Summer Is Here!

Yes, I said it, summer is finally here!  For some parents, this is very good news and for others it can be a time that you experience extreme anxiety.  I am talking about the parents with children on the autism spectrum.  All of a sudden the routine has changed.  The days look different and this can totally throw your child into turmoil.  I found that when our son was younger, even doing something extremely fun like a camp, came with added stress, sometimes crying and just overall unhappiness because of what to expect.  The people were different, the environment was different and very often he did not know anyone.

I believe that even with the best plans and intentions, things can go badly.  One time I had our son in an autism camp. The staff was fully qualified and there were good ratios of staff to children.  I so badly wanted him to participate so that he could work on his social interactions with his peers.  I ended up having to “hang around” the place because he was unsure of the people and he wanted to have me close in case he didn’t make it through the entire day.  I did this happily as I wanted him to experience at least some of the fun activities that they were doing with the kids. I remember one day they had reptiles and they let me come in which was really nice of them.  

Camps can quite often be a challenge especially if no one there truly knows your child.  I also presumed with our son that the more things he was in, the better his summer would be, but boy was I wrong about this.  Turns out that our son loved his down time.  He wanted to have no structure.  He wanted to do his own things and just not be forced to think or participate.  Our son had done many years of at home therapy and he was always in a structured schedule and environment and eventually it just caught up with him and he was mentally finished.  Now as he’s older, he likes going up to the cottage and just being with nature and we make little day trip plans or plans to go see musicals.  It’s a lot of fun and boy it took me many years to figure this out.  I think each person has to figure out what works best for their child.

The summer can also be a good time to try things that you don’t normally have time for during the year.  We started going to live theatre a few years back as our son really loves it.  Now we normally go to one or two more expensive musicals downtown, but we have also found a really great live outdoor theatre by our cottage and we go and see at least 3-4 shows per summer.  It’s really economical and the shows are amazing!! Sometimes he sings and claps throughout and I totally love seeing him in this way.  It makes my heart so happy!

Every person in the autism community is different and we have to be in tune with these differences but also try to enhance their strengths and find out where their true passion lies. Both of our children are very creative but in different ways.  Our son is a really good photographer and this summer I am hoping to help him create some stock so that he can start to sell his things on-line.  This is one of his passions.  He also likes to do crafts and create other things. 

Our daughter is an amazingly creative person.  She is in graphic design at university and her creative power is so unbelievable. She is a true artist/illustrator and creates her own art/prints.  She makes jewelry.  She does photography.  She sews and makes her own patterns. She has created many clothing costumes etc.  She is so multi-talented and I am blown away by her creativity!

With creative people comes the struggles of time-management, anxiety and other stressors that others wouldn’t be bothered by.  In our house, anxiety can be amped through the roof from 1-10 within a couple of minutes.  This can create chaos and stress for everyone in our house and at times it’s either one or the other that this happens to but all of us pay the consequences.  This can be extremely challenging.

I am grateful to God for giving us the tools as a family to deal with unexpected situations.  My husband and I long for those peaceful moments and we cherish these so much.  When we have drama happening, we try to spell each other off to keep our environment as calm as we can until it passes.

We have learned techniques over the years and we try our best to use them in chaotic moments.  If you have a child on the spectrum you will understand “the moments” I am talking about.

I feel that my faith has strengthened as an autism parent.  I think back to when the diagnosis happened and all of the challenges that came after.  It was so very difficult, so much more than I ever could have imagined, but I remember my husband saying to me to just keep the faith, trust God.  That has always stuck with me, even in the darkest moments.  I believe that God had and continues to have a plan for my life and that of our children and the more I trust, the more he guides me in the right direction.  I always remember that I am not alone and that God is always there beside me each moment of every single day. 

Autism is a journey of hills and valleys and flatland.  I love coasting on the flatland.  I hate the valleys but know that they are necessary for growth and when climbing the hills, God gives me the strength I need to get to the top of the mountain.

“Now faith is the assurance of things hoped for,
the conviction of things not seen.”  
Hebrews 11:1

 Keep the faith, God will not let you down!

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

Possibilities

In life, there are so many possibilities. You can look at the possibility of each new day as it happens, the possibility of things that you want to look forward to in the future as well as just the possibility of the unknown.

 I believe that even people with autism have many possibilities.  These may look different but nonetheless have the same impact.  When I first started this journey, I think I felt robbed of any possibilities. I saw everyone around me having these experiences and that was just not my reality or the reality of our family.  I felt defeated, sad and alone most of the time and I didn’t want to think about “future possibilities.” 

 Today, this is not my reality at all. I’ve learned that kids and teens on the autism spectrum have many possibilities, chances or dreams as you may call them.  Just because their dream doesn’t look like someone else’s doesn’t mean that it is not true or does not exist.  As a parent, it is extremely hard to get out of your own head space and look beyond and dream beyond for your child because you are the voice and the one that can make these possibilities happen for them. We are the voices for our children.

 When our son first started high school, my husband and I talked and we did some research and thought that if he got 15 credits then that would be enough to get into certain programs at college.  We started off aiming for this possibility for him.  What we found is that we didn’t aim high enough! We thought he could do a combination of credit and non-credit bearing courses.  The first year, we discovered that he was bored with some of these non credit bearing classes, so the following year, we put him in all credit courses.  I told the school that it didn’t matter if it took him two tries to get that credit, but that was our goal. He now has all of his high school credits!

 To our surprise, he was able to get through the majority of his courses with a fairly good grade.  That’s not to say that he didn’t work extremely hard to do this. Our son is an incredibly hard worker and as a parent, I have figured out over the years, the best way to help him get through and even thrive!

 High school is opening up a new world of possibilities to him that we never imagined when we first began.  We are now looking forward to the college experience (on his terms) and will continue the journey to the possibilities for his future.  

Autism can be so overwhelming at different stages and times of your child’s life and believe me just because I am writing this doesn’t mean that we still don’t have challenging times and moments because we do. I always want to aim the bar super-high and if either of my kids don’t get there, that’s totally fine, but I will always help them strive to be the best version of themselves that they can be.

I am so grateful to God for putting me in this community and being able to influence, help and even create lasting friendships with people who are in the same situation as myself.  There is always an unspoken language between autism parents and it feels good to be able to have a community that loves and supports each other no matter what.

Hebrews 10:24,25 says, “And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another.”

My hope is that everyone sees all of the possibilities that their children have.

Shelly Wedge
Exceptional Family Ministries Coordinator
Amberlea Church

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