the ways that my arthur affects my children :(

nearlybionic

Hi
I have probably been too wrapped up in my own problems recently, but I have always thought I was a quite good Mum. Now I`m not too sure...
For the past 3-4 years since arthur started to really affect my life, my children, who were 11 & 9 when it started, have had to be more independent and in fact help me with things that other children wouldn`t be doing for their parents. (My hubby does help too)
My eldest is now in her first year of GCSE`s and is expected to get A`s and A*`s, but we got an email from school to say her last test result was showing her underachieving. I am worried that she has been doing more for me and not spending enough time on revision. But more worryingly my son is having behaviour issues, which school are concerned about, (lack of concentration in lessons, chatting, `being disruptive`) . At home he is caring, wants to be with me and I feel things my son especially have been affected as arthur has affected my life more. I am not realy looking for answers, but just wanted to let my worries out.
Thanks for reading xx
NB

Numptydumpty

Hi NB, First off I'm sure you are a good mum. I'm also sure your children know that. They sound like lovely children. You mustn't feel guilty. You didn't ask for this horrid disease. We all have to rely on our families more than perhaps we'd like to.
Perhaps you could speak to someone at their schools.
Please don't blame yourself.
Thinking of you.
Numpty

stickywicket

I hope it did help to get it out in the open, NB, as these things have a tendency to fester if we don't.

I'm sure you're every bit as good a Mum now as you were before and a little extra independence will do your children no harm at all. As a good Mum, you are asking yourself if you are to blame for what appears to be going wrong in your children's lives. But, just as we all have a tendency to blame arthritis for aches and pains that have nothing to do with it, so it's all to easy to blame it, and how we deal with it, for other changes. It's a fact that very few (lucky) parents, arthritic or non-arthritic, will get through their kids' teenage years without at least the odd blip. It's a period of massive change for them.

School have contacted you so I think Numpty's idea of having a chat with them might help sort out a few things, including ensuring that the school is aware of your difficulties and how they might impinge on your children.

janie68

NB

I really feel for you, Iworry constantly that my daughter (13) is finding my RA difficult and that her schoolwork will suffer because of me.

Tonight is options evening for GCSEs. I cannot go to the talks as the teachers are doing theirs in the classrooms which guess what are upstairs. I can't get there. She is annoyed I know.

Don't feel guilty, please I know it's hard not to. I would talk to pastoral care and tutor about what is going on,

For yourself, contact social services, the council do a direct payments scheme where they come and assess you. You get money straight from council to pay for things such as housework, gardening, caring for you, anything like that. Then you pay the person who does it for you. This may help ease the burden a little on your kids.

Please talk to your kids too, let them tell you how it is for them. If they can't, then the school or GP may be able to refer for counselling for them. Nip it in the bud?

Hope this helps

Janie x

elnafinn

I am appalled and dismayed to read that you Janie cannot attend tonight's talks because of the stairs. The school should have thought more about this. There may well be others that cannot go for similar reasons. This thoughtlessness should be brought to the attention of those that arranged the evening. Surely facilities should be in place for any student attending the school with a disability where stairs are a no-no.

Elna x

tkachev

I am dragging myself off to options evening tonight. They have a lift and are always very kind and accomodating. They make e tea and carry it to tables, all sorts of things.I think you should ring and ask the school how they can help as Elna says.
I must admit I get embarrassed though but better than missing out(I have missed a few).

NB I often wonder if my children have suffered due to my R.A. They don't get the walks, swimming, trips to parks unless I persuade OH or pay for a carer.I feel bad about that. I think they all lack confidence because they do not do the 'usual' things and Mum has a walking stick.
I would say your children have been upset by your recent fall. it must have worried them.
Maybe your Son wants some peer approval! Whenever there is a change in behaviour a school will pick up on that. Your daughter is a difficult age full of growing issues! It must worry them to see Mum so unwell.
Your children sound as if they have learnt to be thoughtful and caring(not always forthcoming from my daughter!). They won't be thoughtless or helpless so that is a big plus.
The direct payments scheme does not cover housework in most areas only help with dressing and showering I'm afraid.

There are carer clubs where children get some fun days out and parties.Mine don't belong because I do not think they do enough 'caring' compared to some children but it might be something your children would like although I appreciate time for school work is imporant!

Best wishes
Elizabeth

janie68

I already rang this morning. School couldn't do anything except send any paperwork to me that may be relevant. It's a good jbo there is a parents evening soon, which my hubby is going to for us. He can't always take time off though! It doesn't have a lift, the school did have a disabled child recently, don't know how they got around that at all!

How are you feeling NB?

Janie x

nearlybionic

Hi Janie
Thanks for your reply. I have had a bad day with feeling low about the way my children have been lately. It probably has been exacerbated by my fall. My friend called round to see me earlier and I talked to her about it all, which has helped to let it out a bit more.
I`m sorry to hear that you aren`t able to go to the options evening. I hope you get the literature through so you can help your daughter choose. Is she able to go along with someone else so she can feel involved?
Today has been a good day for my son at school, meaning the day was uneventful and no problems raised. So feel a bit better tonight. I will see how things go and speak to school again if things are bad again.

Take care x
NB

nearlybionic

Hi Elizabeth
Thanks for your reply x
I understand what you are saying about feeling children miss out on activities because i am unable to do them or take them. Now that they are a bit older they do go to some places with friends but it makes me sad that they have started to grow up now and I haven`t managed to do some of the things I would have liked to do with them when they were young. Even little things like being there on her first day at high school as I wasn`t able to drive or sit in the car at the time. A friend took her and picked her up for me and told me how she looked going in etc.. but its not the same.
We do have fun together, but not always the same activities that others are doing.
I haven`t ever enquired about help as I have Mr NB , although he works long hours as he is self employed after being made redundant last year.
So I probably wouldn`t qualify for any help??
Take care xx
NB

tkachev

janie68 wrote:

I already rang this morning. School couldn't do anything except send any paperwork to me that may be relevant. It's a good jbo there is a parents evening soon, which my hubby is going to for us. He can't always take time off though! It doesn't have a lift, the school did have a disabled child recently, don't know how they got around that at all!

How are you feeling NB?

Janie x

I do know how difficult it is as I have missed meetings in the past. When you are in pain its not always easy to feel like going out walking about and concerntrating on conversation. I was surprised when they took me in the lift as I don't like to ask for favours but they should be helping as much as possible. My Son is unsure about which options to choose so I really feel the need to guide him with that choice.I have to pay for a carer to look after the other 2 children. I also have parents evening next week and have already hit an obstacle!

Elizabeth

tkachev

Hi NB

I had my help stopped this year as the OH is deemed able to do all the caring. It depends on how bad you are but usually help is only given for washing and dressing.

I have turned my children into computer addicts. It is so much easier to look after them when they are safely in own place and I do not have to go rushing about after them. I do feel bad about that.

My daughter likes to bake but it makes me so tired but I hate to let her down.

I had 2 children before R.A and we went for lovely walks and I took them to the park after school most days. My younger children do not have that.I know our children still love us but the guilt is still there!

E x

hileena111

Hi NB
I have to go off line for a while......so havent read through all the replies...just your post and a couple of of replies
My children were up and away from home before arthur reared its ugly head.
I think whether you had arthritis or not if your children wernt doing quite as well at school as you hoped.......you would be asking yourself if it was your fault , were you to blame???? .....we mothers are very good at feeling guilty and blaming ourselves for things that aren't our fault :oops:
I'm sure you are a great mother and your kids......like most kids are going through a blip. I think we all go through something like this at some time or other but because you have arthritis you automatically think its your fault
Be back later
Love
Hileena

tkachev

tkachev wrote:

janie68 wrote:

I already rang this morning. School couldn't do anything except send any paperwork to me that may be relevant. It's a good jbo there is a parents evening soon, which my hubby is going to for us. He can't always take time off though! It doesn't have a lift, the school did have a disabled child recently, don't know how they got around that at all!

How are you feeling NB?

Janie x

I do know how difficult it is as I have missed meetings in the past. When you are in pain its not always easy to feel like going out walking about and concerntrating on conversation. I was surprised when they took me in the lift as I don't like to ask for favours but they should be helping as much as possible. My Son is unsure about which options to choose so I really feel the need to guide him with that choice.I have to pay for a carer to look after the other 2 children. I also have parents evening next week and have already hit an obstacle!

Elizabeth

Hi Janie,
Options evening was very very tiring, even with the lift! Legs were killing me all night.Has your daughter got an idea what options she wants? The school have said I can email individual teachers to chat if I need any more advice and the books give an insight.
E x

barbara12

Sorry NB I have only just seen your post, we all understand what you are saying, I was fine when I had my family at home, but now I feel guilty that my GC have to help and I cant do with then what I used to when they were little .
I do think being a mum has guilt built into you, we never think you have done enough for them, but I am sure it will make them much better adults for having to help you.
Sending you loads of hugs (((((()))) xx

nearlybionic

Good Morning!
Thankyou Hileena and Barbara for your lovely replies. I think you are right about the guilt we all can have at times as Mums. I am very lucky to have 2 lovely funny, helpful and loving children. In fact my son told me about a poem he wrote in English at school about `loving his Mum`. (the topic was given though!!) The words were lovley and I did have to blink back the tears, I am a bit of an emotional wreck a the moment!!
I am hoping that today will be a better day for them both; my daughter has a test in Geography, and my boy is starting a new topic in technology - Cookery which he really enjoys. i hope that having a subject he enjoys will help him to work hard and concentrate more.

Elizabeth,
I hope you had a good nights sleep and that you are not acheing too much today after the options evening.
NB

jillyb1

NB , just to let you know , I had all the same fears , worries and problems with my 3 kids who all grew up while I was going through the worst of my RA ; 31 years later they are all married/settled with lovely spouses and are the kindest , most understanding adults you're likely to meet . All I'm trying to say is : stop worrying , you love them and are their mum which is really all that matters in the great scheme of things . Jillyb

tkachev

Aw your lovely Son. Well you know your kids love you but schools do have a way of making you feel guilty. I have been cross with some teachers and had to point out I am not always able to do homework/bathing etc. Sometimes you have to tell them how difficult things can be.

E x

sugarbuttie

I worry that my children will just remember me being in bed all the time (when not at work). Mine are only little and too young to think about why mummy is poorly more than the next person.

Your son sounds lovely. Your arthritis has made into a compassionate person, by the sounds of it. He may chose a caring career on the back of it, you never know.

I can't offer any advice, just understanding x