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Children struggling with the whole thing

PostPosted: Wed Feb 27, 2013 7:24 pm
by Rose
I wonderred if anyone who has gone through this themselves might be able to offer some helpful advice....
I have 15 year old girl and boy twins.
They are really struggling with my diagnosis.
I am trying to understand how they are feeling to get a handle on things but I am failing.
They just don't seem to offer any support. I understand that teenagers are very self absorbed with themselves ....hell I am certain I was at 15 too. So not picking up after themselves or lending a hand is ( I think ) to be expected.
But it's the anger, almost resentment that I struggle with. They roll their eyes when I say that I can't manage something at the time.
They don't want to hear about MS at all. My daughter gets angry and "fed up" each time the word MS might come up in conversation. And trust me I may only bring it up once per week! She is very much like her Dad. She just gets on with things and seldom complains when things don't go her way. I have always felt that she is going to manage herself in the world just fine. She has no objections to taking vit D each day and following my OMS menu 4/5 days per week and understands why. She just gets on with it. No drama there,
My son just doesn't say anything at all. I have sat down with him and discussed why I can't participate because of fatigue etc, but it just doesn't make a difference. He doesn't seem interested really. He is far too consumed with building his tennis career!
My husband doesn't get involved. Please don't expect him to. Some people aren't good communicators...he doesn't see that there is an issue.I don't know what I am after exactly but I just know that I feel a lot of pain when they respond in what I feel as a hurtful and unsupportive way. I tell them that too! but that just gets them more fed up. I find being over sensitive difficult to curb. I have always wanted to remain independant from my children. Not to feel needy But here I am wanting something from them. I'm not proud of that. What I really want is just understanding but maybe they just don't get it.
I also understand that tenage brains are not fully formed like adults and that I am sure things will be different with time, ( I hope ).
I just wondered if anyone has any tips on what I may be able to say. Or maybe I should say nothing at all and accept that this is just teenagers being teenagers!!!
Love and light

Re: Children struggling with the whole thing

PostPosted: Thu Feb 28, 2013 9:24 am
by Cinderella
Rose, I think this is just teenagers being teenagers! I was a bit of an eye-roller myself........
I absolutely understand your hurt and frustration having had similar experiences. My problem, I think, is that I cannot adjust my own expectations of other people. I expect them to respond like I would - even though they have failed to do so a thousand times. It is like I am incapable of learning and I have resorted to playing ridiculous mind-games to try and initiate the response that I want. It is always a waste of time.
My husband tells me that I cannot change the behaviour of other people - just my own response to it. They are very wise words. So I am really trying to expect less, then anything positive is a bonus.
I think your kids will have a change in attitude as they get older and have a greater understanding of what you are going through.
For now, I would suggest that you back off and give them time. Focus on yourself and take what you need without apology. Get your support from where it is freely given.
Now that I have written all of that down I'm going to have (another) good go at doing it for myself.
I hope this helps a tiny bit,

Re: Children struggling with the whole thing

PostPosted: Thu Feb 28, 2013 7:00 pm
by Rose
Snap!! This has sent shivers down me. I have the very same problem. I battle with expectations of others on a daily basis!.. And myhusband says exactly the same mantra."You can't change people only your reaction to them". Cinderella it's like we are twins!! One wise soul mentioned that when looking for solutions to problems, to aim to bring it to mind whilst meditating. I am going to try this. I don't know if my level of skill in meditation is developed enough but I'll give it a go. Worth trying right?
And I understand it is just the stage my twins are going through....I needed to bounce it off others to see that I am not alone. And I'm not:-)
One kind traveller told me that children just want to be like everyone else. That they want to feel normal and appear to others like a normal family too. I so get that now. It makes so much sense and has immediately washed all of the expectations away. The hurt has dissolved and transformed into acceptance.
Thanks for sharing a part of yourself Cinderella. It makes a person feel quite vulnerable at least it does me, and I just want to say thank you for the reply...
Love and light
Rose x

Re: Children struggling with the whole thing

PostPosted: Fri Mar 01, 2013 9:11 am
by catriona
I feel ill-equipped to advise on this one (not a parent) but could you maybe come to a deal with the family that for 6 days a week you promise never to mention MS (although obviously you'll still have to say if you can't do something) but on the 7th day, you're allowed to mention it and they have to listen to you?

Re: Children struggling with the whole thing

PostPosted: Fri Mar 01, 2013 3:21 pm
by Sarah D
Rose, this is a difficult but essential thing to think about.
This is a practical way that we are dealing with it.

My son, who is 14, cooks dinner once a week and my daughter, 10, cooks every other
week. It helps that they've been vegetarian since birth, though they eat meat occasionally
outside the home.
They are learning to modify the dishes, e.g add cheese to the risotto after I've taken
a helping.
I think this is helpful on many counts:

1. It's a huge help to us and our energy levels.
2. It gives them an appreciation for just how much energy goes into preparing a meal.
3. It is inherently a caring and loving thing to do, cooking for others.
4.They can learn to incorporate our dietary model which can only be good for them (and their future roommates).
I believe they are thinking about our needs in an involved way; everyone needs to eat, not just us!
5. Good practice that they'll use anyway

That said, I do think teens are going through something special. But that's not a reason to back off, perhaps
just not to force. Try to be strong and clear in who you are and what you need to do; the less you waver the
more gracefully they will grow into it and the less divided you will feel.

Good luck - we're with you!


Re: Children struggling with the whole thing

PostPosted: Sat Mar 02, 2013 9:06 am
by Rose
Thank you for your replies Catriona and Sarah....
Catriona I will make that suggestion about setting a day or perhaps even a time on the day that I may be able to discuss any M.S. issues.
I have been perhaps a little too spontaneous before and your suggestion is well worth trying.
Even though you don't have children I bet your friends who do, come to you for advice. You seem a person that thinks things through very clearly and thoughtfully....I think you would have / will be a great Mum. I would go to you for advice on my children any day:-) Thank you Catriona:-)
Sarah I think your children are amazing!! Even before the teenage years hit, my children only cooked once in a blue moon!
And I agree that cooking is an expression of love and they certainly appreciate you all the more for it.
I don't hold out much hope that that will be happening any time soon in my house hold. They both study most nights with big exams this year. That's not to say they couldn't squeeze in an occassional night...I'll make the suggestion. Thank you for reminding me of this and the many values it offers.
I hear what your'e saying about not backing off completely....we will continue to evolve as a disconnected family if I don't have a voice...know matter how tiny!
I have to honour myself or they never will. I have become quite a mouse in the family....internalise a lot of feelings and pain... I wonder whether that is normal at times....
Recently I had a treatment with a healer and she said that all of the 7 chakras were closed. It didn't surprise me because I feel like I shut down. A lot.
I became teary- eyed when you wrote " we're with you " . that means a lot to me.
Thank you for sharing what works in your family Sarah. And for reminding me to honour myself....I needed to hear that.
Thank you Catriona and Sarah from my family...
love and light
Rose x

Re: Children struggling with the whole thing

PostPosted: Sat Mar 02, 2013 11:58 am
by catriona
I hope everything goes well, Rose, please let us know how it all works out

Re: Children struggling with the whole thing

PostPosted: Sat Mar 02, 2013 8:24 pm
by Rose
Will do:-)
Love and light
Rose x

Re: Children struggling with the whole thing

PostPosted: Fri Apr 05, 2013 4:14 am
by eskimos
Hi Rose,

I can share some experience with you as I have a bit younger kids (8 and 13) but... just i case ;-)

1. I agree that cooking together is awesome experience and bond family a lot, I did it when I was dx and still doing this and kids love my cooking, which is wonderful.
2. I set up some time and discussed with them my condition, possible development etc. I gave them prior book from MS society to read (they have special books for kids). This was calming experience for them, they not afraid so much now, they understand and even try to help by obeying my orders as they know that stress is not good for MS ;-)).
3. We swap our role so I became mum and I driving kids to school, do shopping, cooking etc. My wife went to work (which is sucks but at lease we make the ends). And kids enjoy time with me, so this is a proof that dad is very important in child development.
4. You have to open up yourself to heal you body thorough mental health (if you know what I mean), I was in that stage as well but because of my wife depression I had no choice and had to overcome my fear etc to hold our family, and know I am a bit different, I talking openly about nearly everything, express myself and help my wife do the same. This post was not possible to write by myself one ya.
5. Stay positive (easiest say than do but keep trying), and "conquer" you problems and help your kids by giving them vitamin D3 ;-)).

Let the force be with you.


Re: Children struggling with the whole thing

PostPosted: Fri Apr 05, 2013 5:54 am
by Rose
I love it!! and may the force be with you too!
Thanks for your thoughts eskimos.
I think that's awesome support that you have provided to help keep your family afloat through trials and sound amazing eskimos. I'm sure your wife knows it...
My children don't cook as they are too busy studying for big exams this year, When they were your kids age they were happy to spend time in the kitchen, but now they are too busy with their studies. They do very little around the house and I don't think this is going to change any time soon.
They have been on vit D for nearly 4 years now and they are totally cool with that.
I can see that they have no interest to discuss M.S. They just want me to get on with it. I feel positive yet realistic now. This is teenagers. I just have to learn to lower my expectations of others. That's one of my life lessons I think...
Take care eskimos and a big hug to you and your family.
Love and light
Rose x