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ok. this is a weird one but - my kids seem to get MORE autistic over the school holidays!

(39 Posts)
hecate Thu 04-Sep-08 20:15:49

I don't get it. hmm

The random yelling gets steadily worse, the echolalia, the flapping, the in-my-facness, even the sleeping gets worse, everything, by the end of the holidays I am frazzled and I've had enough and am practically camping outside the bloody school! (They go back on Tuesday thank GOD)

So the school gets them back and they can't do anything with them for weeks, then they slowly calm down and get back to themselves, both at school and at home, and are much more 'normal'. - At the moment they are screeching, flapping, chanting, pulling, weirdos (I'm allowed wink)

I worry what the school must THINK of us when we return these feral kids to them blush and I also think what am I doing so badly wrong that school can do something I can't. - ie make them calmer and more 'normal'

Do any of you know what I mean?

hecate Thu 04-Sep-08 20:24:54

my search of messages for the last calender month returned more that 500. I may need to refine it. blush

I may need to get a frigging life!

hecate Thu 04-Sep-08 20:26:41

hahaha! well clearly that was meant for another thread! blush

twocutedarlings Thu 04-Sep-08 20:39:27

Hi hecate,

Im right in saying your boys are in M/S ?

Do you think it because they spent less time with NT kids in the holidays?

dont beat yourself up about how many posts you make, its probably what kept you going over the hols grin.

beakysmum Thu 04-Sep-08 20:41:27

lol at your multiple posts on this thread!

But re your opening question, is it to do with days being generally less predicatable for all children over summer hols than when they are at school? Or maybe I am on completely the wrong track.......

I know timetables (picture/ photo / written) can really help. Do your children use these at school or home?

And I think all children are a little wild by the time September arrives, not just SN! Here's to the reurn to school smile

coppertop Thu 04-Sep-08 20:48:03

I've come to the conclusion that at the end of summer term the school locks away my two boys and send home clones with the autism dial turned up to maximum.

Ds2 turns into Tigger-on-blue-smarties and can't stay still for more than 2 seconds. Ds1 turns into a flapping, shrieking toddler/teenager hybrid.

Sleep goes out of the window along with my sanity. Not even St Melatonin seems to be able to make a difference.

On the first day back at school we were waiting outside even before the gates had opened. blush

hecate Thu 04-Sep-08 20:49:38

Yes, they are in mainstream, with full time 1:1 support. Not being with their peers (and their LSAs on their backs!!) for 7 weeks could be contributing now you mention it. Certainly ds1 does try to 'fit in', but ds2 doesn't appear to take any notice of anyone, so I wonder if he would be affected? I don't know.

Could also be an element of lack of routine. Yes, they use timetables at school, we don't tend to use them at home any more, not now they can understand speech, we usually tell them and count down, and verbally prepare them, but if we see they are struggling, or not understanding, we do drag the old timetable out! grin Or I do one of my stories or draw a picture (got to see them to believe them. I am no artist! blush)

I just can't help feeling that the school can get more 'normal' behaviour from them than we can and does that mean we are failing them - or does it mean that we are doing a good job by allowing them to be themselves, instead of constantly prodding at them to act as NT as possible and be fake, iyswim.

anonandlikeit Thu 04-Sep-08 21:17:17

ds2 is the same during holidays, for him it is def the lack of structure to the day that he struggles to cope with.
Remove the structure & he replaces it with asd type behaviours, they are a comfort to him, we have removed some of the structure that helps him understand the world so the more in your face asd type behaviours resurface.

I did go through a faze of thinking i was failing him by not building enough routine into the hols but i've come to the conclusion we all need a break & if him staying in his pj's until lunchtime means he is licking the windows , so what! His psych actually said it is a good thing to constantly push his comfort zone as the real world isn't so routine & the more we allow his world to be controlled by structure & routine the more he will depend on it.

Not sure if she was talking bo**ox & just trying to make me feel better or not!

siblingrivalry Thu 04-Sep-08 21:18:53

You are not alone in your thinking, Hecate.
The last couple of weeks with dd1 (pre ASD dx) have been absolutely awful. She is spending a massive amount of time running in circles/back and forth, hand flapping and humming to herself.
I have put it down to her needing the stricter routine of school, but who knows for sure? We had a looooong monologue conversation tonight about why she doesn't want to go back to school.hmm

You are on the home-straight now... hang on in there!

jimjamshaslefttheyurt Thu 04-Sep-08 21:24:31

DS1 gets worse over the holidays. It's because he can't tolerate being inside all day. But without help I can't go out with him. And I didn't have much help this year.

He came home much calmer than he's been for weeks yesterday.

twocutedarlings Thu 04-Sep-08 21:26:30

of corse your not failing them!!!!!

personally i think if they only have each other to bounce off then they will be more spectrummy grin . I always allow my DD to be herself at home, i think it does her confidence the world of good smile.

daisy5678 Thu 04-Sep-08 21:30:40

My J just seems to be getting plain more autistic every day, school or not sad

but I think there's something in what you said in allowing them to be themselves at home, whereas at school there's the pressure to conform. J finds that highly stressful and then reverts to pacing and whirling when he can: at home.

daisy5678 Thu 04-Sep-08 21:31:26

My J just seems to be getting plain more autistic every day, school or not sad

but I think there's something in what you said in allowing them to be themselves at home, whereas at school there's the pressure to conform. J finds that highly stressful and then reverts to pacing and whirling when he can: at home.

allytjd Thu 04-Sep-08 21:51:06

Mine get worse if they are bored, DS1 gets in his brothers' faces and winds them up for entertainment and Ds2 spends a lot of time running up and down the house wiggling a toy and making shooting noises. DS3 copies them. The noise levels are horrendous, good job downstairs neighbour is very deaf. It is difficult keeping the different ages safely occupied away from each other, little one spoils big ones games and vice versa. DS1 is definitely a nicer boy when at school and this year (for the first time ever(year4))DS2 is also more chilled since the beginning of term. Its only been 3 weeks but I'm a wee bit hopeful that DS2 has finally got used to school, just as well as the 1:1 he had for a couple of afternoons a week last term has failed to materialise this year. It goes without saying that the shitty weather this summer did not help at all.

hecate Fri 05-Sep-08 08:34:31

Thank you everyone for your posts. It has really put my mind at ease! Many thanks.

FioFio Fri 05-Sep-08 09:22:46

Message withdrawn

Pixel Fri 05-Sep-08 09:44:29

Ds has developed loads more little rituals like tapping his feet together a bit like Dorothy in the Wizard of Oz. And his sleeping is horrendous. One night I didn't get to bed at all because he wet the bed and then ran round the house all night. He fell asleep on the settee at 7am the next morning!
I've aged about 10 years.

LeonieD Fri 05-Sep-08 11:39:33

Message withdrawn

Widemouthfrog Fri 05-Sep-08 13:50:50

I could have written this post about my DS. I assume it is because he is being allowed to be himself without the constraints and rules that school places on him. I'm frazzled with the flapping, rolling, echolalia, shouting, poor sleep patterns and a new habit he has of constantly clicking his tongue and diving all over me. He does a lot less of all of this when he is at school (he is just so exhausted when he gets home). The up side is we see less meltdown, which we do get frequently during term time, so I see the autistic stuff as a coping mechanism that he represses while at school.

I practically threw him into school blush yesterday. I was counting the hours. And guess what, now I am missing him like mad.

Hang on in there

amber32002 Fri 05-Sep-08 16:06:01

All very understandable if you're someone with an ASD. The chance to be ourselves is just so marvellous. In a school we have to be NT (neurotypical, in other words behave as if we are entirely normally behaved). The strain is absolutely incredible - like having to walk on a tightrope all day long without ever once losing your balance.

What we want to do is be us. We're wired to be ASD, not NT. When very young, it means children spin, flap, tap, whirl. When older, we immerse ourselves in our hobbies and specialist interests and stay there if we possibly can.

Finding a way to divert us to doing something repetitive that isn't driving everyone around us nuts is the main thing.

On holiday, hubby will sit and read his books for hour after hour, oblivious to everyone else and everything else, as he has to be entirely normal 40 hours a week in the business and during any social occasions. I'm the same with my computers and maps.

What worked for me was diverting my tendency to want to do the same thing over and over into something useful like learning the piano (as long as it was tuned correctly). For each child there'll be something that works, even if it doesn't seem very logical to the rest of the world.

But are we bloomin' irritating to people who are are NTs? Yup, sometimes we are. And so are NTs to us grin

jimjamshaslefttheyurt Fri 05-Sep-08 17:43:24

I think it depends. IN ds1's case I've realised that he can't sit still and not be directed. He can't sit still in comfort with his thoughts because he's pre-lingual, he experiences the world by moving through it, through vision and through touch. He can't read, he can't play computer games and he can't watch TV with any meaning. The main problem with the holidays is that he can't move through the world because if I have all the children home I can't take him out without help. So he's confined. He has no release and so his muscles start to go into spasm and he starts to leap around the place in an attempt to release that.

I don't think he's more 'autistic' as such during holidays he becomes less able to control arousal and far more challenging. Being confined is very difficult for him. I suppose it must be like being shut in a cell but with no means of entertainment, not even the ability to muse on thoughts.

magso Fri 05-Sep-08 19:10:37

Interesting JJ . I was thinking how much less obviously autistic ds in the holidays when dh is home also. But the reasoning is similar. Ds is verbal but has profoundly delayed language and understanding and needs lots of structure physical play and entertainment. With both of us and no other dcs to entertain, ds gets a very high level of less exhausted parental attention - out on the bike, walks, play, canoeing, paddling in streams collecting leaves all his favorites! Now he is back to school and hes flapping/ rocking /licking and in constant motion mode(rubbing my back as I type neglecting him again). Ds cannot cope with being confined either - and nor can I if Im the one shut in with him!!

jimjamshaslefttheyurt Fri 05-Sep-08 19:41:57

Ah yes magso- if we can do that then ds1 is much much better. He was fine when we went camping for 2 days (3 nights) as he was active all day. We however almost passed out as it was so so stressful and exhausting. He literally could not stay at the tent- it was watching him try and stay in or nearby the tent that made me realise how he needs to be able to move. And how he just can't sit if there's an open road in front of him. I then got to wondering why he couldn;t sit still and having had some sessions with Donna Williams really think its because of the way he 'thinks' (not with language). I might email her soon to ask more about it, because in fact his inability to stay still, stay anywhere unless its locked is ironically one of the biggest reasons he can;t go out more. So it becomes a vicious circle.

Likewise he's much better for being at special school where he's often very free to move and indeed is taken out a lot. So he comes home with muscles relaxed. He used to come home from mainstream fall to kneeling with heart racing, go puce and his muscles would go into spasm for hours.

I really recognise not being able to cope with being shut in with ds1. Every day of the holiday started with a "how are we going to get him out today'. If I had all 3, all I could do was a drive Not ideal, but preferable to being in all day.

magso Fri 05-Sep-08 20:20:00

Sorry hope that did sound like I was having a go!!! I was just musing! Ill just have to get DH to have 6weeks off in future grin Ds used to have a wobbly everytime I picked him up from school when in Ms so special is so so much better.
We havent tried camping yet but did stay in a mountain bivi hut for the first time - (with a mountain to climb next day) fortunatly we were alone as it had lots of interest inside (stone walls to touch, unlit fire to build) until it was too dark to see! The door was very difficult to open and very noisy so ds did not escape. We were taken by suprise by all sleeping in till 7am (ie ds slept!)when a mountain runner called in for a cuppa! DH wants to try camping and so far I have resisted (fear of escape attempts !)so I was interested in how you got on! Did you camp in a campsite - I fear ds would wander into others tents!
Sorry to highjack!

jimjamshaslefttheyurt Fri 05-Sep-08 20:26:13

No, no not having a go at all. I was agreeing with you!

Would love a bivi hut!

We stayed on a farm site. We gave ds1 the top bunk and removed the ladder (I slept on the bottom bunk) - that meant he had to jump noisily out of bed onto the wooden floor so waking us! Tent door was double knotted shut!

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