Debbie's Perspective

Just my thoughts of the day.

I’m Not Supposed To

“I’m not supposed to……,” means my son with autism has done exactly what he is telling me he’s not supposed to do.  What he’s really saying is, “Oops, I’ve messed up again.  Will you forgive me?  Please help me.”

You see, he can’t seem to help himself.  He knows the rules, he can say the rules, he’s a stickler for others following the rules, but in the moment, he breaks the rules.  We have to help him.  We set up boundaries, we put things in place that stop him when he can’t stop himself, and we exact consequences when needed.

The other day when he had come to me for what seemed like the 50th time that day, I exasperatedly called out to the Lord asking why my child can’t obey the rules.  I know he isn’t trying to rebel.  He really does want to be obedient, but once again he isn’t.

Before I could get all of that out, I got a picture of the Lord in my mind with a twinkle in His eye and a chuckle in His response, “Hmmmm, I don’t know, Debbie, why would a child who knows the rule break it?”  Then scriptures about jealously, gossip, and anger danced before me.  “Could it be a desire to please self outweighs the desire to be obedient in that moment?”

Ouch! I had the distinct impression we weren’t talking about my son anymore, but about my “I’m not supposed to’s.”  How many times have I messed up, done exactly what I know I shouldn’t, but in the moment I just can’t seem to help myself.

Maybe my son knows something I don’t.  The minute he realizes he has been disobedient, he doesn’t run away from me, he runs to me; the rule maker, the one who can forgive him and help him find ways to avoid his lack of restraint.

So, I take a cue from my son and turn my heart to the Lord, “Father, I’m not supposed to…., will You forgive me, will you help me?”

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You Can’t Discipline Autism Out of a Child

Autism AwarenessI  don’t write this because of one particular incident, but for the many smaller incidents, comments, and attitudes over the years.

My son looks like the typical 8-year-old — two front teeth a little too big for his little-boy mouth, a sprinkle of freckles across his nose and a mischievous twinkle in his eye. He is active and bright, and, to the casual onlooker, he is just another little boy.

So when he darts away from me running for a door to open and close, or screams and cries as he pulls away from me trying to make it to a door he shouldn’t touch, he seems to be a defiant, out-of-control kid who needs some good discipline to make him stop.

There have been those over the years who have said, “Just don’t let him touch those doors and he will eventually learn that he can’t do it.” A clear sign that they have no idea of the driving force behind my son’s need to open and close doors.

I’ve tried to understand this need my son has for doors. Since his need to open and close them rises with his anxiety level, I often have wondered whether their constant sameness gives him some sort of comfort — an order to an otherwise out-of-order situation.

I think if I could ever really delve into his mind and truly understand, I might be awed by the complexity of it or laugh at the simplicity. All I know is that it is a need that goes so deep in him that I will never be able to punish or motivate it out of him. So it is left to me to continue day in and day out to teach and train him that there are doors he can touch and others that are off-limits — and hope that one day the logical part of his brain will override the reptilian part and he will gain at least a small amount of control in this.

He is making progress, even though it is slow.

The meltdowns stemming from the answer “no” do not come from a lack of being told no, as many would suspect. There have been comments along those lines — or those who have even stepped in and thought that their stern voice or ultimatum would somehow do the trick, leaving me to deal with the even greater or longer meltdown.

My son doesn’t want to lose control. In fact, he hates it. He is heartbroken afterward because of his actions during a meltdown. His driving need for order or comfort in his anxiety overwhelms him, and he finally breaks down.

No amount of discipline in the form of punishment is going to stop this. All I can do is continue to give him strategies and alternatives for times like this. Sometimes they work and sometimes they don’t. When they don’t, he has consequences to those actions.

Those who believe that he “just needs to learn to mind or just needs a firmer hand” have not lived the years with my son that I have. It shows their lack of understanding of a mind that could read at 2 but wasn’t toilet trained until 7. A mind that understands what you say to him but has difficulty communicating back with language.

They have no knowledge of senses that are messed up so that normal sounds like water running in the sink can be very painful to his ears but some loud siren might not even make him flinch, as if he were deaf. A gentle touch could hurt where a firm touch could be comforting.

They are unaware of an anxiety level that is always there, controlled on the surface but ready to break through when there is too much movement, noise or change. They have no true understanding of how that breakthrough looks like a defiant child but is merely a child no longer able to win his hard-fought battle.

I have to keep my eyes on the goal: my child’s life. I can’t let others’ judgments or opinions of my parenting veer me from my course. My job is to continue to try to understand my son and try to see the world through his eyes so I can teach and train him to somehow fit into our world the best he can, at least as far as acceptable social behavior is concerned.

I will not frustrate him more and put even harder burdens on him than he already bears just for the appeasement of those who don’t understand. Thankfully he has many people around him who feel the way I do and understand that you can’t discipline autism out of a child.

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