This past Sunday Zach had a bad night. Zach walked into my room around 1:30 am slammed the door and headed to the master bathroom. Still groggy I let him go without really questioning it. About 10 minutes later he came out and handed me the saline eye drops. We have used these in the past when he rubs his eyes too much or has something on his hand and rubs them. So, I took him back to the bathroom had him sit while I put some drops in. I didn’t see anything wrong with his eyes. However, I got him a cool compress and took him back to bed.
The whole time I was trying to talk to him, to get answers as to what was wrong, however, because he has autism and words can be hard for him, especially when he is hurting or stressed. He couldn’t tell me what was wrong.
While he has been talking for a while now when he is upset he often loses his ability to speak. I stayed with him until he settled and went back to bed. Just as I was dozing off again he came back. “Thump, thump, thump.” he came down the stairs then slam went the door again. Back to the bathroom. This time, I followed, worried he would wake dad who had an early meeting the next morning. Now he could tell me which eye hurt by pointing, one more drop, refreshed the compress and took him to bed. Again I stayed with him till he relaxed then fell back in bed.
3 am he was back. “Thump, thump, thump.” he came down the stairs then slam went the door again. Thankfully his dad is a sound sleeper. This time, I got to look at his eye better, it wasn’t even red but he insisted it hurt, so I got him in a shower. I am pretty sure I feel asleep standing in the bathroom at least twice. Before I gave up and went to sit on the bed. He called when he was done with the shower and I helped him dry, dress and sent him back to bed. 30 minutes later he came back and fell asleep on the floor of my room with his blanket. The next morning he woke with dad’s alarm, alert and as refreshed as if he had slept all night. With no sign of any eye issues, except the deep circles under his eyes from lack of sleep. I am sure that I looked like death and I know for a fact I fell asleep for a few minutes at last 3 times, despite excessive amounts of coffee.
I am so glad we don’t have nights like this often, anymore. There were many nights when he would wake up wanting attention, or just to go play. There were too many nights when he wanted to just get out of the house. Those years I learned to sleep lightly, thankfully that he is about as graceful as I am and ten times louder. Now, he no longer tries to walk out in the night. Instead of worrying he will leave, the second fear I have crept into my head instead.
Regression scares me almost as much as elopement did. With regression comes the loss of his voice, the voice we both have worked so very hard to find. He has had a couple of regressions in the past. I find it strange that every time I had no idea what triggered them. Almost every other behavior I can find a cause or trigger for. I have spent countless hours trying to remember what was happening, what could have caused these to no avail. I wish I knew why then maybe, the fear every time something changes wouldn’t pop into my mind. The little voice that asks “Is he just ____ or is the another regression?” any time his behavior changes. I could maybe, head these off so it would never be a worry again. I could stop the panic attacks anytime he has a loss of ability or words even for a short time. To kill that little voice asking “Will this be another regression? Will I lose him again and have to help him fight his way back into our world?”
Each regression was different, he would lose words or abilities. His worst regression was the first, not because he lost more but because it was so scary, for all of us. It was a huge shock to go from a little boy who babbled to one who just cried and pointed. From using a fork and spoon to eat to only using his hands again. While he never liked being touched, when he started this regression, it was like you were hurting him just holding his hand or patting his back.
I was so frightened and the doctor couldn’t tell me anything, he didn’t see it, he just kept telling me all kids were different. Zach was not quite a year old so his “skills being a little behind” was “nothing to worry about” in his doctor’s eyes. Also, this was 12 years ago. The ability to get an autism diagnosis was, especially at that age, much harder. I get it, but I wish he had listened. I wish I had pushed harder, but as they say, hindsight is 20/20.
Thankfully events of this week don’t seem to have started a regression. He was fine all the next day up until about 2 hours before bedtime, then the lack of sleep started to show. He became grumpy and rude, but wouldn’t go to bed because it wasn’t “10:30 O’clock”. Then he fell into bed and slept until I woke him the next morning, which is unusual for him but I am guessing he really needed the sleep. He has been grumpy, with dark circles under his beautiful brown eyes, but is still talking and eating and doing all the things we fought so hard for. For today, I hope this is not a new form of regression, an emotional one, but we will see. I know how strong he is. No matter what happens we will get through it, Together. Until then pass the coffee, make it strong, because this momma is too damn old for pulling an all-nighter.
This week’s comic –