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Original poster

What a day (involving cats bum faced people as usual)

31 replies

fanjoforthemammaries7850 · 07/05/2010 16:28

Just had social worker around to do respite assessment but were informed that they werent going to apply for funding at the moment as "we had said counselling and sleep training were more important"...

Decided to take DD out on bus. This is a major undertaking as she is hyperactive, floppy and basically loud and hard to manage.

Went into shop to buy little toy for DD. DD was in one of these moods and was grabbing everything. She knocked something over despite me hanging onto her for dear life. Manageress had the biggest cats bum face I have ever seen. I apologised, asked if I could help pick it up, was met with cats bum face. I then said "I'm really sorry, she has SN, she isn't just being naughty" (I would have thought this was obvious from DD lying on floor, flapping arms and squealing but clearly not). She said "no problem" but with no let up of cats bum face or eye contact. Am sure she just thought I was making an excuse (reminded me of that thread about people using SN as an excuse for lack of discipline).

Then got DD back to bus stop. Struggled to manage her until bus came. Sitting on bus and she got super-over excited as she loves being on the bus, was squealing a little, then she started singing nursery rhymes. A guy got up and pointedly went and sat upstairs. Strangely that hurt me more than the other incident. Cue me being tearful on bus.

Why are people SO insensitive.

Not getting closer to developing this thick skin yet.

OP posts:
Original poster
fanjoforthemammaries7850 · 07/05/2010 16:30

And quite upset re the respite since it has been painted that WE don't want it, even though I think I might need it.

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kittyfu · 07/05/2010 18:24

don't no what to say about the repite except call them and make it clear that you do want it and did'nt mean to imply otherwise (i'm sure somebody with better advice will come along).

just wanted to let you know that the thick skin will come, but some things will always hurt you just need to pick what you will let bug you and what you won't. i had to get my eyes tested today and ds was at his worsed, and i stayed clam and did'nt let anyones comments or looks get to me, but one parent at my sons nursery delikes him and this upsets me all the time. i would think men on the bus would move away from a singing child reguardless of any sn thou, he was insensitive but it properly was not delibrate.
i hope you have a better day tomorrow

Original poster
fanjoforthemammaries7850 · 07/05/2010 18:31

Thanks. I tried to say today I wanted it but was made to feel like there was no chance.

I understand about your son's nursery, I go through the same with a parent at my DD's nursery, it's so unfair isn't it.

I know he wasn't deliberately being cruel, it was just hurtful given how I was feeling I suppose!!

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Original poster
fanjoforthemammaries7850 · 07/05/2010 18:32

I don't know how you have to BE to deserve respite, i'd say crying in the street every week or two is deserving.

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kittyfu · 07/05/2010 18:47

i would say you need the breck, but i've never gone for respite so dont no the in's and out's of getting it. i have learnt that everything is a fight, even if it should'nt be so if your entitiled to it dont give up.

i think the parents at nursery thing is something a lot of the people here deal with.i think it bugs me so much as the mum of this boy is the only one my ds talks about or shows any interest in. what makes it worse is the ds really isnt bothered at all. oh well i'm sure i will figure a way to deal with it.

Original poster
fanjoforthemammaries7850 · 07/05/2010 19:01

I think we have to accept some people are just not worth worrying about.

Strangely, the parent at DD's nursery who is unfriendly to me and DD becomes super-friendly when I stop bothering to talk to her, then when I start again she is rude again.

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tibni · 07/05/2010 20:43

Respite in our area is really difficult to get but I have managed to secure direct payments so that I can employ a PA to support ds. I am in the process of undergoing a full core assessment to try and increase the number of hours we get.

The thick skin does come. 6 years down our journey I can honestly say that I don't really notice the stares. ds has challenging behaviour and at 9 he is physically big to manage so he tends to take most my attention . What does hurt is when family members don't make the effort with ds.

imahappycamper · 07/05/2010 20:52

Someone told me the following
"Those that matter don't mind and those that mind don't matter".

tibni · 07/05/2010 20:55

I have some very special friends now who I would have never met had ds not had his disability.

Original poster
fanjoforthemammaries7850 · 07/05/2010 21:16

Thanks.

I hope one day I will not have to keep posting these kind of threads.

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tibni · 07/05/2010 21:34

It gets to us all sometimes - just not as often as time goes by.

And you really learn who your friends are

Original poster
fanjoforthemammaries7850 · 08/05/2010 08:11

Thanks, I am just starting out with a very thin skin so maybe it will just take longer to grow.

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Goblinchild · 08/05/2010 08:18

Sometimes it's people's own inadequacy, they don't know what to do or say and their own awkwardness makes them grumpy and negative.
Sometimes they are just judgy pains-in-the arses.
I did have giggling hysterics on numerous occasions when DS was younger, especially the mum who thought you could catch Asperger's and worried about close proximity. And the number of people that recommended I should stop being soft on him. Me? Soft? Generations of pupils I've taught would be unable to compute that image.
Thick skin and a devil-may -care attitude will come, or total insanity. You choose.

Original poster
fanjoforthemammaries7850 · 08/05/2010 08:24

Well, at the moment it could go either way

Probably insanity, if my auntie keeps insisting to telling me to "train and discipline DD so she is normal"....

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nikos · 08/05/2010 08:36

I read somewhere (can't remember where, maybe on here) that when in these situations focus completely on the child and you start to not even notice the stares. It does work a bit, not all the time but a bit.
I also try and remember that I will never see these staring people ever again and so they have no need to have a great deal of meaning in my life.

Goblinchild · 08/05/2010 08:38

It's so much harder when your family don't get it. Mine have been on board all the way, and the difference that makes is incalculable.

Original poster
fanjoforthemammaries7850 · 08/05/2010 08:40

Yes, DH's mum is so supportive and it makes a lot of difference..my mum is too but gets very anxious and stressed about it herself. As for my aunty and FIL...

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Original poster
fanjoforthemammaries7850 · 08/05/2010 08:40

Thanks Nikos, I will try to keep that in mind.

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nikos · 08/05/2010 20:53

I would go back about the respite care. Do you have other children? I've got another thread going about the problems we are having but when it was working well it was brilliant.
Remember the assessment is not only about your dd but also about your needs and your need for a break. And we all need one so you are not asking for anything unnecessary.
Sorry don't know your dd condition but if it is ASD then going out became so much easier when ds was around 4.5 to 5. He just seemed to calm down a bit. So the situation as it is might not go on for ever.
I would never have believed, for example, that ds would not always run off. But he changed and now insists on taking my hand when we are out.

Original poster
fanjoforthemammaries7850 · 08/05/2010 21:03

I only have DD.

We don't have a DX yet, we have been waiting 2 months for results of MRI, genetic tests and EEG/brain stem tests. She has ASD traits, gross motor delay, hypotonia and regressions.

She has calmed down a bit recently, and will sometimes hold my hand, good to hear there is hope.

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PersonalClown · 08/05/2010 21:10

I'm for hire if you want me Fanjo.

Keep me stocked in tea and biscuits and I'll be a complete cow to anyone that stares.
I'm great for doing it on anyone's behalf.
Just can't do it when it's my own DS.

nikos · 08/05/2010 21:17

Are you claiming DLA and mobility? If you feel you need a break then I would go back to SS. Often that's the only way they know you mean it. Also when ours was working well it was really good for ds. He learnt he could make relationships outside the family and his confidence increased.

Original poster
fanjoforthemammaries7850 · 08/05/2010 21:32

thanks personal clown,maybe I could do it for you then!↲nikos-we get higher rate dla but no mobility as she is 3.6 and can walk. The sw is nice and being supportive,i suppose it comes down to funding as usual.

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jardy · 08/05/2010 21:46

Hello fanjo,dont let this get to you. Its hard for people to understand when they have no direct experience of sn.Sad people,what goes round comes round.My son has very violent episodes ( not asd,severe brain damage and very severe challenging behaviour),he looks normal. You never know when he will have an episode,but he did once in the bread section of M+S,he lay on the floor and started hurling bread at this really posh couple.Croissants,and heavy loaves were bouncing off them.You know they were so very lovely,gave us no stares but carried on as if it was totally normal.My ds is in his 20s and a powerful bloke now.Eventually they walked off and my dh and I managed to carry ( I mean an arm and a leg each ) to the car.This didnt ruin my day cos the couple was so understanding.
I imagine, however,that when they got to the car they said to each other "The poor sods " or words to that effect!They were brilliant.

OverflowingMum · 08/05/2010 22:05

It's hard isnt it. Dealing with other people as well as dc
Had a terrible incident this morning, when DD3 (aspergers) was choosing a comic( reward for melt-down free bedtinmes for 4nights in a row!)Anyway, for some reason, choosing a comic is something that causes her a lot of stress for some resaon?! she was taking forever, I tried to narrow her choices, bad mistake, cue total melt down,kicking,screaming,flailing arms etc..Then 2 elderly ladies went past. Stopped and stared, then walked on muttering about "what a naughty girl...tut,tut,tut"
Made me cry atually...obviously I need thicker skin too.