Hi,
It's been quite awhile. Lots has happened, most of it really good.
Brian and I went to Italy for a month this summer leaving Bryn alone. We were anxious about doing it but it turned out so well. Bryn stepped up and took care of things very well, even while using our home as a hostel for his friends. That worried me a bit but when we returned we were rewarded for our faith in him to see the house in great shape, he and the cats in great shape. (there were a couple of broken things, just small items). He loved it and it was a real win for all of us.
In September Bryn started University at Capilano U, taking the film program. He was 1/120 chosen out of 400 applicants and is doing extremely well. Loves it passionately. He gets up at 6:30 a.m. to take a 90 min. busride. If you knew Bryn, you'd realize how amazing this is. He hated mornings during high school, could hardly get out of bed, but his love of what he is doing makes him continue to do whatever it takes, his marks are top of the class. But the best thing is that he is doing exactly what he wants to do and realizing himself fully and happily. After years of minimum progress ins school due to anxiety and illness , he is getting 90% plus and not missing any school. He has not been sick for months. We are now certain that a lot of what seemed like illness was depression and grief about getting hit with an AI syndrome. He is over that now, using and sharing his experience as inspiration.
Occasionally he gets afraid, not often, but of course we support and listen to him, and he moves on. Occasionally he gets a "real" illness, with real symptoms and we realize again he was depressed and overwhelmed. We worked hard as did he, emotionally, to support him and get him counselling and he managed to recover from the grief and move on. There were many days, months, even years, I didn't know if he would move on, he was so stuck. We just put one foot in front of the other and kept going, faith. Faith, to us meaning, believing in that which we could not prove. Believing in an emotionally healed and happy Bryn. Loving him even though it was so difficult at times. He stills sees Eva, our counsellor, once a month. He loves checking in with her and she makes sure his body is balanced and trauma is low. He remains very self-aware, an amazing thing for such a young man. This will hold him for life.
It is amazing, beyond words, to be where we are now. To see him happy, passionate, following his dreams and realizing them. To see him unafraid, socially active and excited, and doing all that he wants to for his future.
Good news!
Best wishes to all,
Cathy
Friday 29 November 2013
Thursday 18 April 2013
Things are great.
Hi there,
I haven't written lately. Things are going very well. Bryn is in L.A. for 5 days on a band trip this week, and very excited to room with his 5 closest friends and see disneyland and Universal Studios.
In the past few months Bryn has really found his stride. Bryn applied to, University to do a Bachelors in Motion Picture Arts. His passion is film. He received wonderful references from two of his teachers. My gawd, he has fabulous teachers this year. Fabulous human beings. Truly.
Bryn took Pre-calculus 11 last year and almost failed the first term because of his high number of absences and his general hatred of math. Hi teacher was insane :-& also and that was a problem. LOL! So he withdrew and began the course, doing on-line learning, instead. He was supposed to finish last June but in his usual procrastinating way he didn't. Procrastination was only part of the problem, though - he was still depressed and anxious, not believing in himself, feeling very upset up about his ALPS. He did tutoring all the rest of the year, though, weekly, as well as this year, until last week. Recently he wrote the mid-term and got 80% and then the final and again got 80%. With the 52% from his in class experience he gets 76%!! If you knew Bryn, you'd realize how amazing this all is. He not only passed the course with flying colours, he learned to apply himself, to learn, to work methodically and to achieve something that is difficult for him and do it well. It is a super-hot win for him. And it builds his confidence in big ways.
Previous years, he consciously managed his time and work so he got 50% or maybe 57% in his courses, moderating his efforts becasue he misses so much school. Hi school counsellor felt it was amazing that he even passed. But he is not a 50% guy. He is very, very bright. And it is amazing to see the growth, the comfort with himself, his clarity about what he wants and his efforts improve. Now he is who he is instead of a kid miserable and terrified with an autoimmune syndrome.
He is still working out at the gym several days a week and with this new found happiness and calmness, plus the successes, he is not getting viruses all the time either. It is amazing.
Last night he wrote an IQ test on-line. I know these things have limited value ... but he got 133. He came and said to us that he was really starting to believe he is smart. We all knew that, including his teachers, he was just spinning his wheels in trauma and fear. He isn't doing that anymore and if he does he is aware and we can nip it in the bud quickly.
Hallelujah!!!!!!
Cathy
I haven't written lately. Things are going very well. Bryn is in L.A. for 5 days on a band trip this week, and very excited to room with his 5 closest friends and see disneyland and Universal Studios.
In the past few months Bryn has really found his stride. Bryn applied to, University to do a Bachelors in Motion Picture Arts. His passion is film. He received wonderful references from two of his teachers. My gawd, he has fabulous teachers this year. Fabulous human beings. Truly.
Bryn took Pre-calculus 11 last year and almost failed the first term because of his high number of absences and his general hatred of math. Hi teacher was insane :-& also and that was a problem. LOL! So he withdrew and began the course, doing on-line learning, instead. He was supposed to finish last June but in his usual procrastinating way he didn't. Procrastination was only part of the problem, though - he was still depressed and anxious, not believing in himself, feeling very upset up about his ALPS. He did tutoring all the rest of the year, though, weekly, as well as this year, until last week. Recently he wrote the mid-term and got 80% and then the final and again got 80%. With the 52% from his in class experience he gets 76%!! If you knew Bryn, you'd realize how amazing this all is. He not only passed the course with flying colours, he learned to apply himself, to learn, to work methodically and to achieve something that is difficult for him and do it well. It is a super-hot win for him. And it builds his confidence in big ways.
Previous years, he consciously managed his time and work so he got 50% or maybe 57% in his courses, moderating his efforts becasue he misses so much school. Hi school counsellor felt it was amazing that he even passed. But he is not a 50% guy. He is very, very bright. And it is amazing to see the growth, the comfort with himself, his clarity about what he wants and his efforts improve. Now he is who he is instead of a kid miserable and terrified with an autoimmune syndrome.
He is still working out at the gym several days a week and with this new found happiness and calmness, plus the successes, he is not getting viruses all the time either. It is amazing.
Last night he wrote an IQ test on-line. I know these things have limited value ... but he got 133. He came and said to us that he was really starting to believe he is smart. We all knew that, including his teachers, he was just spinning his wheels in trauma and fear. He isn't doing that anymore and if he does he is aware and we can nip it in the bud quickly.
Hallelujah!!!!!!
Cathy
Tuesday 26 February 2013
Things are generally going well with a few bumps for spice :-)
Hi
Things continue to go generally quite well. Bryn has started working out at the gym with a few of his friends and has developed some pretty impressive arm muscles.I am hoping this will support him to be generally healthier, too, not to mention giving him some bragging rights!! He even goes alone if his timing doesn't work with his friends. He's never done much on his own and I think this shows some quite healthy, new, basic level of comfort with himself.
Recently he said he was glad he had ALPS because it makes him who he is. He say he wouldn't be the same person if this hadn't happened. See, self-acceptance. That's been hard won and a long time coming.
There are bumps too, though. Well, this is life. We all have bumps though we spend a lot of time trying to pretend we are as all-together as those Hollywood stars seems to be. all the world's a stage, they say. I hope this blog is a place we can be real about the bumps.
Yesterday Bryn had one of those days when he couldn't get out of bed. Partly I think it was that he has not been getting enough sleep to support this muscle-building but even more I think he gets overwhelmed about what he is going to do in the future and trying to figure college out. He lazed around saying he felt energy-less and a bit depressed most of the day, after sleeping until 2:00 p.m. And in the early evening he began looking again at the University program that interests him and by the end of the night was the clearest he has ever been about what his plan is. This getting energy-less is his pattern when he is emotionally overwhelmed. And there is a lot of anxiety this year. Having an AI syndrome magnifies his fears and anxieties. I get really worried on these days, a dread in my heart. He came out of it pretty fast though - by this morning he was back to normal. That's growth, too.
Occasionally he blows off steam in his old pattern of booming voice and abuse. But he apologizes quickly -- often getting triggered again quite quickly and apologizing again etc. This doesn't happen too often and he knows himself now so he can catch himself way better. For sure ALPS has taught him about himself to a much deeper and broader degree than if he had not had this happen.
I know he has been lucky that he is mild. but in another way that has been his torture - he is almost normal, he looks normal, his illness is invisible, but HE IS NOT "NORMAL". He wants to be normal more than anything. I wonder how it is for any of you put there with an AI syndrome - not so lucky. How are you coping? And for those who are similar - how are you?
I can't stress enough the value of a good therapist with skills in dealing with trauma, EMT to release old trauma, really good body work that gets down to the nervous system and calms it down in the moment. Let's face it, it is traumatic to have a chronic illness. It affects the sense of self, hope and dreams for the future, daily life. It is scary, it can be painful and isolating. Bryn has gained so much from seeing our therapist. She is a complete gem, very skilled, open of heart, accepting, loving. Don't hesitate to take yourself to see someone. Perhaps there can be a silver lining in the cloud of having an AI syndromes.
There's plenty I don't know, so many different syndromes - if you want to share it here, that would be OK with me. I'd like to start a dialogue - sharing and talking are also good therapies, finding support with each other. I am the parent of someone with an AI syndrome - I know I don't have one, but I have been intimately involved all the way along. And it has hurt me to see my son scared, suffering, traumatize, anxious and depressed. Not thriving at all. I've been there. I hope others will share here too.
The light at the end of each tunnel is different, the tunnel is different, but I hope there can be some light for everyone. Finding a community of people who understand can be the start of that light.
In spirit with you,
Cathy
Things continue to go generally quite well. Bryn has started working out at the gym with a few of his friends and has developed some pretty impressive arm muscles.I am hoping this will support him to be generally healthier, too, not to mention giving him some bragging rights!! He even goes alone if his timing doesn't work with his friends. He's never done much on his own and I think this shows some quite healthy, new, basic level of comfort with himself.
Recently he said he was glad he had ALPS because it makes him who he is. He say he wouldn't be the same person if this hadn't happened. See, self-acceptance. That's been hard won and a long time coming.
There are bumps too, though. Well, this is life. We all have bumps though we spend a lot of time trying to pretend we are as all-together as those Hollywood stars seems to be. all the world's a stage, they say. I hope this blog is a place we can be real about the bumps.
Yesterday Bryn had one of those days when he couldn't get out of bed. Partly I think it was that he has not been getting enough sleep to support this muscle-building but even more I think he gets overwhelmed about what he is going to do in the future and trying to figure college out. He lazed around saying he felt energy-less and a bit depressed most of the day, after sleeping until 2:00 p.m. And in the early evening he began looking again at the University program that interests him and by the end of the night was the clearest he has ever been about what his plan is. This getting energy-less is his pattern when he is emotionally overwhelmed. And there is a lot of anxiety this year. Having an AI syndrome magnifies his fears and anxieties. I get really worried on these days, a dread in my heart. He came out of it pretty fast though - by this morning he was back to normal. That's growth, too.
Occasionally he blows off steam in his old pattern of booming voice and abuse. But he apologizes quickly -- often getting triggered again quite quickly and apologizing again etc. This doesn't happen too often and he knows himself now so he can catch himself way better. For sure ALPS has taught him about himself to a much deeper and broader degree than if he had not had this happen.
I know he has been lucky that he is mild. but in another way that has been his torture - he is almost normal, he looks normal, his illness is invisible, but HE IS NOT "NORMAL". He wants to be normal more than anything. I wonder how it is for any of you put there with an AI syndrome - not so lucky. How are you coping? And for those who are similar - how are you?
I can't stress enough the value of a good therapist with skills in dealing with trauma, EMT to release old trauma, really good body work that gets down to the nervous system and calms it down in the moment. Let's face it, it is traumatic to have a chronic illness. It affects the sense of self, hope and dreams for the future, daily life. It is scary, it can be painful and isolating. Bryn has gained so much from seeing our therapist. She is a complete gem, very skilled, open of heart, accepting, loving. Don't hesitate to take yourself to see someone. Perhaps there can be a silver lining in the cloud of having an AI syndromes.
There's plenty I don't know, so many different syndromes - if you want to share it here, that would be OK with me. I'd like to start a dialogue - sharing and talking are also good therapies, finding support with each other. I am the parent of someone with an AI syndrome - I know I don't have one, but I have been intimately involved all the way along. And it has hurt me to see my son scared, suffering, traumatize, anxious and depressed. Not thriving at all. I've been there. I hope others will share here too.
The light at the end of each tunnel is different, the tunnel is different, but I hope there can be some light for everyone. Finding a community of people who understand can be the start of that light.
In spirit with you,
Cathy
Wednesday 13 February 2013
Progress and growth
Hi, It's been awhile
Good things to report. I think that Bryn has worked through the trauma, rage, fear he has had since he became ill and through the 5 years to diagnosis, and is now better able to move forward in his life. He has really made some headway this past while. I see him thinking about time management, not following every impulse in his body and mind, trying out some new things and behaviours, able to be alone, and growing up. Finally.
For the past couple of weeks he has wanted to apply for a job but been too scared to do it. He was so afraid of being fired if he became ill too often. So afraid that he became depressed and couldn't get out of bed one morning. I could understand how he felt and as I work for myself it ha been 30 years since I have been in the work force. I wasn't sure what he would meet out there. I did call Bryn's school counsellor and had a chat with him - he is so great to talk with. He helped me to see that Bryn could do jobs where there is a large workforce - like big box for example so that there are always people to call and fill in missed shifts. We also talked about the fears of rejection that come up for all these kids when they are applying for jobs for the first time. Bryn's fears as always are magnified by his condition.
Well, after being almost comatose at the thought of applying for a job, really blocked, Bryn did go in and apply at the Subway in our neighborhood He got to work and finished his resume and covering letter and rode his bike up there at 9:00 one evening. I was so proud of him. He had a counselling appt. earlier that day and felt more confident and ahd more understanding of what he was feeling.
Recently he has stood his ground to his guy friends and done what HE wants instead of what the group wants, with regards to a bedtime. He kept a promise to me that lasted a whole week - he has never kept a promise to me, always arguing to get out of them and then just refusing. He has felt entitled to do whatever he wants because he got hit with this condition - this is his rage and hurt showing. Last week he told me he wants to grow up, that is what Gr. 12 is for. Yesterday he came home with a plan for his time so he could catch up his homework from his last illness, homework for 2 hours, 2 hours at the gym, and then play time. He stuck to it!! This is not my usually procrastinating son.
He seems to have developed an impetus inside himself also, to do things besides hide in the video games. He has started working out with a few friends several evenings a week, he takes my SLR camera out and takes pictures walking for a couple of hours by himself to do this, all around the neighborhood He is really talented at photography, too. He takes photos I have been trying to take unsuccessfully like it is second nature to him, gorgeous perspectives. He has been so wrapped up in his friends, like they are the life buoy to all his problems. To do something by himself like this, several times, is really neat.
Bryn is finding his stride but before he could do this he had to work through the trauma of all his illness has brought him. I think there will be ups and downs of course and being 17 is not easy at the best of times, but I have seen things recently I was afraid to hope for. I have seen who my son really is when he can feel good about himself and be in this moment rather than riddled with fears, hurt and rage. It is wonderful.
:-)
Cathy
Good things to report. I think that Bryn has worked through the trauma, rage, fear he has had since he became ill and through the 5 years to diagnosis, and is now better able to move forward in his life. He has really made some headway this past while. I see him thinking about time management, not following every impulse in his body and mind, trying out some new things and behaviours, able to be alone, and growing up. Finally.
For the past couple of weeks he has wanted to apply for a job but been too scared to do it. He was so afraid of being fired if he became ill too often. So afraid that he became depressed and couldn't get out of bed one morning. I could understand how he felt and as I work for myself it ha been 30 years since I have been in the work force. I wasn't sure what he would meet out there. I did call Bryn's school counsellor and had a chat with him - he is so great to talk with. He helped me to see that Bryn could do jobs where there is a large workforce - like big box for example so that there are always people to call and fill in missed shifts. We also talked about the fears of rejection that come up for all these kids when they are applying for jobs for the first time. Bryn's fears as always are magnified by his condition.
Well, after being almost comatose at the thought of applying for a job, really blocked, Bryn did go in and apply at the Subway in our neighborhood He got to work and finished his resume and covering letter and rode his bike up there at 9:00 one evening. I was so proud of him. He had a counselling appt. earlier that day and felt more confident and ahd more understanding of what he was feeling.
Recently he has stood his ground to his guy friends and done what HE wants instead of what the group wants, with regards to a bedtime. He kept a promise to me that lasted a whole week - he has never kept a promise to me, always arguing to get out of them and then just refusing. He has felt entitled to do whatever he wants because he got hit with this condition - this is his rage and hurt showing. Last week he told me he wants to grow up, that is what Gr. 12 is for. Yesterday he came home with a plan for his time so he could catch up his homework from his last illness, homework for 2 hours, 2 hours at the gym, and then play time. He stuck to it!! This is not my usually procrastinating son.
He seems to have developed an impetus inside himself also, to do things besides hide in the video games. He has started working out with a few friends several evenings a week, he takes my SLR camera out and takes pictures walking for a couple of hours by himself to do this, all around the neighborhood He is really talented at photography, too. He takes photos I have been trying to take unsuccessfully like it is second nature to him, gorgeous perspectives. He has been so wrapped up in his friends, like they are the life buoy to all his problems. To do something by himself like this, several times, is really neat.
Bryn is finding his stride but before he could do this he had to work through the trauma of all his illness has brought him. I think there will be ups and downs of course and being 17 is not easy at the best of times, but I have seen things recently I was afraid to hope for. I have seen who my son really is when he can feel good about himself and be in this moment rather than riddled with fears, hurt and rage. It is wonderful.
:-)
Cathy
Thursday 31 January 2013
More fear - Bryn faces finding part-time work
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.
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.
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
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