I have been asking myself a lot of deep questions the past several months - along the vein of "Who am I really?" and "what do I want from this life of mine?". Also included in that is - why do I blog and is it a burden or a gift?
I began blogging back in 2006 because I thought it would be a great way to vent and I was trying to save money and not go to therapy as much. I'd love to be able to say that I started blogging because I wanted to help others but that simply wasn't true at that time. I did want to connect with people and I was buoyed often by other bloggers but I didn't consider myself to have anything to offer others at that time.
Considering I only made 3 posts in that first year (and the bill from therapy) my goal of venting and avoiding therapy didn't exactly work out. But I kept at it, though sporadically. I've wrestled with anonymity and what is for me to tell versus my children's personal information for years. I don't use our names and I try not to post pics that show their faces. And those first few years I did vent quite a bit about school and other issues that weighed heavily on me.
But now what do I want my blog to be about? People and circumstances change. I'm trying hard not to be angry with people and instead to believe (as I want people to believe about my son) that when people CAN do better they will do better. So I, for the most part, have not been using this space to vent about Social Workers and Crisis Workers and so on.
However, I want to write more. Writing has always been an outlet for me but lately it has felt like another pressure, another burden. So I decided to sit with that for a while. Why does it feel like a burden if no one is making me blog? Add to that hardly anyone reads it and it should feel burden free. It eventually came to me that I am still very much grappling with my anxiety and depression and everything feels like too much of an effort right now. So I have been getting up each day (when all I want to do is stay under the covers all day) and I make a small list of what to accomplish and for the most part I have been successful. But believe me when I say it takes every last bit of my will power to make it happen.
So I have fallen behind in my contract work, my housework, my personal work, my blogging -but perhaps by putting this out there it will compel me further to keep going.
I'd like to go back in time and post things from early on in the years with C and our struggles to get services and diagnosis. I'd like to post some of my journal entries so that perhaps other families who are feeling lost and alone will not feel so much so.
That's my plan.
Showing posts with label Sorting It Out. Show all posts
Showing posts with label Sorting It Out. Show all posts
Tuesday, March 06, 2012
Thursday, December 08, 2011
Therefore I Share
Mental Illness is nothing to be ashamed of.
It is not the fault of the person dealing with it.
It is hard for all involved. The individual, family, friends . . .
Mental illness is nothing to be ashamed of
How many times have I said that in real life, on Facebook, on my blog?
I tell my son this all the time. I tell him that his Bi-Polar and OCD and other illness/disorders are a pesky part of him but they do not define him and they do not make him less of a person. I tell him that he is my hero - having so much on his plate yet getting up each day with a smile on his face. And when it is a bad day (or week) I tell him that's ok too. He's entitled. Eventually he will get up again after we help him fight off the demons that haunt him in his head.
Mental illness is nothing to be ashamed of.
Just like people are not ashamed of cancer. People are a lot of things at Cancer - scared, mad, frustrated, devastated, determined to name a few. But people are not ashamed of cancer.
I suffer from depression and anxiety. It's been mostly under control for many years now but you can read a little about previous times I was struggling here and here and also here.
A few weeks ago it got really bad really fast. It seemed to hit me out of no where. My brave and amazing husband and friends made sure that I got to the hospital. I stayed for 3 weeks. While I was there I was almost successful in hanging myself with a sheet. Yes it was that bad. I was not myself. I was over run with irrational thoughts and overwhelming emotions. I thought the world would be better without me. I thought that my pain, that feeling of deep emptiness, would finally be gone if I was dead. I felt so very very desperate.
I was and still am battling a mental illness. I probably always will in some way.
I share this because I need to not be ashamed. I cannot teach my son and society to accept mental illness if I am ashamed and keep this as a secret. Therefore I share.
It is not the fault of the person dealing with it.
It is hard for all involved. The individual, family, friends . . .
Mental illness is nothing to be ashamed of
How many times have I said that in real life, on Facebook, on my blog?
I tell my son this all the time. I tell him that his Bi-Polar and OCD and other illness/disorders are a pesky part of him but they do not define him and they do not make him less of a person. I tell him that he is my hero - having so much on his plate yet getting up each day with a smile on his face. And when it is a bad day (or week) I tell him that's ok too. He's entitled. Eventually he will get up again after we help him fight off the demons that haunt him in his head.
Mental illness is nothing to be ashamed of.
Just like people are not ashamed of cancer. People are a lot of things at Cancer - scared, mad, frustrated, devastated, determined to name a few. But people are not ashamed of cancer.
I suffer from depression and anxiety. It's been mostly under control for many years now but you can read a little about previous times I was struggling here and here and also here.
A few weeks ago it got really bad really fast. It seemed to hit me out of no where. My brave and amazing husband and friends made sure that I got to the hospital. I stayed for 3 weeks. While I was there I was almost successful in hanging myself with a sheet. Yes it was that bad. I was not myself. I was over run with irrational thoughts and overwhelming emotions. I thought the world would be better without me. I thought that my pain, that feeling of deep emptiness, would finally be gone if I was dead. I felt so very very desperate.
I was and still am battling a mental illness. I probably always will in some way.
I share this because I need to not be ashamed. I cannot teach my son and society to accept mental illness if I am ashamed and keep this as a secret. Therefore I share.
Monday, November 21, 2011
It's All Too Much
I know I haven't been posting lately, but does the old adage - "no news is good news ring true"? Yes, No, I'm not really sure.
The boys themselves are doing well. I'd even go so far as to say the are flourishing
Me, not so much.
I'm in a deep dark confusing and often lonely place.
But I am getting help. I am reaching out and trying to let people in. I have sought professional intervention.
I so badly want to write and to pour out my heart and soul but it just isn't meant to be at this moment.
But I'm still here and that counts for a lot right now
The boys themselves are doing well. I'd even go so far as to say the are flourishing
Me, not so much.
I'm in a deep dark confusing and often lonely place.
But I am getting help. I am reaching out and trying to let people in. I have sought professional intervention.
I so badly want to write and to pour out my heart and soul but it just isn't meant to be at this moment.
But I'm still here and that counts for a lot right now
Thursday, September 01, 2011
Cue the Music
School in our part of Southwestern Ontario (Canada) starts next week.
Cue scary shark music ending in a shrill shriek
But wait . . . Usually by now I am saying hourly prayers under my breath and wishing desperately that I had a vice that would get me through the last few days of summer vacation while AT THE SAME TIME wanting nothing more than to curl up in the fetal position in a dark room in order to get away from the impending doom that is school for my boys.
This year . . . I posted a thank you to summer in my Face Book status. I posted lots of awesome pics here on my blog. Sure there have been bumps in the road this summer. A few were pretty significant and usually would have brought me to my knees. But this year - we are all managing.
Last night I went across the border to do some shopping with my very good friend and we stopped at the Olive Garden (which we no longer have in our home town, sigh) to absolutely stuff ourselves eat and enjoy each others company on this rare ocassion for as long as possible. Amidst fits of uncontrollable giggles that left my stomach hurting and tears running down my face - we commiserated. We talked about school and what we were doing to prepare for this year as all four of our boys have unique learning challenges at school.
I admitted to her that I haven't done any of the information packages and personal introduction letters to the teachers that I usually have ready in July (lol). I just yesterday had a brief conversation with C's teacher to book a quick visit to school on Friday to ease his anxiety because I figured that was the one thing I can't skip this year.
At that moment I paused from stuffing my face and I said to my good friend "you know, I've given enough of my time, energy, emotions, tears and effort to school. I think I'm done with that for now".
And I meant it.
C is going to have a very strict and loud teacher this year.
I could choose to try and fight his class placement. I could try to get him moved. I could write letters, make calls, write emails, vent on Facebook and call upon all my advocate friends.
I could stay up til the wee hours tonight typing and cutting and pasting and printing and colating information, all the while trying not to be resentful or sad that there would be a strong possibility that the teacher wouldn't so much as crack the front cover on my carefully chosen duotang.
I could find myself lying in the bed, late at night, unable to sleep as I worry about the fact that this Grade 8 for C and he is woefully behind in using his laptop. That he struggles so hard to fit in and might feel rejected and isolated. That next year is highschool and . . . . .
but I stopped myself
I am going to choose instead to be believe that after all these years the people at his school know him and are competent. I am going to believe that C has come so far that he can continue some of the self advocacy that he has demonstrated previously. I am going to believe that the people (peers and teachers) that we know and trust and who know and love our son will look out for him and let me know if something is amiss (as they have in the past). I am going to trust that the Principal and last years teacher chose his class placement for very good reasons and that they have everyone's best interests at heart.
I am going to choose to let go a little. I am going to trust what we have worked so hard to create to do its thang.
And I am resolute in my knowledge that should there be bumps in the road - I know how to handle them. I am bigger and stronger than any of those situations and I am supported by many many people who are also bigger and stronger and we will close ranks around C and help him, and the school, through anything that the universe throws our way.
We have done it before. We can do it again, but only if necessary
Because in the meantime - I plan to keep living and loving my life and doing things like canning 8 dozen jars of spaggetti sauce with a good friend that I just don't see enough of.
I will let some of our hard work do its magic while I dance and live off to the side
Cue party music
Cue scary shark music ending in a shrill shriek
But wait . . . Usually by now I am saying hourly prayers under my breath and wishing desperately that I had a vice that would get me through the last few days of summer vacation while AT THE SAME TIME wanting nothing more than to curl up in the fetal position in a dark room in order to get away from the impending doom that is school for my boys.
This year . . . I posted a thank you to summer in my Face Book status. I posted lots of awesome pics here on my blog. Sure there have been bumps in the road this summer. A few were pretty significant and usually would have brought me to my knees. But this year - we are all managing.
Last night I went across the border to do some shopping with my very good friend and we stopped at the Olive Garden (which we no longer have in our home town, sigh) to
I admitted to her that I haven't done any of the information packages and personal introduction letters to the teachers that I usually have ready in July (lol). I just yesterday had a brief conversation with C's teacher to book a quick visit to school on Friday to ease his anxiety because I figured that was the one thing I can't skip this year.
At that moment I paused from stuffing my face and I said to my good friend "you know, I've given enough of my time, energy, emotions, tears and effort to school. I think I'm done with that for now".
And I meant it.
C is going to have a very strict and loud teacher this year.
I could choose to try and fight his class placement. I could try to get him moved. I could write letters, make calls, write emails, vent on Facebook and call upon all my advocate friends.
I could stay up til the wee hours tonight typing and cutting and pasting and printing and colating information, all the while trying not to be resentful or sad that there would be a strong possibility that the teacher wouldn't so much as crack the front cover on my carefully chosen duotang.
I could find myself lying in the bed, late at night, unable to sleep as I worry about the fact that this Grade 8 for C and he is woefully behind in using his laptop. That he struggles so hard to fit in and might feel rejected and isolated. That next year is highschool and . . . . .
but I stopped myself
I am going to choose instead to be believe that after all these years the people at his school know him and are competent. I am going to believe that C has come so far that he can continue some of the self advocacy that he has demonstrated previously. I am going to believe that the people (peers and teachers) that we know and trust and who know and love our son will look out for him and let me know if something is amiss (as they have in the past). I am going to trust that the Principal and last years teacher chose his class placement for very good reasons and that they have everyone's best interests at heart.
I am going to choose to let go a little. I am going to trust what we have worked so hard to create to do its thang.
And I am resolute in my knowledge that should there be bumps in the road - I know how to handle them. I am bigger and stronger than any of those situations and I am supported by many many people who are also bigger and stronger and we will close ranks around C and help him, and the school, through anything that the universe throws our way.
We have done it before. We can do it again, but only if necessary
Because in the meantime - I plan to keep living and loving my life and doing things like canning 8 dozen jars of spaggetti sauce with a good friend that I just don't see enough of.
I will let some of our hard work do its magic while I dance and live off to the side
Cue party music
Wednesday, June 08, 2011
My Amazing Man
Part of my commitment to myself and to my family is to do better taking care of myself. I feel weird just even typing that as I used to always roll my eyes when people would say that "But hon, you have to do things to take care of you!" and I would smile politely and say "I know, I know" and then walk away rolling my eyes saying "As if . . . ".
But if I learned anything last year - it's that I absolutely must find ways to take care of myself. So today I had an appointment and while I was there I shut my phone off. Yup, shut it off. Because, really, I NEEDED that therapy appointment and even if the phone rang, what would I do?? Walk out of an exceptionally expensive and important appointment to race accross town to do what exactly?? And truth be told I haven't had a call from the school (other than for legitimate illness) in a very long time.
I guess we were overdue.
At the end of my appointment I looked at my phone. 2 missed calls. From the school. Funny thing was though, I didn't panic. My stomach didn't bottom out. I thought to myself " I sure hope they called A". A further look at my phone told me that they had and he had messaged me to say that he knew I was at my appointment (have to LOVE that synchronized Outlook calendar on our Blackberry's) and he was heading to the school.
All this began occurring at 9:30. By the time I got home at 10:30 C was settled at home with a worker and A was on his way back to work. Everyone was calm. C had balked at doing class work (probably partly the work, partly the heat and partly the anticipation of a HUGE purchase that he made for himself that was due to be delivered today - more on that later). Anyhow, instead of blowing up in class he removed himself to the washroom. The call from the school was in case he blew completely. Instead he managed to pull himself together and get back to class for a few minutes before A even got home.
On my drive home though I admit I worried how A would react. Would he be frustrated or even angry at the wasted drive home in the middle of his work day? Instead I heard how he discussed it calmly with our boy and made sure to congratulate him on his ability to work it through and go back to class.
He's amazing that man of mine.
But if I learned anything last year - it's that I absolutely must find ways to take care of myself. So today I had an appointment and while I was there I shut my phone off. Yup, shut it off. Because, really, I NEEDED that therapy appointment and even if the phone rang, what would I do?? Walk out of an exceptionally expensive and important appointment to race accross town to do what exactly?? And truth be told I haven't had a call from the school (other than for legitimate illness) in a very long time.
I guess we were overdue.
At the end of my appointment I looked at my phone. 2 missed calls. From the school. Funny thing was though, I didn't panic. My stomach didn't bottom out. I thought to myself " I sure hope they called A". A further look at my phone told me that they had and he had messaged me to say that he knew I was at my appointment (have to LOVE that synchronized Outlook calendar on our Blackberry's) and he was heading to the school.
All this began occurring at 9:30. By the time I got home at 10:30 C was settled at home with a worker and A was on his way back to work. Everyone was calm. C had balked at doing class work (probably partly the work, partly the heat and partly the anticipation of a HUGE purchase that he made for himself that was due to be delivered today - more on that later). Anyhow, instead of blowing up in class he removed himself to the washroom. The call from the school was in case he blew completely. Instead he managed to pull himself together and get back to class for a few minutes before A even got home.
On my drive home though I admit I worried how A would react. Would he be frustrated or even angry at the wasted drive home in the middle of his work day? Instead I heard how he discussed it calmly with our boy and made sure to congratulate him on his ability to work it through and go back to class.
He's amazing that man of mine.
Tuesday, June 07, 2011
Uncondtional
There has been so much happening and I will be getting back on here more because in the end it is important to me and I enjoy writing and having a journal to look back on. I'd also like to think that even if my words and/or experiences connect with even one other person that is an amazing thing.
Before I get bogged down with everyday life and trying to catch up on this poor neglected blog - I wanted to share something with you.
We had a meeting today with C's new service/support provider and CPRI to begin this transition process. There were 8 people around the table. We all sat down and settled in and then there was silence - I looked around and realized they were all looking at me. It was a little overwhelming for a moment as the meaning of this sunk in - this was truly my meeting on behalf of my son and our family. TRULY our meeting in every sense of the word and to start off they were respecting my role by allowing me to run the meeting.
I don't think I had ever realized that this had never happened before. I had been involved in some meetings more than others depending on the circumstances and I would never had thought that everyone sitting back and waiting for the parent to begin would be that powerful. It is. Once I caught my breath I told them what I was thinking and there were these pained looks on every face - they all felt that it was a shame I had not experienced this before. We quickly moved on and I set the stage for what I wanted to achieve through this meeting.
Things progressed and people talked and shared and strategized. Then I felt tears coming to my eyes as I came to another realization.
This was the first time I was in a room surrounded by people who had supported my son in the past as well as people who would continue to support him in the future and every single person was there in a positive supportive role. Not a single person was frustrated with me, angry with me, intimidated by me. Not a single person had come in with an agenda of their own. Not a single person felt they knew my son better or felt that if they could just get me to understand that their way was better than mine. Not a single person felt that isolation, punishment and being harsh was the way to go with our son.
The room was filled with intelligent, articulate, skilled individuals who wanted to support our family in positive ways. They acknowledged my key role as his mother and only wanted to truly support our family in whatever way we see fit - not try to make us fit into a mould they had already poured.
Unconditional respect and acceptance for our family and our son.
Hunh, so that's what that feels like.
Before I get bogged down with everyday life and trying to catch up on this poor neglected blog - I wanted to share something with you.
We had a meeting today with C's new service/support provider and CPRI to begin this transition process. There were 8 people around the table. We all sat down and settled in and then there was silence - I looked around and realized they were all looking at me. It was a little overwhelming for a moment as the meaning of this sunk in - this was truly my meeting on behalf of my son and our family. TRULY our meeting in every sense of the word and to start off they were respecting my role by allowing me to run the meeting.
I don't think I had ever realized that this had never happened before. I had been involved in some meetings more than others depending on the circumstances and I would never had thought that everyone sitting back and waiting for the parent to begin would be that powerful. It is. Once I caught my breath I told them what I was thinking and there were these pained looks on every face - they all felt that it was a shame I had not experienced this before. We quickly moved on and I set the stage for what I wanted to achieve through this meeting.
Things progressed and people talked and shared and strategized. Then I felt tears coming to my eyes as I came to another realization.
This was the first time I was in a room surrounded by people who had supported my son in the past as well as people who would continue to support him in the future and every single person was there in a positive supportive role. Not a single person was frustrated with me, angry with me, intimidated by me. Not a single person had come in with an agenda of their own. Not a single person felt they knew my son better or felt that if they could just get me to understand that their way was better than mine. Not a single person felt that isolation, punishment and being harsh was the way to go with our son.
The room was filled with intelligent, articulate, skilled individuals who wanted to support our family in positive ways. They acknowledged my key role as his mother and only wanted to truly support our family in whatever way we see fit - not try to make us fit into a mould they had already poured.
Unconditional respect and acceptance for our family and our son.
Hunh, so that's what that feels like.
Thursday, May 26, 2011
To the 16 year old me
I've thought about doing this several times over the years and since I haven't been posting lately (I've been in a dark dark place but dragging myself out now) I thought I would jump back in with a little humour mixed in with my sincerity.
To the 16 year old Me (things I wish I had known Wayyyyyyyy back then)
1. You are NOT fat. I wish you could find a way to feel comfortable in your body and learn how to work your, ahem, assets. They are awesome, you are awesome and you will kick yourself later when you find out the guys you liked actually liked you but were intimidated (see point 2, 3 and 6 for more on this).
2. Wearing clothes 2 sizes too big does not help you hide what you think it does. Work with what you have, flaunt the awesome and at least wear the right size to cover the rest.
3. STOP being so freakin serious all the time!!!! You are young, healthy and the world is your oyster. Reach out to people who try to be your friends, don't shut them out. Party a little bit, make out with more guys. That demeanour that you have when you are shy and nervous - it comes off as being aloof and superior. Work on it, open up and allow yourself to be a little vulnerable.
3. Enjoy being able to sit on any surface in any configuration that you can for as long as you want. Before you know it when you simply sit on a chair your legs and butt will fall asleep and your knees and back will ache. You don't know how good you have it.
4. Your giving nature, your desire to help others - embrace it and run with it. Learn to harness it and use it effectively. Don't let it run wild and run you over and make you question your desire to make the world a better place. Compassion, empathy and understanding are gifts that you have been given. Find a way to celebrate your gifts without losing yourself.
5. You are stronger than you think. The next few years will be rough. so rough. You will make it through and not unscathed but believe it or not these very necessary and painful experiences will help you make it through some extremely difficult times in the future.
6. All those people who seem so self assured and stuck up at school?? Most aren't. Most are just as insecure, if not even more, inside. Some you will get to know later and you will be shocked at how much you have in common. No one feels comfortable going into the school cafeteria alone, some just hide it better. You are all struggling with who you are and who you are going to become (and many who made your life a living hell DO NOT go on to bigger and better things, just sayin).
7. Get contacts NOW. I love you but what were you thinking when you bought those glasses???
8. Stop ducking when someone tries to take you picture. Take lots of pictures of everything you do with your friends. Your memory won't always be what it is today and you will love to reminisce over yearbooks and candid shots. For this to be awesome you will NEED to follow #3!!!
9. You will meet the love of your life and not too far in the future. It will seem like its never going to happen. But it does. Times will be rough at times but he's a good guy and he loves you like no other.
10. When you are 37 years old you will have minor dental surgery. DO NOT try to eat a spicy chicken pizza slice the next day!!!!!
To the 16 year old Me (things I wish I had known Wayyyyyyyy back then)
1. You are NOT fat. I wish you could find a way to feel comfortable in your body and learn how to work your, ahem, assets. They are awesome, you are awesome and you will kick yourself later when you find out the guys you liked actually liked you but were intimidated (see point 2, 3 and 6 for more on this).
2. Wearing clothes 2 sizes too big does not help you hide what you think it does. Work with what you have, flaunt the awesome and at least wear the right size to cover the rest.
3. STOP being so freakin serious all the time!!!! You are young, healthy and the world is your oyster. Reach out to people who try to be your friends, don't shut them out. Party a little bit, make out with more guys. That demeanour that you have when you are shy and nervous - it comes off as being aloof and superior. Work on it, open up and allow yourself to be a little vulnerable.
3. Enjoy being able to sit on any surface in any configuration that you can for as long as you want. Before you know it when you simply sit on a chair your legs and butt will fall asleep and your knees and back will ache. You don't know how good you have it.
4. Your giving nature, your desire to help others - embrace it and run with it. Learn to harness it and use it effectively. Don't let it run wild and run you over and make you question your desire to make the world a better place. Compassion, empathy and understanding are gifts that you have been given. Find a way to celebrate your gifts without losing yourself.
5. You are stronger than you think. The next few years will be rough. so rough. You will make it through and not unscathed but believe it or not these very necessary and painful experiences will help you make it through some extremely difficult times in the future.
6. All those people who seem so self assured and stuck up at school?? Most aren't. Most are just as insecure, if not even more, inside. Some you will get to know later and you will be shocked at how much you have in common. No one feels comfortable going into the school cafeteria alone, some just hide it better. You are all struggling with who you are and who you are going to become (and many who made your life a living hell DO NOT go on to bigger and better things, just sayin).
7. Get contacts NOW. I love you but what were you thinking when you bought those glasses???
8. Stop ducking when someone tries to take you picture. Take lots of pictures of everything you do with your friends. Your memory won't always be what it is today and you will love to reminisce over yearbooks and candid shots. For this to be awesome you will NEED to follow #3!!!
9. You will meet the love of your life and not too far in the future. It will seem like its never going to happen. But it does. Times will be rough at times but he's a good guy and he loves you like no other.
10. When you are 37 years old you will have minor dental surgery. DO NOT try to eat a spicy chicken pizza slice the next day!!!!!
Friday, April 29, 2011
Things are Looking Up
The past few weeks have been difficult and stressful around our house. A great deal of that can be traced back to me - I've had less patience, have been holding on to the stress, I've felt ready to snap at any moment. There were times where I vividly imagined grabbing my passport and heading out the door. I even researched flights to various far away lands.
But alas - I am here. I am digging my way out.
C has been having a hard time of it. I don't believe my mood is completely responsible but I do know it has contributed. This is also historically his hardest time of year, right around Easter. We have never known why (though we have some working hypothesis) but we just know that we should prepare for huge mood swings at this time of year. I had hoped we might escape it now that we have the BiPolar diagnosis and he has been on meds for it for many months. But while the meds have certainly stopped us from hitting rock bottom there is a definite amount of mixed mania and depression hitting him, rapid cycling that is so rapid it leaves me shaking and completely exhausted afterward.
I've also had some very stressful meetings with Corbin's "team" over the past few weeks. His current plan is not working for him or for us and we have been trying to figure out how to change it. Its not easy. There are so many restrictions placed on us from varying Ministry bodies (that I cannot get into on this blog) but lets just say that I find it mind boggling at this point that it is not funding that is holding us back but rather trying to find approved service providers who can work with us and our son to create the life that he needs. I know I am being vague here - and I really wish I could write more. There have been things said and done to me (and our son) the past several months that would make your jaw drop.
But today I took a step - I called and gave notice to our current treatment centre that we will be phasing away from their services as soon as possible. We are meeting with another agency Monday to start brainstorming how to create what our son needs and from this agencies support over the past few weeks we are really optimistic and hopeful for this process. To be truthful I haven't felt those emotions in quite some time and it feels good to know that I do indeed have a range beyond panic, grief, anger, frustration and numb.
The sun is finally shining today, I had a relaxing lunch with my mom and my headache has finally gone away. Things are looking up.
But alas - I am here. I am digging my way out.
C has been having a hard time of it. I don't believe my mood is completely responsible but I do know it has contributed. This is also historically his hardest time of year, right around Easter. We have never known why (though we have some working hypothesis) but we just know that we should prepare for huge mood swings at this time of year. I had hoped we might escape it now that we have the BiPolar diagnosis and he has been on meds for it for many months. But while the meds have certainly stopped us from hitting rock bottom there is a definite amount of mixed mania and depression hitting him, rapid cycling that is so rapid it leaves me shaking and completely exhausted afterward.
I've also had some very stressful meetings with Corbin's "team" over the past few weeks. His current plan is not working for him or for us and we have been trying to figure out how to change it. Its not easy. There are so many restrictions placed on us from varying Ministry bodies (that I cannot get into on this blog) but lets just say that I find it mind boggling at this point that it is not funding that is holding us back but rather trying to find approved service providers who can work with us and our son to create the life that he needs. I know I am being vague here - and I really wish I could write more. There have been things said and done to me (and our son) the past several months that would make your jaw drop.
But today I took a step - I called and gave notice to our current treatment centre that we will be phasing away from their services as soon as possible. We are meeting with another agency Monday to start brainstorming how to create what our son needs and from this agencies support over the past few weeks we are really optimistic and hopeful for this process. To be truthful I haven't felt those emotions in quite some time and it feels good to know that I do indeed have a range beyond panic, grief, anger, frustration and numb.
The sun is finally shining today, I had a relaxing lunch with my mom and my headache has finally gone away. Things are looking up.
Wednesday, April 20, 2011
Bite Your Tongue
When people are pregnant they take birthing classes of some sort and to adopt domestically you take adoption classes. This is all to prepare you as much as possible for your upcoming role. I get it that no class can teach everything there is to know about the upcoming journey in either of these situations. But you get a little more prepared, you find out how to get more information later if you need it, you hide under your covers at home and hyperventilate about what you learned in class and wonder why everyone else seems so freakin calm.
What they need to offer people who have a child with a disability (or special need, or challenge or whatever you politically/philosophically wish to call it) are mediation classes. We need to learn how to become expert negotiators - how to be firm but calm, clear in our expectations but finding a way to make the people sitting across the table from think the whole thing is THEIR idea. We need to be skilled negotiators, special education lawyers, poker players, skilled salespeople. We need to be able to get the other party to "yes", all the while maintaining our dignity and the relationship - without the relationship with the other party(ies) we have very little hope (I'm stubborn, I will never say NO hope)
What no one tells is that even though it is our child we are discussing and everyone goes into meetings knowing that it is natural for us to be emotional and sensitive during these talks, the truth is we have to live up to an almost impossible expectation. Other people will be allowed to deliver their criticisms of us and our child, they will be allowed to give their opinion loud and clear, they will be allowed to get defensive and perhaps even mess up and be offensive. However. Us parents?? Don't even think about it.
Try not to cry - they will take it as a sign of weakness and dismiss you
Do not yell - they will stop listening to anything you say EVER
Do not personally attack - they will be affronted and everyone around them will close ranks and hold it against you
Do not state your opinions too strongly - they will all go on the defensive and that wall will be up faster than you can shut your mouth closed.
Apparently no one has told them not to do this to us, the parents. Apparently it is a free for all and if you complain you run the risk of just getting labelled as a trouble maker.
You hold yourself accountable, follow all the "rules", you remain calm in every instance and put your heart and soul into trying to make a very difficult situation work and still . . . .
They decide that you don't know what you are talking about, they dismiss you as "impossible to make happy" and they stoop to levels that are mindboggling.
But you hold your tongue and you calmly tell them that you are taken aback and deeply offended. You force them to finish having a civilized conversation while the person you brought to the meeting for emotional support writes everything down and yet they still keep saying reprehensible things. You don't just sit back and take it - you respond and ask questions but you do it in an eerily calm way. You leave the meeting shaking but in a way relieved they have showed their hand so clearly. You are thankful that even though they made the tactical error of taking off their gloves and fighting dirty that you had the presence of mind to keep yours on. You battled gallantly (and their blows certainly hurt) and hopefully one day they will look back and feel ashamed of themselves.
You know that you did what was necessary, that stooping to their level would not have helped. It would have done irreparable harm and would have taken years, if ever, to build back up to just the levels you were at before the meeting. Retaliation is not the answer. You did the right thing.
But man it sucks.
It is tiring being the only one in a room that has to hold themselves to such a high standard. Having to share and expose your family to "professional" after "professional" and most not even of your own choosing. It is horrible to know what your child needs but to be at the mercy of others to make it happen. It is horrible to know that you must strategize relentlessly about your child's life. I said a long time ago I don't want to fight.
Why can't we do things just because they are the right thing to do?????
What they need to offer people who have a child with a disability (or special need, or challenge or whatever you politically/philosophically wish to call it) are mediation classes. We need to learn how to become expert negotiators - how to be firm but calm, clear in our expectations but finding a way to make the people sitting across the table from think the whole thing is THEIR idea. We need to be skilled negotiators, special education lawyers, poker players, skilled salespeople. We need to be able to get the other party to "yes", all the while maintaining our dignity and the relationship - without the relationship with the other party(ies) we have very little hope (I'm stubborn, I will never say NO hope)
What no one tells is that even though it is our child we are discussing and everyone goes into meetings knowing that it is natural for us to be emotional and sensitive during these talks, the truth is we have to live up to an almost impossible expectation. Other people will be allowed to deliver their criticisms of us and our child, they will be allowed to give their opinion loud and clear, they will be allowed to get defensive and perhaps even mess up and be offensive. However. Us parents?? Don't even think about it.
Try not to cry - they will take it as a sign of weakness and dismiss you
Do not yell - they will stop listening to anything you say EVER
Do not personally attack - they will be affronted and everyone around them will close ranks and hold it against you
Do not state your opinions too strongly - they will all go on the defensive and that wall will be up faster than you can shut your mouth closed.
Apparently no one has told them not to do this to us, the parents. Apparently it is a free for all and if you complain you run the risk of just getting labelled as a trouble maker.
You hold yourself accountable, follow all the "rules", you remain calm in every instance and put your heart and soul into trying to make a very difficult situation work and still . . . .
They decide that you don't know what you are talking about, they dismiss you as "impossible to make happy" and they stoop to levels that are mindboggling.
But you hold your tongue and you calmly tell them that you are taken aback and deeply offended. You force them to finish having a civilized conversation while the person you brought to the meeting for emotional support writes everything down and yet they still keep saying reprehensible things. You don't just sit back and take it - you respond and ask questions but you do it in an eerily calm way. You leave the meeting shaking but in a way relieved they have showed their hand so clearly. You are thankful that even though they made the tactical error of taking off their gloves and fighting dirty that you had the presence of mind to keep yours on. You battled gallantly (and their blows certainly hurt) and hopefully one day they will look back and feel ashamed of themselves.
You know that you did what was necessary, that stooping to their level would not have helped. It would have done irreparable harm and would have taken years, if ever, to build back up to just the levels you were at before the meeting. Retaliation is not the answer. You did the right thing.
But man it sucks.
It is tiring being the only one in a room that has to hold themselves to such a high standard. Having to share and expose your family to "professional" after "professional" and most not even of your own choosing. It is horrible to know what your child needs but to be at the mercy of others to make it happen. It is horrible to know that you must strategize relentlessly about your child's life. I said a long time ago I don't want to fight.
Why can't we do things just because they are the right thing to do?????
Friday, April 08, 2011
Good Enough
Recently I posted on Hopeful Parents about my son's heartbreaking cry for help and understanding. As one commenter asked
We know our son, he does not need punishment and isolation. He does not need to be fixed. He needs structure, loving, kindness. He needs skilled people surrounding him who can help him process as soon as the bad moments have passed. He does not need to be judged. He does not need to be something he is not. He needs people who have gentle hearts and a butt load of compassion and patience.
But it also wasn't as easy as just declaring war on this facility that is charged with his care and treatment. The world my friends is not just black and white, right and wrong for the most part (I proclaim this as much for my own learning as it is for anyone else). Shades of grey abound (much to my chagrin as well as C's). This is an important lesson for both C and I. Sometimes you need to cut and run, sometimes you take a strong stand with a sword in your hand. Sometimes you need to take a strong stand without any weapons all the while exuding love and compassion. I believe my son does the best he can. And as I have said before, I also then believe that (in most instances) others are doing the best they can as well.
It was worth it to try to educate and discuss and problem solve with this agency. And they have tried. The have worked hard. We all have. In the past I have made the mistake of thinking that because something is not working for my son that this means I must declare war on the people "committing" these "crimes" against him. What I know now is it is possible for people to have the best of intentions and still be so completely wrong for my son it makes my head spin.
I cannot change a whole system. I alone cannot change an entrenched systemic belief that punishment will garner good, productive citizens. C cannot be left in that environment any longer. Other kids who have been there have succumbed to the pressures of the unflagging punishment and control. I believe their spirits to have been broken.
That haunts me.
But for C we will begin to move on, we will find a way to build what he needs. Even when it seems impossible we will forge on. Because we have to. Because we have no choice. Because we have to hear his voice and take action. Because he deserves it and he IS GOOD ENOUGH.
I am sure that post was tough to write, but after it was written ---did you feel a bit of relief?Truth is, even as he sat and sobbed (and I sobbed) I felt relief. I knew that this arrangement we had for him was not working. I was trying to plod along and make it work. I hadn't wanted to let my own feelings and misgivings dictate what is good or not good for him - there were so many positives to his time at this facility originally. I can't say too much about all of the particulars but C breaking down like that made me realize - no matter every one's good intentions this will never work for him. It's not meeting his needs and we are going to kill his spirit if it continues much longer. So I felt relieved that it was now going to be over. We could move on and I could be strong in my resolve that this was the necessary course of action.
We know our son, he does not need punishment and isolation. He does not need to be fixed. He needs structure, loving, kindness. He needs skilled people surrounding him who can help him process as soon as the bad moments have passed. He does not need to be judged. He does not need to be something he is not. He needs people who have gentle hearts and a butt load of compassion and patience.
But it also wasn't as easy as just declaring war on this facility that is charged with his care and treatment. The world my friends is not just black and white, right and wrong for the most part (I proclaim this as much for my own learning as it is for anyone else). Shades of grey abound (much to my chagrin as well as C's). This is an important lesson for both C and I. Sometimes you need to cut and run, sometimes you take a strong stand with a sword in your hand. Sometimes you need to take a strong stand without any weapons all the while exuding love and compassion. I believe my son does the best he can. And as I have said before, I also then believe that (in most instances) others are doing the best they can as well.
It was worth it to try to educate and discuss and problem solve with this agency. And they have tried. The have worked hard. We all have. In the past I have made the mistake of thinking that because something is not working for my son that this means I must declare war on the people "committing" these "crimes" against him. What I know now is it is possible for people to have the best of intentions and still be so completely wrong for my son it makes my head spin.
I cannot change a whole system. I alone cannot change an entrenched systemic belief that punishment will garner good, productive citizens. C cannot be left in that environment any longer. Other kids who have been there have succumbed to the pressures of the unflagging punishment and control. I believe their spirits to have been broken.
That haunts me.
But for C we will begin to move on, we will find a way to build what he needs. Even when it seems impossible we will forge on. Because we have to. Because we have no choice. Because we have to hear his voice and take action. Because he deserves it and he IS GOOD ENOUGH.
Monday, April 04, 2011
If He Comes, Will they Build It?
You know that saying from Field of Dreams . . . "If you build it, HE will come"
I'm wondering does it work the other way?
If our son needs something that doesn't exist in our community - if we are able to do the right things will it get "built" for him simply because he has come and is ready and waiting?
Some people think I am delusional for thinking we can individualize in a system so entrenched with "programs" and outdated cookie cutter approaches.
But, you know, I'm okay with that.
The guy on Field of Dreams was thought to be delusional. And look what he accomplished.
(okay, no one point out to me that Field of Dreams is a work of fiction - we all need inspiration at times no matter the source).
I'm wondering does it work the other way?
If our son needs something that doesn't exist in our community - if we are able to do the right things will it get "built" for him simply because he has come and is ready and waiting?
Some people think I am delusional for thinking we can individualize in a system so entrenched with "programs" and outdated cookie cutter approaches.
But, you know, I'm okay with that.
The guy on Field of Dreams was thought to be delusional. And look what he accomplished.
(okay, no one point out to me that Field of Dreams is a work of fiction - we all need inspiration at times no matter the source).
Tuesday, March 29, 2011
Busy & Bumpy Days
The last few days have been very hectic for me. For a year I wasn't able to work as we travelled back and forth for C and tried to get our lives to what we consider "normal". In that time I actually started to embrace being a full time parent. However, I need something for me outside these 4 walls and we could honestly use some money coming in as having a child hospitalized 2 hours away and a significant cut in income can really cut into savings.
So about a month ago I was fortunate enough to be asked to take on a small part of a project geared to helping our community rethink housing for individuals with disabilities and other needs in our community. It hits home for me and I've immersed myself in all the research and community outreach. Much of that work culminates today in a community forum. We had hoped to get 75 people in attendance. As of last night there were 148 registered and the calls and emails continued to come in.
On the home front C has had some rough days with the treatment centre he attends part time. It's culminated in hisrefusal inability to attend. I won't go into detail because that's his story to tell should he wish to some day - but I will say yet again that my dream for this world is that people could, in the face of what seems like acting out behaviour or noncompliance, act with compassion and guidance rather than threats and power struggles. Going into a meeting with the centre tomorrow, I'm not at all sure what the future holds - but I do feel peace and conviction in what I know my son does and doesn't need. My son is good enough just the way he is, thank you very much. That will guide me, no matter how bumpy and unpredictable the path.
So about a month ago I was fortunate enough to be asked to take on a small part of a project geared to helping our community rethink housing for individuals with disabilities and other needs in our community. It hits home for me and I've immersed myself in all the research and community outreach. Much of that work culminates today in a community forum. We had hoped to get 75 people in attendance. As of last night there were 148 registered and the calls and emails continued to come in.
On the home front C has had some rough days with the treatment centre he attends part time. It's culminated in his
Monday, March 21, 2011
Trust
I get to the residence to pick him up. He's just had 6 hours of Respite at our local adolescent treatment centre. The residence he "hangs" at has about 6 teenage boys, some who are living there permanently. I'm hopeful that today went better than previous Saturdays. He attends the same program during the week but our attempts at weekend overnight Respite hit some bumps so we dialed back and are working on his building relationships with the weekend staff. It's all about relationships. When he feels safe and understood he is a different child. People need to experience him repeatedly to really understand him. People have to prove to him that they can be trusted.
When I pull open the door he greets me right away. Not with "hi mom" but rather with "I got a sliver, I need tweezers!" at the top of his lungs. He is moving back and forth, room to room while trying to explain to me what is wrong. I begin to piece it together - he has moved quickly down the stairs, sliding his hand on the banister and getting a sliver in his thumb. I take a quick look - while his whole body bounces and jiggles. I can't see a sliver but I can see a slight abrasion. I assure him we can take care of it at home. He begins telling me the story again, his voice rising. At that moment he sees the staff come around the corner - the man he has built a good relationship with over the past several months. One of the key people who supported him during his transition to this particular program.
"Hey, I need tweezers!" C demands of the staff. I can see he is beginning to spin out of control. I am hoping we can head this off and get him to the van quickly. Before I can respond the staff says, in a matter of fact voice "I told you three times already when you asked - we don't have any. Besides I can't see anything to pull out of your thumb!"
"You're first aid kit will have some. You have to have a first aid kit. Everyone needs to have one" barks C.
The staff shrugs, "sorry bud - don't have any" and walks away to help one of the other boys with something.
This is the part of the story that I SHOULD have done things differently. If I could this is what I would have done: I would have said to C, in front of the staff "Wow, C, that must have hurt when you did that. I bet what you need from Joe (not staffs real name) is for him to know that your hurt and you need his help" and then I would have turned to Joe and said "I know I got here just now, I'm assuming you were just about to help C with his thumb because he was letting you know by asking for tweezers that he needs your sympathy and help".
But what I said was "ok C, lets go and we will take care of it at home". And we did, or at least we tried. It was clear once we got home that he had tried to get it out on his own and while I couldn't actually see a sliver he did have a faint line running down his thumb. 2 days later his thumb, despite my first aid attempts, was severely infected. And my son was refusing to return to the centre.
The amazing part was that he was actually able to say "I'm not going there because they didn't help me with my thumb so I can't trust them".
Amazing again was the Managers response when I called to share with her "Oh, we are sooo sorry that happened to him and that we didn't respond better. He needed our help and we let him down. I will talk to the staff". In her follow up call she said to me "I'm assuming this incident really set off some attachment issues for him. I'm hoping we can meet soon to talk more about how we can support him."
It's all a work in progress, for all of us. We all are trying to get better at letting others know our needs and building trust, not just C. But we are all making progress and I couldn't ask for much more than that.
When I pull open the door he greets me right away. Not with "hi mom" but rather with "I got a sliver, I need tweezers!" at the top of his lungs. He is moving back and forth, room to room while trying to explain to me what is wrong. I begin to piece it together - he has moved quickly down the stairs, sliding his hand on the banister and getting a sliver in his thumb. I take a quick look - while his whole body bounces and jiggles. I can't see a sliver but I can see a slight abrasion. I assure him we can take care of it at home. He begins telling me the story again, his voice rising. At that moment he sees the staff come around the corner - the man he has built a good relationship with over the past several months. One of the key people who supported him during his transition to this particular program.
"Hey, I need tweezers!" C demands of the staff. I can see he is beginning to spin out of control. I am hoping we can head this off and get him to the van quickly. Before I can respond the staff says, in a matter of fact voice "I told you three times already when you asked - we don't have any. Besides I can't see anything to pull out of your thumb!"
"You're first aid kit will have some. You have to have a first aid kit. Everyone needs to have one" barks C.
The staff shrugs, "sorry bud - don't have any" and walks away to help one of the other boys with something.
This is the part of the story that I SHOULD have done things differently. If I could this is what I would have done: I would have said to C, in front of the staff "Wow, C, that must have hurt when you did that. I bet what you need from Joe (not staffs real name) is for him to know that your hurt and you need his help" and then I would have turned to Joe and said "I know I got here just now, I'm assuming you were just about to help C with his thumb because he was letting you know by asking for tweezers that he needs your sympathy and help".
But what I said was "ok C, lets go and we will take care of it at home". And we did, or at least we tried. It was clear once we got home that he had tried to get it out on his own and while I couldn't actually see a sliver he did have a faint line running down his thumb. 2 days later his thumb, despite my first aid attempts, was severely infected. And my son was refusing to return to the centre.
The amazing part was that he was actually able to say "I'm not going there because they didn't help me with my thumb so I can't trust them".
Amazing again was the Managers response when I called to share with her "Oh, we are sooo sorry that happened to him and that we didn't respond better. He needed our help and we let him down. I will talk to the staff". In her follow up call she said to me "I'm assuming this incident really set off some attachment issues for him. I'm hoping we can meet soon to talk more about how we can support him."
It's all a work in progress, for all of us. We all are trying to get better at letting others know our needs and building trust, not just C. But we are all making progress and I couldn't ask for much more than that.
Tuesday, March 15, 2011
To Tell or Not to Tell, That is the Question
Over the years I have given a lot of my time and brain power (as diminished as it might be on many occasions) to this question:
When faced with a situation in the community where my child has been struggling or done something to bring attention to himself - do I TELL that person or persons about his complex needs?
Which then inevitably lead to more questions:
If yes, then how much or how little do I say?
Do I give the correct DSM label? or just give layman's terms and references?
Am I violating my child's right to privacy by telling?
Will the person honour what I have told them or use it in some way against my child and/or me?
WHY should I even care what other people think about my child?
Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?
Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn't that ok sometimes? Aren't I entitled to be less than perfect?
And on and on and on.
You get the picture.
There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.
The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn't assume that a child "acting out" is the same as a child "being bad" or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.
The world is not ideal.
However, I must say that, in almost EVERY instance where we have chosen to share some of our son's story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own "pay it forward" scenario.
I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn't follow that same practice?
I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.
When faced with a situation in the community where my child has been struggling or done something to bring attention to himself - do I TELL that person or persons about his complex needs?
Which then inevitably lead to more questions:
If yes, then how much or how little do I say?
Do I give the correct DSM label? or just give layman's terms and references?
Am I violating my child's right to privacy by telling?
Will the person honour what I have told them or use it in some way against my child and/or me?
WHY should I even care what other people think about my child?
Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?
Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn't that ok sometimes? Aren't I entitled to be less than perfect?
And on and on and on.
You get the picture.
There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.
The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn't assume that a child "acting out" is the same as a child "being bad" or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.
The world is not ideal.
However, I must say that, in almost EVERY instance where we have chosen to share some of our son's story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own "pay it forward" scenario.
I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn't follow that same practice?
I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.
Wednesday, February 16, 2011
Reminder to Myself
Things for C are going well (and yes, I know I just tempted fate by blogging that but oh well). He has his ups and downs and every day is a challenge - and yet, he's managing everything and compared to how things have been in the past things are good.For me I gauge that he's having good days partially by if I think he is happy and partially by if I am receiving phone calls from school and the treatment centre about concerns or not. I have not been getting any calls lately and overall C seems happy.
What does that mean for me though? Does this mean that because I can tell people he is doing well that the same goes for me - that we are so entwined that his "good" day dictates that I have a good day? Cause let me tell you - his "good days" that I am SOOOO thankful for come at a HUGE cost to me. The patience and calm that must absolutely ooze out of every pour of my body in order to help him stay regulated. The work calls and tasks (yes I'm trying to do some contract work that allows me to mostly work from home) that I have to just drop, sometimes literally mid-call, to tend to his increasingly overwhelmed system.
We increased C's time at his community school this week. I had held everyone off, including C, as long as I could. I knew in my gut he was as ready as he was going to be - and yet, I've been down this road before. Even good and happy and successful experiences can wreak havoc on C. I knew that the more time he spends at school, the more he will use up all of his reserves trying to act right and control himself. Then he will come home and be dysregulated. Funny though - even though you KNOW it's going to happen there is no way to prepare fully.
So I'm doing my best to keep calm and to stay focused on what is important. It's important to be there for my son and to help him to regulate. And I do see that it is taking less from me to help him do that. I am mindful that he has made huge progress.
What I don't need are so called "professionals" who know absolutely nothing about attachment or therapeutic parenting or really anything about how to "handle" kids with anything other than threats and punishment - I don't need those people making insinuations and assumptions about my parenting. Even more so I need to remind myself that I don't care what they think - I know I am doing right by my son. I will pray that one day they will understand what we are trying to do. I will pray that they will reign in their harmful practices. I will pray that when they do one day realize how different their approach could have been that they will be able to forgive themselves because just as sure as I am that they are doing incredible harm I also know that their hearts are in the right place and they really believe they are doing good.
What does that mean for me though? Does this mean that because I can tell people he is doing well that the same goes for me - that we are so entwined that his "good" day dictates that I have a good day? Cause let me tell you - his "good days" that I am SOOOO thankful for come at a HUGE cost to me. The patience and calm that must absolutely ooze out of every pour of my body in order to help him stay regulated. The work calls and tasks (yes I'm trying to do some contract work that allows me to mostly work from home) that I have to just drop, sometimes literally mid-call, to tend to his increasingly overwhelmed system.
We increased C's time at his community school this week. I had held everyone off, including C, as long as I could. I knew in my gut he was as ready as he was going to be - and yet, I've been down this road before. Even good and happy and successful experiences can wreak havoc on C. I knew that the more time he spends at school, the more he will use up all of his reserves trying to act right and control himself. Then he will come home and be dysregulated. Funny though - even though you KNOW it's going to happen there is no way to prepare fully.
So I'm doing my best to keep calm and to stay focused on what is important. It's important to be there for my son and to help him to regulate. And I do see that it is taking less from me to help him do that. I am mindful that he has made huge progress.
What I don't need are so called "professionals" who know absolutely nothing about attachment or therapeutic parenting or really anything about how to "handle" kids with anything other than threats and punishment - I don't need those people making insinuations and assumptions about my parenting. Even more so I need to remind myself that I don't care what they think - I know I am doing right by my son. I will pray that one day they will understand what we are trying to do. I will pray that they will reign in their harmful practices. I will pray that when they do one day realize how different their approach could have been that they will be able to forgive themselves because just as sure as I am that they are doing incredible harm I also know that their hearts are in the right place and they really believe they are doing good.
Saturday, February 12, 2011
My "friend"
I was reading Marty's Musings over at Waldenbunch and she had posted about her "friend" financial worry that holds her back.
My friend is free floating anxiety. I've lived with it my whole life. Waking up in the morning and being hit by this horrible, gut wrenching feeling of dread and despair.
But when I take a moment to take stock of my life I quickly realize - everything is ok. I'm ok. There really isn't anything looming (usually). The interesting thing is that when there IS something to be stressed and worried about - that is when I feel really calm and just move into action mode.
So far this morning I have yelled and screamed at every member of my family. Apparently I seem to be really mad about something or at someone. But when I took a moment to reflect I realized - I'm just back to feeling anxious and worried. Much like our kids who have experienced trauma - something has triggered in me and I'm lashing out and driving people away.
But now that I have recognized and labelled my own miscuing - maybe I can sort this out sooner rather than later. Or at least one can dream. I too have a feeling that, as Marty wrote -
What is your "friend"?
My friend is free floating anxiety. I've lived with it my whole life. Waking up in the morning and being hit by this horrible, gut wrenching feeling of dread and despair.
But when I take a moment to take stock of my life I quickly realize - everything is ok. I'm ok. There really isn't anything looming (usually). The interesting thing is that when there IS something to be stressed and worried about - that is when I feel really calm and just move into action mode.
So far this morning I have yelled and screamed at every member of my family. Apparently I seem to be really mad about something or at someone. But when I took a moment to reflect I realized - I'm just back to feeling anxious and worried. Much like our kids who have experienced trauma - something has triggered in me and I'm lashing out and driving people away.
But now that I have recognized and labelled my own miscuing - maybe I can sort this out sooner rather than later. Or at least one can dream. I too have a feeling that, as Marty wrote -
This "friend" and I will probably do battle for a lifetime.
What is your "friend"?
Monday, February 07, 2011
How I Stopped from Drowning
In response to my last post at Hopeful Parents, Get in the Pool, Louise of BLOOM left the following comment:
WOW!!! What a powerful post! I love this analogy of drowning and it is perfect and meaningful!!! When you say you went through your own "drowning," when your body was failing you, how did you rescue yourself?I told her that was a very good question, one that I have been thinking about a lot lately. I promised her I would post a follow up on my blog to answer her question. I have never written in detail about what happened in our family in 2010 but you can get a sense of my emotional state here and here. But more specifically here is an answer to Louise's question about how did I rescue myself from drowning :
First, it's important to know that at the time this was all happening (my son in treatment 2 hours from our home, becoming a one income family, our youngest asking to schedule meetings with us in order to spend time with us) I was not aware I was drowning. I was doing everything I could to just get my son somewhere safe. Once he was safe people kept telling me that now things would get better - but they didn't get better for me, not for a long time. I had been waging my own private war for years and now my mind and body could not stand any longer. I sank under the water. For a while I just succumbed to the drowning and then things started to change over time - what follows here is my attempt at organizing and summarizing those changes.
Overfunctioning:
I stopped overfunctioning more by necessity than by choice in the beginning - I looked like crap, I felt like crap. I didn't try to put on a fake smile and get through the day.I stopped feeling responsible for everyone's happiness around me - cause I could barely put my socks on or complete a sentence. I let down my guard and when people offered to help - like to make us a meal or take my younger son for a few hours, I just let them because I was too tired to try to fight it. I was too exhausted to worry about what people would think of me. I stopped cracking jokes to hide my pain and instead wrote emails and had face to face conversations with people where I cried like a baby and I told them my biggest fears. I let people hug me and offer me comfort. I stopped working and it felt like the world was ending.
While there were many things I loved about my job, it was a huge burden to me at the time. One more very big thing that needed my full attention and commitment. Attention and commitment that I just couldn't give. Freeing myself of that obligation was a huge weight off my shoulders.
I stopped offering to assist with community events etc for our local parent network. I couldn't make commitments to anyone for a period of time. I temporarily resigned from all committees and task forces (except one that only meets 4 times a year). I told myself I wouldn't volunteer anywhere for anything for 6 months (in my head I doubted I could make it to 3 months). A year later and I am just now starting to volunteer again.
Several times a day I begin to slip into old patterns - opening my mouth to say "yes" impulsively but now I'm finding it is taking less and less effort to slow down and sometimes say "no" or to delegate things to C's school, treatment team or in home workers. It's taking a lot of practice and while it feels foreign to me most of the time, in the end it also feels very right. I'm hoping that one day my default setting will be one of self preservation first and foremost rather than one of constant sacrifice.
Asking for Help and ACCEPTING Help
I began to understand that no one could hope to parent our son alone. I needed to ask and then let people help me more, to help him, to help our family. I needed to step back and allow others to have more of a role with our son - and people really began to step up to the plate. My Sister in law began visiting him whenever she was in the city he was in. She would bring him special treats and play with him in a way that others at the centre were envious. Other extended family members wrote him letters and called him. I could relax about not always being with him because others were helping to fill in the blanks that the distance was creating. He began to see that other people loved him unconditionally as well, not just his mother.
As I wrote about here, I also needed to get clear about what our family realistically needed from government services and the community professionals in order to be able to plan for our son's return and to be preventative. We needed to do everything in our power to try not to head down this path again. My husband and I spoke at length and he came to more meetings with me during this time. I knew I could trust those at CPRI so I leaned heavily on them during my son's time in residence there and I did not allow myself to feel guilty about it for more than a minute.
I sent out an email to all my close friends and co-workers explaining a little as to what was happening in our family. I was clear, no sugar coating it, that our son and family was in crisis. That we were feeling isolated and overwhelmed. I asked people to not only keep us in their thoughts and prayers but also to please stay in touch - as living with a child with severe and complex mental health needs can be so isolating.
In response my co-workers started up a meal chain for us - It was a huge weight off my shoulders when someone brought a meal twice a week and I could relax and know that if nothing else happened that day at least my family ate a good healthy meal. It also made my friends feel useful, they felt like finally there was something they could do to help our family after watching us struggle for so long. They had all stopped offering to help years ago because I thought it was all my burden to carry and it felt weak and wrong to accept things from people in that way. But when I was travelling 4 hours several times a week to see our son it no longer felt weak or wrong to accept - it felt right and we were (are) so thankful for that. I see now that it was my pride standing in the way.
Connecting with People
Beyond accepting help - I knew I needed to end the isolation that had crept up on me and my entire family. When you have a child with unpredictable rages and out of control anxiety and severe loss of reality there is no safe place in the world but home is your best bet. So I made a concerted effort to find ways to share with trusted people about the trials and tribulations in our day to day life that would make me feel less alone but would not be speaking ill of my struggling child. I needed to let my guard down and allow myself to be vulnerable to people who could be trusted. I needed to know that although it felt like if I allowed myself to cry that I would never stop, that it wasn't true. I could feel and face the emotions without being destroyed by them.I discovered that it felt really good to be hugged when I was in pain.
Taking Care of Myself
I admit it - I would always cringe and maybe kind of go "ya ya whatever" in a dismissive way whenever people, books, media would talk about how important it is for parents of children with complex needs to "take care of themselves". I always brushed it off and was more than slightly annoyed. Sure, take care of myself when I can barely get through each day. Sure, let me get right on that.
The truth however, long before I became a mother I had decided that I wasn't worth spending time, attention, money on. I did the very basic as far as hair and clothes and rarely went out or spent time with friends. The why of this could be a whole other
I needed to find ways to take care of myself - to unplug from the world and find inner peace and joy. I needed to reach out to friends and acquaintances and go for coffee and get a massage (*note: I have some serious sensory issues and it was a HUGE leap for me to give and receive hugs, to move on to getting a massage was monumental). I needed to put down all the books about disorders and government and lack of funding. I needed to focus on reading silly, lighthearted books and taking bubble baths. I needed to get my hair done and drink way too many coffee's. I needed to do things that felt good, that felt freeing, that I had long ago abandoned and forgotten.
I also spent money I didn't have to go back to therapy. I needed to be able to talk to someone, to process with someone all that had and was going on in my life. I needed a safe place to fall apart and to explore and to sort through. It was a hard decision in that it was not cheap and I always felt like I should be able to do it without therapy. But that argument with myself was short lived. I was fighting for my life and I believe in therapy and so I went and I worked hard.
Hope
I needed to fiercely believe that my son would be ok and I needed to believe that even if he wasn't that we would survive it. I needed to purge our lives of the negative, naysayers who did not support our son and/or did not share his vision for how he wanted his life to be. I will write more about this later.
So there is my first attempt to summarize how I stopped drowning. Really it was a combination of learning how to swim better and grabbing hold of the lifeline's that people threw to me. I'm curious to know - have other parents felt like they were drowning at times? If so - what did you do? what helped you? Post a comment or link to your blog. I'm far from done this part of my life - I feel like I'm hanging on to the edge of the pool catching my breath - fully aware I could start to sink any moment if I don't keep moving.
Saturday, September 18, 2010
Sweet Sweet Denial
I admit wholeheartedly that denial is one of my strongest coping strategies.
Denial often gets a bad rap, people berate themselves for living in denial and people judge each other about states of denial.
Denial and me - we are like that (you can't see me but I am crossing my fingers together to connote that we are very very close). I am good with that. Denial is a welcome friend at times.
Unfortunately I also have too much insider knowledge sometimes. Having worked for over 15 years in early intervention with a focus on mental health and for quite some time as an advocate and resource to families of children with disabilities - sometimes I have way too much information inside this brain to be able to deny the path we are on or what something might mean. That's hard. When I am dealing with an agency in town I can try to only go by the experiences we directly have with that agency but I cannot, and should not, ignore other people and family experiences with that same agency. If I have sat in a meeting where a professional for that agency acted reprehensibly and then when the parent appealed to higher powers and was rebuked - then I need to take that into account for my own family. If an agency acted in (what I think is) an abusive way to a child in their care - I NEED to take that into account when considering options for my own child.
But sometimes that knowledge and experience can make you hyper vigilant and it becomes very hard to trust. You cannot take people at their word - you find that you need them to prove to you over and over that in the end they will do what is right and do the least harm possible. That, as many of you know, is exhausting all on its own. I am already exhausted by the time I drop off C every morning - to then spend the day trying not to worry and the nights going over and over the events of that day - beyond exhausting.
That makes me sad. That is how my son lives and now I follow in his footsteps. I don't worry that my son will be misunderstood or hurt (emotionally more than physically) in some way. I assume that he will. Instead I hope that the occurrence will be minimal and that the people involved will be able to repair their relationship with him AND me.
C had a very difficult day yesterday in his day treatment program. From all accounts (even from C) it seems as though they handled it quite well. Of course there are things that I would have done differently. Of course I only have part of the story and will never get the whole story as I was not there. Of course there are a couple of items from the day that give me pause and concern but no alarm bells are screeching. At least not yet. A is counselling me to go in on Monday and focus with them about all the things they did right - much like the approach we would take with C himself. Focus on the positive. I know he is right, I had the same thought. But I also feel worried that I might reinforce the negative aspects of what I understood occurred. There aren't many (that I know of) but they feel important to me because they are important to C.
So as we head into this weekend I am inviting sweet denial to come on over and hang out at my house. She did a great job around the whole domestic duties issue (my house is a mess and I have been blissfully able to ignore it) and now that I have emerged from denial about the house there should be plenty of time and room for her to work her magic as far as C and agency issues. A healthy dose of denial for even just a few days would be welcome.
Denial often gets a bad rap, people berate themselves for living in denial and people judge each other about states of denial.
Denial and me - we are like that (you can't see me but I am crossing my fingers together to connote that we are very very close). I am good with that. Denial is a welcome friend at times.
Unfortunately I also have too much insider knowledge sometimes. Having worked for over 15 years in early intervention with a focus on mental health and for quite some time as an advocate and resource to families of children with disabilities - sometimes I have way too much information inside this brain to be able to deny the path we are on or what something might mean. That's hard. When I am dealing with an agency in town I can try to only go by the experiences we directly have with that agency but I cannot, and should not, ignore other people and family experiences with that same agency. If I have sat in a meeting where a professional for that agency acted reprehensibly and then when the parent appealed to higher powers and was rebuked - then I need to take that into account for my own family. If an agency acted in (what I think is) an abusive way to a child in their care - I NEED to take that into account when considering options for my own child.
But sometimes that knowledge and experience can make you hyper vigilant and it becomes very hard to trust. You cannot take people at their word - you find that you need them to prove to you over and over that in the end they will do what is right and do the least harm possible. That, as many of you know, is exhausting all on its own. I am already exhausted by the time I drop off C every morning - to then spend the day trying not to worry and the nights going over and over the events of that day - beyond exhausting.
That makes me sad. That is how my son lives and now I follow in his footsteps. I don't worry that my son will be misunderstood or hurt (emotionally more than physically) in some way. I assume that he will. Instead I hope that the occurrence will be minimal and that the people involved will be able to repair their relationship with him AND me.
C had a very difficult day yesterday in his day treatment program. From all accounts (even from C) it seems as though they handled it quite well. Of course there are things that I would have done differently. Of course I only have part of the story and will never get the whole story as I was not there. Of course there are a couple of items from the day that give me pause and concern but no alarm bells are screeching. At least not yet. A is counselling me to go in on Monday and focus with them about all the things they did right - much like the approach we would take with C himself. Focus on the positive. I know he is right, I had the same thought. But I also feel worried that I might reinforce the negative aspects of what I understood occurred. There aren't many (that I know of) but they feel important to me because they are important to C.
So as we head into this weekend I am inviting sweet denial to come on over and hang out at my house. She did a great job around the whole domestic duties issue (my house is a mess and I have been blissfully able to ignore it) and now that I have emerged from denial about the house there should be plenty of time and room for her to work her magic as far as C and agency issues. A healthy dose of denial for even just a few days would be welcome.
Sunday, November 25, 2007
The Alphabet Soup of Diagnosis
I think we have reached an impasse. I am really struggling with what to do. On the one hand I refuse to be beholden to diagnosis, I don't want my child prejudged or held down by man made labels. I try to tell myself that the letters that exist after his name are already enough for a 9 year old, do I really want to add more? For what purpose? As it is we had a school meeting a few weeks ago and the Special Education coordinator was new and I spent five minutes just listing the various diagnosis and "issues" - all the while trying to start with my sons strengths and being respectful of all his wonderful qualities rather than making him sound like a walking DSM-IV
So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).
Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.
So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).
Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.
Subscribe to:
Posts (Atom)