Three Steps Forward, One Step Back

One of the strangest, and often most confusing, things about autism spectrum disorders is the inconsistency of the illness in terms of behavior and speech.

Alec is downstairs right now working with a UNC-Charlotte student who is studying to be a play therapist. She's having a super day with him, and I can hear him asking her questions "What have you got?" "Can you help me?" He is speaking in sentences more often than not these days, but I can see in his expressions the struggle of forming each one.

On days like today, I can rest a bit. I can look and see his progress, and it's exciting! But, every several days or so, Alec will have a "bad day" and he'll seem to regress, losing all of the wonderful improvements he has made.

On those days, at first he'll become more irritable. He'll tantrum, something he used to do many times a day but now he only does once ever few days. His language will be garbled. He'll slip into what Matt and I refer to as "robo-talk". He'll spin, he'll be hyperactive, his eye contact will go.

Those days throw me off. It takes me some time to understand that it's a regression and that Alec is not just misbehaving. It's really hard to keep your finger on what is going on with him biomedically, since his diet (and infractions of it) seem to have such a dramatic effect on him.

Discipline is a hard thing, too. All four year olds misbehave and need redirection. On the days when he has regressed, it will seem at first as if he's just being difficult. Then suddenly, it will slap me in the face, the "a ha!" and I realize that he has eaten something he shouldn't have eaten, or a supplement is not quite right, or there is something I can't even begin to figure out throwing him off. So, it's very hard to know when Alec needs discipline and when he's simply frustrated because his clarity is gone. And believe me, I know that is what is going on with him because you can read it on his face. Maybe it's also the way a mother just knows. It's like Alec realizes that something he had, clarity, is suddenly gone and he's angry about it.

The other night Alec was have a very bad night while we were going through the bedtime routine. One of the "clues" I have found when Alec is having one of his bad days is that he will be more repetitive. The obsessive compulsive disorder part of autism becomes very apparent.

Alec was very upset because his sister Elise was on their potty. Matt and I tried to persuade him to go to our potty before going to bed. Normally, this would be no problem, but that night, it was everything to him. He wailed and cried at Elise to move. (Elise unfortunately was having her own potty problems, but that's way too much information for you!) I finally picked him up screaming and took him to our bathroom. He cried for a long while and would not go. Finally after what seemed like an eternity, he went, but very reluctantly.

However, when Elise finally got up, he insisted on going to the potty again in HIS own potty. I allowed him to do that and put him in bed. He cried and struggled with the words to tell me he wanted to go BACK to the potty again. Finally, exasperated, I just let him go back to his potty and have all the time he needed. When at last he allowed me to put him to bed, he was still crying quite a bit. You could see the frustration as he tried desperately to find the words to say something to me, but I couldn't understand what. It's incredibly frustrating when you can't understand your child when he so wants you to understand him.

At last, though, he calmed down enough and whimpered, "Mama, Mama, Mama, I'm, I'm, I'm" and he cried a bit more and then struggled with "I'm, I'm ss, ss, I'm sorry, Mama".

Alec has never told me he was sorry on his own, without prompting before. We both sat on his bed and cried. Here my little boy was telling me how sorry he was because he was being troublesome, when in fact, he couldn't help it.

So, I know he's frustrated on his bad days. I need to draw from God on those days to find more patience, and I always ask for the wisdom to know what Alec needs at any given moment. I pray that all of the time.

But today is a good day, and I will go and enjoy it with my son.

James 1: 4-6: Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.