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
Tuesday 26 February 2013
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
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