Here we can all be heard for a little while. Part 3

System

Sounds like you've had a very busy few days whitewing and could do withe. Bit of time to yourself to wind down and relax

Ive not watched the documentary on the Queen, she's the same age my nan would be if she was still alive, they were born in the same year. it's amazing that at her age she's still so active, she certainly does the country proud.

I hope work goes well for you tomorrow do you have weekends off? If so at leads it's only 5 days till you're next off and you can hopefully have some time for yourself and littlewing

Pyxis

Whitewing, I found your post interesting, especially your analysis of your thought processes.

I do know what you mean, though. If I spend too much time with other people, I just have to have some alone time, to calm my brain. This is one reason why, if I go away with a group or even just another person, I have to have a room to myself, so that I can get away from peops, even if it's only at night!

Sometimes I may only need an hour on my own, just to go into what I call my stand-by mode!

Gingernutty

It's been blowing a gale and pouring with rain all night until about an hour ago, when it started snowing.

Proper blizzard snow easing to just snow.

All of it horizontal.

Pyxis

Poor you, snow! Shudder!

I thought my windows were coming in last night; my bedroom faces the prevailing wind direction. It woke me up after midnight and kept me awake for a couple of hours, bins crashing all over the place. (They'd all been put out for bin-day today).

Still windy now, but less so, and sunny!

SingleSue

Waves_and_Smiles wrote: »

Daily life with the reduced version - This is very hard to write because I find it very embarrassing but I shall be honest as always (Eeep!). It happens to an extent regularly everyday but in a much milder version that I do have an element of control over. I repeat movements and often phrases for no more than a minute at a time throughout the day. For a few years I would say "Lalalala" and stretch my leg out. This then turned into loudly saying "Boing" and staring at the ceiling. Another was holding my arms rigidly out in front of me and clapping my hands together and then locking myself into that position. These days I stretch my arm to the ceiling and say "Superman!" and hold it there for a minute or two. You may laugh, I know it's ludicrous. I would say these impulses happen anything from 10 to 20 times a day. The same feelings as in the example above are there but there is no void, I am still in this world, I just HAVE to do it and hold the position, remain stiff and remain silent.

On the above note I can stop it for a few hours if I wish to. I will become very anxious, very panicky, my body will feel like it's on fire and I will have to physically pin myself in place. I will feel dizzy, sweat and will develop a bad headache if I wait too long but I can put it off. It does make me feel very unwell however so normally I just do it as WaSp is quite used to it and doesn't really notice anymore. If I am in public eventually I will have to at least hide in the bathroom and do it because it becomes unbearable.

An interesting point is when a new movement and sound takes over the old ones no longer mean anything to me. I have no desire to repeat them at all. Eventually the current one will change and I will never want to do it again.


Hope that was at least interesting and not too boring. There are loads of papers available online about it, all coming to different conclusions about why it might happen but very little about how it feels because sadly people are often too unwell to describe it so I can only tell you how it is for me. There is also a huge stigma for sufferers to talk about something that appears so odd, other people I have met with the condition have had very low self-esteem and have felt very embarrassed, frightened and confused by it. They already know that they are viewed as strange and prefer not discuss it. The only treatment found so far is antipsychotic medication and then it just takes the edge off it for a lot of people and relapse is common. Many people with Catatonic Schizophrenia remain in long stay hospitals.

Now I have thoroughly embarrassed myself I shall hide. :rotfl:

Not boring at all, in fact it was very interesting.

Youngest has something like the reduced version linked to his autism so I don't find things like that embarrassing anymore, ex hubby used to hate it and it was on one of youngest's occasions when he was having a particularly bad day (we were out in public, youngest was not coping well), that now ex hubby went a bit boo loo at him for doing it (of course, it made him do it all the more as the stress increased).

Silly thing was that not many others had noticed youngest's noises or movements but they all certainly noticed ex hubby shouting, swearing and throwing chairs.

Or the time when he was going through a stage of barking like a dog and he felt the need to woof out of the car window...frightening a cyclist I was passing and who almost fell off from the shock.

At school, there were occasions of some of the teachers thinking he was doing it on purpose and would tell him off, some would hold onto his legs or arms to prevent him throwing them up/out which only served to make him even worse and get into even more trouble for his noises/movements (some didn't quite understand that his 'label' is complex autism because, well, it is complex with lots of parts of other conditions mixed in with it)

Pyxis

Difficult situation, SingleSue.

You can only do your best by him, and hope that in this day and age, people are a bit more educated and enlightend about it.

Has anyone addressed your son's class about problems like these? It may be useful for the other kids to understand what's going on. It may educate the teachers, too!

SingleSue

He is at a new place now, as soon as he completed his GCSEs he moved to a college 15 miles away which is rated outstanding...and outstanding it certainly has been. He loves it there and people take him for who he is rather than it all being about his disabilities (complex autism is just one of them), as a result, he has got an ever widening circle of friends who are all fiercely protective of him but who also find him funny/charming/a good friend despite his weirdness.

It has also had the impact of him finally reaching his potential after being written off at his high school (once it was taken over by an Academy before that they were great), as he is now achieving Distinction* x 3 in his level 3 BTEC and is in the top 3 in his year for his subject.

OK, he has had to repeat a GCSE year because of what happened at his high school (very very long story involving them not giving him his statemented help plus other stuff) but it has been worth it in the end. He has grown in confidence and maturity and is that much more likely to go to uni albeit with a very good support package.

We never give up in this family, we were told he would never go to a mainstream high school, would struggle to do basic living skills let alone GCSEs and to not expect too much from him or for him. It's taken over a decade of one to one intensive therapies to get him to where he is today, plus once we got him into this world, he proved to be a determined little begger :rotfl:

He is still unable to leave the house on his own or travel independently (I drive him to the college bus stop where he is met by friends who then get on the bus with him) and prefers to stay locked away in his room and away from people but we have come an awfully long way from the child who was completely closed off in his own little world with absolutely no speach.

whitewing

Storm Katie frightened littlewing last night but she went back to sleep after reassurance.

I managed to do a small scrapbook in the early hours before coming to bed.

Yes, pyxis, I always need a room to myself if I go away with anyone other than DH or the children.

I have a desire to do some major decluttering/organising but am trying to discipline myself not to do too much at a time so we don't have to love in chaos. Unfortunately this is meaning that I am not actually attempting anything, except in my head, which is getting frustrating. (Perhaps this is the effect of sugar overload).

whitewing

http://www.dailymail.co.uk/home/you/article-3504179/Chinese-teachings-Modern-dilemmas-age-old-wisdom-ancient-Chinese-teachings-change-life.html

Pyxis

SingleSue wrote: »

He is at a new place now, as soon as he completed his GCSEs he moved to a college 15 miles away which is rated outstanding...and outstanding it certainly has been. He loves it there and people take him for who he is rather than it all being about his disabilities (complex autism is just one of them), as a result, he has got an ever widening circle of friends who are all fiercely protective of him but who also find him funny/charming/a good friend despite his weirdness.

It has also had the impact of him finally reaching his potential after being written off at his high school (once it was taken over by an Academy before that they were great), as he is now achieving Distinction* x 3 in his level 3 BTEC and is in the top 3 in his year for his subject.

OK, he has had to repeat a GCSE year because of what happened at his high school (very very long story involving them not giving him his statemented help plus other stuff) but it has been worth it in the end. He has grown in confidence and maturity and is that much more likely to go to uni albeit with a very good support package.

We never give up in this family, we were told he would never go to a mainstream high school, would struggle to do basic living skills let alone GCSEs and to not expect too much from him or for him. It's taken over a decade of one to one intensive therapies to get him to where he is today, plus once we got him into this world, he proved to be a determined little begger :rotfl:

He is still unable to leave the house on his own or travel independently (I drive him to the college bus stop where he is met by friends who then get on the bus with him) and prefers to stay locked away in his room and away from people but we have come an awfully long way from the child who was completely closed off in his own little world with absolutely no speach.

:T :T :T


Here's a medal.......



:beer: :A