too. But sometimes I can’t see past the possibility of what could happen. But here’s where my wise husband is correct – it is always worth it. Because why should they be different than anyone else?
Why shouldn’t they be allowed to sing from the top of their lungs, completely off key? They’re making a joyful noise to the Lord, just like He loves us to do. Why shouldn’t they be able to join church activities? Just because they are more difficult than other children and require extra time and effort to teach doesn’t mean they don’t deserve to be taught. Their exceptionalities give them perspective and understanding that other children have yet to grasp. The truth is that they need Jesus too – so why shouldn’t they be able to worship with the rest of us?
And so we continue to go. We continue to have presence in our church – and by that I mean we’re so loud everyone knows we’re there. We are so blessed to be in such a loving church family where most people know us and accept us as we are, and those who don’t just haven’t met us yet. I am sure if they got to know the loud and obnoxious family in the balcony, they’d get there.
But this can go the other way as well – and here’s the danger. Sadly, our church hasn’t always been so loving and accepting. There was another family with an autistic son who overheard someone say that children like him were not welcome in a church. That family never came back to church, even though they needed to. Because all of them needed Jesus.
How can we make church easier for people who have children with exceptionalities? How can we make church easier for those who have to sit close to families who have autistic children?
The first step is in understanding. As convenient as it would be for all involved, there is not a pause button for autism – they can’t just shut it off for an hour. In order to reach out in love and acceptance you need to understand a few basic principles:
  • They are not “normal” children. They are incapable of performing like their peers can, regardless of age. They have their own milestones that are incomparable to other children.
  • It is difficult for them to sit still. They have many resources in place at school to help them adapt, but little to none at church so they are trying as hard as they can.
  • They will make noise – it can not be helped. This is how they are processing what they are hearing in church and coping with being in church. Some children are non-verbal, so the only way they can communicate is by making noise. Others are capable of speaking, but they do not have a volume control and their voices are very loud.
  • They can hear record breaking frequencies. It can be inconvenient to be in a place of worship with an autistic child when you are wearing a hearing aid and they make noises that hurt your ears. However, these children often hear at high frequencies that hurt their ears every single day, resulting in them being loud – they are trying to drown out all the other noises they are hearing such as the hum of the projector, the whirling of fan, the scratching of the microphone, the shuffling of other people’s feet. The difference is unlike a hearing aid, they can’t just turn it down.
  • They are very tactile. They have little sense of personal space and will touch or be close to anyone they feel comfortable around, even strangers.
  • Prepare. Children with autism need to be prepared for special services such as Easter, Christmas, Missions, and multi generational services. If there is a multi generational service, it is often best to remind the congregation there will be noises that are expected and to prepare themselves for them.
Once your church family understands some of the basic behaviours of autistic children, they are able to adapt a little easier and stop whispering about so and so’s bad parenting. Hey, it happens.
Make adaptations for them. This can be difficult, because most of the church workers are not experienced in dealing with autism and don’t know what to do when something happens. Using resources like they have in school for church time can be very helpful.
  • Social stories like this one for young children or those who have never gone to church before can prepare the child and possibly prevent a meltdown or incident.
  • Visual aides like these can help children with the schedules and routines at church. (If there is a change in the schedule, you can ask the pastor to notify you so you can change your visual aides.)
  • Encourage breaks from the program if the child appears agitated. A “break” or “help” card can be simple to make and very convenient for the child to use when needed.
  • One on one help is helpful for children with autism if there are enough willing workers. Having someone there just for your child that they trust and are comfortable with can make a huge difference in their behaviour.
  • Allow tactile objects for children with ASD such as a small stuffed animal, a building block, etc. Not only does having something in their hands allow them to be able to focus on what they are being taught, it also keeps their hands busy and less likely to get them into a situation with someone else.
These are some ways that might help. The most important thing is to have open communication with your pastors and children’s workers – they want your children there as much as they do. Ask questions and make suggestions.
Dealing with disruptions is key. Pastors and children’s workers, be honest about the children’s behaviours. If there is a situation, talk to the parent as soon as you can. It is harder for them to deal with the behaviours if they do not hear about it the same day.  You can often use dealing with disruptions as an opportunity to show God’s love and compassion. First, remove the child from the program if they are spiraling out of control. Seek the parents for help if you can’t manage to get them to calm. Once they are calm, teach them one on one if the need arises. God has brought these children to church because He has a purpose for them. One of the most powerful examples of how God can speak to a child that we have witnessed happend in the aftermath of a meltdown. The children’s pastor took our son into his office and had a one on one lesson with him. I am sure he had other things to do, and this was a disruption to his day, but He allowed God to use him. At the end of the lesson, our son drew a picture of Jesus riding into Jerusalem on a donkey and the attention to detail of what he had heard was  unlike anything I’d seen before. When in doubt of how to deal with children with autism, take a moment to pray and ask God to show you ways to teach them.
Inclusion is so important, and one simple invitation can change everything. Look for special talents and gifts the child might possess. Each child is specially gifted to help serve, even in the most simple ways. Our church serves a breakfast every five weeks where our church family gathers together for a wonderful meal. After everyone is finished eating (and sometimes before!) our sons go around and start clearing dishes from the tables and taking them to the washing station. This was never a task they were asked to do, but they have continually taken the task upon themselves to serve others in this small way. Often when they are done that, they are invited to help stack chairs as well – something simple they can do that makes them feel important and part of the bigger picture. Our God can use little boys who stack chairs and clear tables. It’s a starting point to serving in other ways.
Encourage the parents. Pray for them. It is a long, hard and exhausting road that they walk. It takes a lot of strength to take your children to church (or anywhere else, for that matter). If you see them on a Sunday morning, smile and say hello. They likely won’t have time to talk, but that small hello can go a long way. If you feel lead to serve, call and ask if there is any way you can help – even if it is something simple like shoveling their driveway or mowing their lawn. Love them and encourage them. It’s so simple and so needed.
God calls us to be His hands and feet – reaching out in love right now. Consider how you can help. 1 in 68 children are diagnosed with an autism spectrum disorder and they need the love of Jesus more than ever.

 

 

Autism · Family

Plugging In

Last year the children received tablets for their birthdays. Initially, they were given to them so they would be able to access homework apps like Raz Kids, IXL and others. However, they generally just use them now for fun and games. And that’s okay with me.
Technology can be a wonderful thing, and it can also cause many issues, including health issues. Like anything else, “everything in moderation.” I remember someone telling me they think us allowing our children to play video games is ridiculous and that their child will play outside instead of being allowed to use the computer or have a tablet. I just smiled. You see, her son is only two. She has no idea what it’s going to be like when her son is part of the public school system. Technology is the future – and the way they operate in the school system reflects that. They use computers, iPads, and homework is often done online. Even in elementary school. She’ll find out soon enough.
Don’t get me wrong. My children aren’t little zombies playing video games and games on their tablets all day long. My children go outside. They love playing outside all year round. Need some proof? Here you go.
Catching Snowflakes in the Winter

 

 

Sidewalk Chalk on the Deck in the Spring

 

 

Tons of fun to be had in the summer time!

 

 

Running around in the Fall
So we do have fun outside. More often than not, the boys will play outside for hours. When you play outside, adventure awaits. You can do anything you set your mind to. You can have concerts with a few backyard toys becoming makeshift drums and pianos. You can climb trees that you pretend are lookouts on pirate ships. You can dive into a pile of leaves, pick flowers, go for walks. Outside you can bike, play tennis, go for a swim. Being outside is a good thing, I get that. But I’d like to argue that in our lives we enjoy a good balance of both.
During the school year, we use tablet time as a reward. For an excellent day at school, they can earn up to an hour and a half on their tablets. But we do have some ground rules.
#1. Absolutely no technological devices in the bedrooms. (I have boys. Let’s be honest, it’s a good thing to be setting the rules early on. Am I right?)
#2. Clean Before Screen. (Our children have daily chores they must complete before they can have their tablet time. This includes homework).
#3. All apps and games need to be reviewed by a parents before they are installed. (I just like to know what they are doing and what they are looking at).
#4. NO SOCIAL MEDIA. (They’re only 9 and 7 – there will be lots of time for that in the future. Safety first!)
These are pretty simple, and they will be subject to change with a few more added as they get older. For now, they are working and they allow some much needed down time for the boys.
With the pressures and daily struggles that they have, it is nice to have an activity where you can just relax. We have noticed the tablet time allows for just that. And while their bodies aren’t moving much, their mind is active. Quite a few of their games require strategy, logical thinking, and most importantly for them and their motor skill issues – good hand/eye coordination. They even have learned some money management from games that require purchasing items with hard earned coins.
We often have what we call “Plugging In” time, where we all sit together in the family room with our own set of earphones and tablet, doing our own thing. The boys might play a game or read a book. My husband will listen to some music and play some games. I will usually read a book while listening to some relaxing piano music. Sometimes I will check Facebook or play a game. It’s basically just an half hour of peace where we are together, doing something separately. And that works for us. Occasionally, someone will comment on something interesting they are reading or doing and we will all check it out. But usually it’s just quiet. On a typical day, this time is scheduled in right before supper. Previously to Plugging In, this was “the witching hour” where everyone was tired, cranky and melting down. It’s a wonderful way to start winding down the day. There is a sense of togetherness, even though we’re doing our own thing.
Everything in moderation, including screen time. And a little bit of a good thing right before supper? Works for me.

 

Autism · Family

Here We Go Again


Sitting in the psychologist’s office the moment they finalize the reality that your child has an Autism diagnosis, you have a dual feeling of relief and dread. You’re relieved because you finally have answers as to why your child is the way your child is. And you dread what the future holds for them, because as you might well know, life with an autism diagnosis is so much different and more challenging than life without.
I wrote those words three years ago when we learned that Aiden had autism. They ring true again for us in a very bittersweet way, as we learned a week ago that Micah does as well. Like before, a million thoughts run through your mind.
How did I end up with two this way?  Just how bad is it? Will he ever be able to move out of the house, get married, make a life for himself? Oh my poor, sweet darling boy.
And then, you leave the appointment with the psychologist and a burden lifts from your shoulders. It’s surprising, this time. A burden you didn’t even realize was there. And it’s gone, because now you know. And sometimes, knowing is just what you need. Even though it’s hard knowing. Even though it means it will be different knowing. Even though it really means everything is still the same as it always was.
You feel relieved for a moment. And then, this. You remember this sweet face. Still the same sweet face, the same sweet love that he was an hour ago, before you knew. You remember…


All the times he made you laugh. All the times he snuggled up to you on the couch because he just loves you so incredibly much. All the times he drove you bonkers because he had to say just one more thing before he went to sleep at night. All those times he held on to your hand on the walk to school over the last few months, when all the other kids were looking, because he just didn’t want to let go yet.
After you remember you know it will all be okay. No matter what sort of diagnosis he has. No matter how many things aside from autism appear to be wrong with him. It will be okay because he is still the same. And even though you’ve been hit harder than you expected with this news, so are you. 
So you go about your day, doing what you need to do. Sometimes an autism diagnosis is like a golden ticket. All the help that you needed for your child is now available to them, because you know. So you make the phone calls. Set up the appointments. Hope and pray that it will all work out to help your child get the support they need. 
And then it’s time to go to school and pick up your child at the end of the day. You think you’re okay. You’ve told yourself everything is fine. But as you see him in the hallway, struggling with his coat and backpack, you are flooded with emotions you weren’t expecting. You start to bubble up and tears spill out. Embarrassed, you try and wipe them away so the other parents and the teachers don’t see. 
As you walk home, your ears are filled with the wonder and the excitement that he brings. And you’re back to understanding that he is just the same as he was yesterday and the day before. You’re back to understanding that knowledge is power. So you smile, thinking of all the resources your child will now have. All the help he will receive to make him the best he can be. 
That unsuspecting grin that he flashes your way with a little giggle and a side stepping dance on the way into the house brings you back home. He is home. His brother is home. Autism is just a part of life now. But then, hasn’t it always been? It’s just that now, you know.

Autism · Family

Don’t Let Comparison Steal Your JOY

I might be a little bit crazy. This past weekend was Thanksgiving here in Canada. My husband had to work and the kiddos were feeling under the weather, so we waited until yesterday to celebrate. We had a delicious “turkey” dinner (okay, it was chicken) and some pumpkin pie that I made using my Grandma’s secret recipe. And then…oh, then I let comparison set in.

You see, everyone and their dog had taken some beautiful fall family pictures and posted them up on Facebook. Some were just candid shots, others were professionally done. Every once in awhile, I look at everyone else’s photos of their beautiful, perfect smiling children and I just get a crazy old green minute where I want that too.

So, off we went to the most beautiful park in the city where we could get splendid fall photos. I had the camera, I had the leaves, I had the handsome hubby, and then…I had…my children. Perfect? Never. Smiling? Not always. Beautiful? Yes, yes, and yes.

I have been here before. I have cried frustrated tears for the perfect family photo that we will never take because one child has autism and the other likely is as well. They have a hard time even looking directly at the camera – and then when they do, they usually aren’t smiling. 

But then, I take a second glance. This isn’t someone else’s family. These people are mine. My heart and soul, my flesh and blood. I am not perfect in any way, so why should I expect them to be?

After I got over my initial feelings of regret and frustration of not getting the perfect picture, I realized I was letting comparison steal my joy. Because let me tell you, even though we’re under a lot of stress and we have more to handle than your “normal” family, we have a complete abundance of joy. 

And these little boys? These are my heart. Are they a handful? Yes. Are they exhausting? Just pass me that pillow so I can close my eyes for five minutes. I mean, really. My husband and I operate on only about five hours of good sleep a night, and he’s pushing 40. That’s just life. And do you know what? We wouldn’t trade 8 – 10 hours of undisturbed sleep for either one of these boys. Ever.

As we walked around the park, they climbed on rocks and jumped in ditches. I tried to keep from cringing as I watched them get their clothes absolutely filthy. I couldn’t help but mention once or twice they were getting their shoes soaked in the creek and that they’d have nothing to wear to school in the morning. I really held back, because that’s how boys live life. Dirty, messy, adventurous life.

See the wonder on their faces as they looked through an oversized drain in the middle of the drying up creek? You really can’t duplicate this wonder often. So you need to appreciate the joy in it when it comes. And sometimes, joy comes in messy, dirty boys looking at a drain pipe.

Micah ~ age (almost) 7

Aiden ~ age (almost) 9
We might never get that perfect family photo to blow up and hang in our living room. But we have memories and we have moments so full of joy, I am not so sure we need one.

Autism · Family

Where It All Begins

Sitting in the psychologist’s office the moment they finalize the reality that your child has an Autism diagnosis, you have a dual feeling of relief and dread. You’re relieved because you finally have answers as to why your child is the way your child is. And you dread what the future holds for them, because as you might well know, life with an autism diagnosis is so much different and more challenging than life without.
 
When it was me, sitting in the home office of our wonderful psychologist, on his particularly comfortable couch on a rainy and cold fall afternoon, I experienced both those feelings. A thousand thoughts ran through my mind as I tried to focus on what he was saying. But I couldn’t really. All I could think about was how thankful I was that throwing chairs across the room, crying in the grocery store because they were out of his favourite cereal, and being afraid of loud noises like the vacuum cleaner were instantly explained. Then, seconds later, mourning the fact that he might never be able to have the life every Mom dreams for their child – with an honest hard earned career, marriage and a family. It was a lot to take in. Then, a few hours later, realizing as you walk thorough the door of your home and see his smiling face, that it doesn’t really matter what he is diagnosed with, he will always be the same amazing person that you know and love with all your heart.
 
Sometimes autistic disorders can steal your joy. You’re constantly faced with the day to day struggles, challenges and battles that come with the territory. So many special education meetings at school, behavioural support and social training, and just every day maintenance can be overbearing. Overwhelming. Exhausting. It’s hard to see beyond these things sometimes. But when you do, you see the wonderful gift you’ve been given. Because autistic disorders can bring such joy. That’s what this story is all about. Our experiences living with a really joyful, sweet and funny boy who just so happens to have Aspergers  – beauty in the broken.