“Hi, I’m Sarah, this is my son Josh and we will be annoying you today.”
There was a time when I wanted to make this announcement any time I left the house with Josh. I refer to this period in Josh’s life as the “dark side” – essentially the years of his worst behavioral/emotional
issues thus far.
We’ve all been there as parents and if you haven’t yet, you probably will: the joys of enduring your child’s melt-down, out-burst, tantrum, whatever you want to call it, in public. Toddlers are fabulous at this. Be it in a store, restaurant, plane, entertainment venue of some sort, no place is sacred, it’s all fair game. So most of you understand what it is like to be the subject of the negative attention this brings, the object of the judgmental scrutiny of others. And we all do that too – judge people in these situations. Even if you’ve been through it yourself, I’d be willing to bet that there have been times when you have encountered others in this situation and made some sort of judgement about the parent(s) and or child. I know I have, even though of all people, I know I shouldn’t.
With Josh however, as with most things because of his issues, this was taken to an extreme. From the time that he was about 20 months until he was close to 7 years old, it was pretty much a given that he would tantrum at some point when I would be out with him, no matter where we were going. Joshua’s tantrums were brutal, and I mean that literally as well as figuratively. Not only would he scream, a very high-pitched, ultra-annoying sound, but he hit himself. He would take his little hands, and either open or closed fisted would slap his ears from behind (back to front, as opposed to just clapping his hands to his head). Doing this over and over and over would result in raw, bloody skin on the backs of his ears. He would do this at school too. I remember getting a phone call from the school one day asking me to come and get him because he had been tantrumming so much that his ears were dripping blood and the staff were concerned about the safety of the other children and themselves… meaning they were worried about blood-born diseases. I assured them that he did not have AIDS or Hepatitis B, but picked him up anyway. I also remember being told several times that his classroom staff had been asked by the principal to remove him from the classroom and take him to one of the portable buildings that was not being used, because he was too disruptive to the rest of the school when he would scream for so long. My 3-4 year old had to be REMOVED from the school. I’m pretty sure this kind of stuff was not in my instruction manual…
It got to the point where we had to do something. I think the breaking point for me was one summer afternoon – and this was at home, not even out anywhere – Josh had been screaming for 3 hours straight. Nothing I did seemed to help. I didn’t know what to do to help my son, and I remember sitting against the wall of the family room crying. Zach who was all of 6 or so at the time, came to me with his two little neighbor friends to give me a hug and ask if they could help. We talked to Josh’s doctor at length and ultimately decided to try a medication that did not have any scientific proof for its use in these situations, but there was so much anecdotal evidence we had to give it a shot. So we started him on Celexa, some of you might know that this is an anti-anxiety/anti-depressant drug on the market for adults. Science or no science, within 2 days of starting him on it he stopped hitting his ears. Just stopped. The tantrums and screaming were still there, but he was no longer hurting himself. I can’t tell you the blessing that was and is to this day.
The tantrums persisted though. I could not get through a trip to the grocery store without his screaming at some point. We didn’t travel with him, it was too much of a risk, I had visions of un-scheduled landings and air-marshals escorting us off in the middle of nowhere. Going out to eat was always hit-or-miss. He wanted to do it, nothing better than people serving you fries, but it was unbelievably stressful. Wherever we went they had to be fast, and I had to have every method of counter-tantrum tactics at my disposal: portable DVD player, every DVD, books, treats that he likes a lot but doesn’t usually get like certain candy, his water in the appropriate drinking container, you name it. And even then there were many times we just had to leave because he would start up and we didn’t want to disturb everyone else in the restaurant. It was the day-to-day errands though, that were really the worst for me. The family needs food, other things, I have to go out, but it was always at the expense of my self-worth as a parent. The looks you get from other people when your child is acting out or extremely upset are harsh, to say the least. One of the things that hit me through the course of all this was, he doesn’t look like there is anything wrong with him. Autism is like the invisible disability, you don’t see it until you interact with an affected child or adult. On the surface, he looks like a regular kid. So to others, it just looks like a badly behaved child and a mother with poor parenting skills. There were certain stores I would go to regularly as we all do. I would start to get looks from some of the staff in these places like “oh great it’s that woman with the screaming kid again”. That’s me. His father would jokingly suggest I wear a t-shirt that had an arrow pointing to Josh saying “he’s autistic”. It probably would have helped.
One of the worst moments – mind you there is a good list of those, but there are certain stand-outs among them – I can tell you about occurred at a grocery store I had been going to regularly. The staff at this particular store seemed more understanding than most and a number of the cashiers knew about his issues from talking to me. One afternoon I was there with Josh, Zach was at a birthday party so it was just the two of us. Josh started screaming, as usual, and so I tried to hurry up with what I needed to get. He’d been screaming for a couple of aisle walk downs, and I got to about the third after he’d started and this woman in the aisle approached me and said “you know, you should leave.” I was stunned. I told her I was sorry, but that Josh was autistic and he couldn’t help what he was doing. Again “I don’t care, you really should leave, you are bothering everyone in the store. ” Ouch. Never in my life had I ever been told or asked to leave anything, anywhere, for any reason, even with Josh. I could really hardly believe anyone would be so insensitive especially when I had explained it to her. I always knew it bothered people, I even knew that a lot of them probably felt the same way this woman did. But that someone would have the nerve to do what she did to this day shocks me. I teared up and told her I thought she was the most insensitive person I had ever encountered and she came back with “YOU are being insensitive to everyone else here, just leave!” Wow… just wow. I started to cry, and walked away. I did finish my shopping but I have never felt so awful as I did then. Was she right? Of course everyone told me I should have followed her around the store just to annoy the hell out of her and that sounds like a great way to come back at someone like that, unless you are the one in that situation. I was shocked, sad, embarrassed, guilty, angry – it’s hard to sort that all out, especially when the little toad was still screaming.
There was one time that stands in contrast to that though, so it deserves to be mentioned. One summer I had taken the boys to visit my dad who lives on Vancouver Island. You have to take a ferry to get there, and the ferry part of the trip alone is about an hour and a half long. The way up had been pretty uneventful. The way back, however, was not. It was an early trip, since we still had to drive for a few hours after getting off the boat to get home. Zach and I needed breakfast so we went to the cafeteria to get some food. Josh started screaming. Can’t get off a ferry, and I didn’t want to force Zach to go hungry because his brother was acting up. So, I stuck it out with him in the cafeteria. I learned to stop paying attention to all the looks so I was just focused on the kids, doing what little I could to try to get Josh out of his funk. A woman who was seated at a table with some other people not far from us came over. She asked if there was anything she could do to help me… said she and her family thought maybe they could take Josh out for a walk or something so Zach and I could eat. I explained the situation and thanked her very much for the offer but had to decline given Josh’s issues. She told me if there was anything they could do to help to let her know. Probably one of the nicest things anyone I don’t know has ever done for me. So it wasn’t always a matter of being judged harshly by others, but this was the one and only time that anyone has ever taken the time to be kind to me about it.
Over the last few years, the outbursts have decreased in the public setting significantly. So much so that we did fly to go to Disney a few times, mind you that’s DisneyLAND, not World, since it’s only a 2 hr 45 min flight vs 5 hrs and we give him a very, very, tiny dose of Valium before flying. Doesn’t knock him out, but it does keep him quite calm for a couple of hours. Home and school are a different story, but I can take him to the store these days without outbursts, which is wonderful. We can go out to eat and as long as I have what he needs to keep him happy and it’s usually ok, though there are still occasional times when he just can’t manage it for whatever reason and we have to leave. But it’s nothing like it was. I am grateful for this every day. There are still many challenges to face with him daily, but at least this is not the nightmare it used to be.
Next time you are out somewhere, anywhere, and there is an unhappy child and a frazzled mother, please don’t be too quick to judge – you never know what might really be behind the all the noise.