It’s Autism Awareness Month again. It’s that time of the year when all of a sudden everyone is interested in autism, and those of us who like to create awareness do lots of write-ups and posts on social media.
This year I don’t feel like that. I am tired. I am spent. I have had it with autism and all that comes along with it.
I want to give up.
Why, do you ask?
First, there is the issue of schooling. I could write a thesis on this. Last year it hit me that M was growing older and we needed to have a proper plan in place. It was not in M’s best interests to keep moving along with the rest, hoping that he would get some form of education along the way. We had to make some intentional choices. These involved a couple of assessments here and there.
Assessment – hmm. I need to share what happens here.
You pray that M behaves in front of the assessor so that the report doesn’t look that bad. You agree with M that he will listen and be on his best behavior.
Wueh!
As soon as you walk into the room, M decides to explore the entire office asking for a pen and paper to draw. He then starts talking to himself as he draws. Meanwhile, the assessor is just watching with a blank look. Eventually, M gets bored and decides to go out and play. The assessor looks at you and starts talking, saying some things you knew, and others you didn’t want to hear. He then bids you goodbye and you walk out, glad that it is all over, forgetting that you will be back in six months for a review.
Next issue – behavior. Oh wow. Some days are really good. Other days are not. Dark triggers fear. Rain triggers fear. New environments trigger coping mechanisms that include M wanting his way. The funny thing is that the behavior I used to observe when he was younger is all gone. We are now in another phase which comes with its challenges.
Last but not least is the challenge of social behavior. Meaningful conversations last only a few minutes before M veers off into a totally different story. Many people still don’t understand him. A few months ago a lady in a supermarket laughed at him and made fun of him because he was too scared to go down using the escalator. Others give him funny looks. Most of the time I ignore all this, but sometimes it gets to me. Don’t people understand that love and acceptance go so much further than ridicule and discrimination? Oh well…
In short, I am tired. This journey is wearing me down.
“You’re a strong mom.” “I love the way you fight for your child.” “I could never be as strong as you are.”
Those are the comments that drain me because I am not strong. I am not a fighter. I hate having to keep standing up to people just so that M can be treated with respect and fairness.
I want to give up, but I can’t. You know why? Because I have backup. Backup from my Father. Backup from the Creator of the Universe. Backup from my Saviour and Friend.
God gave me this child. He had a reason for placing M in our family. He knew what He was doing.
When I don’t have the strength to continue, God picks me up and takes me where I need to go. When I don’t have the wisdom or right words to use in defence of my child, He tells me what to say. When I don’t have the patience to teach my child, He gives me loads of it. When I need to discipline my child, he guides me on how to do it.
Without the Lord, I would have given up long ago. This, dear friends, is not a cliché. I have hidden in a corner many times and cried out to God, saying I can’t do this anymore. I have ranted and raved in His presence, asking Him why this journey has to be so difficult. But He always listens to me, comforts me, and gives me the strength to wipe my tears and move on.
So, friends, this year I am not celebrating autism or creating awareness. I am sharing with you what the reality is like for many parents of autistic kids. We would have given up ages ago if it was not for the Lord. The Lord gives us grace, strength, wisdom, and friends and family to stand with us. He bears our burdens and wipes away our tears. He sends us people to encourage us. He works things out for us when we least expect it.
Thank you, Lord, for helping me not to give up.
“The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.” (Psalm 28:7 NIV)