Living in a World Not Designed For You

 We do so many things throughout the course of the day. We wake up, get dressed, eat breakfast, gather our stuff for the day whether it is work or school and head out the door. We drive, get a ride or take public transit to get to our destination.

 Once we get to our destination, we have to hang up our coat, put away our lunch (if we bring it) and get our things ready to start our classes or our jobs.

 There are so many things that go on in our mind between all the choices that we have to make by doing all of these things, more than I even mentioned.

 If you live with autism or you live with someone who has autism, you begin to realize that there are many more things that go on and many more preparations that need to be made in order to just do what I described above.

 For example, some kids/people with autism, need something called a visual schedule to remind them of the things that they need to do to get ready in the morning.  This may be with pictures for younger children or words if the person can read. It could look something like this

• Brush your teeth

• Get dressed (Even broken down more may say, put on underwear, put on shirt, put on pants)

• Wash your face

• Eat breakfast 

• Put your lunch into your backpack

• Zip up your backpack

• Put on Your coat

• Put on your shoes

• Put on your hat

 Hopefully you can see what I am getting at. Things that many of us do automatically are not automatic if you have autism. Of course, there are different variations for everyone on the spectrum and many times when you break down tasks, the person will eventually not need these reminders and will be able to do all of these things independently.

 When our son was first diagnosed everything had to be broken down into smaller chunks.  This made it easier for him to understand and it also helped him stay on task and guided him.

 Today when he gets ready for the day, he doesn’t need any of these reminders, he just does these things on his own. My point is that our world is not designed for people with autism. It does not take into consideration the things that they need to be successful. That’s not to say that we are not making some progress, but for the “world” this progress is slow.

When you live with autism, even going into the grocery store can be overwhelming and difficult to navigate. There are many sounds, smells, noise etc.  But we all must learn to navigate grocery stores because eventually we are all going to have to buy food. 

 I have learned so many ways to teach skills to my own children with autism- some by trial and error and some from professionals or just other people making really great suggestions on how to deal with some of these things.

 Another thing that looks different and can sound different is emotions that people on the spectrum demonstrate and the way that it looks to others. Older kids can have meltdowns or scream which is not always socially acceptable. Parents of these children often feel helpless and judged, especially when out in public.

 The world can be hard if you are on the autism spectrum, but one thing that I always remember is that God loves all of us. Also, I genuinely believe that people are good and want to help but sometimes just don’t know how. God asks to help each other and support each other. I personally always find that starting with a smile can go such a long way. When I see someone who doesn’t necessarily fit into the “Box”, the first thing I do is smile because I know that God created all of us exactly the way he wanted us to be. He does not make mistakes.

 Matthew 7:12 says,

 “So in everything, do to others what you would have them do to you,
for this sums up the Law and the Prophets.”

May God bless all of you today, in whatever you do and whatever you say. Let us show God’s love to each other every day.

Shelly Wedge          
Exceptional Family Ministries Coordinator
www.amberleachurch.ca

Words

What do you think of when you hear this word?

One of the dictionary meanings is, “choose and use particular words in order to say or write something.”

Words can have different meanings depending on the way you look at it.  We all know that words can be good and bad.  They can be used to help and support and they can also be used in a negative way to hurt someone or to say mean things.

More often than not, when you are talking about autism, you will hear the “words” in a negative way. It could be something like, “She has autism”. Or, “He can’t do that because of his autism”. Or even just plain not saying any words at all to a person with autism with the assumption that they cannot engage with you or contribute to the conversation or task at hand whatever that might be.

I recently had an experience with our son’s school.  I won’t share all of the details, but the words that were said were very hurtful. We had been trying to figure out his courses for this semester as things had to be shifted around as he didn’t get one of his credits last semester.  The person I was speaking with became very defensive on the phone and this is someone I have known for a few years now.  She was telling me that our son “could not” do this particular subject which I knew was not true but that we would need to look at the teaching style and supports for the way in which he learns. 

If that wasn’t upsetting enough, she proceeded to tell me that the prior course he did last year (which the teacher was really awesome and accommodating) wasn’t scored correctly or the teacher hadn’t done something right or allowable during the exam so basically he shouldn’t have received the mark he did. Wow, I felt stomped on and horrible and I knew what she was saying wasn’t true, as I know from experience that teachers have a certain amount of discretion when it comes to modification, testing and marking.  It still stung.  I got off the phone and broke down and cried. Our son had worked so incredibly hard and we were so proud of him for this achievement and now she was trying to take this away from him.

Her words hurt me so very much. I don’t even think she has any idea of how unprofessional she was but also just how thoughtless as well.

I tell you this story in terms of special needs and autism because this happens so often. We call things disabilities. We hear the words “can’t”, “won’t”, “will never be able to” and so on. Let me tell you that there are many, many, things that people said our son would never be able to do or couldn’t do that he is now doing and succeeding at! Just because a person learns a different way doesn’t mean that they are not teachable and certainly has no bearing on their future success.

Some of the parents I talk to are beaten down a lot. They have so many of these terrible moments that it can break them.

 God wants us to always be kind to people - all people - not just the ones we are intimately connected to. He instructs us to do this. Ephesians 4:32 says,

 “Be kind and compassionate to one another forgiving each other,
just as in Christ God forgave you.”

 I had a very wise friend who gave me some great advice after this interaction I had. She said “Shelly, just pray for her, put it aside and don’t think about it anymore.”  I am so grateful for this advice because that’s exactly what I did.

 Let’s all be conscious of the words we choose and show kindness to everyone.

Shelly Wedge
Exceptional Family Ministries Coordinator
www.amberleachurch.ca

Season for Compassion and Understanding

 This time of year means different things to different people. Families celebrate the holidays with their own traditions. All families who celebrate Christmas probably have certain things they do together, such as decorating the tree, putting up Christmas lights or even the type of food that is made at this time of year.

As I reflect back on some of our traditions, we have evolved as a family over the years. As you know, both of my children are on the autism spectrum. Ways in which they participated in the holidays has changed vastly as time has gone on. For example, one year, our daughter was doing something out of the house and we had put up the tree without her. It had taken us awhile to decorate it and put up the lights and we had really enjoyed the process of doing this. When she came home, she was so upset that we had done this without her (even though at the time, she couldn’t commit to a timeframe of doing this with us). She was not just upset, she totally flipped out and we had to take every single one of the decorations off of the tree, take the tree down (we have an artificial tree), put everything away and start over. While this made her feel better, our son was screaming and crying because of all the hard work he had done to put the tree up. It wasn’t fun at all.

Our son really loves Christmas and one year he wouldn’t let us take down the tree. He was upset and crying so we just left it up for a while. Eventually, we took it down when he wasn’t home.

Another funny scenario is when our son was 3 years old. We were all getting ready for Christmas Eve service and I had bought him a new red vest. He had fallen asleep before going to church. When we got there and I took off his coat, he screamed after looking at his vest.  I had to take him out of the service and take the vest off.  He never wore red again for many years!

In recent years, we have just taken all of our Christmas decorations out and let our kids do it all themselves and we have all enjoyed that. This year, my husband was away with work and I told him it was time to put up the tree so he left everything for us.  I asked our daughter to participate and she didn’t want to, so my son and I did this together. It was actually quite relaxing and fun and it made me think back to the times when it wasn’t so much fun. 

Some of these things that I am sharing probably seem foreign to people who do not have children or grandchildren on the autism spectrum. I have learned to adapt over the years and have had to follow the lead of our children. Our family tradition certainly is much different than the one I experienced growing up.

I have learned compassion and understanding, not only for my children but for all children with autism. They do not think the same way. They sometimes cannot express exactly what they are thinking. They do want to participate and have fun in all holidays. They want to feel valued and be included, even if it looks different than everyone else. Holidays can be challenging for those on the spectrum because holidays deviate from regular day structure.  They can get easily overwhelmed and out of control. Families have to be resilient to this and they have to support their children through the process. This may be hard for others looking in to understand and that is where compassion is so important.

The great thing about Christmas is that we get to celebrate the birth of Jesus. No matter how young or old you are – whether you have autism or not, God wants us to celebrate in the birth of his Son in whatever way we can.  There are no rules and no expectations. God loves us all so much!

Luke 2:11
“For unto you is born this day in the city of David a Savior has been born.”

At Amberlea Church, we encourage children with all abilities to come celebrate with us by participating in our Christmas play on Sunday morning December 17th. You don’t need to learn any lines or practice. Just come and join us for a morning of fun!!!

Shelly Wedge   
Exceptional Family Ministries Coordinator
Amberlea Church
www.amberleachurch.ca