Nice people thread part 8 - worth the wait

SingleSue

neverdespairgirl wrote: »

Really sorry to hear that, Sue.

Do you know of other children in his year, or one or two above, who carry inhalers? Perhaps they could have a chat with him?

If he doesn't know them, he won't talk to them or relate to them in any way. Same with TA's, if he doesn't have a relationship with them, they are non people who do not exist.

James uses a laptop for exams and in lessons because his fingers dislocate, youngest needs to use one during exams and lessons due to Irlens but won't because it would make him different and point out he has autism. We have tried pointing out that James uses one and he is not autistic but youngest is having none of it.

Hence my feeling like I am banging my head against a brick wall!

Nikkster

SingleSue wrote: »

Yes he does, including both his brothers! He will not be swayed by that arguement, we have all tried to point that fact out.

Sue, sorry to hear you are having an especially tough time at the moment. It's challenging for any of us to deal with the 'I'm not the same' feelings (which are often juxtaposed with 'I don't want to to be the same' feelings). Hope he manages to find a way to deal with them. I get that slightly from one parent (who feels like everything is wrong with them), and it's difficult enough without the other issues your DS faces.
I rationalise it by reminding myself that we all have something slightly wrong/ not as right as it could be with us, it's just that for some people it is more apparent. No idea how I would persuade anyone else of that though.
You and the boys do an amazing job of coping with what life throws at you x

SingleSue

CKhalvashi wrote: »

I'm sorry to hear that Sue!

As NDG has mentioned, it may be worth getting some peers to have a word, or perhaps asking teacher/reception to keep his inhaler on school grounds, so he can leave class if necessary (if he has more than one). I was asked to keep one in the Science department for one of my form, who didn't like to carry it, and I know there was also one in PE.

CK

He has had the offer to use his inhaler in the medical room...no good as he would have to leave the class to do it and (like a broken record), that would make him different.

The problem with youngest is that he is not the most sociable child in the world, he doesn't like people, his peers do not think like him, so he sees himself as above them (unfortunately, he has developed aloofness alongside self awareness) and unless he has known a teacher or TA for more than a year, they are non people who are not trusted and thus, not to have a conversation with.

Even his trusted TA who has worked with him since year 7 has not been able to get through to him on the issues, she tried to talk to him on Wednesday and got nowhere.

It's hard to explain to others the difficulties he has but he is known as a complex autistic for a reason, he is so blooming complex and completely out of the norm for even a standard autistic, let alone a 'normal' 15 year old!

SingleSue

michaels wrote: »

Sue I have no advice but our thoughts are with you. Is there anything we could do to help out perhaps with the older two to give you time for DS3?

Aww thanks....the other two are not too bad. James gets out and about anyway at work/school or with friends and middle son will play one of his instruments to chill or go around to one of his bandmates.

Middle son used to be the most challenging (and by god was he challenging!) despite having the lesser diagnosis but he is on a pretty even keel at the moment as he has had lots of music stuff to do with his BTEC...although he is now getting bored again as school has finished until September. But he understands his diagnosis, knows he is different, will in fact tell people he might be slightly weird or forget something they have told him 10 seconds before but also revels in the fact he is different and uses it to his advantage.

He is also quite sociable....youngest wants just to be left alone, in his bedroom, never having human contact and trying to avoid having human contact at all costs.

michaels

Another thought - hard though it is now, is the developing self-awareness a positive thing in the long term?

SingleSue

It is and it isn't.....it is like a double edged sword really. The self awareness will (hopefully) stop him making the eek comments he can make or the tendancy to stick with just one item of clothing but the other side of the coin is he is so paralysed by the thought that he appears different, that he now cannot move on...which makes him appear even more different than he was before!

GDB2222

lostinrates wrote: »

Yes, already changes, mild ones I believe.

Also, the very early stages of a cataract, which new person failed to mention.

Maybe it gets discussed later . I'm not going to worry I case that's the case. .

I'm not sure what the medics can do about diabetic changes to the eye. It's really up to the patient to be more careful about his/her blood sugar levels. It's a wake-up call for your mum/dad before she/he goes blind. It's certainly worth discussing with the GP, to make sure the medication is optimal.

So, on the one hand that's very positive, as there's no reason why anybody should go down the blindness route. The medication is good enough to prevent it, but on the other hand mum/dad needs to be more careful than in the past, so it doesn't get any worse.

How often does mum/dad check her/his blood sugar levels?

Do these retinal scans have anything to do with cataracts?

lostinrates

GDB2222 wrote: »

I'm not sure what the medics can do about diabetic changes to the eye. It's really up to the patient to be more careful about his/her blood sugar levels. It's a wake-up call for your mum/dad before she/he goes blind. It's certainly worth discussing with the GP, to make sure the medication is optimal.

So, on the one hand that's very positive, as there's no reason why anybody should go down the blindness route. The medication is good enough to prevent it, but on the other hand mum/dad needs to be more careful than in the past, so it doesn't get any worse.

How often does mum/dad check her/his blood sugar levels?

Do these retinal scans have anything to do with cataracts?

It should be a wake up call. However, there have been wake up loudspeakers in the each with double shot espresso cups and frankly...parent is a damn fool.

It falls on deaf ears and is extremely infuriating. Parents friend (someone who has far too much influence IMO) is a would be nutritionist and doesn't help. 'So and so says these nougats are ok' well...um, they might be, one or two with a eat, but a box instead of a meal or between meals,,,,,,not so much.

after much frustration and gnashing of teeth, buying of simple books on how to eat for managing through diet etc etc...of giving up and remember parent is an adult not my child. After going out of my way to produce food I cannot eat that was healthy and appropriate I found candy wrappers and healthy but not diabetes appropriate feasts taking place and so.....it's not my business.


The only thing I have had any influence on is alcohol. That's been done by threatening to call the police if the car is at the pub and not really be a use I care about the drinking but because I do care about drink driving. Dh has also had influence because while parent doesn't care what I think they do care what dh thinks.


Parent doesn't check blood sugar levels often. I used to prompt and it was then done but caused bad feeling. (i'm understanding it this week) its not my business, but dh had already talked with me and we had agreed that the appropriate response was a joke about how nice it was to have two feet/eyesight. (Which is not what we would normally do but what parent would...learn to speak the other persons language) or nothing (not what I would do but what dh would).

Generali

May be of interest to some:

http://vistriai.com/kinseyscaletest/

It's a test of how heterosexual/homosexual/asexual you are. I got a 0 which is unusual. When I answered as my mid-20s self I got a 3 which I found interesting as I only answered 1 question differently.

Spirit_2

Generali I tied the test and got this
The test failed to match you to a Kinsey Type profile. Either you answered some questions wrong, or you are a very unusual person.


This evening we went to London for supper in Chinatown then on to see the Cripple of Inishmaan. We all really liked it. It was not as dark as my OH was expecting and quite humourous. DD had read mixed reviews but we thought Daniel Radcliffe was good.

Next month..Private Lives.