Hi,
Bryn has discovered he needs 30 hours of work experience or volunteering to graduate from Gr. 12. He was going to walk into West49, a skateboarding, clothing shop, where he has bought all of his clothes for many years, and ask if they are hiring. One of his friends was hired there just recently. But he went to the mall and didn't go in and ask. He came home and said he can't work now or through college because he catches so many illnesses. He would miss too much work and be fired. Also his energy levels are less than normal and I don't think he can add to his load of school demands. He needs to rest on weekends. He really wants to work, to experience this sense of independence, this right of passage. But again he is foiled by ALPS related issues.
I could see his heart breaking, he hardened up, said he didn't care about anything. He doesn't want to feel this. It seems he makes 2 steps forward and then gets hit back again. It breaks my heart to see him hurting again.
I want him to be able to work but when he said that he couldn't I just went blank. Is he right? How can he hold a job when he is sick so often, this year for 2 or 3 weeks at a time. His therapist works with the body and energy and she says his core vital energy is almost non-existent. He hypes up to be with his buddies, afraid he won't be able to keep up and belong, and uses so much energy doing this. He is getting aware of this and trying to be calmer. His resting heart rate is 120 a lot of the time, which is nuts and takes a lot of energy. This is fear of letting go for fear there will be nothing, nobody on the other side. He has made such strides in this recently and we are working on filling his energy "tank". I believe we can do that - so does he. But then this job thing comes up and he feels beat down again by his condition. I am overwhelmed by sadness for him. I can barely think about it myself or understand what he should do, can do.
I spoke to Canadian civil liberties people last Fall and by law he cannot be denied a job because of his condition. But if he is absent a lot and it is deemed to create hardship for the company they can get out of the law.
Perhaps he can work just very part time, super-casual, on call. He is not too open to creative solutions right now. It is overwhelming, as first job application, to have to explain himself and ask for creative, flexible working hours. His life experience so far doesn't prepare him for this. We can try but he doesn't want to talk about it right now and as we are his parents we don't hold much credibility at this point. He needs to find his independence and working is one of the ways to do it. He is disappointed, frustrated, hurt and afraid - this would be his first work experience and he doesn't want to be different, which is another issue for him generally. He also doesn't understand the possibilities and is too afraid to open his mind right now.
I don't know if or what the solution is at the moment either. I want to call West 49 myself and ask them what they could work out, just theoretically, but Bryn is 17 and needs to get mom out of the picture. I can't get a job for him.
Has anyone ever been here job wise? Did you find a solution? What was it?
Cathy
This ALPS continues to be a big challenge and keeps punching our beautiful, vibrant, bright son in the nose. It is not fair.
Thursday, 31 January 2013
Friday, 18 January 2013
Comments
Hi There,
I had one comment early on, when I started this blog, from an ALPS mom. It was amazing because we had never ever talked with or met another ALPS patient. It was really amazing to speak for a moment with another mom of a child with this rare syndrome. It made me cry. Though I am very sorry her child too has ALPS, and quite severely, too.
I haven't had any other comments or people sharing - 407 visits, and only 1 comment. I've read that the response rate is 1 in 1000 visits. Wow, that's low.
I was really hoping for others to share with me. I know we have differences - there are so many AI syndromes around but I think the human experience of being diagnosed with a disease must be similar on some levels, the struggles in trusting self and life. The parenting struggles or looking after kids with a syndrome may vary but there must be similarities, too. How do you help your kids feel good about themselves? Encourage them to keep going and believe in their abilities? How do you offer the child support and still encourage them to keep moving forward?
It doesn't have to be the same. Or maybe you've felt isolated too, - no one to talk to who has experienced similar things. Maybe not. I am hear to share, listen, support and receive support just in the sharing with others.
I would welcome to hear from you. Please feel free use this space to share your experience - I will respond to all comments and posts. I hope you will feel it is a safe place to share, that you will be heard and respected. I will not accept others disrespecting your comments or posting rudely or with no sense of personal responsibility to their own words. Kindness, acceptance, honesty and a hand in support are what I want to extend and ask others to extend.
In spirit,
Cathy
I had one comment early on, when I started this blog, from an ALPS mom. It was amazing because we had never ever talked with or met another ALPS patient. It was really amazing to speak for a moment with another mom of a child with this rare syndrome. It made me cry. Though I am very sorry her child too has ALPS, and quite severely, too.
I haven't had any other comments or people sharing - 407 visits, and only 1 comment. I've read that the response rate is 1 in 1000 visits. Wow, that's low.
I was really hoping for others to share with me. I know we have differences - there are so many AI syndromes around but I think the human experience of being diagnosed with a disease must be similar on some levels, the struggles in trusting self and life. The parenting struggles or looking after kids with a syndrome may vary but there must be similarities, too. How do you help your kids feel good about themselves? Encourage them to keep going and believe in their abilities? How do you offer the child support and still encourage them to keep moving forward?
It doesn't have to be the same. Or maybe you've felt isolated too, - no one to talk to who has experienced similar things. Maybe not. I am hear to share, listen, support and receive support just in the sharing with others.
I would welcome to hear from you. Please feel free use this space to share your experience - I will respond to all comments and posts. I hope you will feel it is a safe place to share, that you will be heard and respected. I will not accept others disrespecting your comments or posting rudely or with no sense of personal responsibility to their own words. Kindness, acceptance, honesty and a hand in support are what I want to extend and ask others to extend.
In spirit,
Cathy
Worried
Hi,
Well, Bryn has been sick with a bad cold, away from school for two weeks, after getting a second bug early this week. I have a black dread in my heart about his missing school. This isn't new. It is winter and this is his pattern but this year he has missed two or three week in a row. Other years only 1 week at a time. I don't know why. More pressure in Gr. 12, imminent "future" with decisions about college, work etc. maybe. It is a very stressful year in many respects. And as always the ALPS magnifies things. What will he be able to do with a life that involves being sick so much? Will he get through college?
I keep asking him to consider that he can do an hour of homework, slowly, slower than usual, when he is sick. He has energy to play the video games most of the day and skype with his friends in the evening, even though he is sick. Maybe he can't do homework when he is in the early stages of the illness but surely as he feels a little better he can. But he won't. He doesn't care. He has no work ethic. His only impulse seems to be to play games, in the moment, in the very second of each game - never thinking about the future at all.
Right now I see a kid who won't take charge of his life, who doesn't care, won't care about his schooling. Oh, on some level he does but he doesn't have a sense of commitment to get things done, to make his return to school after an illness easier by trying to keep up even just a little. He wants to take the easy way out which is to do nothing, to not face the hard stuff.
I am so worried right now. How will we turn this around? Can we? We have to.
The ALPS has killed some basic faith in life, killed his confidence in himself, in his ability to have a future, to build a life as an adult. He is just 17, and a real teenage boy - it's not easy being 17 never mind complicating it with an autoimmune syndrome. It seems so screwed up right now. He has had to deal with things no kid should have to. In some ways he is ahead of his years, in understanding and wisdom. In other ways he is behind in maturity, because of ALPS, because of things we have blown as parents, indulging him a bit too much in general and because of ALPS.
His marks are quite good - he says he works really hard. He feels that to be true. I think he can do a lot more and still have plenty of free time. He says he is tired. Well, he does have chronic low blood levels, and the massive spleen which causes his marrow to produce blood cells 50% faster than average. But his doctors say he shouldn't have energy issues - really that makes no sense to me. It makes sense to me that he wouldn't feel top notch. But this is so rare, he is 1/700,000,000 and we have no one to compare with, to talk to. I don't know if his energy is lower than average. I know what Bryn says, but he has no comparison either. If he is more tired he still refuses to go to bed at a decent time, he eats badly - very few veggies. things that could help, he won't do. He is 17 and wants to be like his friends and like his stage dictates - junk food, late nights, not thinking about well-being. It doesn't work for him and in the end he just shows himself that he can't feel well, and then he fears for his future.
I really don't' know how to turn this around. I do think it will take time and sometimes it seems we are making progress. I think we really are, but right now it feels like we have made no progress at all. . I want it to happen NOW, so he has what he needs to open doors for himself after Gr. 12. But he has these other emotional concerns that take up his time and cause him to struggle so hard. Fears of death, working out the trauma from those 5 years of diagnosis, finding his faith in himself and life again - as he does from time to time. But not right now and I am scared for him. I want him to care, to make the extra effort, it wouldn't take that much. But I can't get him to care, to see that his mind set is self-defeating, that maybe there is another way to approach all this, to get his schooling going, to research college, to believe he can do these things, to apply himself with care and commitment.
It's not easy where we live either. there is a high Asian population with a very different work ethic and the entrance requirement to our local universities, 2 of them, are a 92% average as a result. His high school is 90% Asian. He struggles with feeling like a "dumb" white guy in comparison to the standards that are set by many of the Asian kids. He is not dumb at all, his teachers know this, but his is just another nail in his confidence. He doesn't have the context, wisdom or experience to put this all in its place.
Well, I thank you for listening, if you read this. I am scared right now and overwhelmed by what seems like insurmountable problems with damage to Bryn's general confidence in himself and life that hampers him deeply. He is in is Gr. 12 and I want him to be able to actualize himself fully - he is bright and talented in so many ways and I fear he won't ever figure out how to take charge of his own life rather than be a victim of ALPS.
In spirit with you,
Cathy
Well, Bryn has been sick with a bad cold, away from school for two weeks, after getting a second bug early this week. I have a black dread in my heart about his missing school. This isn't new. It is winter and this is his pattern but this year he has missed two or three week in a row. Other years only 1 week at a time. I don't know why. More pressure in Gr. 12, imminent "future" with decisions about college, work etc. maybe. It is a very stressful year in many respects. And as always the ALPS magnifies things. What will he be able to do with a life that involves being sick so much? Will he get through college?
I keep asking him to consider that he can do an hour of homework, slowly, slower than usual, when he is sick. He has energy to play the video games most of the day and skype with his friends in the evening, even though he is sick. Maybe he can't do homework when he is in the early stages of the illness but surely as he feels a little better he can. But he won't. He doesn't care. He has no work ethic. His only impulse seems to be to play games, in the moment, in the very second of each game - never thinking about the future at all.
Right now I see a kid who won't take charge of his life, who doesn't care, won't care about his schooling. Oh, on some level he does but he doesn't have a sense of commitment to get things done, to make his return to school after an illness easier by trying to keep up even just a little. He wants to take the easy way out which is to do nothing, to not face the hard stuff.
I am so worried right now. How will we turn this around? Can we? We have to.
The ALPS has killed some basic faith in life, killed his confidence in himself, in his ability to have a future, to build a life as an adult. He is just 17, and a real teenage boy - it's not easy being 17 never mind complicating it with an autoimmune syndrome. It seems so screwed up right now. He has had to deal with things no kid should have to. In some ways he is ahead of his years, in understanding and wisdom. In other ways he is behind in maturity, because of ALPS, because of things we have blown as parents, indulging him a bit too much in general and because of ALPS.
His marks are quite good - he says he works really hard. He feels that to be true. I think he can do a lot more and still have plenty of free time. He says he is tired. Well, he does have chronic low blood levels, and the massive spleen which causes his marrow to produce blood cells 50% faster than average. But his doctors say he shouldn't have energy issues - really that makes no sense to me. It makes sense to me that he wouldn't feel top notch. But this is so rare, he is 1/700,000,000 and we have no one to compare with, to talk to. I don't know if his energy is lower than average. I know what Bryn says, but he has no comparison either. If he is more tired he still refuses to go to bed at a decent time, he eats badly - very few veggies. things that could help, he won't do. He is 17 and wants to be like his friends and like his stage dictates - junk food, late nights, not thinking about well-being. It doesn't work for him and in the end he just shows himself that he can't feel well, and then he fears for his future.
I really don't' know how to turn this around. I do think it will take time and sometimes it seems we are making progress. I think we really are, but right now it feels like we have made no progress at all. . I want it to happen NOW, so he has what he needs to open doors for himself after Gr. 12. But he has these other emotional concerns that take up his time and cause him to struggle so hard. Fears of death, working out the trauma from those 5 years of diagnosis, finding his faith in himself and life again - as he does from time to time. But not right now and I am scared for him. I want him to care, to make the extra effort, it wouldn't take that much. But I can't get him to care, to see that his mind set is self-defeating, that maybe there is another way to approach all this, to get his schooling going, to research college, to believe he can do these things, to apply himself with care and commitment.
It's not easy where we live either. there is a high Asian population with a very different work ethic and the entrance requirement to our local universities, 2 of them, are a 92% average as a result. His high school is 90% Asian. He struggles with feeling like a "dumb" white guy in comparison to the standards that are set by many of the Asian kids. He is not dumb at all, his teachers know this, but his is just another nail in his confidence. He doesn't have the context, wisdom or experience to put this all in its place.
Well, I thank you for listening, if you read this. I am scared right now and overwhelmed by what seems like insurmountable problems with damage to Bryn's general confidence in himself and life that hampers him deeply. He is in is Gr. 12 and I want him to be able to actualize himself fully - he is bright and talented in so many ways and I fear he won't ever figure out how to take charge of his own life rather than be a victim of ALPS.
In spirit with you,
Cathy
Tuesday, 8 January 2013
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
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
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