Happy New Year to All
It was a mixed holiday in our house. Bryn went to bed very late and slept very late. A true teenager. He was in a car accident with his girlfriend and three friends the same day as he attended a funeral with us for his friend who died of leukemia, in early December. These event hit him hard, they hit him where he has been traumatized already by the whole ALPS process. His girlfriend's parents were back to their hometown for Christmas and she was to follow when school got out. They could not get a flight back. She was severely concussed, had a small bleed in her brain, broke a wrist and had some numbness in her leg. She seized twice at the scene and Bryn thought she was dead for a bit, he was hysterical and trying to do CPR. :-( She came and stayed with us for four nights after we stepped in and visited her and worked with the docs on her parents behalf for 2 nights at the hospital. I can't tell you how it was to answer the phone at 6:30 in the morning and have the police on the other end, a deep male voice saying, this is the police, your son Brine, (haha :-) ), has been in an accident. Got us shaking very quickly. Brine :-) took himself in the ambulance because he wanted to be checked out and had an ultra sound to make sure his spleen was fine and he was OK. While we sat for several hours in the trauma section with his girlfriend we experienced a trauma team ready themselves for an air ambulance delivery of a car accident victim, who died right next to us. We all were all quite shaken and saddened. It was all difficult but his girlfriend is lovely and I would not have done anything else. She is feeling really fine now. This did leave us somewhat exhausted for Christmas things, though.
Brian and I walked some long walks along the beaches in and around Vancouver which were very enjoyable. We are not big on Christmas and do as little as we can get away with. We bought Bryn some presents, had what is always a difficult Christmas dinner for me, with my family. We are not the Waltons, though I love my mom and dad very, very much. Dad is 90, mom will be 87 shortly and they are amazing. Difficult childhood history though makes sibling relationships difficult. It seemed more difficult than usual this year for me - I just couldn't stand being ignored and cut out, as is the family system, by them as they always do. And their hyperness and constant me-ness is difficult to be around. I never like it but this year it hurt deeply. In spite of that we did things we love to do, Brian and I, and enjoyed a couple of warm and enjoyable parties and a really fun wedding on New Year's Eve. Bryn hung out with his friends, when not on the games, and enjoyed skateboarding, movies and playing Katane.
Well, today is the 2nd day of school being back and Bryn will not get up. Last night he went to bed at 12:45, which was way too late. You may remember we gave him freedom over his bedtime. When he went to bed he came to me and said he felt numb, empty and depressed. And he couldn't sleep. He said Autumn's death and the car accident were really bothering him. He said he is having a lot of deep fear about death and dying. And this morning he says, "why bother if we are going to die anyway."
We have a real problem here - he uses the video games to avoid himself and his feelings - plays them way too much... but that is part of his culture too, his friends do that too - it seems all kids do. But his friends have accomplished things, great guitar player maybe going to Julliard, a accomplished drummer, good marks to open doors to University. Bryn is very, very bright, very talented (no this is not a biased mom talking) but he is spinning his wheels, avoiding life with the games, avoiding himself - he is off the tracks too much because of his reactions to getting ALPS and the diagnosis process taking 5 years. His dad and I didn't know through all that what to do and I think we indulged his feelings too much. We got him and ourselves therapists, art therapy, family therapy, but he was too young to deal. Thinking back it is hard to know what we could have done differently, it feels like we did all we could. I don't know. But here we are and a change needs to take place. He needs to step up his game, apply himself, stop freaking at the first stress that comes his way, deal with himself as he is learning to with Eva and cope. It takes time to make changes but if he waits until after the end of Gr. 12 it will be much harder than if he does it now - he will have to do some night school to get the marks he needs. He is dealing with things with Eva, but has not seen her for 5 weeks, which is the longest has has gone since Sept. Usually it is every 2 weeks. He will go in 2 days. He needs to.
I have been talking to Bryn just now for awhile. He acknowledges that he made the decision when he was diagnosed with ALPS that it was really unfair and that from then on no one would be able to tell him anything. He would do what he wants when he want and do nothing anyone tells him if he doesn't want to. Hence. the volatility and rages. Well, I can truly understand that decision actually, his rage at getting a condition, but it is self-defeating and he has to change it. Perhaps now that he understands it better he can begin to change it.
Bryn is a really good kid. He's got a beautiful heart and wants to do very well. He doesn't mean to be difficult, he is just someone struggling with what life has given him. I love him so much and feel for his struggle. I will always stand right behind him in love and support. We are all on a journey to learn and live, to feel meaning in our lives, to feel valuable, to use our talents , to develop oiurselves. Bryn has had a hard struggle these 7 years - he will make it in time. I have faith.
Each time we have a difficulty like this morning we can learn from it. We don't always but I think maybe he will this day.
Whew..... Life....
I'd love to hear from you, even if your experience is different. We are isolated still with these rare conditions because we are all different. At least we can share what it is like for us, the care givers and parents, families, or those that have syndromes. I am here to share and listen. I hope you will help break the isolation we feel and maybe your own, too.
In spirit with you,
Cathy
Tuesday, 8 January 2013
Thursday, 13 December 2012
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.
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
Saturday, 8 December 2012
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
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
Thursday, 6 December 2012
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
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
Tuesday, 27 November 2012
Hi ,
Well, as result of my finger in the door accident and the resulting therapists appt. Bryn is being far more responsible. We have let him decide when to go to bed - he is going at 12:30 on a school night!! I am not happy with that and tell him I don't agree but I don't change the time. And he says to me "I know you don't like it" CALMLY! Six hours of sleep?! But he desperately needs to have the choice in this - I see that.
Our therapist says that he is too bonded. When she says that I feel guilty or angry at her. I don't think he is too bonded. I think what happened is that becasue of the trauma of ALPS and the diagnosis he was unable to take normal responsibility for his age. He would go nuts at the drop of a pin. So in this way he has reached 17 and he is delayed in his development. He is normal slothful 17 year old boy, too, but I do think he is delayed also. He is crying for freedom when what he really needs is the ability to take responsibility so that he can be more independent and trust that he will be able to manage on his own. Somehow he knows instinctively that he hasn't developed that and he feels trapped by it. He NEEDS these skils at this point. And now when we try to teach them to him he rebels because that is normal for 17 year old individuating and gaining independence. So his rebellion traps him in the corner where he is stuck with no responsibility skills. The rebellion is normal too.
We broke that trap last time at the therapist. As hurt as I was that she didn't address his nastiness to me, or even offer a kind word to me - she brilliantly got him over the hump into accepting responsibility for more freedom at bedtime. I know she couldn't be seen to ally with mom and she couldn't move him off his teenage crazy head but I wish she had said to me something like "that was a tough session. Good work mom. Are you OK?" even in private. However, nonetheless, she got him over a very important hump. He is doing things that he should be doing around the house much more readily and demanding to do things by himself rather than tossing them at me all the time and saying he is too tired or busy or whatever. He WANTS to do things. Brilliant!! Now if he would get some sleep that'd be great..... all in time.
:-)
Cathy
Well, as result of my finger in the door accident and the resulting therapists appt. Bryn is being far more responsible. We have let him decide when to go to bed - he is going at 12:30 on a school night!! I am not happy with that and tell him I don't agree but I don't change the time. And he says to me "I know you don't like it" CALMLY! Six hours of sleep?! But he desperately needs to have the choice in this - I see that.
Our therapist says that he is too bonded. When she says that I feel guilty or angry at her. I don't think he is too bonded. I think what happened is that becasue of the trauma of ALPS and the diagnosis he was unable to take normal responsibility for his age. He would go nuts at the drop of a pin. So in this way he has reached 17 and he is delayed in his development. He is normal slothful 17 year old boy, too, but I do think he is delayed also. He is crying for freedom when what he really needs is the ability to take responsibility so that he can be more independent and trust that he will be able to manage on his own. Somehow he knows instinctively that he hasn't developed that and he feels trapped by it. He NEEDS these skils at this point. And now when we try to teach them to him he rebels because that is normal for 17 year old individuating and gaining independence. So his rebellion traps him in the corner where he is stuck with no responsibility skills. The rebellion is normal too.
We broke that trap last time at the therapist. As hurt as I was that she didn't address his nastiness to me, or even offer a kind word to me - she brilliantly got him over the hump into accepting responsibility for more freedom at bedtime. I know she couldn't be seen to ally with mom and she couldn't move him off his teenage crazy head but I wish she had said to me something like "that was a tough session. Good work mom. Are you OK?" even in private. However, nonetheless, she got him over a very important hump. He is doing things that he should be doing around the house much more readily and demanding to do things by himself rather than tossing them at me all the time and saying he is too tired or busy or whatever. He WANTS to do things. Brilliant!! Now if he would get some sleep that'd be great..... all in time.
:-)
Cathy
Friday, 23 November 2012
Hi,
Last night Bryn had what is becoming thankfully very rare, - a meltdown. We are asking him to be off his video games and Skype 40 minutes before bed so he can wind down. He is not happy about this - all his friend are on until they go to bed and he wants to do the same. Also he made a deal with me to stay up late last Friday night if he got off games at 10:40 p.m. this week. He doesn't like to keep his deals. When I told him we would turn the Internet off if he didn't get off he blew up.
He started slamming his bedroom door which is awful -we live in a townhouse and it is very disturbing to the neighbors. I put my hands on the door to stop the slam from being so hard and stupidly got my fingers caught in the door as it slammed. One nail was pulled right off and the other is very bruised. Bryn didn't mean to do this, but these are the things that can happen when someone goes ballistic.
Bryn was very upset and this became a good moment, after I had stopped writhing in pain for him to look at himself some more. Why is he so attached to the games and being on multi-player until bedtime that he would go off the deep end? What is going on deep inside that he is this desperate? I know he uses the games as a kind soothing mechanism for his anxieties around feeling different and afraid because of ALPS. I am not happy about this but am hoping the therapy he is doing will eventually move him to get off this by himself, as he heals emotionally.
Now I have been to emerg. and had an x-ray and my finger tip is fractured. I have to give up my clarinet playing for the time being, my orchestra concert on Dec. 1 which happens to include a piece that I fell in love with at the age of 9 or 10, the Grand Canyon Suite, which led to my love of orchestral music - it felt so full circle. My quintet is starting up again after 6 weeks off and I can't do that. These are my passions, loves and where my friends are, the things that I do. Teaching will be difficult too, without being able to play my clarient It's a real bummer.
Well, no one said parenting is easy. PArenting my son with the complications of ALPS is even harder. This was certainly an accident. I really love this boy. Damn it! Life....
Cathy
Now I have been to emerg. and had an x-ray and my finger tip is fractured. I have to give up my clarinet playing for the time being, my orchestra concert on Dec. 1 which happens to include a piece that I fell in love with at the age of 9 or 10, the Grand Canyon Suite, which led to my love of orchestral music - it felt so full circle. My quintet is starting up again after 6 weeks off and I can't do that. These are my passions, loves and where my friends are, the things that I do. Teaching will be difficult too, without being able to play my clarient It's a real bummer.
Well, no one said parenting is easy. PArenting my son with the complications of ALPS is even harder. This was certainly an accident. I really love this boy. Damn it! Life....
Cathy
A Breakthrough
"Hi,
We took Bryn to the therapist last night to work out things around my injured finger. He was very upset. she asked what happened and I explained what led to the slamming doors. And from there she led to why he was so angry that he was slamming doors. He said because his mom "always", "never", "totally" "thinks she knows everything" "will never change" "is a control freak" keeps him in a glass bowl and mocks him"-- all very black and white exaggerated comments that hurt me quite a bit because they are just teen drama and not true. Eva worked with that and eventually moved him towards a version of Freedom, which is what he was crying for more of (esp. not to have a bedtime on school nights) which included taking more responsibility. He thought that was garbage at first but suddenly changed his mind. He agreed to get himself up in the morning, take his dishes to the kitchen, turn lights of, clean his own room etc, all of which he has steadfastly refused to do even having been asked a LOT, like maybe a million times. His condition left him so stressed and upset that anything extra has been too much, including responsibilities - in this way he is less mature than his counterparts at school. Well, he stayed up until 12:30 a.m. which is way too late and that upset me, but I had agreed to this so I had to stick to the plan....I woke up in the night and was really upset, couldn't sleep. But he DID get himself up for the first time ever. He made his breakfast, cleaned up, brought the paper in and got to school all by himself. We actually stayed in bed until after he left having slept not very well for agitating about his late bedtime. Hallelujia!!
Right after the appt. with the therapist we went out for pizza. I was really hurt that Eva had not called him on his hyper-exaggerated sense of victimization - he was really in his teen hormone mind...But he came up right away and said "I'm sorry Mom. I love you" I asked him why didn't you say that up in the therapy room. He said he didn't know - then after awhile, that he felt pushed into a corner and really scared - I think he means in general. I was hurt still that Eva had not called him on this but in retrospect I believe she had to work with what she had and she did get us around to an agreement to him having this freedom at bedtime which is so precious to him, for living up to his responsibilities which is so necessary to us and him. It worked!! Fingers crossed that it holds!
This has been really hard. He didn't learn this responsibility stuff between 10 and 17 yrs. because of the pain and trauma of the ALPS and diagnosis. He couldn't add anything else with out major tantrums. So he is not mature in this way and he cannot take it from me or his dad at this age now as he is needing space and to separate. But with Eva, he can take it. We are making headway... ahhhhh! :-)... now it just has to stick! I think it will be a bit bumpy here and there, realistically, but it is definitely going in the right direction.
Cathy
We took Bryn to the therapist last night to work out things around my injured finger. He was very upset. she asked what happened and I explained what led to the slamming doors. And from there she led to why he was so angry that he was slamming doors. He said because his mom "always", "never", "totally" "thinks she knows everything" "will never change" "is a control freak" keeps him in a glass bowl and mocks him"-- all very black and white exaggerated comments that hurt me quite a bit because they are just teen drama and not true. Eva worked with that and eventually moved him towards a version of Freedom, which is what he was crying for more of (esp. not to have a bedtime on school nights) which included taking more responsibility. He thought that was garbage at first but suddenly changed his mind. He agreed to get himself up in the morning, take his dishes to the kitchen, turn lights of, clean his own room etc, all of which he has steadfastly refused to do even having been asked a LOT, like maybe a million times. His condition left him so stressed and upset that anything extra has been too much, including responsibilities - in this way he is less mature than his counterparts at school. Well, he stayed up until 12:30 a.m. which is way too late and that upset me, but I had agreed to this so I had to stick to the plan....I woke up in the night and was really upset, couldn't sleep. But he DID get himself up for the first time ever. He made his breakfast, cleaned up, brought the paper in and got to school all by himself. We actually stayed in bed until after he left having slept not very well for agitating about his late bedtime. Hallelujia!!
Right after the appt. with the therapist we went out for pizza. I was really hurt that Eva had not called him on his hyper-exaggerated sense of victimization - he was really in his teen hormone mind...But he came up right away and said "I'm sorry Mom. I love you" I asked him why didn't you say that up in the therapy room. He said he didn't know - then after awhile, that he felt pushed into a corner and really scared - I think he means in general. I was hurt still that Eva had not called him on this but in retrospect I believe she had to work with what she had and she did get us around to an agreement to him having this freedom at bedtime which is so precious to him, for living up to his responsibilities which is so necessary to us and him. It worked!! Fingers crossed that it holds!
This has been really hard. He didn't learn this responsibility stuff between 10 and 17 yrs. because of the pain and trauma of the ALPS and diagnosis. He couldn't add anything else with out major tantrums. So he is not mature in this way and he cannot take it from me or his dad at this age now as he is needing space and to separate. But with Eva, he can take it. We are making headway... ahhhhh! :-)... now it just has to stick! I think it will be a bit bumpy here and there, realistically, but it is definitely going in the right direction.
Cathy
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