Moments of Turmoil and Frustration

I feel that I need to do a follow up blog on moments in autism life that are not so great.  These are the moments that are the hardest to deal with for the child and especially for the parents.  When I talk to parents, we talk seriously about these moments. Our life is not an Instagram page of “happy times”.  The “real” life of autism can be very scary and hard to deal with.

 Life in the autism world is like living in a different universe.  Outsiders may not be able to totally fathom what goes on in this world.  I think if they did, they would run away extremely fast!  Each day can be challenging and I am extremely grateful for happy and calm moments. I relish in the peace and quiet when it comes.

 Let me tell you about some recent turmoil and definite frustration in our home.  Without getting into too many details, our son has immune system challenges that are dealt with medically.  Unfortunately, in the month of February, he has been ill for the entire month.  First it was a viral throat situation and then (through some yearly tests that we have done) we found out he had a bacterial infection in his gut.  This is extremely uncomfortable and painful and I am sure that everyone can relate to having an upset stomach.  This is much worse because it actually takes probably 3 weeks or so of medication to get rid of this type of infection. The physical pain is one component but the emotional pain is also very real.

 So things in our house have been very unsettled.  We have many sleepless nights because of our son being in a lot of physical pain.  This has affected all of our household.  We have had yelling and screaming and all kinds of emotions happening and at all hours of the day and night.  Our daughter actually had to go to sleep at a friend’s house one night because she was so tired. To top it all off, I’ve had to manage trying to be calm and stable and just supporting him while he goes through this. This is extremely hard when it’s a month of this going on. I have to say, I have not been at my best and I was very happy when he finally was able to go to school last week. We are still dealing with a few issues but the worst has passed and it couldn’t have come soon enough because I was totally physically and emotionally drained. The frustration and agitation from our son has really taken its toll.

 Dealing with emotions and feelings when you have autism is very difficult, whether you are verbal or non-verbal. You may know that your child is sick but they may not be able to tell you exactly what is going on. For some parents, they either have to guess or try to get a doctor to figure out what is happening.  This is so very hard on everyone involved. 

 I believe that God has given me a great big extra dose of patience for these times that are difficult to cope with. I know that I cannot do it on my own.  Every day this was happening, I just said a prayer to God to heal our son’s body because I know that everything is out of my hands. I have to leave things to God and trust that He will not allow me to get to a breaking point and if that does happen, I have to pray for more patience. 

Prayer has been such an important part of my faith journey.  I pray each and every day.  Sometimes it’s for specific things and sometimes it’s for God just to give me the strength to get through the day.  I make it a point of especially praying for families who are dealing with autism.  I pray that God gives strength and wisdom to these parents and that they feel that they have someone to turn to when things are difficult.  I also pray that God gives me the words to comfort and help the families that I deal with on a regular basis so that they will be able to see and feel the presence of God through our conversations.

Mark 11:24 says,
 “Therefore I tell you, whatever you ask for in prayer,
believe that you have received it and it shall be yours.”

 Say a prayer today for someone you know who is dealing with autism.  I guarantee God will hear your prayer!

 
Shelly Wedge|
xceptional Family Ministries Coordinator
Amberlea Church

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