Opening the Curtains

Before becoming a mother whenever I heard the term “high-functioning autism,” I used to think, “Oh that just means that there really isn’t anything wrong with the person.”  Now I am the mother of a child diagnosed with high-functioning autism, and I know how wrong I was.  I understand that high-functioning means that my son can speak, he can feed himself, brush his teeth, use the toilet, bathe himself, dress himself, etc.  However, he doesn’t function like a typical 8 year-old boy.  On my Facebook page I celebrate the highlights of my children’s accomplishments.  I determined that I would not use that platform to complain or to draw sympathy or to in any way talk about the struggles we have with our children.  However, here on my blog, I have the freedom to share some of the gritty details of what our life is like with an autistic boy in the family.  Not to draw sympathy nor to complain, but to open the curtains so people can see more of what really goes on and perhaps gain understanding and insight so they might have compassion when they see a child acting out in a peculiar way.

A few months ago a friend of mine posted a meme on Facebook:

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I cringed because I know people have made that accusation about my son as well as making other accusations about my poor parenting skills.  I had to respond to my friend that sometimes that bratty behavior really is a disorder, and I asked the question, “How would you know?”  Most often, you wouldn’t know the difference because what you are witnessing is a brief snapshot of a moment in time.  In that moment you may be seeing a child in the midst of an uncontrollable raging meltdown and the parent staring glassy-eyed into space and ignoring her child.  You may think, “Why isn’t she doing something?”  The simple answer is that there is nothing she can do at that moment except try to keep calm and wait for the storm to pass.

When an autistic child is in melt-down mode, their limbic brain takes over.  This is the area of the brain that is responsible for emotional and social responses.  In melt-down mode they are completely irrational.  They can’t simply calm down.  Any word spoken to them is like a sword piercing their ears.  Any touch is like fire on their skin.  It is typical for a child like this to have up to ten melt downs per day lasting 20 minutes on average.  That’s 200 minutes.  That’s 3 hours and 20 minutes of screaming.  Every. Day.  That glassy-eyed parent is merely trying to cope.

Hyper-sensitivity to sounds

My son is hyper-sensitive to sounds, so going out in public can be difficult for him.  Imagine being in a restaurant.  What are the different sounds you hear?  People talking.  Dishes clinking.  Music.  Babies crying.  To us, some sounds are loud or soft, and we have the ability to filter sounds so we can pay attention to the conversation at our table.  For my son, everything is loud, and the most irritating sound to him is any noise a baby makes.  My son squirms, complains, and can be down-right rude in his comments about the baby.  He has no filter.  He is being brutally honest about how he is feeling.  The only thing that helps is having him wear sound-protection ear muffs to block the sounds.

To give another example of his hyper-sensitivity to sounds, we were staying at a hotel and he really liked to watch various elevators.  There was a glass elevator in the lobby and regular elevators other places.  He studied them.  When I could finally get him to move on, I was surprised to hear him comment about how the elevator in the lobby had a higher tone than the elevator that was close to our room.  Who pays attention to that?  My son.

Rigidity in routine

My son schedules every moment of everyday, and everything must happen exactly at the time he schedules it or the entire day is shot.  An exaggeration?  Nope.  If he schedules something at 9:00 a.m. he will stare at the clock and wait for it to be 9:00 before he starts his scheduled activity.  If his mind drifts off for a moment and he looks at the clock and it says 9:01 he goes into a melt-down because he missed the time and he doesn’t know how to do what he scheduled at a different time.  He becomes so distraught that he will say things like, “I don’t want to be on the earth,” which is scary to hear.

Oblivious to social cues and manners

We were at a concert at church a few weeks ago.  Before the concert started, the woman behind us introduced herself, and my son introduced himself, “Hello, I’m Aaron, and I’m a human duck.”  The woman was understandably puzzled and didn’t know how to respond to that.  Yes, my son has convinced himself that he is a human duck.  This is due to a cartoon character named Quack from the show Peep and The Big Wide World.  He even takes it so far as to walk like a duck, and quack in the middle of talking.  He thinks he is being cute and funny and has no idea that he comes off as weird and strange.  It’s heartbreaking knowing how much he longs for friends, but this strange behavior repels people who are meeting him for the first time.

This past summer there was a neighborhood night out event.  This is a new neighborhood for us, and my husband went to meet our new neighbors.  He was talking to someone who had children close to our children’s ages.  When he mentioned that our son is autistic, the person became uncomfortable and distanced herself.  It was clear to me that these people don’t want to deal with an autistic boy being friends with their kids.

Aaron has difficulty with group games, especially games that involve physical activity like running or throwing a ball.  He’s awkward and slow.  He has issues with his gait and with balance, so he doesn’t run as fast as other boys his age.  Due to issues with under-developed depth perception, he doesn’t throw and catch as well as his peers.  Team sports don’t work for him because he doesn’t pick up on social cues about what is happening in the game and each person’s role on the team.

His strange behavior also affects our daughter.  One day at church, after service, he decided he wanted to be a baby and started crawling around the sanctuary.  Our daughter burst into tears and exclaimed, “I don’t like when he acts that way.  I just want him to be normal.”  So do I, Sweetie, so do I.

Conclusion

All this to say that when you see a child acting out in a peculiar way, don’t assume that you know what is going on.  The best thing you can do is to give that parent the benefit of the doubt that they are doing the best they can.  Offer to help them with their bags while they wrestle their child into their car seat.  Whisper in their ear, “You’re doing a great job Mom/Dad.”  If you know this family, invite them to your home.  Spend time with them.  Get to know them.  Dare to allow your kids to play with them.

I grew up with a boy who has cerebral palsy.  I was horrified to hear the story his mother tells about taking him to a playground and other mothers scooping up their children to get away from him…like his condition was contagious.  This was the early 1970’s, and I would like to think that we’re more open and accepting of people with visible disabilities now.  Knowing this story, when I was with my daughter at a playground over the summer, there was another little girl there, who had cerebral palsy, with her mother.  She looked to be about the same age as my daughter.  The mother was holding her up and helping her play on the different equipment.  My daughter noticed this little girl, and I whispered to her, “Would you like to play with her?”  My daughter agreed, so we joined her.  The little girl’s face lit up when my daughter started playing with her, and my daughter talked about this experience for weeks afterward.

Aaron likes to write stories.  His stories follow a theme which reveals his greatest desire, which is to make friends and have adventures.  My prayer for him is that he would experience that.

 

One thought on “Opening the Curtains

  1. Thank you for sharing. I have known several autistic children over the years, and as an educator, I have strived to learn about various behaviors and how to deal with them. My oldest son, Philip, was diagnosed with ADHD when he was in the 1st grade. This was something hard to swallow at first. No parent wants to hear that there is something wrong or different about their child. It WAS quite a relief though, to finally understand that I was NOT a terrible parent! Before the Lord opened my eyes to what was really going on, I was riddled with guilt. I had tried everything I could to help my son. Nothing worked. I remember one day, when he was 5, I literally felt like packing a suitcase and running away!

    Of course this feeling just brought on more guilt, because a mother who loved her child would never want to run away from them because she couldn’t figure out what to do. I cried out to the Lord, and He heard me. Through two friends, and a show that just “happened” to be on the TV when I turned it on, He began to speak to me about ADHD.

    After testing and a diagnosis, we were matched with a family Dr./Counselor/Therapist. He put Philip on a small dose of something. I don’t remember the name right now, but I do know it was not Riddlin. I had heard horror stories about that! He also met with us, as a family, and helped us to understand what was happening with Philip, and how his perception and way of thinking was different then ours. He showed all of us ways to cope, and it lifted a heavy burden off of my shoulders.

    Philip was on medication for 2 years, and then he didn’t need it any more. We all learned so much from the experience. One of the things that we did was to enroll him in a Christian karate class that was taught by a couple in our church. This helped him to learn discipline and self control, which was something his Dr. had recommended. He really enjoyed this, and continued in the classes until they started sparring.

    We got him the pads and took him to class, but he soon started dragging his feet every time we mentioned it was time to go to karate. When we asked him why he didn’t want to go, he said that he didn’t want to hurt anyone. He didn’t like the sparring. His instructor tried to reason with him, but he wouldn’t budge, so we decided to let him stop. He had learned what he needed.

    Many of us struggle with things that others don’t know about. Symptoms or syndromes, etc. that you cannot see on the outside. Aaron’s is not so hidden. I think that is part of the issue sometimes. The world can ignore something that is hidden, or pretend it doesn’t exist. They don’t know how to handle something that is so obvious.

    I think you and Bruce are doing a wonderful job with Aaron. He is blessed, and so are you. God put you together as a family because He knew that you would do your very best to work with him, to love him, to understand him, and to train him up in the way he should go. He is a bright spark of light that is slowly but steadily growing into a blazing fire that will show God’s glory to those around him in his own unique and wonderful way. Keep trusting the Lord. You are in our prayers. We hope you all have a wonderful Christmas and a blessed 2016.

    Love,
    Priscilla

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