A Moment in Time

There are lots of moments in time that I remember - both good and bad. 

I want to share a really great moment with you and this is honestly probably one of the greatest moments as it involves both my son and daughter.

We decided to go to the movies over the holidays. We wanted to go to the “over 19 theatre” as both of my children are now in this age bracket. Normally just my son and I go to the movies together. We have done this for a very long time. In fact, I cannot remember the last time my daughter went to the movies with us. This time when I asked my daughter to come, I was pleasantly surprised that she said yes. We were all quite excited to try out this theatre as we had heard great things about it. We had gone to a 4 pm show so it was not very busy which was perfect for us. None of us likes crowds or noisy places.

We all ordered some fancy drinks and food and they delivered it to our seats - like Wow! It was so nice! And to top it all off with the nice little table and heated seats, we were all in heaven!  This was such a great bonding experience for me to have with both of my children. This may sound odd to a lot of people who go to movies as a family all of the time and you may be thinking why is she getting so excited about such a silly thing? But if you live with someone on the spectrum you will totally understand.

Honestly, it was such a nice time we all had together and it’s a memory I will never forget - such a perfect day!

When you live with autism, there are so many dark moments - moments that you choose not to remember, moments that keep you up at night, moments that you cannot even share with other autism parents.

I think God provides us with those good moments just when we need them the most .I was at a place where I really needed it. I am so grateful to God for the good moments that He has given me and the strength that He gives me to manage the difficult ones.

Deuteronomy 31:8 says,

“The Lord himself will go ahead of you. He will be with you.
He will never leave you. He’ll never desert you.
 So don’t be afraid. Don’t lose hope.”

 God’s promise to never leave or forsake His people reflects His desire to be intimately involved in their lives. He doesn’t just send His people into challenges; He goes before them, paving the way and walking with them through every trial.

 In all my years living with autism, this was one of my most memorable moments and I thank God so much for giving it to me.

 If you are an autism parent and you are struggling, God knows, He understands, He hears you and He sees you and  know He loves you and will be by your side every step of the way. That is one thing that I know for certain in the darkest moments, there is light and there are good “Moments in Time” to be had for all of us.

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

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