Marguerite
Active Member
I was just talking over today with husband and sometimes a second point of view can give you more insight. Bear with me, I'm thinking as I type this, my conclusions are changing form minute to minute. I'm looking for thoughts, ideas, anything I can take form this and use to help difficult child 3.
To set the scene - today was difficult child 3's school presentation day, the end of year event. It's a week until the last day of the school year. This year they chose to have the event NOT at the school itself, but in a central building in the heart of Sydney's CBD. The school building is multi-purpose (so acoustics are makeshift) and also too small.
difficult child 3 is doing really well in a lot of ways, but is still obviously autistic (obvious to me, anyway). Catching the train - we've done this a few times lately and he's getting better at coping. He's NEVER too happy about being away from home, he can get increasingly anxious and only getting back home can help. So on the train - I usually want him to do some worksheets while we travel, but I'm noticing that he refuses to get his work out until some undefined time into the trip. I remembered how he told his psychologist that when travelling, he likes to look at the scenery. On Tuesday when we went into the city, difficult child 3 did this; then after about ten minutes (just after we passed the river) he opened up his case and got out his work.
And again this morning - "I will do my work, just not yet." He then sat and looked out the window, so I said, "OK, I will wait until we have passed the river." He looked surprised, but I think he was happy with this.
He did a complex maths problem but only wrote the answer. I knew he had to show working and to me it looked like he had to do it again, properly. By the time I realised (after talking him through how to do it - I didn't need to, it turned out) I discovered that he had done a complex problem IN HIS HEAD instead of showing working (so no wonder he's taking too long to do the work and says it's too hard!) and he also said, "I have a headache now; I can't think, you've made my head spin."
The train by this stage was VERY crowded, I think it was aggravating things too.
I let him put his work away because we had already agreed that it would be time to put the work away as we left the station two before the one where we needed to change trains, and we were almost there.
Then we got to the station where we had agreed to change (there are several options; we'd tried to choose the easiest one for mother in law) and difficult child 3 again began to fuss. "We need to find out which platform to go to; we need to go downstairs; we need to find the lift. We need..." over and over. Turned out we only had to walk the width of the platform to the other side. difficult child 3 was making so much noise another traveller pointed this out to us.
We got to the final station (the same one we used on Tuesday's outing to the Opera House). difficult child 3 started to panic again. "We don't know where we are going. How will we know how to get there?" He saw a classmate and briefly said hello before the classmate was called away by his mother (who hadn't seen us) in a different direction (found out later, they were lost). This upset him more, made him doubt us even more. I brandished a map the school had posted, plus husband (who met us at the station) had already worked out the best route and headed us there.
Once we got there, difficult child 3 was getting anxious about the elevator and whether there were too many people in it. Then there was the time it took to get the elevator loaded, which made difficult child 3 anxious that the door open alarm would begin to sound.
The check-in procedure was familiar to him; the school uses the same procedure for the larger special school days - the kids sign in, get name tags and anything else they need. Permission slips get signed etc.
He sat quietly and paid attention throughout - this is new and a really positive thing. Mind you, having difficult child 1 call/text my mobile upset him (difficult child 1 was in a car accident this morning, due to the rain - I needed to talk him through stuff). I managed to juggle seeing difficult child 3's awards and still talk to difficult child 1 on the phone.
difficult child 3 went to collect his award on stage. The teacher organising the packages was distracted and difficult child 3's was missing; they did a quick substitution for the look of it and he came back with a folder that was empty apart from a note saying, "sorry we didn't have your papers for you. Please see Mrs ... afterwards. If she still can't find them we will post them to you." A teacher also came back with him to quietly explain this to us, making sure that difficult child 3 wasn't upset by the glitch.
After the whole event, the teachers filed out past us. The principal came up last. Because I've been at the school for some meetings over the last fortnight, the principal has got to know us fairly well. He stopped briefly to say hello to difficult child 3 who looked blankly. "I'm Matthew," the principal said.
"Hello, Matthew," difficult child 3 answered, but still blank.
"It's only your principal," I said, gently teasing.
"Oh, okay," said difficult child 3. "You can help me - I need to get my presentation papers and report, I have to find Mrs ..., you can take me to her."
husband was too far to hear but did notice the look on the principal's face - shock, surprise and then acceptance.
"Sure, I'll help you," he began, even though it's maybe the busiest day of the school year for him.
I was able to step in though, to say to both of them, "It's OK, I'll help. difficult child 3, Matthew is very busy today, I can help you find Mrs ..."
I noticed as we made our way to the corner where Mrs ... was managing boxes of files, that we passed a few teachers that difficult child 3 knows really well. He didn't seem to recognise anybody. The classmate from before (at the station) came up - a classmate with a distinctive face - and difficult child 3 recognised him (or at least responded as if he had). Other classmates greeted him and he didn't remember them; to me it seemed like he tried to cover for this. The classmate from before came over to talk again, his girlfriend (another classmate) was also chatting to difficult child 3.
We got the papers without incident, difficult child 3 talked to a few people, we stayed until the place began to empty and teachers began to pack things up to take them back to the school. difficult child 3 said goodbye to his two classmates and then as we headed to the elevator, began to worry even more than before. It was really over the top and loud. By this stage it was almost all teachers, they either know him or know about him. difficult child 3 was organising people onto the elevator. I recall he DID address two teachers by name, asking them if they wanted to get onto the elevator or wait. Then difficult child 3 was holding the doors open, pressing the button for the ground floor - he HAD to be in control of it all.
Downstairs we discovered it was pouring outside. difficult child 3 just wanted to go out into it to get back to the train and head home. However, in his suitcase he had his electronic games (as well as schoolwork). We had the conflicting drives of "I want to get home" and "I want to keep my electrical things safe from the rain."
So difficult child 3 insisted he was going ahead to the station on his own, even though he was still a little uncertain of the way. mother in law & I are much slower (husband had left earlier, had to make his own way back to work). So again, a source of anxiety. We would find difficult child 3 ahead of us waiting under whatever shelter he had reached. He was sheltering, then moving ahead, keeping us in sight but also moving to the train station, also in sight.
At the station there was a bit of delay while I worked out which way to go. difficult child 3 was getting increasingly anxious with every train that he heard coming into the station.
We finally got onto a train; it was awash (windows had been left open during a downpour). difficult child 3 got anxious about the water, the risk of mother in law slipping over and also us getting wet.
The train was going on a line we've not been on before, but mother in law & I know our way around well enough to not have a problem. It's a new line linking two older ones. difficult child 3 again was in a new environment, he needed to know exactly what station would be next and what order they all were in.
We finally got to the change point - we had to use an elevator again. And again, difficult child 3 was in a panic over the possibility of alarms going off because of the door being left open for too long. He was worrying about the elevators adjusting the floor level slightly; he was worrying about every little noise or movement; worrying even about the possibility of it.
Once we were back on the familiar train line, difficult child 3 was wanting to get out of his seat and stand by the door. He was in "pacing" mode by this time. He was trying to explore every bit of trash stuffed into nooks and crannies (which he does obsessively in many situations). I wouldn't let him out of his seat (the carriage foyer was crowded with schoolkids, I worry about difficult child 3 left in that social environment for too long, unsupervised) so he did a deal, said he would go stand there when the train pulled out of the station before ours. Which he did.
We got back to our station. Still raining. difficult child 3 made sure we got safely to street level via the elevator then said, "I'm going back to the car as quickly as possible."
Which he did - he has his own key for getting in.
Back in the car, difficult child 3 was visibly calmer already. He began to mention that he was hungry. I had some errands to run, which we did; difficult child 3 helped, seemed OK with it. I gave him money to buy food for us which he did with no problem.
We got back home, difficult child 3 slipped into his familiar routine, he did a few chores without argument.
So I look back - difficult child 3 was getting increasingly anxious today. It was a crowded, noisy event in an unfamiliar place. There were still a lot of familiar faces there, most of whom difficult child 3 didn't seem to recognise. The focusses of his anxiety were:
being away from familiar surroundings
elevators, especially their safe operation
other safety issues
Despite having made a lot of progress socially, he showed poor face recognition (aggravated by the unfamiliar surroundings) and although his classmate commented on how much more relaxed he seemed with him in conversation, difficult child 3 seemed to me to be covering for his social deficits, less able to stay 'on task' in a conversation (noisy room, highly distractible) and more anxious in general. HIs anxiety was showing up not so much as extreme panic, as in perseverative behaviour, obsessing about safety issues especially the elevators and organising other people (regardless of rank) to meet his needs in this. His increasing restlessness was showing up physically in his need to stand, to pace, to fidget, to go digging into crevices for whatever junk he could find (marbles, stones, sticks etc). He also didn't begin to express any need for food until he was well and truly back on familiar ground.
We have an appointment with the pediatrician on Tuesday. I think we need to mention a few things:
1) Face blindness, especially when people are even partly out of context, or there is a highly distracting environment;
2) Anxiety often heightening the longer a novel/challenging environment continues, yet he is making efforts to mask this, it's not always apparent;
3) Obsessions about safety especially plus increasing desire to be on familiar ground close to home;
4) Still rapidly gets into patterns of behaviour and habits (such as not starting his work until after we crossed the river);
5) Still doesn't distinguish socially between people of different rank (such as expecting the principal to drop everything and take him to the teacher who was handling the paperwork);
6) When anxious/obsessing about things, won't consider any need for food.
IS there anything I've missed that you can see in this?
All ideas welcome.
Marg
To set the scene - today was difficult child 3's school presentation day, the end of year event. It's a week until the last day of the school year. This year they chose to have the event NOT at the school itself, but in a central building in the heart of Sydney's CBD. The school building is multi-purpose (so acoustics are makeshift) and also too small.
difficult child 3 is doing really well in a lot of ways, but is still obviously autistic (obvious to me, anyway). Catching the train - we've done this a few times lately and he's getting better at coping. He's NEVER too happy about being away from home, he can get increasingly anxious and only getting back home can help. So on the train - I usually want him to do some worksheets while we travel, but I'm noticing that he refuses to get his work out until some undefined time into the trip. I remembered how he told his psychologist that when travelling, he likes to look at the scenery. On Tuesday when we went into the city, difficult child 3 did this; then after about ten minutes (just after we passed the river) he opened up his case and got out his work.
And again this morning - "I will do my work, just not yet." He then sat and looked out the window, so I said, "OK, I will wait until we have passed the river." He looked surprised, but I think he was happy with this.
He did a complex maths problem but only wrote the answer. I knew he had to show working and to me it looked like he had to do it again, properly. By the time I realised (after talking him through how to do it - I didn't need to, it turned out) I discovered that he had done a complex problem IN HIS HEAD instead of showing working (so no wonder he's taking too long to do the work and says it's too hard!) and he also said, "I have a headache now; I can't think, you've made my head spin."
The train by this stage was VERY crowded, I think it was aggravating things too.
I let him put his work away because we had already agreed that it would be time to put the work away as we left the station two before the one where we needed to change trains, and we were almost there.
Then we got to the station where we had agreed to change (there are several options; we'd tried to choose the easiest one for mother in law) and difficult child 3 again began to fuss. "We need to find out which platform to go to; we need to go downstairs; we need to find the lift. We need..." over and over. Turned out we only had to walk the width of the platform to the other side. difficult child 3 was making so much noise another traveller pointed this out to us.
We got to the final station (the same one we used on Tuesday's outing to the Opera House). difficult child 3 started to panic again. "We don't know where we are going. How will we know how to get there?" He saw a classmate and briefly said hello before the classmate was called away by his mother (who hadn't seen us) in a different direction (found out later, they were lost). This upset him more, made him doubt us even more. I brandished a map the school had posted, plus husband (who met us at the station) had already worked out the best route and headed us there.
Once we got there, difficult child 3 was getting anxious about the elevator and whether there were too many people in it. Then there was the time it took to get the elevator loaded, which made difficult child 3 anxious that the door open alarm would begin to sound.
The check-in procedure was familiar to him; the school uses the same procedure for the larger special school days - the kids sign in, get name tags and anything else they need. Permission slips get signed etc.
He sat quietly and paid attention throughout - this is new and a really positive thing. Mind you, having difficult child 1 call/text my mobile upset him (difficult child 1 was in a car accident this morning, due to the rain - I needed to talk him through stuff). I managed to juggle seeing difficult child 3's awards and still talk to difficult child 1 on the phone.
difficult child 3 went to collect his award on stage. The teacher organising the packages was distracted and difficult child 3's was missing; they did a quick substitution for the look of it and he came back with a folder that was empty apart from a note saying, "sorry we didn't have your papers for you. Please see Mrs ... afterwards. If she still can't find them we will post them to you." A teacher also came back with him to quietly explain this to us, making sure that difficult child 3 wasn't upset by the glitch.
After the whole event, the teachers filed out past us. The principal came up last. Because I've been at the school for some meetings over the last fortnight, the principal has got to know us fairly well. He stopped briefly to say hello to difficult child 3 who looked blankly. "I'm Matthew," the principal said.
"Hello, Matthew," difficult child 3 answered, but still blank.
"It's only your principal," I said, gently teasing.
"Oh, okay," said difficult child 3. "You can help me - I need to get my presentation papers and report, I have to find Mrs ..., you can take me to her."
husband was too far to hear but did notice the look on the principal's face - shock, surprise and then acceptance.
"Sure, I'll help you," he began, even though it's maybe the busiest day of the school year for him.
I was able to step in though, to say to both of them, "It's OK, I'll help. difficult child 3, Matthew is very busy today, I can help you find Mrs ..."
I noticed as we made our way to the corner where Mrs ... was managing boxes of files, that we passed a few teachers that difficult child 3 knows really well. He didn't seem to recognise anybody. The classmate from before (at the station) came up - a classmate with a distinctive face - and difficult child 3 recognised him (or at least responded as if he had). Other classmates greeted him and he didn't remember them; to me it seemed like he tried to cover for this. The classmate from before came over to talk again, his girlfriend (another classmate) was also chatting to difficult child 3.
We got the papers without incident, difficult child 3 talked to a few people, we stayed until the place began to empty and teachers began to pack things up to take them back to the school. difficult child 3 said goodbye to his two classmates and then as we headed to the elevator, began to worry even more than before. It was really over the top and loud. By this stage it was almost all teachers, they either know him or know about him. difficult child 3 was organising people onto the elevator. I recall he DID address two teachers by name, asking them if they wanted to get onto the elevator or wait. Then difficult child 3 was holding the doors open, pressing the button for the ground floor - he HAD to be in control of it all.
Downstairs we discovered it was pouring outside. difficult child 3 just wanted to go out into it to get back to the train and head home. However, in his suitcase he had his electronic games (as well as schoolwork). We had the conflicting drives of "I want to get home" and "I want to keep my electrical things safe from the rain."
So difficult child 3 insisted he was going ahead to the station on his own, even though he was still a little uncertain of the way. mother in law & I are much slower (husband had left earlier, had to make his own way back to work). So again, a source of anxiety. We would find difficult child 3 ahead of us waiting under whatever shelter he had reached. He was sheltering, then moving ahead, keeping us in sight but also moving to the train station, also in sight.
At the station there was a bit of delay while I worked out which way to go. difficult child 3 was getting increasingly anxious with every train that he heard coming into the station.
We finally got onto a train; it was awash (windows had been left open during a downpour). difficult child 3 got anxious about the water, the risk of mother in law slipping over and also us getting wet.
The train was going on a line we've not been on before, but mother in law & I know our way around well enough to not have a problem. It's a new line linking two older ones. difficult child 3 again was in a new environment, he needed to know exactly what station would be next and what order they all were in.
We finally got to the change point - we had to use an elevator again. And again, difficult child 3 was in a panic over the possibility of alarms going off because of the door being left open for too long. He was worrying about the elevators adjusting the floor level slightly; he was worrying about every little noise or movement; worrying even about the possibility of it.
Once we were back on the familiar train line, difficult child 3 was wanting to get out of his seat and stand by the door. He was in "pacing" mode by this time. He was trying to explore every bit of trash stuffed into nooks and crannies (which he does obsessively in many situations). I wouldn't let him out of his seat (the carriage foyer was crowded with schoolkids, I worry about difficult child 3 left in that social environment for too long, unsupervised) so he did a deal, said he would go stand there when the train pulled out of the station before ours. Which he did.
We got back to our station. Still raining. difficult child 3 made sure we got safely to street level via the elevator then said, "I'm going back to the car as quickly as possible."
Which he did - he has his own key for getting in.
Back in the car, difficult child 3 was visibly calmer already. He began to mention that he was hungry. I had some errands to run, which we did; difficult child 3 helped, seemed OK with it. I gave him money to buy food for us which he did with no problem.
We got back home, difficult child 3 slipped into his familiar routine, he did a few chores without argument.
So I look back - difficult child 3 was getting increasingly anxious today. It was a crowded, noisy event in an unfamiliar place. There were still a lot of familiar faces there, most of whom difficult child 3 didn't seem to recognise. The focusses of his anxiety were:
being away from familiar surroundings
elevators, especially their safe operation
other safety issues
Despite having made a lot of progress socially, he showed poor face recognition (aggravated by the unfamiliar surroundings) and although his classmate commented on how much more relaxed he seemed with him in conversation, difficult child 3 seemed to me to be covering for his social deficits, less able to stay 'on task' in a conversation (noisy room, highly distractible) and more anxious in general. HIs anxiety was showing up not so much as extreme panic, as in perseverative behaviour, obsessing about safety issues especially the elevators and organising other people (regardless of rank) to meet his needs in this. His increasing restlessness was showing up physically in his need to stand, to pace, to fidget, to go digging into crevices for whatever junk he could find (marbles, stones, sticks etc). He also didn't begin to express any need for food until he was well and truly back on familiar ground.
We have an appointment with the pediatrician on Tuesday. I think we need to mention a few things:
1) Face blindness, especially when people are even partly out of context, or there is a highly distracting environment;
2) Anxiety often heightening the longer a novel/challenging environment continues, yet he is making efforts to mask this, it's not always apparent;
3) Obsessions about safety especially plus increasing desire to be on familiar ground close to home;
4) Still rapidly gets into patterns of behaviour and habits (such as not starting his work until after we crossed the river);
5) Still doesn't distinguish socially between people of different rank (such as expecting the principal to drop everything and take him to the teacher who was handling the paperwork);
6) When anxious/obsessing about things, won't consider any need for food.
IS there anything I've missed that you can see in this?
All ideas welcome.
Marg