Holidays

It’s that time of year again - the Christmas season! There are so many exciting things going on! The beautiful lights, the Christmas music, even the hustle and bustle of excitement, especially children. This season makes people nicer, makes them care more for others and makes people want to be better. There is also craziness with people trying to get things done and getting cranky and it’s a hard time for those who have no family to celebrate with. As a Christian, we celebrate the birth of Christ and all of the events that lead up to that time.

 I have found over the years that having children with autism, the season can be truly overwhelming. There are schedule changes, more crowds of people and so many activities happening that it’s not easy to decide what to attend. I think every family has to decide what makes sense for their children and family to do at this time of year. Sometimes, it may even be necessary to split up if you have more than one child so that you can really focus your time on that moment. We used to do this quite often as everyone did not always want to do the same things and everyone did not have the same tolerance level.

 Some things that can make it harder for children with autism is choosing presents, believe it or not!  At first when our son was younger, we didn’t exactly know what to do but we wanted to make sure that he was able to choose the things that he wanted. As in so much of his life, the decisions were made for him. We started going to stores and taking photos of the things that he liked. It was expensive when we were at the store, as he also wanted to buy something while we were there.

When we had enough photos, we would ask him to look at them and decide the things that he really liked because of course we were not going to buy everything. When we first started doing this, we printed out the pictures so that he could have them in his hands.  This then slowly transferred into looking at flyers and eventually just looking online. Both of our kids are usually pretty practical and they don’t ask for an unreasonable amount of stuff.  Sometimes with autism comes a different way of thinking about the holidays and stepping out from your comfort zone.

 I used to plan so many (way too many) things to do during the holidays. I wanted to jam pack it all in and make sure that we didn’t miss anything because I thought that I would be doing a disservice to my children if I didn’t make sure that they were included in everything. It turns out, I had it all wrong. I was helping them get to their breaking point sooner by trying to do all of these activities. It took me some time to figure this out, but eventually I did and it has been so much better!

 This year as we look forward to the celebrations, we are not “planning” anything in particular. We know the activities that we can go to if we like, but we will wait until closer or even that day to figure out if we want to do any or all of them. I have learned that the Christmas season is all about just being with family and making memories, however that looks to you. So having said that, we have absolutely no plans carved in stone at the moment and that’s just the way we have come to like it. We are all happier to function this way and it takes the stress off.

 The best part about the season is remembering the birth of Christ as He is the reason for the season. No matter what your age or what your ability, God loves each and every one of us and it is nice to be able to come together as a community and especially our church community and celebrate Christ!

“For unto you is born this day in the city of David a Saviour,
 which is Christ the Lord.” 
Luke 2:11

Amen!

 Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

Struggling

I want to make this week’s blog more personal. Typically, I am a very private person, except with a select few people who are in my closest circle. I don’t like large crowds of people. Being the center of attention is very stressful for me. It’s extremely hard for me to take a compliment because I am an overachiever and most of the time, I feel like I fall short ... .I struggle just like the rest of you. 

Lately, my struggles are with my son and daughter who are both on the autism spectrum. I feel lately that I can’t get any time to just breathe and have some peaceful moments. I want to take you into a part of my life, a part that no one really sees and very few people know. 

Today is day number 6 that my son has been at home. He’s not feeling that great. His throat is hurting and he’s just plain miserable and I mean miserable. He will wake me up to tell me how crappy he feels like for the past few days at 5 am or before and he will be going on about it for a while. I worry about how much school he is missing and inwardly I get angry because every day he does this, I have to change my entire day around. It may be some work I have to do that I need to cancel. It may be an appointment I need to go on that I have to change. It may be just some shopping that I had to do. I feel inwardly frustrated but sometimes this comes across in my tone of voice or my actions.

Then there is my daughter. She’s always needing rides to and from the Go train. She’s always sending me messages about what she needs me to pick up for her and it is always for a deadline on that particular day. She’s stressed a lot of the time with the amount of school work that she has to complete. I never know what I am going to get when her bedroom door opens.

Then there is my husband. He works so incredibly hard trying to make sure that we are provided for. Most of the time, he is working 7 days a week in some capacity or another. He is involved in many different things. He is the curriculum chairperson for the Special Education Committee for the Toronto Catholic School Board in Toronto, a volunteer position he took to try to help make changes for children with special needs at school. He is an amazing provider with very little down time. Many of our conversations happen over text.

The bulk of our daily family things are with me, which most of the time is fine. But when you live in “autismland" (you’ll understand the term if you read my last blog) it’s not always that easy. 

For example, the simplest things in our home can trigger chaos. When our son is not feeling himself or irritated, every little thing bothers him, including when our dog barks which can happen a lot during the course of a day. When our son is feeling his normal self, everything is fine. But the past few days have been one of those times when the dog barks, he gets upset, so I am trying to get our dog to be quiet as well as calmly talk to our son. We have been working on our emotions so it is important to be able to talk about the different ones and how they can make us feel. 

Meanwhile, inside I am screaming as loud as I can because I am so frustrated that I can’t even go over to Metro because I don’t know what I will find when I return. 

God has taught me patience abundantly. Whenever I feel like I can’t stand another minute, I pray and he gives me the strength to handle the things in front of me. I rely on Him and I could not get through a day without him. God gave me this life and I want to honour him by raising our children in his image.

God does not make mistakes. He gave me this life, my children, my spouse, and all the chaos that comes along with this. It is part of his plan for me and I need to always trust that He will guide me through each day and give me enough strength to handle each situation.

I’m not perfect, but I am a work in progress, a work in God’s image. The situations God has put in front of me have not only strengthened my faith but allowed me to lean on God because I know that He is not only holding my hand each day and He is guiding me.

For those of you who have children with special needs, you will understand the struggles. For those of you reading this who cannot relate to this, that’s alright. The point is that we all face struggles every day. Some of them are easy and some are more challenging, but if we put our faith and trust in God, He will help us through them and He will make us stronger in our dependence on Him. 

God is good. He will not fail us.

I pray with you all today that you reach out to God in your time of need, that you “cast all of your cares upon Him because He cares for you.”

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

Living in Autismland

The term “autismland” is used by some in the autism community because that’s where I remember hearing it. I have also heard the term “living on autism island.” You get the drift. It’s like living in another world, one that most typical people do not understand. It’s okay if you don’t understand. We are not meant to understand every disability that exists in the world.

 I am a part of many on-line autism communities and I also know many people who have children and teens on the autism spectrum. Some of my closest confidants come from this community. 

 Lately, I have been reading so many different stories from the on-line community. I have to say that 99% of them are negative experiences that these parents have had to go through. I think that with the start of school, there are more challenges for these families and our school system (not just in Canada) is not equipped to handle these challenges. 

 As you may be able to imagine, some of these stories are heartbreaking…….parents have to pick kids up every day because of something that happened….negative notes are being sent home to parents describing how bad their child was during the day…..parents having to deal with their child on the spectrum being aggressive toward their other children…..talk about what meds they can put their child on…….the list goes on and on and on. Every day parents are looking for advice, help and guidance on what to do. Why is it like this?

 My heart breaks every day when I read these stories because some of them I have personally experienced. I’m not here to analyze our broken school system or the lack of support for people with disabilities to be able to be given the same opportunity to learn in a way that makes sense for them. I just want to bring awareness to the matter.

 Our family experienced lots of devastation and things that if you don’t live in autismland you could never possibly comprehend. Even now that our children are older, we are still navigating a different world from everyone else. The course of a day can change very quickly and we just have to move along with it. 

 Most people don’t know what to do to help and I get it. But there are things that we can all do to make small happy moments happen during a day. Perhaps it’s a smile you give someone who is sitting across from you at an appointment. Maybe it’s a quick text or email telling someone you are praying for them and their family today. It could be dropping off that much needed coffee to a parent that makes their day just a little brighter. Or dropping off a special treat for that child to enjoy, or perhaps picking up some groceries for them. The list goes on and on.

 If you don’t know what to do, just ask. 

God created us all unique and special. The way we are is exactly the way that God wants us to be. God also created us to help our neighbour and to help people in need. 

Galatians 6:2 says,

“Carry each other’s burdens, and in this way you will fulfill the law of Christ.”

What an amazing verse for all of us to remember! We have so many opportunities every day to honour God. Let us always remember that.

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church