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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Sigh Got in a right tizz today. Note, the 'sad news' I mention in the link is just my first batch of confirmation about shoulder damage, pain issues. It's not BAD news as such (though not good), but I'm finding it very sad to continue adjusting to idea that health will slide down down down down with RA Trying to be Pollyanna about it, I am at least grateful that by the time my mobility is so restricted I need aids to get out, the children will be old enough to not need me every other minute of the day.
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Merryberry, I've just read the link in your post and am astounded by how you've been treated. No you are not being over sensitive, and certainly shouldn't have been prodded to explain your medical history to them, especially in front of others. From my experience of having worked in Nurseries (not Sure Start I admit) if we saw a parent needing to move a large chair around with them at a stay and play day, one of the staff would have gone and carried it for them or found more to place at strategic places, without asking any questions. To be honest we might have wondered what their need was but it would not be unusual to have parents with mobility needs, post op movement needs, or even grandparents who just need a higher chair. Usually, in time the parent/carer would tell us but only once they felt confident and trusted us with their children, this in turn would mean that we would make sure there was a higher chair for them at events like open afternoons or plays or anything like that and other things like if their child was ill we could take the child home to them rather than dragging a parent in pain on an additional journey. Like wise with a parent drinking or eating, it could be that they were diabetic etc etc. So you are absolutley right to be annoyed and upset. Obviously this Sure Start has had no training whatsoever in equal opportunities. It sound like as its a new venture they've all just been briefed on the 'rules' rather than the responsibilites of respect. I certainly think that if you can face doing it complain not to the manager but to officer responsible for Sure Start at your Local Authority (most of them give a contact point on their websites) Or maybe you could give them a nras leaflet so that you don't have to explain. You sound like a great mum making the effort to take your daughters to a new venture, with the opportunity that Sure Start could (if it were run properly) offer. As you say it is for families as well as children. I really hope you are feeling less sad about it now and hope that you can get a good and hopefully pain free nights sleep. With love Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Merryberry i read the link dont feel you were over sensitive at all,in fact think they were insensitive and untraiend in how to appraoch a mum who can not do excactly as they outline. would only have taken observation to see you im sure having alot diffuclty moving the large chair,etc beaker for drink fine. youve expressed it sos sorry see your latest news re ra advances. not easy to deal with lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Dear Merryberry,
sorry you had this bad experience and with health issues to deal with,
when u feel up to it i would definitely let them know how u feel - then hopefully they can think about changing their over-zealous unprofessional approaches - but try not to focus on this too much tho' - it's their problem for them to deal with,
I just wanted to say it's blatantly obvious that YOU are a great mum and thank you for being supportive to others, including me, in other difficult situations
...i've been there too in the past - years ago with Sophie / possibly with RA symptoms but undiagnosed way back then - mine was a Stepford wives situation - some just too perfect to be true - upset for a little while about things until we ditched that playgroup, found another and all lived happily ever after,
Some things you can just do without, do hope you have somewhere that is right for you and some support to help with positive adjustments, stay in touch xx
Big hugs ~ lizz xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Oh my goodness-how horrible for you, of course you're not being over sensitive. I know that there have to be certain rules and regulations for health and saftey, but I really feel that it was handled SOOOO insensitively. You all need a sit down and a talk about your needs AND they need to provide you with an adult sized chair AND someone to move it to where you need it. And you sound really down about the future-it's understandable but don't forget that advancea are made all the time and what might seem inevitable NOW may not necessarily bo so in a few years time. Just as a an example, when I was younger and my children were young I was told that because of my Diabetes that I would be blind by the time I was 40. It was a hell of a shock and I really panicked, but thank goodness I didn't let it spoil all those years because by the time I WAS 40, HUGE advancements had been made that were'nt known back then and although I did actually have two heammorrhages in both eyes at the same time which left me blind, it was only for 2 weeks as I had lazer surgery on eye and 'prpoper' surgery on the other which restored my sight for me! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 854
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I am so upset for you. A quiet word out of earshot of others may have been acceptable but public grilling followed by the rest was way out of line.
A private civilised word from you to them, when/if you feel up to it, may be the answer. Gosh, you have to fit into what they expect of you not the other way around. Public service not!!!
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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I would have felt exactly the same way you did. I've come across people and situations like that where you feel like you're under scrutiny and have to justify either yourself, your illness or your ability to parent to some know-it-all busy body. I don't think you were being overly sensitive.
After I get upset, I usually get angry so I'd march myself back down there and have a rather stern word with those concerned and lay it on really thick! Whatever you do chose to do, don't allow it to get you down anymore. We have more than enough burdens to bear without allowing someone like this obvioulsy ill-trained person to add another.
x x Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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I read your link, Frankie, and I`m so sorry you were treated in such an insensitive manner. It is they who were in the wrong - wait a few days, work out what you want to say to them, and if you have the energy, go and put your message across. You are doing the best for your children, don`t let anyone interfere with that. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Franky,
You should never have been subjected to this awful treatment. It would be tempting not to go again, but you need somewhere local to take your boys. They owe you a big apology and I hope you get one.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Frankie, my love - this is just appalling.
You are most certainly NOT being oversensitive. No-one should be expected to explain illness/disability in front of a group of people. This guy's attitude stinks and I really hope someone reports him to the powers that be. Maybe, as others have already said, you can go back and talk to them when you are feeling calmer. They owe you a HUGE apology. Please don't stop going until you have had time to think things through as your lovely son will benefit so much from this and you will meet other Mums and make new friends.
Much love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Sorry can't type much today Franky but just to say I totally understand. This wretched disease gets to us so much - on another day this would have made you really angry instead of upset - you're definitely not oversensitive. Take care.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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thanks everyone. i think i'm going to a different venue next week to see the more senior manager who was there to discuss their problems. any attempt to discuss mine will be rebuffed, i can tell you. i just do not trust them to be thoughtful or respectful enough. anyway, i've forgotten it for now for a nice quiet family weekend.
managed to take my humira last night, and already enjoying the lowered heat and ache in elbows etc. lovely. and am womanfully ignoring my tonsils which are doing a whole ring of fire thing as per post humira usual.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Frankie,
Can understand you feeling upset and NO you were not being over sensitive. As you have said, you've moved on now and these people at Sure Start, if they make you feel this way, shouldn't be given the time of day.
Enjoy the Easter Holidays and hope you have a relaxing time,
love,
Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
I have had this for years now- when I was teaching and I applied for jobs they discriminated against me because of it saying they needed someone to be on the childrens level etc.
It wasnt true professionally and not personally either! There are all sorts of ways you can engage with your child, Bernice has held onto my top from a few wks old- and nestle into me and I think we as disabled parents have a few things we could teach the able bodied community about working round things and adaptability which does no harm (if not a positive thing really) for our children.
I have to say I am not really up for the fight often so I just have a few quick phrases to fire away,
One is when nosy people say "something wrong with your legs then" insinuating Im lazy I have been known to leave and come back with my blue badge.
Other times I have told them that I have a hideous disease that becomes contagious when in contact with ignorant peoples comments.
We have a local sure start centre that Bernie goes to, trouble is people make assumptions- one key one is that disabled parents are crap parents and are child protection concerns. (it is on their list for things to look out for apparently) I find this a lot dealing with my adoptive children- over the years their behaviour looks like something it isnt (freaked out when the police came to visit school, having to watch lilo and stitch at school christmas time etc) and needs special calming techniques not "pull yourself together" but when you approach the staff the assume "dysfunctional child equals dysfunctional parent" and then they see me sticks and chair and make a whole load of stuff up to themselves.
My PA takes Bernice down there now as I cant deal with it. I get so embarassed.
It is prejudice.
It is wrong
and drip drip drip we over come little things and cry at home.
Jenni xx
PS In the end I had a card made for the "tutting granny" brigade seing my wobblering 5 to 11 yr old! - "I am adopted, have had tough start in life and am learning new ways to behave in my new family." Much less of an audience then. Perhaps a little card for ignorant idiots at sure start is a way forward....how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009 Posts: 176
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I too am furious you were treated like this. - No you were not being over sensitive. Someone mentioned what 'they' are looking out for, and I know this is part of the training to run Sure Starts. The training is not 'in-depth' and they have many forms to fill in and send above.
It would be interesting to ask, if and when you are in the mood, what thier Policy is around Disability. Do they discriminate against disabled children? If the answer is no, then ask why they discrimiate against Adults. You still do not need to give them the information, and could just give them the information that you are disabled by a progressive illness that is not contagious (except, as Jenni stated- to ignorant people) and are not prepared to discuss it further.
Good Luck if you do decide to go back, but don't doubt yourself because of them.
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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thanks again everyone. jenni, avoidance of known 'dumb' spots is becoming a good technique for me too. lauged at ingorance is contagious:)
now not at all happy to go in this week - too busy enjoying ourselves, relaxed etc. 'fraid to say, this mini debacle has convinced me Sure Start not effective.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh Franky, you are were not being over-sensitive to their insensitive behaviour.
I would imagine that people who work with tiny children should be caring enough to notice a person's difficulty and do all they can to help the Mother feel comfortable in that environment. I think it is truly admirable that you made the effort to go out, especially after hearing such painful news. You should be applauded!
The day after I was told of my hip erosion I had to run our monthly home schooling group, and I could barely hold myself together. I ended up crying in the toilets and felt really unstable about being there. I think you may have reacted slightly differently had you not had that news. RA is so cruel and it takes so so long to accept it as one never knows what it's going to do next.
Much love, Amanda
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