Angels do walk among us

Hi,

Bryn had a tough time the other night after a therapy session. Eva took him to a quieter place than he is normally in himself. She says his resting heart rate is quite high so she sat him down and slowed him down. I think now that he is always on-line, on games, on texts because he is revved up to avoid another level of depression and fear that is lurking below the surface. He came home from that session, the first one his dad has accompanied him on and had major blow-up, refused to go to bed, staying up until 3:30 a.m.to piss us off and refusing to talk to us. He left poison pen letters of hate, at our computers. Brian and I were so upset, no one got hardly any sleep. It was a very rough night. I don't cope well at these times, my anxiety level hit 9/10, stomach aches and Brian felt similarly.

In the morning we talked with him and I could see that he had touched a deeper level of pain and fear in himself and was reacting to that. He agreed and could see this a little more clearly. He skipped school because he was unable to get up. His English teach, who is an amazing woman and who he likes a lot, e-mailed me and said she was worried because he had missed English again. She said she was going to talk with him when he came in the afternoon and turned in his homework. She did that - she was amazing. She told him she thought he was not the same enthusiastic, inspired person who started in Sept. And asked him what happened. He said the 3 week long illness had left him discouraged and that he didn't like plays much. She has rheumatoid arthritis and she spoke to him of her journey, told Bryn that he would learn to live with himself. Bryn said he didn't want to live with this, he wants to be like everyone else. She told him she understood. She said she and he are not quite like everyone else and that they have to learn to live with that. She said sometimes she can't go with her friends because her immune system is low. She said she is 45 and still learning to live with her AI syndrome. She told him not to give up and to keep doing therapy.

Bryn came home with a very deep smile in himself. I feel she is a true blessing. He has not had anyone to speak to of this who can relate from a similar place with similar feelings, before this year. Now he has his girlfriend and this wonderful woman. I sent her  the following e-mail:

"Thank you for talking to Bryn.

You are like an angel come to show him he is not alone and that

people cope as best they can and keep growing. Until this year he

hasn't had anyone who can relate to him from their own experience -

now you and his new girlfriend both - what blessings. It was a very

long dry spell to not meet anyone who had similar feelings for

similar reasons..... You are truly a gem, as a teacher and as a human

being.

Thank you again, Cathy

Blessing to all of you out there, Angels do walk among us,

Cathy

Losing Trust in self, body and life with AIS and growth

My son has been sick this week. As with every time he is sick he refuses to really rest. He stays home from school but he plays video games most of the time. When school gets out he is skyping and playing with his friends. This week I heard him being extra loud and raucous one afternoon and evening. And yet when I enter his room he says he feels terrible. I ask him how plays the games when he feels terrible, how he talks with his friends for hours when he feels terrible. He says the games take no energy - I disagree - we have had this same conversation a thousand times. Why don't we limit him you ask? We are his bloody parents - well, you try and limit  him on this - it just won't work. Wimp, you call me..... maybe. It's the path we've taken - too many volatile times, too much chaos.... it's best this way. he will ahev to figure it out for himself - he is naturally a very independent thinker and needs to find things out for himself. Just desserts maybe - I am the same.:-&

This week I came to his room again and said the same old things but I was very clear  in myself that in refusing to rest he is rejecting his own body and its needs, his self AND that his faith in life was damaged badly when he got hit with ALPS. So we went through the same song and dance "me - get off, Bryn no- it doesn't take any energy etc"..... But this time I put my arm around him and said "you have lost trust in your body, you hate it and refuse to give it what it needs and you don't trust life because it hit you with ALPS and the whole experience of diagnosis. You will not get well as fast as you want if you don't rest. You can't fight your physiology - you need to rest." He had been upset early and crying because he is sick of being sick so there was a little chink in his armor and what I said got through.

Late that day at bed time he was feeling down again about being sick and I repeated myself - he asked to lie with me and have some support, - he put his head on my shoulder and lay against me - and I told him he is more normal than he thinks, his body is stronger than he thinks, many people are sick right now - it is not all ALPS fault, and that he needs to find his faith in life again, in himself. He seemed to really get this. He is growing up.

The next day he was still unwell, but he rested and stayed off the games - though his girlfriend was here for awhile so his motivation was stronger :-). still he is getting it slowly but surely he is finding his faith in life, himself and his body again... he si starting to see how this whole process of getting syndrome has twisted his view of things. That he can trust again.

:-) Sometimes we make progress.
Cathy

Video games and youth

Hi,

My son plays a lot of video games, hours most days. When he isn't on the games, skyping/doing multi-player and connected with his friends, he is texting what seems like almost constantly. None of this feels good to me - in fact in my gut it feels really messed up. His friends are doing the same thing.  They are hardly ever alone. If we try to limit is we are faced with nuclear explosions. Bryn is a total extrovert - on the scale of extrovison (sounds like a spy technology!) he is off the scale on the high end. I love that he has a big circle of friends and has such a great sense of belonging. He often is out with his friends and enjoys himself greatly with them - many he has known for 10 years. He is different than his father and I in this - we are extroverted but not extroverts in how we recharge - we are introverts. Bryn recharges WITH people. That said, though, he is almost NEVER alone. Is this normal? Do others see this?

I see that this is how his generation is or at least his friends are, but I also know that Bryn hides from his pain by playing games for hours. He has a deep fear he is different than others because of his ALPS, which is also magnified by his age, 17, when they are all so concerned about how they fit in. I call it addiction. I don't believe anyone doing anything for so many hours a day, so frequently can be anything but addicted. It seems crazy to me. And I observe, though, Bryn denies it, that he is more aggressive and FAR less patient when he is on the games or just off the games, in his communication with us. He brings the aggression of these very competitive and highly aggressive/violent games into the world after he leaves them, for a time. I am sure ALPS and the trauma of all of that contributes to his great need to be on these games with his friends and by himself too. But the games seem to be addictive in themselves, too, especially for males. And everyone in his circle seems to be on all the time too - peer pressure seems a big contributor too.

ALPS seems to magnify everything times 5.  Does anyone else have concerns about these games?

We are older parents, I was 41 when Bryn was born, Brian was 43. I am also rather revolutionary - I don't like mass culture, I don't participate in it or have a great deal of respect for it. We didn't get Bryn Game-boys or any video type games at all in his early elementary years, hoping to keep him off of them. Well, Good Luck with that, - it's an avalanche to deal with!!! When Bryn was diagnosed with ALPS he struggled with his sense of loss and of belonging and being different and having no video games became too much for him - he felt different in too many ways. At the age of 10 we gave in and got him a Game-boy and eventually an x-box and off he went into the virtual world. Well, here we are. I hate it - the constant use of them, the violence. I worry about his use of them. He tries to be off part of the time, sometimes, as he has discussed with us and his counsellor, but most of the times he doesn't try at all.

As I write I think it cannot be easy for a kid who wants to be like everyone else to have a mom who is out of the box. I am not weird, don't get me wrong... though I did put purple in my hair, tastefully, of course, recently :-).  Still, he is bombarded with mass culture, and a kid who just takes it all in, doesn't have nor want discretion yet, and his mom is a visionary and out of the box - can't be easy, eh?! Well, maybe I just figured something out - I need to respect HIS culture while espousing my own views - he is not an in the box guy either, his life has shaped him, ALPS and family,  but he is not ready or willing at this age to be anything but in the box...... I think I need to approach him a bit differently, perhaps that will be easier for him.

Let me know what you think about video games, constant connectivity, and kids never being alone, parenting. Whatever else comes out of your reading this. What is happening with your youth, kids, yourselves?

Thanks for reading - I  hope to hear your thoughts and comments!
Cathy