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
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
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
Monday, 19 November 2012
Hi !
I worry about my son. He is 17 this weekend and there is so much to deal with this grade 12 year all by itself. so much to deal with to grow up and become an adult. And then we add ALPS on top of all of that normal teenage stuff and nothing is normal anymore. ALPS seems to magnify everything, especially because Bryn has been so emotionally traumatized by the process of diagnosis and and the existence of his massive spleen.
Bryn has been working with the therapist my husband and I have seen off and on for the past 23 years. She is wonderful. I am so happy they have hit it off and he is finding her work with him very beneficial. In some ways Bryn is wiser than his years because of all he has been through and all he has learned as a result. In other ways he is behind his peers in maturity because of all he has been through. He doesn't have the energy to work AND go to school., where friends are gaining work experience. He hasn't been able to fully experience his capabilities and actualize them at school because he misses so much school when he gets sick. This year, because he is feeling somewhat better he is having some very positive experiences and doing really well in several classes. This is great! But he needs to have more of this building of positive experience and seeing what he is capable of - he has missed that these past 7 years when he has set his sights on passing and that is all - he manages his time to get 50%! :-/. He is really bright and talented at music and film editing and cinematography. He's a really good writer and his comprehension in reading is above average. He's got so much going for him! He does procrastinate like crazy, and his work habits and organizational skills are horrible. This year he is really getting some great marks and comments from teachers. They have always thought he is bright but now they and he are seeing it happen!
He will be on his own path to the future - it won't look like his friends. It is hard for him to not be very stressed sometimes - he wants to be like everyone else, but I don't think he will be ready for College in Sept. He is just taking these first steps to success. Of course there is no one way, one path, the path is wavy, up and down for everyone. The schools make them feel there is one way and it is hard for he and I and his Dad to know what will happen, what life will look like. Can he manage a full-time job? He's going to be better at project based work where he can have some rest time. He wants to work in film so that may work out well. It is just hard to see and hard to know. What are the options, the possibilities?
Has anyone out there been here themselves or with a youth of there own? How'd it go? How is it going? I hope to hear from some of you about your creative solutions and paths to independence and success.
:-)
Cathy
I worry about my son. He is 17 this weekend and there is so much to deal with this grade 12 year all by itself. so much to deal with to grow up and become an adult. And then we add ALPS on top of all of that normal teenage stuff and nothing is normal anymore. ALPS seems to magnify everything, especially because Bryn has been so emotionally traumatized by the process of diagnosis and and the existence of his massive spleen.
Bryn has been working with the therapist my husband and I have seen off and on for the past 23 years. She is wonderful. I am so happy they have hit it off and he is finding her work with him very beneficial. In some ways Bryn is wiser than his years because of all he has been through and all he has learned as a result. In other ways he is behind his peers in maturity because of all he has been through. He doesn't have the energy to work AND go to school., where friends are gaining work experience. He hasn't been able to fully experience his capabilities and actualize them at school because he misses so much school when he gets sick. This year, because he is feeling somewhat better he is having some very positive experiences and doing really well in several classes. This is great! But he needs to have more of this building of positive experience and seeing what he is capable of - he has missed that these past 7 years when he has set his sights on passing and that is all - he manages his time to get 50%! :-/. He is really bright and talented at music and film editing and cinematography. He's a really good writer and his comprehension in reading is above average. He's got so much going for him! He does procrastinate like crazy, and his work habits and organizational skills are horrible. This year he is really getting some great marks and comments from teachers. They have always thought he is bright but now they and he are seeing it happen!
He will be on his own path to the future - it won't look like his friends. It is hard for him to not be very stressed sometimes - he wants to be like everyone else, but I don't think he will be ready for College in Sept. He is just taking these first steps to success. Of course there is no one way, one path, the path is wavy, up and down for everyone. The schools make them feel there is one way and it is hard for he and I and his Dad to know what will happen, what life will look like. Can he manage a full-time job? He's going to be better at project based work where he can have some rest time. He wants to work in film so that may work out well. It is just hard to see and hard to know. What are the options, the possibilities?
Has anyone out there been here themselves or with a youth of there own? How'd it go? How is it going? I hope to hear from some of you about your creative solutions and paths to independence and success.
:-)
Cathy
Saturday, 17 November 2012
It hasn't been all bad
Hi,
I want to let you know that as difficult as my very first post makes our journey seem, life hasn't been all bad.
This difficulty has pulled us closer together and we know each other on a very deep level. Our son has gained a lot of wisdom, too young, but still it is wisdom. There has been lots of grief and pain but lots of love and understanding between us, too. We support each other, forgive each other and love each other very much, Brian, Bryn and I.
We have travelled to Spain and Italy, a month in each place, nervous about medical care and extra insurance. On one of the trips, after I had explained Bryn's condition as an enlarged spleen to the person on the other end of the line, our policy came in the mail and said Bryn had "an enlarged sleep". Too funny!
We have had lots of fun and good times, too. Lots!!
There are so many things to talk about. Today I wanted to make sure you know it has not all been bad, at all, as difficult as it has been.
So much more to talk about, I hope you will share with me, too.
Cathy
I want to let you know that as difficult as my very first post makes our journey seem, life hasn't been all bad.
This difficulty has pulled us closer together and we know each other on a very deep level. Our son has gained a lot of wisdom, too young, but still it is wisdom. There has been lots of grief and pain but lots of love and understanding between us, too. We support each other, forgive each other and love each other very much, Brian, Bryn and I.
We have travelled to Spain and Italy, a month in each place, nervous about medical care and extra insurance. On one of the trips, after I had explained Bryn's condition as an enlarged spleen to the person on the other end of the line, our policy came in the mail and said Bryn had "an enlarged sleep". Too funny!
We have had lots of fun and good times, too. Lots!!
There are so many things to talk about. Today I wanted to make sure you know it has not all been bad, at all, as difficult as it has been.
So much more to talk about, I hope you will share with me, too.
Cathy
Friday, 16 November 2012
A hell of a journey - 7 years with ALPS (autoimmunelypmphoproliferative syndrome)
Hi!
After 7 years of my son, living with Autoimmunelymphoproliferative syndrome or ALPS, I am tired of being alone, falling through cracks and not sure what is normal for my son given his VERY RARE condition. I am hoping you will share your experiences with me and maybe I will see that we are not so alone and maybe I will come to understand better where we are, what Bryn's normal is, what is real and what is not. Maybe you will find something here for yourself, TOO, in a journey with a youth with an AI condition or another limiting condition. The medical community, while providing a diagnosis after 5 years of searching, has not been a big help in letting us know about what Bryn is or will facing daily. We fall through cracks all the time medically, in the schools, and HAVE NEVER MET ANYONE WTIH ALPS. So we don't know if he is more tired than "normal", what he will face as he gets older, can he hold a job if he is getting viruses all the time, if he runs out of energy and just needs to rest for awhile - he's ALREADY getting older - he's 17 next weekend!! He tells us he is more tired than his friends and that should be enough for us to know, but I want to know from others what their condition is like, what they feel, how has their experience been. I can't tell he is more tired because he keeps up with his friends and is even more sparky in his personality than they are. BUT he is just coming off 3 weeks sick and away from school - this is his grade 12 year, a really big year. He is often sick once virus season starts. .......And this is a long and complicated story.
When Bryn was 10 he had a long viral illness and was very tired. Eventually we went to the doctor and he found that Bryn's spleen palpated quite large. He sent us to a pediatrician immediately - she found Bryn's spleen even larger - right down into his groin - 21 cms. long! It is the size of a football - instead of a fist. The Pediatrician took some blood, pulled me aside, and said she suspected leukemia, and that the blood test would be done by late evening and we would hear from her by bedtime that night. He would be in Childrens' Hospital the next morning to begin treatment if he tested positive for leukemia.
I WILL NEVER FORGET STANDING WITH MY YOUNG SON IN THE LAB WAITING FOR HIS TURN, PUTTING ON A BRAVE FACE (I thought), AND BRYN ASKING ME "WHAT'S WRONG MOMMY?" I TOLD HIM VERY BRIGHTLY THAT NOTHING WAS WRONG. AND HE ASKED"THEN WHY DO YOU LOOK LIKE THAT?"
Well, this was the beginning of a 5 year journey to figure out what was wrong and causing a massive spleen. Bryn tested negative for leukemia, thank god, and for 5 years he was followed at our local Childrens' Hospital, tested for everything under the sun - cancers, rare leukemias, liver disease, virus, rare viruses. When they weren't testing to figure it out, he was followed every second week wtih blood tests, x-rays, CT scans, etc. His platelets are low, his hemoglobin, neutrophils, and white blood cells, too. Blood levels went up and down as he caught illnesses but were always low. But other than being sick more often with viruses and having to give up any kind of sport that would threaten a rupture of his now vulnerable spleen (it was no longer protected by the rib cage and much more vulnerable to blows), and missing more school because of regular viral illnesses, he was quite normal. Certainly from outside no one could tell he had an illness of any kind.
Fast forward - 5 years of this. Our son has been seeming to do well outside the home, he is very bright, charming, lively, handsome and social, does well in school, but he is violent at home, volatile as hell, and we are dealing with constant abuse. He says the process of testing is not bothering him but but he HATES HIS SPLEEN AND HE WANTS TO BE NORMAL, sometimes he cries and says "I want to go home" but he cannot explain what he means by home (something we are to hear countless times) and he is acting out at home constantly - holes in the wall, a broken window, a broken lamp, things regularly thrown AND violence. We enter family therapy, and he does art therapy, Virginia Satir therapy, to try to deal with his emotions, to fix what we parents are doing wrong, but nothing really helps. When we ask to see a therapist at the hospital we are told "those are for the really sick kids." Well, not knowing what is wrong with you, being poked and prodded all the time and waiting for results of tests with NO BLOODY ANSWERS is a horrible kind of TORTURE unrecognized at our hospital or anywhere really. I don't think even my husband or I knew what we felt or how hard this was, which in retrospect seems crazy since our son was off the wall several times a day. We were alone with no other "sufferers"to bounce off of and no real understanding from the medical community. We received no help the medical system and continued paying large sums of our own money, desperately trying to help our son and ourselves. Meanwhile the neighbors thought we were abusing our son and called Children and Family Services. This govt. agency came and did a home visit (I can't tell you how rude I was to her when she called!! I was shocked that they wanted to come to our house). They spoke with me, with our son, with my husband on separate days, and gave us a clean and even admiring bill of health for attempting to deal with our problems. No we are not perfect, yes, we have problems and are having a difficult time, but we are dealing with a very difficult situation with all the therapists for our son and ourselves that we can muster (she said, unlike many people who don't deal with their problems at all). I still can't understand how a neighbor could have done that to us - though I do know it was very loud and horrible sounding from inside our home. I was nauseous for 2 weeks after each visit of this very kind govt. worker, terrified they would take our son.
Well, 5 years after the first leukemia test our hematologist calls and says she thinks she knows what he has. She wants to do some blood tests and send Bryn to the National Institute of Health, NIH, in Bethesda, Maryland where they have a study on ALPS. The NIH will pay for Bryns' and a parent's plane fare and we can stay for free in the Chidlrens' INN on the campus of the NIH. Our doc eagerly and with our thanks, pulls together a lot of reports, data, files, tests and bloods, to send to the NIH and off we go.
Bryn and I went without his Dad which seemed a big deal at the time. Bryn had 18 viles of blood taken and genetic testing with his genes read, and after a month wait we have a diagnosis - he has ALPS. He has had a genetic mutation on a single cell in his immune system - the double-negative T-cell. We have a page showing how the gene is written correctly for awhile and then the spelling on it goes haywire - ON ONE BLOODY CELL - and it has changed his life. His body no longer recognizes that cell or gets rid of it when it is no longer needed after an illness - it lodges in his spleen, creating this massive spleen. There are approx. 200 known cases of ALPS in the world. 190 of those are inherited from parents with ALPS who have not been diagnosed or have remained asymptomatic. There are only 10 like my son, who have had a spontaneous mutation during his growth in the womb, in MY womb. Is this my fault? I don't often think that but as I write I wonder if I think it more than I know.... more later on that....
So now my son is, as he says himself, 1/700,000,000 in the world. I am just happy he is going to live, not have a degenerating illness. But Bryn is still mad and upset, he wants to be like everyone else and he hates his spleen. His is a mild case, the most mild case of the NIH ALPS team - lucky right? Some kids are very very ill. He's lucky right? Not to Bryn. He wants to be "normal", he hates his spleen and the volatility continues - only now he is 15 and bigger and it is really tough.
I'm going to leave it there for today. It's a long story. Bryn is doing therapy again the last few months and the volatility has stopped - he is finally old enough to begin to deal with the trauma of what he has been through. I'll tell more about that another day. I am afraid for his future, of the unknown, for his schooling, which is going much better this year because he is feeling better, of what he will do, what can he do, after Gr. 12 with his gifts especially a passion for cinematography and film editing. I don't know whether anyone will comment or be interested or share their story. I hope so. I don't want to be alone with this any more. I don't want to keep the secret of our family difficulties that have arisen from this anymore. ALPS is rare, it is invisible in Bryn's case, we are tired of being in the cracks in the medical system, of trying to figure this out alone with no one to bounce off, no landmarks in sight, making all new landmarks and not even knowing sometimes whether we are in the right place or any place, and of no one else knowing or understanding. I would like to compare stories, to see how and what others are doing, parents of youth, youth themselves, people who were youth once in similar situations.To know we are not so bloody different and alone. Maybe we can help each other figure out the unknowns. Maybe we can support each other. Please share your story with me. From here on I am going to post mostly daily - thought, worries, situations, wonderings as they arise. Bryn is on the cusp of the rest of his life and there are so many questions, so much to think about and not very many answers. Maybe we can share answers or hammier them out together. If nothing else, maybe we can listen to each other.
From my heart to yours,
Cathy
After 7 years of my son, living with Autoimmunelymphoproliferative syndrome or ALPS, I am tired of being alone, falling through cracks and not sure what is normal for my son given his VERY RARE condition. I am hoping you will share your experiences with me and maybe I will see that we are not so alone and maybe I will come to understand better where we are, what Bryn's normal is, what is real and what is not. Maybe you will find something here for yourself, TOO, in a journey with a youth with an AI condition or another limiting condition. The medical community, while providing a diagnosis after 5 years of searching, has not been a big help in letting us know about what Bryn is or will facing daily. We fall through cracks all the time medically, in the schools, and HAVE NEVER MET ANYONE WTIH ALPS. So we don't know if he is more tired than "normal", what he will face as he gets older, can he hold a job if he is getting viruses all the time, if he runs out of energy and just needs to rest for awhile - he's ALREADY getting older - he's 17 next weekend!! He tells us he is more tired than his friends and that should be enough for us to know, but I want to know from others what their condition is like, what they feel, how has their experience been. I can't tell he is more tired because he keeps up with his friends and is even more sparky in his personality than they are. BUT he is just coming off 3 weeks sick and away from school - this is his grade 12 year, a really big year. He is often sick once virus season starts. .......And this is a long and complicated story.
When Bryn was 10 he had a long viral illness and was very tired. Eventually we went to the doctor and he found that Bryn's spleen palpated quite large. He sent us to a pediatrician immediately - she found Bryn's spleen even larger - right down into his groin - 21 cms. long! It is the size of a football - instead of a fist. The Pediatrician took some blood, pulled me aside, and said she suspected leukemia, and that the blood test would be done by late evening and we would hear from her by bedtime that night. He would be in Childrens' Hospital the next morning to begin treatment if he tested positive for leukemia.
I WILL NEVER FORGET STANDING WITH MY YOUNG SON IN THE LAB WAITING FOR HIS TURN, PUTTING ON A BRAVE FACE (I thought), AND BRYN ASKING ME "WHAT'S WRONG MOMMY?" I TOLD HIM VERY BRIGHTLY THAT NOTHING WAS WRONG. AND HE ASKED"THEN WHY DO YOU LOOK LIKE THAT?"
Well, this was the beginning of a 5 year journey to figure out what was wrong and causing a massive spleen. Bryn tested negative for leukemia, thank god, and for 5 years he was followed at our local Childrens' Hospital, tested for everything under the sun - cancers, rare leukemias, liver disease, virus, rare viruses. When they weren't testing to figure it out, he was followed every second week wtih blood tests, x-rays, CT scans, etc. His platelets are low, his hemoglobin, neutrophils, and white blood cells, too. Blood levels went up and down as he caught illnesses but were always low. But other than being sick more often with viruses and having to give up any kind of sport that would threaten a rupture of his now vulnerable spleen (it was no longer protected by the rib cage and much more vulnerable to blows), and missing more school because of regular viral illnesses, he was quite normal. Certainly from outside no one could tell he had an illness of any kind.
Fast forward - 5 years of this. Our son has been seeming to do well outside the home, he is very bright, charming, lively, handsome and social, does well in school, but he is violent at home, volatile as hell, and we are dealing with constant abuse. He says the process of testing is not bothering him but but he HATES HIS SPLEEN AND HE WANTS TO BE NORMAL, sometimes he cries and says "I want to go home" but he cannot explain what he means by home (something we are to hear countless times) and he is acting out at home constantly - holes in the wall, a broken window, a broken lamp, things regularly thrown AND violence. We enter family therapy, and he does art therapy, Virginia Satir therapy, to try to deal with his emotions, to fix what we parents are doing wrong, but nothing really helps. When we ask to see a therapist at the hospital we are told "those are for the really sick kids." Well, not knowing what is wrong with you, being poked and prodded all the time and waiting for results of tests with NO BLOODY ANSWERS is a horrible kind of TORTURE unrecognized at our hospital or anywhere really. I don't think even my husband or I knew what we felt or how hard this was, which in retrospect seems crazy since our son was off the wall several times a day. We were alone with no other "sufferers"to bounce off of and no real understanding from the medical community. We received no help the medical system and continued paying large sums of our own money, desperately trying to help our son and ourselves. Meanwhile the neighbors thought we were abusing our son and called Children and Family Services. This govt. agency came and did a home visit (I can't tell you how rude I was to her when she called!! I was shocked that they wanted to come to our house). They spoke with me, with our son, with my husband on separate days, and gave us a clean and even admiring bill of health for attempting to deal with our problems. No we are not perfect, yes, we have problems and are having a difficult time, but we are dealing with a very difficult situation with all the therapists for our son and ourselves that we can muster (she said, unlike many people who don't deal with their problems at all). I still can't understand how a neighbor could have done that to us - though I do know it was very loud and horrible sounding from inside our home. I was nauseous for 2 weeks after each visit of this very kind govt. worker, terrified they would take our son.
Well, 5 years after the first leukemia test our hematologist calls and says she thinks she knows what he has. She wants to do some blood tests and send Bryn to the National Institute of Health, NIH, in Bethesda, Maryland where they have a study on ALPS. The NIH will pay for Bryns' and a parent's plane fare and we can stay for free in the Chidlrens' INN on the campus of the NIH. Our doc eagerly and with our thanks, pulls together a lot of reports, data, files, tests and bloods, to send to the NIH and off we go.
Bryn and I went without his Dad which seemed a big deal at the time. Bryn had 18 viles of blood taken and genetic testing with his genes read, and after a month wait we have a diagnosis - he has ALPS. He has had a genetic mutation on a single cell in his immune system - the double-negative T-cell. We have a page showing how the gene is written correctly for awhile and then the spelling on it goes haywire - ON ONE BLOODY CELL - and it has changed his life. His body no longer recognizes that cell or gets rid of it when it is no longer needed after an illness - it lodges in his spleen, creating this massive spleen. There are approx. 200 known cases of ALPS in the world. 190 of those are inherited from parents with ALPS who have not been diagnosed or have remained asymptomatic. There are only 10 like my son, who have had a spontaneous mutation during his growth in the womb, in MY womb. Is this my fault? I don't often think that but as I write I wonder if I think it more than I know.... more later on that....
So now my son is, as he says himself, 1/700,000,000 in the world. I am just happy he is going to live, not have a degenerating illness. But Bryn is still mad and upset, he wants to be like everyone else and he hates his spleen. His is a mild case, the most mild case of the NIH ALPS team - lucky right? Some kids are very very ill. He's lucky right? Not to Bryn. He wants to be "normal", he hates his spleen and the volatility continues - only now he is 15 and bigger and it is really tough.
I'm going to leave it there for today. It's a long story. Bryn is doing therapy again the last few months and the volatility has stopped - he is finally old enough to begin to deal with the trauma of what he has been through. I'll tell more about that another day. I am afraid for his future, of the unknown, for his schooling, which is going much better this year because he is feeling better, of what he will do, what can he do, after Gr. 12 with his gifts especially a passion for cinematography and film editing. I don't know whether anyone will comment or be interested or share their story. I hope so. I don't want to be alone with this any more. I don't want to keep the secret of our family difficulties that have arisen from this anymore. ALPS is rare, it is invisible in Bryn's case, we are tired of being in the cracks in the medical system, of trying to figure this out alone with no one to bounce off, no landmarks in sight, making all new landmarks and not even knowing sometimes whether we are in the right place or any place, and of no one else knowing or understanding. I would like to compare stories, to see how and what others are doing, parents of youth, youth themselves, people who were youth once in similar situations.To know we are not so bloody different and alone. Maybe we can help each other figure out the unknowns. Maybe we can support each other. Please share your story with me. From here on I am going to post mostly daily - thought, worries, situations, wonderings as they arise. Bryn is on the cusp of the rest of his life and there are so many questions, so much to think about and not very many answers. Maybe we can share answers or hammier them out together. If nothing else, maybe we can listen to each other.
From my heart to yours,
Cathy
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