Autism Awareness Month

I thought I would write a blog this week because April is Autism Awareness Month. Ask different people what this means and you will hear different answers - even in the autism community.  

For me, it’s just about learning or, in fact, educating people on one small detail.  We sometimes presume that people “just know.”  I don’t even know everything and I’ve been in this community for two decades!   

When I think of what I really want people to know about autism is that it’s not a disease - it doesn’t define a person.  It doesn’t make a person “less than” anyone else. In my opinion, it is not a “gift” even though one of our kids was identified as gifted.  It is for sure a different life and it is, in fact, very difficult at times. There are many things that can contribute to the success or demise of a day.  People on the spectrum see things different, they feel things different and they act differently at times from their peers. There is nothing wrong with this, it is just different.

I talk to my children the same way that I would anyone else, even if I don’t get the reply back that I expect.  I treat them as normally as I can but I am also sensitive to their specific needs and challenges.  For example, I know the face that our daughter makes when she is totally and completely overloaded and overwhelmed and cannot speak.  I know how our son is feeling just by the choice of shows he is watching.  When the frantic text comes that she doesn’t know what to do and I have to calmly talk her through the situation and when he takes 15 mins to come out of the car into the house.  I know what all of these mean and I don’t have to ask questions. 

I’ve heard the hurtful comments and I know that sometimes people may be so grateful that they don’t have to deal with some of the issues that our family does.  But I also truly believe and know that God created our family.  This is His plan for us and He gets us through the hard times and even brings such beautiful moments into our lives.  For this I am truly grateful.  I am grateful that I can count on God to bless our family and He gives us what we need to get through each day.

If I had to make an outward observation on the world, my wish would be for more kindness, more understanding - sometimes just a smile or a wave to a child.  The little things are what can make all of the difference in someone’s day.  Also, if you have a question, it is ok to ask.  Sometimes you can educate people just by engaging them.

There is not a reference to “autism” in the Bible, but Proverbs 31:8-9 says,

”Open your mouth for the mute, for the rights of all who are destitute.  Open your mouth, judge righteously, defend the rights of the poor and needy.”

Do you know anyone with autism?  If so, perhaps you can make a point to talk to them, write them a note or do something special for them this month so that they know that people care about them.

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

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