Something is happening. Our world is rearranging itself aruond us and settling and there is a calm. For the first time I can remember I accept and welcome it. Usually I am too ready to jump forward toward the next crisis to really just enjoy the calm moments, the moments when things seem to be right for once.
I met today with Monster’s special ed team and we discussed alternate placement for him. Right now he is 40% in a regular classroom, 60% in special ed classes. The change would puthim 100% in special ed classes.The other school in our district has a program for children with aggression issues. Half are ASD like Monster, the other half have their own issues – neglect, abuse, etc. But each child individually is treated the way he needs to be treated to flourish. The kids who understand consequences get them. The others, like Monster, get the positive behavior reinforcement.
The team descirbed the classroom to me as one with lamps instead of humming fluorescent overhead lights, soothing music playing low in the background, and a sense of peace and quiet and of being sheltered. We are going to tour next Wednesday and if we like it Monster will start there the following Monday. The bussing will be taken care of by the school.
This is a program that attempts to integrate each child as they become ready. They may start with an hour a day in a regular classrom, and with an aide right by their side. They work their way up to as far as the child can go. Sometimes this means complete integration. Other times the child will always be in this classroom at least part of the time.
I actually feel hopeful about this. It sounds like exactly what Monster needs. His caseworker said, everything that Monster is having the big problems with in his current school would be removed simply by moving him to this classroom.I am not even going to let myself worry over whether or not this means I am admitting defeat. Because this isn’t about me. It’s about doing what is best for my son. Do I want him in a 100% disabled classroom, thus ensuring he is labelled forever as one of “those kids”? Oddly, I don’t care anymore. I want him to be someplace where he is happy. Where he is less stressed. Where he can learn in his own way and be his own person and hopefully make friends with other kids like him.
I am letting everything go for once. I need to sit this one out. It feels like this is a gift to my child, and I am not going to spend time worrying over it. I will tour on Wednesday and if I like the place, he is going. No second guessing. He is not in the right place now – this can only be a step in the right direction.
Friday, February 29, 2008
Tuesday, February 26, 2008
The bus stop
Every day my son can't wait to get down to the bus stop. He runs out ahead of me and charges down the street, eager to meet up with his friends and play until the bus comes. There are squabbles over places in line. You need to hold your place with your backpack or stand in line in person. Since Monster runs ahead and I carry his backpack (bad, spoiling Mommy!) he has no way to save a space in line. Luckily he has finally stopped caring about his place in line and just runs around chasing the other kids until we al hear the rumble of the bus around the corner. Then it's quick - get your backpack on and get into line! And suddenly line placement is important to him and if he stops to hug and kiss me he loses his place. The other day he climbed onto the bus and sat there looking out the window with tears streaming down his face. What happened?!!?! it turned out he had just realized he had not gotten a hug and kiss before climbing onto the bus. The bus drove off as I blew my son kisses, trying to cheer him up.
Now before Monster bolts out the front door I give him a hug and kiss there, so that he doesn't need to worry about it when the bus is rumbling down the street, kids are jockeying for line position, and he needs to get his backpack on. And it works so well. Today as the bus rumbled toward us Monster was waving wildly, excited about getting onto the bus with none of the usual anxieties about hugs and when he gets to climb on.
Times like this I let myself think Monster is happy. Aside from claiming every day that he is too tired to get up, by the time the bus comes around he is excited and happy. He tells me he has no friends at school but he doesn't seem miserable about it. I need to find out what the truth is about that from his case worker. He has a happy home life where there is peace and quiet and Mommy and Daddy who love him unconditionally, and he has toys galore.
I sometimes get too wrapped up in the negatives and don't realize that hubby and I are doing a pretty good job taking care of the Monster. Sometimes I can even tell myself that he is as lucky to have us as we are to have him.
Maye I need to give this school a chance. Maybe I need to stop pushing so hard for something when Monster might be fine where he is. I will go to the meeting but I am not going to insist on anything now. It will be interesting to hear the team's input on how they think Monster is doing on his new IEP.
I wish there was a handbook that told me, step-by-step, exactly what I needed to do to raise a happy, healthy, well-adjusted child. I wish I could sit there and say, "well, I've done everything I was supposed to do before Age 6. Now we just sit back and wait, and if Monster isn't happy, it's his problem." I wish.
Seeing him waving excitedly at the bus this morning warmed my heart. He's a sweet child. I want to keep him sweet. I want to do everything right.
Now before Monster bolts out the front door I give him a hug and kiss there, so that he doesn't need to worry about it when the bus is rumbling down the street, kids are jockeying for line position, and he needs to get his backpack on. And it works so well. Today as the bus rumbled toward us Monster was waving wildly, excited about getting onto the bus with none of the usual anxieties about hugs and when he gets to climb on.
Times like this I let myself think Monster is happy. Aside from claiming every day that he is too tired to get up, by the time the bus comes around he is excited and happy. He tells me he has no friends at school but he doesn't seem miserable about it. I need to find out what the truth is about that from his case worker. He has a happy home life where there is peace and quiet and Mommy and Daddy who love him unconditionally, and he has toys galore.
I sometimes get too wrapped up in the negatives and don't realize that hubby and I are doing a pretty good job taking care of the Monster. Sometimes I can even tell myself that he is as lucky to have us as we are to have him.
Maye I need to give this school a chance. Maybe I need to stop pushing so hard for something when Monster might be fine where he is. I will go to the meeting but I am not going to insist on anything now. It will be interesting to hear the team's input on how they think Monster is doing on his new IEP.
I wish there was a handbook that told me, step-by-step, exactly what I needed to do to raise a happy, healthy, well-adjusted child. I wish I could sit there and say, "well, I've done everything I was supposed to do before Age 6. Now we just sit back and wait, and if Monster isn't happy, it's his problem." I wish.
Seeing him waving excitedly at the bus this morning warmed my heart. He's a sweet child. I want to keep him sweet. I want to do everything right.
Monday, February 25, 2008
snuggling with my boy
He's like a cat. He wants full-body contact, so he presses himself all along my side, and then throws one leg over my back. I love the feel of his solid little body against me and his warmth. I let him fall asleep and then slip out of bed and come out here to go online or read. When it's grown-up bedtime we move Monster to his own bed.
It bothers hubby (I am convinced) because it's a place where I get to be the favorite parent. I get to be the favorite parent most of the time, because I pretend to understand my child and I go easy on him where hubby will try to be the tough guy which usually blows up in his face because trying to force M into doing anything is the wrong way to go about it. Monster needs to be persuaded. Then Maybe he'll do what you want him to do. Maybe.
So I get to snuggle up next to my guy and watch his face as he falls asleep. And there is peace and beauty in that little sleeping face. And I get to enjoy the stillness in him - the quiet. It's not there when he's awake ever, so it's a special chance to see that part of him.
And how is this wrong, I ask? Hubby has no answer, other than Monster is too old and needs to know how to fall asleep alone. He does know how to fall asleep alone. And occasionally, he gets to fall asleep with his leg thrown across Mommy's back, and his soft warm breath on my face. I'm guessing someday soon he will not think if this as a special treat. I'm going to take advantage while I can.
It bothers hubby (I am convinced) because it's a place where I get to be the favorite parent. I get to be the favorite parent most of the time, because I pretend to understand my child and I go easy on him where hubby will try to be the tough guy which usually blows up in his face because trying to force M into doing anything is the wrong way to go about it. Monster needs to be persuaded. Then Maybe he'll do what you want him to do. Maybe.
So I get to snuggle up next to my guy and watch his face as he falls asleep. And there is peace and beauty in that little sleeping face. And I get to enjoy the stillness in him - the quiet. It's not there when he's awake ever, so it's a special chance to see that part of him.
And how is this wrong, I ask? Hubby has no answer, other than Monster is too old and needs to know how to fall asleep alone. He does know how to fall asleep alone. And occasionally, he gets to fall asleep with his leg thrown across Mommy's back, and his soft warm breath on my face. I'm guessing someday soon he will not think if this as a special treat. I'm going to take advantage while I can.
They dropped the abuse case
Because I called the police officer about a week after everything happened and told them I didn't want Monster's aide to be put through anymore - I blamed (and still do blame) the daycare as much as her personally.
The thing is, I didn't think this meant that they would just drop the whole case. I thought they would still look into how the daycare was being run, how they went about doing background checks on their employees, etc. I guess I didn't really realize that when I said I didn't want them going after the aide, that everything else got dumped.
Which means she was their scapegoat. They dumped all of the blame on her. And it pisses me off, because they will get away with it.
I still don't regret that I asked them not to go after the aide. I didn't want to make her life a living hell. I just wanted my son safe. I guess I didn't realize at the time how bad this made me look as a parent. I go through all of this and then call them and say, "Never mind"? But the point was, I wanted my son out of that situation, and when they got him the new aide, I was satisfied. But now I feel stupid. I guess I should have let it go. Don't ask me why I stopped it all. I should have let the aide go down. But I couldn't.
I'm not quite sure why I did anything that I did. I went to the police because I was lied to and because my son was injured. but it was ALWAYS the daycare I blamed. Always. Not the aide. I still feel bad for her. And she hurt my son. Makes a lot of sense, right?
The thing is, I didn't think this meant that they would just drop the whole case. I thought they would still look into how the daycare was being run, how they went about doing background checks on their employees, etc. I guess I didn't really realize that when I said I didn't want them going after the aide, that everything else got dumped.
Which means she was their scapegoat. They dumped all of the blame on her. And it pisses me off, because they will get away with it.
I still don't regret that I asked them not to go after the aide. I didn't want to make her life a living hell. I just wanted my son safe. I guess I didn't realize at the time how bad this made me look as a parent. I go through all of this and then call them and say, "Never mind"? But the point was, I wanted my son out of that situation, and when they got him the new aide, I was satisfied. But now I feel stupid. I guess I should have let it go. Don't ask me why I stopped it all. I should have let the aide go down. But I couldn't.
I'm not quite sure why I did anything that I did. I went to the police because I was lied to and because my son was injured. but it was ALWAYS the daycare I blamed. Always. Not the aide. I still feel bad for her. And she hurt my son. Makes a lot of sense, right?
Just a long rambling
I haven’t been this sad and out of sorts since we got Monster’s diagnosis. I have to shake myself up and get myself out of this funk.The truth is, what the after school program did is really doing us a favor. We can save so much money by working different shifts so we can see Monster off in the morning and meet his bus in the afternoon. It’s summer that has me worried. If I can’t find a good PCA then I will have to work ridiculously early and hubby will have to work ridiculously late so we can watch Monster ourselves.
The ones I’ve interviewed so far just don’t fit. There is one who seems nice enough, and I don’t know why I have reservations about her, but I do. Maybe I need to talk to her some more to get a better impression of her.
Another one who was supposed to come by on Saturday stood us up. So much for her being reliable, huh?
OCR is going to ask the after school program for a mediation meeting. If they say no then it goes to investigation. I think if that happens we will drop the case. It’s not worth it. They don’t like my son anyhow.
So – what more do I want? I always manage to recover from these big shake-ups in our life; why do I always fall into such deep despair before I get past it and get on? I scare my little guy when I get like this. And I scare myself too. When it gets to the point that I think about not making that curve on the bridge, not turning the wheel when I need to, I worry about myself.
Honestly, I know I will get through this. I have lived with my depression long enough that I know the real danger signs and know when to ask for emergency help. For now, I just let myself entertain the suicidal thoughts because for some reason they feel necessary – getting past them by wading through them.
Monster needs me to pull myself together though. His whole little life keeps getting so shaken up – thrown out of one daycare after another, and now maybe a new school, and maybe a PCA and a whole new routine. I hate that he’s going through all of this, when really what he needs in his life is some continuity. At least we have been able to keep the details to ourselves. I don’t think he understands that all of these changes are due to his behaviors. But then, he knows a lot more than he ever lets on, and he is so intuitive. He could know everything. Plus I sit here sad because it’s 3:30 and I don’t get to leave until 6 and I want to just hold my boy and smell his hair and feel his weight in my arms. I want to ask him about his day and tell him how wonderful and sweet and amazing he is, and tell him how much I love him. And maybe I’ll let him fall asleep in our bed tonight. Just because we’ve both been so sad. Hubby doesn’t like my enabling Monster like I do – thinks he should be forced to fall asleep alone every night. And, who knows? He may be right. But in the big scheme of things, what does it hurt? Tomorrow a plane could crash on our house or we could be in a car crash. Then what does it matter if Monster got to fall asleep in our bed?
I think I’m too fatalistic. I try to raise Monster to be a good member of society, but there’s a part of me who wonders whether this world will even exist for any of us in ten years. Part of me wants to just leave Monster be and not stress him, and let him be himself and be happy and not have to try to conform to a society in which I have already lost trust. And even if we all reach old age, why is it my job to force my son to become a mindless follower of rules and laws that sometimes don’t even make sense to me?
I used to laugh at homeschoolers, but now I hear myself telling Monster why he has to do something a teacher or aide at school has told him to do, and I wonder to myself, WHY? It isn’t something I agree with. And yet I am telling my son he needs to do what the teacher says. And I know it is about respect of those in authority, and I know that’s important, but the anarchist in me wants nothing to do with it. I try to figure out where the balance is – how to raise my son to be free-thinking, but respectful. How to allow him to think for himself but not have him end up being a child who goes into his school with a gun and shoots everyone who has made him feel bad. And I don’t know what that balance should be.
The ones I’ve interviewed so far just don’t fit. There is one who seems nice enough, and I don’t know why I have reservations about her, but I do. Maybe I need to talk to her some more to get a better impression of her.
Another one who was supposed to come by on Saturday stood us up. So much for her being reliable, huh?
OCR is going to ask the after school program for a mediation meeting. If they say no then it goes to investigation. I think if that happens we will drop the case. It’s not worth it. They don’t like my son anyhow.
So – what more do I want? I always manage to recover from these big shake-ups in our life; why do I always fall into such deep despair before I get past it and get on? I scare my little guy when I get like this. And I scare myself too. When it gets to the point that I think about not making that curve on the bridge, not turning the wheel when I need to, I worry about myself.
Honestly, I know I will get through this. I have lived with my depression long enough that I know the real danger signs and know when to ask for emergency help. For now, I just let myself entertain the suicidal thoughts because for some reason they feel necessary – getting past them by wading through them.
Monster needs me to pull myself together though. His whole little life keeps getting so shaken up – thrown out of one daycare after another, and now maybe a new school, and maybe a PCA and a whole new routine. I hate that he’s going through all of this, when really what he needs in his life is some continuity. At least we have been able to keep the details to ourselves. I don’t think he understands that all of these changes are due to his behaviors. But then, he knows a lot more than he ever lets on, and he is so intuitive. He could know everything. Plus I sit here sad because it’s 3:30 and I don’t get to leave until 6 and I want to just hold my boy and smell his hair and feel his weight in my arms. I want to ask him about his day and tell him how wonderful and sweet and amazing he is, and tell him how much I love him. And maybe I’ll let him fall asleep in our bed tonight. Just because we’ve both been so sad. Hubby doesn’t like my enabling Monster like I do – thinks he should be forced to fall asleep alone every night. And, who knows? He may be right. But in the big scheme of things, what does it hurt? Tomorrow a plane could crash on our house or we could be in a car crash. Then what does it matter if Monster got to fall asleep in our bed?
I think I’m too fatalistic. I try to raise Monster to be a good member of society, but there’s a part of me who wonders whether this world will even exist for any of us in ten years. Part of me wants to just leave Monster be and not stress him, and let him be himself and be happy and not have to try to conform to a society in which I have already lost trust. And even if we all reach old age, why is it my job to force my son to become a mindless follower of rules and laws that sometimes don’t even make sense to me?
I used to laugh at homeschoolers, but now I hear myself telling Monster why he has to do something a teacher or aide at school has told him to do, and I wonder to myself, WHY? It isn’t something I agree with. And yet I am telling my son he needs to do what the teacher says. And I know it is about respect of those in authority, and I know that’s important, but the anarchist in me wants nothing to do with it. I try to figure out where the balance is – how to raise my son to be free-thinking, but respectful. How to allow him to think for himself but not have him end up being a child who goes into his school with a gun and shoots everyone who has made him feel bad. And I don’t know what that balance should be.
Sunday, February 24, 2008
A white flag
My son asked me for a dream last night. This is his newest thing - he needs a dream from us at night so he can keep the nightmares at bay. Last night as I lay next to him during our nightly cuddle, I described a dream he could have; holding onto a huge bunch of balloons and flying over parks, houses, zoos, etc. Wouldn’t that be fun? And Monster answered, “But I’d have to be alone. I want to cuddle with you. I want it to be something where we’re together forever.” I almost started in about all being angels together, but then I decided I couldn’t tell him that story, because I don’t know if it’s true. Besides, no matter how cheerful a story I could concoct, it's still in the end a story about dying and not something I felt ready to bring up right then. So I gave him this lame response - “Well, we’ll always be together in this little house!” and since he was almost asleep he didn’t argue and accepted my lie and fell asleep.
This kid is so dependent upon me to keep him happy, safe, secure. And I don’t mind the job but I appear to be failing the poor guy lately. I am in a constant state of stress, low-grade depression, and tearful hopelessness. I had all of this fight in me, all this anger that helped me fight for my son, but it seems depleted and my attitude is now one of frustrated resignation. It’s odd, because I honestly thought that I might win these battles with the school, the daycare, and everyone else. But I am losing. I am failing my son and myself. Monster is kicked out of the after school program effective March 20th. We are getting together with the school next Friday morning to see if my son might do better in a special autism program, since no matter how hard the school tries, Monster is falling behind and he is sad and a misfit.
And so this sadness settles on me and I cannot shake it. And Monster senses it even though I try my hardest to hide it from him. And because Mom is sad and frightened, Monster becomes sad and frightened, and loses confidence in my ability to protect him from all of the sadness in the world.
Of course I can’t protect him. But I wanted him to believe it for a bit longer. He is six and still vulnerable. He has very little understanding of how the world works and this lack of understanding causes him anxiety. He looks to me to explain life as best I can, and to keep a smiling face and to reassure him again and again that everything is okay; everything will turn out fine.
I no longer know if this is the truth. I don’t know how everything is going to turn out. I have no fight left in me and I am at the mercy now of several places who don’t have Monster’s best interests at heart. I wait to see if the OCR will accept our case and request mediation with the after school program. I wait to see if a PCA shows up in response to my ads who seems like someone who will be patient and good with my child, and whom I can trust to be alone with him for several hours a day.
Everything I worked and fought for seems empty and useless. We’re right back at the beginning and nothing has changed except our choices have narrowed significantly and we can’t look back to what was lost or given up on. There’s nothing promising out there in the near future.
And so I muddle through. I was so cocky. I thought I was going to change the way schools and other programs saw children like mine. I thought I could help others by being tough and fighting for my son and maybe making it easier for those who follow to be understood and helped.
I am nothing. I am a mother to a disabled child who is beautiful and sweet and charming and smart and wonderful. And that should be enough. But it isn’t, because I am supposed to also advocate for my son and after fighting for almost two years I am tired and sad and defeated. And what was it all for? Nothing has changed. My son gets older and now the other children notice his differences more - he’s weird. He talks funny, He acts weird. He hits people for no good reason. He seems unable to learn. I hurt for him. I love him so much and I want to make the world a good place for him. I can’t. I want to protect him from all of the ugliness that is out there. I can’t. I can only love him, and offer him dreams to help keep the nightmares away. And hold him when he’s sad. I hold him a lot. I worry he’s sad too much. I worry about us both.
This kid is so dependent upon me to keep him happy, safe, secure. And I don’t mind the job but I appear to be failing the poor guy lately. I am in a constant state of stress, low-grade depression, and tearful hopelessness. I had all of this fight in me, all this anger that helped me fight for my son, but it seems depleted and my attitude is now one of frustrated resignation. It’s odd, because I honestly thought that I might win these battles with the school, the daycare, and everyone else. But I am losing. I am failing my son and myself. Monster is kicked out of the after school program effective March 20th. We are getting together with the school next Friday morning to see if my son might do better in a special autism program, since no matter how hard the school tries, Monster is falling behind and he is sad and a misfit.
And so this sadness settles on me and I cannot shake it. And Monster senses it even though I try my hardest to hide it from him. And because Mom is sad and frightened, Monster becomes sad and frightened, and loses confidence in my ability to protect him from all of the sadness in the world.
Of course I can’t protect him. But I wanted him to believe it for a bit longer. He is six and still vulnerable. He has very little understanding of how the world works and this lack of understanding causes him anxiety. He looks to me to explain life as best I can, and to keep a smiling face and to reassure him again and again that everything is okay; everything will turn out fine.
I no longer know if this is the truth. I don’t know how everything is going to turn out. I have no fight left in me and I am at the mercy now of several places who don’t have Monster’s best interests at heart. I wait to see if the OCR will accept our case and request mediation with the after school program. I wait to see if a PCA shows up in response to my ads who seems like someone who will be patient and good with my child, and whom I can trust to be alone with him for several hours a day.
Everything I worked and fought for seems empty and useless. We’re right back at the beginning and nothing has changed except our choices have narrowed significantly and we can’t look back to what was lost or given up on. There’s nothing promising out there in the near future.
And so I muddle through. I was so cocky. I thought I was going to change the way schools and other programs saw children like mine. I thought I could help others by being tough and fighting for my son and maybe making it easier for those who follow to be understood and helped.
I am nothing. I am a mother to a disabled child who is beautiful and sweet and charming and smart and wonderful. And that should be enough. But it isn’t, because I am supposed to also advocate for my son and after fighting for almost two years I am tired and sad and defeated. And what was it all for? Nothing has changed. My son gets older and now the other children notice his differences more - he’s weird. He talks funny, He acts weird. He hits people for no good reason. He seems unable to learn. I hurt for him. I love him so much and I want to make the world a good place for him. I can’t. I want to protect him from all of the ugliness that is out there. I can’t. I can only love him, and offer him dreams to help keep the nightmares away. And hold him when he’s sad. I hold him a lot. I worry he’s sad too much. I worry about us both.
Thursday, February 21, 2008
Time to stop the pity party
and post something I wrote a while ago.
The Promise
Will you love me? You ask.
And I answer, of course I will love you.
Your eyes sparkle with mischief and knowing.
It won’t be easy, you tell me.
That won’t be a problem, I say (the truth is, I have no idea just how impossible it will seem at times,Or I just might say no: You know this).
I warn you that I am not patient enough,That I lose my temper too often,I give up too easily,And I very rarely forgive.
You tell me this is okay.
You only need me to promise you
That I will love you forever and always.
I look into your eyes and see you as you will be;
Shining,
Beautiful,
Creative,
Intelligent,
Caring, and
Loving,
But difficult, too.
So incredibly, terribly difficult.
Can I do this?
I don’t know.
I have no way of knowing.
But I have invited you here
And you have shooting stars to chase, clouds to dance on,
And you are waiting for my answer.
I don’t think I can do this.
I am frightened.
I cannot see your future.
I cannot see our future.
There is too much unknown.
I have never liked surprises.
What’s in your future? I ask, and you smile.
Why don’t we find out together? you say.
All you need to do is promise.
And I consider my life and realize that saying no to you
Would be much more painful than saying yes to this frightening unknown.
And I tell you that yes, I promise.
I promise I will love you forever and always.
I will forget all of this soon.
I will forget that I called you to me,
And that I met you,
That I chose you and invited you to be with me,
And that you came to me
Because I made a promise.
Very soon, life will get busy, hectic, and scary.
But in the midst of my fear and worry over you
I will realize that
My life is also thrilling and full of wonder and amazement because of you.
And I will look at you,
My precious child,
And tell you that I love you
More fiercely than I have ever loved anyone before.
But, you will ask me, do you love me
Forever and always?
And I will say yes, of course.
And then you will smile,
As if you had already known.
The Promise
Will you love me? You ask.
And I answer, of course I will love you.
Your eyes sparkle with mischief and knowing.
It won’t be easy, you tell me.
That won’t be a problem, I say (the truth is, I have no idea just how impossible it will seem at times,Or I just might say no: You know this).
I warn you that I am not patient enough,That I lose my temper too often,I give up too easily,And I very rarely forgive.
You tell me this is okay.
You only need me to promise you
That I will love you forever and always.
I look into your eyes and see you as you will be;
Shining,
Beautiful,
Creative,
Intelligent,
Caring, and
Loving,
But difficult, too.
So incredibly, terribly difficult.
Can I do this?
I don’t know.
I have no way of knowing.
But I have invited you here
And you have shooting stars to chase, clouds to dance on,
And you are waiting for my answer.
I don’t think I can do this.
I am frightened.
I cannot see your future.
I cannot see our future.
There is too much unknown.
I have never liked surprises.
What’s in your future? I ask, and you smile.
Why don’t we find out together? you say.
All you need to do is promise.
And I consider my life and realize that saying no to you
Would be much more painful than saying yes to this frightening unknown.
And I tell you that yes, I promise.
I promise I will love you forever and always.
I will forget all of this soon.
I will forget that I called you to me,
And that I met you,
That I chose you and invited you to be with me,
And that you came to me
Because I made a promise.
Very soon, life will get busy, hectic, and scary.
But in the midst of my fear and worry over you
I will realize that
My life is also thrilling and full of wonder and amazement because of you.
And I will look at you,
My precious child,
And tell you that I love you
More fiercely than I have ever loved anyone before.
But, you will ask me, do you love me
Forever and always?
And I will say yes, of course.
And then you will smile,
As if you had already known.
More whining
Monster is kicked out of his day care effective March 20th.
We are having a meeting in early March to determine if his current school settting is the best place for Monster to be at this time.
We are waiting to see if our PCA hours get approved.
We are waiting for OCR to determine if we can mediate with the after school program about Monster’s being able to stay, which may end up a moot point if he’s going to move.
I still don’t know what we will do this summer.
I am trying to keep my sense of humor about this all. The meeting last night was, after all, quite funny, as the parent advocate, hubby, and I slammed the aftercare people with all sorts of questions they weren’t prepared to answer. We stood outside after the meeting and sort of luaghed about it. Then I went home and fell apart.
I am on the verge of hysterical. I can either laugh or bawl but I’m never sure which will come out.
Thank goodness hubby is finally being supportive, because I really need his help now.
I wish I could just quit my job. But I can’t. We don’t want to have a luxurious lifestyle. We want to have a roof over our heads. That requires two incomes for us. I really wish I could just run away. I would join a circus but I doubt I have any talent they’d want. Do gypsies still travel in caravans? Would they have me? Or could I just run off to someplace in Oregon and live in a little cabin and let everyone think I’m a witch?
I can’t concentrate. I have to get work done, but seriously I’ve been here 3 hours and just realized that it really HAS been three hours and I have done nothing but scan the info I needed to get to OCR and email it to them. I sit here and mull over everything jumbled up in my brain and wish I had solid answers or any answers because I hate not having answers.
I’m just tired. I thought I had all this fight in me. It turns out it was not an infinite supply. Right now if I could curl up in a corner and not deal with anything I would be fine.
And still each night I snuggle up with my sweet boy and know that somehow I need to keep going. He is so damned lovable and snuggly and sweet and trusting. What choice do I have?
This is stupid, sitting here crying at my desk. I used to scoff at people who got emotional over stuff at work and wondered why they couldn’t leave that shit at home. Hah. Shows what I knew.Why do I even bother with mascara when it always ends up smeared under my eyes, raccoon-like?
We are having a meeting in early March to determine if his current school settting is the best place for Monster to be at this time.
We are waiting to see if our PCA hours get approved.
We are waiting for OCR to determine if we can mediate with the after school program about Monster’s being able to stay, which may end up a moot point if he’s going to move.
I still don’t know what we will do this summer.
I am trying to keep my sense of humor about this all. The meeting last night was, after all, quite funny, as the parent advocate, hubby, and I slammed the aftercare people with all sorts of questions they weren’t prepared to answer. We stood outside after the meeting and sort of luaghed about it. Then I went home and fell apart.
I am on the verge of hysterical. I can either laugh or bawl but I’m never sure which will come out.
Thank goodness hubby is finally being supportive, because I really need his help now.
I wish I could just quit my job. But I can’t. We don’t want to have a luxurious lifestyle. We want to have a roof over our heads. That requires two incomes for us. I really wish I could just run away. I would join a circus but I doubt I have any talent they’d want. Do gypsies still travel in caravans? Would they have me? Or could I just run off to someplace in Oregon and live in a little cabin and let everyone think I’m a witch?
I can’t concentrate. I have to get work done, but seriously I’ve been here 3 hours and just realized that it really HAS been three hours and I have done nothing but scan the info I needed to get to OCR and email it to them. I sit here and mull over everything jumbled up in my brain and wish I had solid answers or any answers because I hate not having answers.
I’m just tired. I thought I had all this fight in me. It turns out it was not an infinite supply. Right now if I could curl up in a corner and not deal with anything I would be fine.
And still each night I snuggle up with my sweet boy and know that somehow I need to keep going. He is so damned lovable and snuggly and sweet and trusting. What choice do I have?
This is stupid, sitting here crying at my desk. I used to scoff at people who got emotional over stuff at work and wondered why they couldn’t leave that shit at home. Hah. Shows what I knew.Why do I even bother with mascara when it always ends up smeared under my eyes, raccoon-like?
Wednesday, February 20, 2008
More fun
And to add to my worries about this stupid meeting tonight, I got a call from my parent advocate (who DID make it to the IEP meeting) and she thinks it’s time to consider moving Monster to a special ASD school setting, since he hasn’t improved even with the gargantuan changes they made for him on his IEP.Maybe it’s all for the best. Maybe he belongs with other kids who understand him, or who are at least like him, because do any of them understand others?
If I weren’t so freaked about this stupid meeting I would take this as a sign to get out there and start shaking trees again, to see what falls down. I actually did already call the director in charge of the next-door city’s autism program (our city doesn’t have one) and leave her a message. I also emailed my son’s case worker and told her we need to start thinking of a different placement for Monster. I don’t even care about the meeting tonight, now that I think of it. They’ll just have to deal with my kid until we figure out where to put him.
If I weren’t so freaked about this stupid meeting I would take this as a sign to get out there and start shaking trees again, to see what falls down. I actually did already call the director in charge of the next-door city’s autism program (our city doesn’t have one) and leave her a message. I also emailed my son’s case worker and told her we need to start thinking of a different placement for Monster. I don’t even care about the meeting tonight, now that I think of it. They’ll just have to deal with my kid until we figure out where to put him.
Meeting, today, 5:00
Today is The Big Meeting - the one I've been worrying over for about a week now.
It's funny because now that it is right here upon me, I'm not worried anymore. Hubby and I sat down and actually had a very productive talk about Monster's after school care and both decided that we would be able to change our hours to make it so he is never without one of us. It will mean not seeing each other all week long but we really don't do much - talk for a few minutes while Monster jabbers in the background trying to makes ure the attention never moves away from him, then play with him until his bed time, then fall in bed ourselves, exhausted and done with the day. Or he watches TV and I go online.
So I'm not frightened anymore. They can say what they want. If they tell us something that I know is illegal, I will get the OCR involved. I already have a lawyer waiting to hear from me on how this meeting goes, ready to take the case.
And how bad am I that I missed Monster's follow-up IEP meeting yesterday morning. Everything has been in such turmoil that, even though I had it written down and in my Palm, I still forgot it completely. I stood up Monster's whole special ed team, PLUS my parent advocate. I feel so irresponsible and unreliable now. It's not an excuse, but this meeting today has been hovering over me and I haven't been able to focus on anything else.
Yesterday when hubby took M to urgent care to see if anything was wrong with him, they got the same doctor who took the report on the abuse from the daycare aide. The doctor told hubby, You look familiar, and hubby said, well, remember, the daycare situation? and the doctor said oh, yeah, how did that go? Hubby told him we haven't heard a thing. We have no idea how that went. Maybe they decided the aide was not at fault and this meeting is to let us know that we're being sued. Shit I'm so optimistic.
Monster seems to want out of the day care, which I guess is a good thing because eventually he will be. Before he told us he could not leave there because he lvoes his new aide and she loves him. But now suddenly he doesn't want to go. Who knows what changed his mind? Most of the time we don't even know what's going on in his mind. I might hear about something that happened a few months ago, but Monster isn't big on talking about things that happened recently.
I hope I have enough work to keep me busy until 4:30. Time to finish up my lunch and get back to work. I hate surprises (I think I've mentioned that before) and the sooner they dump this "surprise" on us, the better. I can handle anything, once I know what I'm dealing with. It's the not knowing that drives me nuts.
It's funny because now that it is right here upon me, I'm not worried anymore. Hubby and I sat down and actually had a very productive talk about Monster's after school care and both decided that we would be able to change our hours to make it so he is never without one of us. It will mean not seeing each other all week long but we really don't do much - talk for a few minutes while Monster jabbers in the background trying to makes ure the attention never moves away from him, then play with him until his bed time, then fall in bed ourselves, exhausted and done with the day. Or he watches TV and I go online.
So I'm not frightened anymore. They can say what they want. If they tell us something that I know is illegal, I will get the OCR involved. I already have a lawyer waiting to hear from me on how this meeting goes, ready to take the case.
And how bad am I that I missed Monster's follow-up IEP meeting yesterday morning. Everything has been in such turmoil that, even though I had it written down and in my Palm, I still forgot it completely. I stood up Monster's whole special ed team, PLUS my parent advocate. I feel so irresponsible and unreliable now. It's not an excuse, but this meeting today has been hovering over me and I haven't been able to focus on anything else.
Yesterday when hubby took M to urgent care to see if anything was wrong with him, they got the same doctor who took the report on the abuse from the daycare aide. The doctor told hubby, You look familiar, and hubby said, well, remember, the daycare situation? and the doctor said oh, yeah, how did that go? Hubby told him we haven't heard a thing. We have no idea how that went. Maybe they decided the aide was not at fault and this meeting is to let us know that we're being sued. Shit I'm so optimistic.
Monster seems to want out of the day care, which I guess is a good thing because eventually he will be. Before he told us he could not leave there because he lvoes his new aide and she loves him. But now suddenly he doesn't want to go. Who knows what changed his mind? Most of the time we don't even know what's going on in his mind. I might hear about something that happened a few months ago, but Monster isn't big on talking about things that happened recently.
I hope I have enough work to keep me busy until 4:30. Time to finish up my lunch and get back to work. I hate surprises (I think I've mentioned that before) and the sooner they dump this "surprise" on us, the better. I can handle anything, once I know what I'm dealing with. It's the not knowing that drives me nuts.
Tuesday, February 19, 2008
Sick kid
Monster has been sick since last Thursday. He was sleeping at school and running a low-grade fever. Hubby picked him up and I stayed home with him Friday. Monday I was also home with him because school and daycare were closed. Now today I got a call from the school again - Monster had fallen asleep in the sensory room. So hubby is taking him to urgent care to check for strep and mononucleosis. I'm worried about my little guy. He still isn't eating well at all and all weekend he slept until 9 or 10 in the morning - this is the kid who doesn't believe in sleeping in on weekends and drags his toys into our bed at 7AM to play.
I hope he's okay. I don't like seeing him this way - listless and not eating.
Hubby suggested last night that maybe the reason Monster went to bed at 7 (7!) was because he's depressed. This made me cry because it is one more thing I had to worry about. But I think he's just sick. I don't know why, but being sick seems better to me than being depressed.
I hope he's okay. I don't like seeing him this way - listless and not eating.
Hubby suggested last night that maybe the reason Monster went to bed at 7 (7!) was because he's depressed. This made me cry because it is one more thing I had to worry about. But I think he's just sick. I don't know why, but being sick seems better to me than being depressed.
Monday, February 18, 2008
Emotional mess
This upcoming meeting with the afterschool program has turned me into an emotional wreck. Plus I have just spent the past four days at home with Monster and today I yelled at the poor kid and I feel awful, but the whole thing has been building these past few days.
I'm still freaking out about how the whole after-school/summer thing is going to work.
Plus Monster has been acting really weird these past few days, and maybe he's still getting over being sick, or maybe being out of school for so long has gotten him out of sorts, but I am worried that there is some sort of huge explosion coming. And I'm afraid it's going to be at school. Or the after school place.
I've had this feeling before; this sense of inpending doom, and it's usually before we get the bombshell that Monster is getting kicked out, or that he smacked some kid in the head with a block and the kid needed stitches, or something like that.
I feel totally panicked.
I'm still freaking out about how the whole after-school/summer thing is going to work.
Plus Monster has been acting really weird these past few days, and maybe he's still getting over being sick, or maybe being out of school for so long has gotten him out of sorts, but I am worried that there is some sort of huge explosion coming. And I'm afraid it's going to be at school. Or the after school place.
I've had this feeling before; this sense of inpending doom, and it's usually before we get the bombshell that Monster is getting kicked out, or that he smacked some kid in the head with a block and the kid needed stitches, or something like that.
I feel totally panicked.
Saturday, February 16, 2008
I try to stay positive
I keep this blog to inspire myself and to help keep myself going when things get hopeless and sad. Sometimes (like right now) it all seems like a bunch of BS, and I just want to wallow in pity for myself and Monster. Or, well, let's face it. I just pity myself. I get tired, and I get discouraged, and I stop understanding what the point is in fighting.
My latest problem is that I am worried about a meeting called by Monster's after care program "to discuss Monster's ongoing issues". This is news to me, because M has been doing fine for the past couple of weeks. I think the new aide has figured out what makes Monster tick and she's learning to help him navigate his world.
Monster has no place to stay this summer if he gets kicked out of the after school place. The JCC is up in the air and I don't know where else we could put him.
I don't know for sure if that is what this meeting is about. I just have my suspicions.
So I'm just feeling scared and sorry for myself.
I think I'm running out of fight.
My latest problem is that I am worried about a meeting called by Monster's after care program "to discuss Monster's ongoing issues". This is news to me, because M has been doing fine for the past couple of weeks. I think the new aide has figured out what makes Monster tick and she's learning to help him navigate his world.
Monster has no place to stay this summer if he gets kicked out of the after school place. The JCC is up in the air and I don't know where else we could put him.
I don't know for sure if that is what this meeting is about. I just have my suspicions.
So I'm just feeling scared and sorry for myself.
I think I'm running out of fight.
Thursday, February 14, 2008
ALL ABOUT ANGER!!!!!
I spent the first 25 or so years of my life denying my anger, pushing it aside, shoving it down, doing what all women of my generation were taught to do. Then I went into therapy and discovered I actually had anger. I read books about it, and started to stand up for myself. Hubby didn’t exactly like this new person who was not a doormatt, but he learned to live with it and in time all was good again.Then I got pregnant. Suddenly my fury was out of control. I was insane with anger. I couldn’t explain it. I didn’t understand it. Why was I so angry, when I wanted this baby? What was happening to me?
When the baby was born I realized that the anger was FOR my baby. Even sitting there in the hospital bed, feeling tired and fairly safe, I looked at my baby and thought of all of the violent ways I would destroy anyone who attempted to harm this baby of mine. It was animal instinct, pure and simple. But it didn’t seem pure and simple. It seemed out of control and even scary at times.
Those first couple of years most of my anger was directed toward my husband, who tried to tell me what to do with MY baby, and dammit he was wrong and he needed to leave me alone with my baby and do what I needed to do. His mother had told him that Monster was too fat and I needed to start giving him bottles of water in between feedings. I roared at him. He told me I needed to stop sticking my breast in Monster’s face every time he fussed. I fumed at him. Who in the hell was he, telling me to go against my instinct? I knew exactly what to do with my son. Even the pediatrician got involved, by telling my husband that we needed to have Monster CIO and just teach him to sleep through the night. Hubby thought that was a fabulous idea, and in a rare attempt to have harmony in our house, I accepted this. For 15 minutes. My husband was furious with me when I got out of bed and told him, “I’m not doing this to my baby.” And walked into Monster’s room and stuck a breast in his face.
When Monster got big and strong enough to start attacking children and teachers in daycares, some of my anger came out toward the teachers. They were wrong. They were trying to force my child to be a good little sheep and foolow like all the rest and this just was NOT my child. But the largest portion of this anger I directed at myself, because obviously I WAS doing something wrong – my son was out of control. Maybe I did breast feed him too often for too long. Maybe I should have made him cry it out. Maybe I should not have held him so much. Maybe I should have listened to someone – anyone – when they told me I was doing something wrong. But there was something in me that forced me to take care of Monster the way I did. I fought with everyone constantly about how I took care of him. But he seemed to need everything I was doing – all of the over-coddling and all of the middle-of-the-night visits to comfort him. He needed these things. I knew it somehow. My husband was furious with me most of the time for ignoring any parenting advise he gave me. Caring for my son the way I instinctively felt it had to be done meant putting our marriage in jeopardy more than once. I didn’t care.
When we got Monster’s diagnosis, I felt vindicated. Everything I had done with him turned out to be all of the “right” things to do for early intervention of a child with Asperger’s. I don’t know how I knew to do the things I did, but I did them, and I am glad I stood up to everyone and did what I felt to be right. I think my son has a lot of skills and has a good base to work with thanks to how connected he was to me for so long.
It was the anger that made me do what I had to do. If I had not had my anger I would have given in and somehow Monster’s needs would have been forgotten. Our marriage was shaken so completely that even now I would say we aren’t completely recovered. But nowhubby will admit occasionally that he understands now why I did what I did. Now we are dealing with a school that up to a couple of months ago did not want to help our son, and a daycare that still wants to kick our son out. And I tell myself, they’re messing with the wrong mom, because I have honed my anger into a weapon to be reckoned with. I know when to back off and be kind, and allow people to do their jobs, but I will swoop in and fight with claws and fangs bared at the first indication that my son is somehow being failed by these people. I don’t know if this is mentally healthy or not, but it sure feels good to know I have this anger inside of me that keeps me from giving up. I feel this need to fight not only for my son but for every child who is unceremoniously shoved aside because god forbid they are just too much work for these daycare workers or teachers or aides. I want to start a revolution, however misguided or megalomaniacal (is that even a word?) that seems. I am ready for the fight of my life, and if I ever start to get tired or feel sorry for myself I just think of my son and what I want for him, and I think of the other children like him and know that their parents are exhausted like I am, and that it’s easier to not fight, and I want to fight for all of these exhausted parents. I know. I’m nuts. I seem to feed on my own anger and it is what propels me through the day. But really, I am not a bad person. I don’t snap at people for bumping into me. I don’t yell at a coworker who asks me the question I just answered for them yesterday. I am SO grateful for this anger. It seems as if it came as a gift from my son when he came to me – sort of like, “here I am, I’m going to shake up your life in a major way and you will have to fight for me a lot but I brought you something to help…”. a cosmic, mysteriously amazing gift.How wonderful that it turns out I got the exactly right chld for me, and that I got the exact right emotion to help him navigate through his life.
And just in case I am painting too rosy a picture; life sucks for me a lot of the time. I am under constant stress and pressure and it is almost always because of this child. But life sucks for me because I still live in the mindset that I need to feel sorry for myself before I actually kick my own butt into action. I may always be this way – get bad news, mope around and hate my life, then get pissed off and get to work – but at least I know now that my anger can be counted on to come and rescue me from my self-pity at some point, and show me the way to advocate for my son this time.
The battles won’t end. They will change. One battle will be won and another will be right behind it. I know this. As long as I have my anger I will keep fighting. Hopefully in the processs I will be making my son’s world just a little easier for him to navigate. And hopefully I can educate people along the way too. I will try to do it in the nicest way possible, but if someone refuses to listen, they’d better watch out. I have my anger, and I’m not scared to use it.
When the baby was born I realized that the anger was FOR my baby. Even sitting there in the hospital bed, feeling tired and fairly safe, I looked at my baby and thought of all of the violent ways I would destroy anyone who attempted to harm this baby of mine. It was animal instinct, pure and simple. But it didn’t seem pure and simple. It seemed out of control and even scary at times.
Those first couple of years most of my anger was directed toward my husband, who tried to tell me what to do with MY baby, and dammit he was wrong and he needed to leave me alone with my baby and do what I needed to do. His mother had told him that Monster was too fat and I needed to start giving him bottles of water in between feedings. I roared at him. He told me I needed to stop sticking my breast in Monster’s face every time he fussed. I fumed at him. Who in the hell was he, telling me to go against my instinct? I knew exactly what to do with my son. Even the pediatrician got involved, by telling my husband that we needed to have Monster CIO and just teach him to sleep through the night. Hubby thought that was a fabulous idea, and in a rare attempt to have harmony in our house, I accepted this. For 15 minutes. My husband was furious with me when I got out of bed and told him, “I’m not doing this to my baby.” And walked into Monster’s room and stuck a breast in his face.
When Monster got big and strong enough to start attacking children and teachers in daycares, some of my anger came out toward the teachers. They were wrong. They were trying to force my child to be a good little sheep and foolow like all the rest and this just was NOT my child. But the largest portion of this anger I directed at myself, because obviously I WAS doing something wrong – my son was out of control. Maybe I did breast feed him too often for too long. Maybe I should have made him cry it out. Maybe I should not have held him so much. Maybe I should have listened to someone – anyone – when they told me I was doing something wrong. But there was something in me that forced me to take care of Monster the way I did. I fought with everyone constantly about how I took care of him. But he seemed to need everything I was doing – all of the over-coddling and all of the middle-of-the-night visits to comfort him. He needed these things. I knew it somehow. My husband was furious with me most of the time for ignoring any parenting advise he gave me. Caring for my son the way I instinctively felt it had to be done meant putting our marriage in jeopardy more than once. I didn’t care.
When we got Monster’s diagnosis, I felt vindicated. Everything I had done with him turned out to be all of the “right” things to do for early intervention of a child with Asperger’s. I don’t know how I knew to do the things I did, but I did them, and I am glad I stood up to everyone and did what I felt to be right. I think my son has a lot of skills and has a good base to work with thanks to how connected he was to me for so long.
It was the anger that made me do what I had to do. If I had not had my anger I would have given in and somehow Monster’s needs would have been forgotten. Our marriage was shaken so completely that even now I would say we aren’t completely recovered. But nowhubby will admit occasionally that he understands now why I did what I did. Now we are dealing with a school that up to a couple of months ago did not want to help our son, and a daycare that still wants to kick our son out. And I tell myself, they’re messing with the wrong mom, because I have honed my anger into a weapon to be reckoned with. I know when to back off and be kind, and allow people to do their jobs, but I will swoop in and fight with claws and fangs bared at the first indication that my son is somehow being failed by these people. I don’t know if this is mentally healthy or not, but it sure feels good to know I have this anger inside of me that keeps me from giving up. I feel this need to fight not only for my son but for every child who is unceremoniously shoved aside because god forbid they are just too much work for these daycare workers or teachers or aides. I want to start a revolution, however misguided or megalomaniacal (is that even a word?) that seems. I am ready for the fight of my life, and if I ever start to get tired or feel sorry for myself I just think of my son and what I want for him, and I think of the other children like him and know that their parents are exhausted like I am, and that it’s easier to not fight, and I want to fight for all of these exhausted parents. I know. I’m nuts. I seem to feed on my own anger and it is what propels me through the day. But really, I am not a bad person. I don’t snap at people for bumping into me. I don’t yell at a coworker who asks me the question I just answered for them yesterday. I am SO grateful for this anger. It seems as if it came as a gift from my son when he came to me – sort of like, “here I am, I’m going to shake up your life in a major way and you will have to fight for me a lot but I brought you something to help…”. a cosmic, mysteriously amazing gift.How wonderful that it turns out I got the exactly right chld for me, and that I got the exact right emotion to help him navigate through his life.
And just in case I am painting too rosy a picture; life sucks for me a lot of the time. I am under constant stress and pressure and it is almost always because of this child. But life sucks for me because I still live in the mindset that I need to feel sorry for myself before I actually kick my own butt into action. I may always be this way – get bad news, mope around and hate my life, then get pissed off and get to work – but at least I know now that my anger can be counted on to come and rescue me from my self-pity at some point, and show me the way to advocate for my son this time.
The battles won’t end. They will change. One battle will be won and another will be right behind it. I know this. As long as I have my anger I will keep fighting. Hopefully in the processs I will be making my son’s world just a little easier for him to navigate. And hopefully I can educate people along the way too. I will try to do it in the nicest way possible, but if someone refuses to listen, they’d better watch out. I have my anger, and I’m not scared to use it.
Angry, disgusted, annoyed
This is all I did. I sent an email to the head of the after school program asking if Monster’s aide will be working this summer and will be available to work with him. Simple question. But I didn’t get a response and now I got a voicemail this morning from head of program asking if we can meet to discuss Monster’s “continuing concerns”. I called and left HER a voice mail asking what exactly these concerns are, because Monster has been doing wonderfully for the past couple of months. His aide really gets him and the two of them get along fine. So I know they don’t want him in the summer program, or they would have just answered my question. And I’m sick of these people and the runaround they’ve been giving us from the start, so I emailed them and CCed the assistant superintendent of the school district, because he got pulled into this whole case when M’s old aide allegedly abused my son and we got the police involved (the case is ongoing, hence the “alleged”). I know they think I am nuts and pushy and mean and that I make bigger deals out of things than they think I need to, but this is my son they’re dealing with, a flesh and bones little person with feelings and rights. I will not allow them to jerk him around. I’m a fighter. They already know that. So they’d better be prepared for battle.
Coincidentally, my second voicemail was from an attorney who got my letter to the OCR (Office of Civil Rights) and she is sure as heck willing to take this case on if the after school place does something stupid like say, we don’t want your kid here anymore. The meeting is scheduled for next Weds at 5. Our parent advocate is coming. My husband is coming. I asked the asst superintendent to please come to the meeting because I think the school district should know what their after school program is up to.
This is the email I just sent out.
Hi ___,
I left you a message on your voice mail but figured I would email you as well. I would like at least a brief explanation of what you mean regarding Monster's "continuing concerns". You are now working with the school to learn their best practices in helping Monster be successful. I asked a simple question - will his aide be available for my son during summer break - and got no answer, but instead get an ominous-sounding request to meet to discuss Monster’s ongoing concerns. If this is something we can simply discuss over the phone so you can tell me you don't want M in your summer program, let's do that so I don't need to miss any more work. If this is in fact a meeting in which we will discuss how best to work with Monster this summer so he can be successful, I don't have a problem with showing up.
I also wanted to let you know that there is a follow-up IEP meeting for Monster at 8:oo at school if anyone from your place is interested in attending. Monster’s aide has been telling hubby every day for the past week that M is doing really well. It seems to me that if the aide is allowed to work with Monster on her own terms, since she is the only one who has taken the time to really get to know him and his special needs, then M does just fine. Yes she is still learning about M but she really likes him and really sees a chance to be successful with him.So I guess all I need to know is, will the aide be available for the summer, and is your place willing to work with M this summer?
If both answers are yes, and you would still like to meet, then next Wednesday at 5:00 would work well for hubby and I and our parent advocate. Asst District Superintendent - if there is any way you could come I would appreciate it. I would like to make sure that someone outside of aftershool program is aware of what is happening.
Thank you and have a great day!
Monster’s Mom
Overreaction? Perhaps. But this has been going on since before school even started, when the main teacher in the after school program called me in to meet with her to discuss Monster's "special needs" and how they could help him both, and within 5 minutes of the meeting she had dumped the discipline chart in front of me, telling me that Monster will be help to the same standards as other children because they just can't have "grey areas" like that. I cried. I cried through that whole damned meeting because I had stupidly thought that schools and in-school after-care programs would be more willing to work with Monster than your everyday chain daycare (like the one who lied to me and told me they had no openings for my Asperger's son, and then told my friend who called 10 minutes later that of course they had room for her child, same age as M, same hours, same everything. I actually called her on it and chewed her out. Hate those chain places).
The teacher who sat and smiled at me while I cried through that meeting and claimed they'd do their best to not let Monster get in situations where he'd get suspended told her boss that the meeting had gone really well. Apparently parents cry through those things often.
So if I seem to overreact it's because I don't trust these people. I know as long as M's aide is there that Monster is safe and well-cared for. But the rest of them I don't trust. They lie.
Here's another lie they told when Monster was allegedly abused by old aide. Two weeks before the incident Monster said to old aide, playfully, not in anger, "I'm going to shoot you!" Yes, not smart thing to say. We talked to him about it. We told him it's not okay to say that to anyone. He understood. That was the last we heard of it. When the alleged abuse happened the director showed up when my hubby came to pick up and showed him a list of horrible things my son had done at their place in the past two weeks. Here was the kicker. "Threatened to bring a gun to school and kill a teacher." Okay, excuse this, but WHAT.THE.FUCK!?!?! We told her she's lying. We told her if that had really happened then why didn't we get a written notice that our son was making terroristic threats?
Why do I keep him there? Simple. We have noplace else to go. He needs to be within the bussing route to get to his afterschool place, and we have exhausted every other place in the area. And, since they have to accomodate Monster, I feel this burning need to not be like all the other parents who throw their hands up in desperation and pull their kid out. This is what they want. They don't want the extra work and headaches. This is why I fight. Because they have bullied too many special needs kids out of their program and I an angry that we all have to fight this bullshit every day. So I will fight as long as I can.
My husband says I am insane. I guess I am. But I'm pissed. And don't piss me off. I have a whole other post I need to write on my anger. But let's just say, my anger forces me to fight even when fighting seems stupid and useless. Even when it makes me hated.
Wish me luck. If this turns into a legal circus, so be it. It won't be because I haven't tried to get them to to right by my son. I am not jumping the gun. I have been more than patient. And I'm not a patient person.
Coincidentally, my second voicemail was from an attorney who got my letter to the OCR (Office of Civil Rights) and she is sure as heck willing to take this case on if the after school place does something stupid like say, we don’t want your kid here anymore. The meeting is scheduled for next Weds at 5. Our parent advocate is coming. My husband is coming. I asked the asst superintendent to please come to the meeting because I think the school district should know what their after school program is up to.
This is the email I just sent out.
Hi ___,
I left you a message on your voice mail but figured I would email you as well. I would like at least a brief explanation of what you mean regarding Monster's "continuing concerns". You are now working with the school to learn their best practices in helping Monster be successful. I asked a simple question - will his aide be available for my son during summer break - and got no answer, but instead get an ominous-sounding request to meet to discuss Monster’s ongoing concerns. If this is something we can simply discuss over the phone so you can tell me you don't want M in your summer program, let's do that so I don't need to miss any more work. If this is in fact a meeting in which we will discuss how best to work with Monster this summer so he can be successful, I don't have a problem with showing up.
I also wanted to let you know that there is a follow-up IEP meeting for Monster at 8:oo at school if anyone from your place is interested in attending. Monster’s aide has been telling hubby every day for the past week that M is doing really well. It seems to me that if the aide is allowed to work with Monster on her own terms, since she is the only one who has taken the time to really get to know him and his special needs, then M does just fine. Yes she is still learning about M but she really likes him and really sees a chance to be successful with him.So I guess all I need to know is, will the aide be available for the summer, and is your place willing to work with M this summer?
If both answers are yes, and you would still like to meet, then next Wednesday at 5:00 would work well for hubby and I and our parent advocate. Asst District Superintendent - if there is any way you could come I would appreciate it. I would like to make sure that someone outside of aftershool program is aware of what is happening.
Thank you and have a great day!
Monster’s Mom
Overreaction? Perhaps. But this has been going on since before school even started, when the main teacher in the after school program called me in to meet with her to discuss Monster's "special needs" and how they could help him both, and within 5 minutes of the meeting she had dumped the discipline chart in front of me, telling me that Monster will be help to the same standards as other children because they just can't have "grey areas" like that. I cried. I cried through that whole damned meeting because I had stupidly thought that schools and in-school after-care programs would be more willing to work with Monster than your everyday chain daycare (like the one who lied to me and told me they had no openings for my Asperger's son, and then told my friend who called 10 minutes later that of course they had room for her child, same age as M, same hours, same everything. I actually called her on it and chewed her out. Hate those chain places).
The teacher who sat and smiled at me while I cried through that meeting and claimed they'd do their best to not let Monster get in situations where he'd get suspended told her boss that the meeting had gone really well. Apparently parents cry through those things often.
So if I seem to overreact it's because I don't trust these people. I know as long as M's aide is there that Monster is safe and well-cared for. But the rest of them I don't trust. They lie.
Here's another lie they told when Monster was allegedly abused by old aide. Two weeks before the incident Monster said to old aide, playfully, not in anger, "I'm going to shoot you!" Yes, not smart thing to say. We talked to him about it. We told him it's not okay to say that to anyone. He understood. That was the last we heard of it. When the alleged abuse happened the director showed up when my hubby came to pick up and showed him a list of horrible things my son had done at their place in the past two weeks. Here was the kicker. "Threatened to bring a gun to school and kill a teacher." Okay, excuse this, but WHAT.THE.FUCK!?!?! We told her she's lying. We told her if that had really happened then why didn't we get a written notice that our son was making terroristic threats?
Why do I keep him there? Simple. We have noplace else to go. He needs to be within the bussing route to get to his afterschool place, and we have exhausted every other place in the area. And, since they have to accomodate Monster, I feel this burning need to not be like all the other parents who throw their hands up in desperation and pull their kid out. This is what they want. They don't want the extra work and headaches. This is why I fight. Because they have bullied too many special needs kids out of their program and I an angry that we all have to fight this bullshit every day. So I will fight as long as I can.
My husband says I am insane. I guess I am. But I'm pissed. And don't piss me off. I have a whole other post I need to write on my anger. But let's just say, my anger forces me to fight even when fighting seems stupid and useless. Even when it makes me hated.
Wish me luck. If this turns into a legal circus, so be it. It won't be because I haven't tried to get them to to right by my son. I am not jumping the gun. I have been more than patient. And I'm not a patient person.
Wednesday, February 13, 2008
FREE diapers! FREE!!!!
Today a case showed up on our porch. A big one, addressed to my son. My husband was ticked because he had given me a lecture a month ago about cutting back on our spending and obviously I had defied him by ordering something large.
But it was diapers. Free ones. Apparently a child over the age of 4 who still needs diapers is in need of medical supplies (diapers) which are supplied free to those on Medical Assistance. I would not have known this if the home health care nurse had not brought it up when I mentioned my son was basically day trained but needed pull ups at night. She asked that life-changing question, "Now, MA is paying for that, right?" Ummm, No. She gave me a number to call, I called, gave out Monster's MA number, his height and weight, and received a package of samples. Picked my favorite, called bck, placed an order, and here they are!
Please don't ask why this excites me so much. I guess because those diapers are EXPENSIVE. I got to take two unopened packages back to Target tonight and got $30.00 back on my credit card. So this could save us a bundle.
I think it's enabling us a bit, though. There's no incentive to get Monster out of overnight pullups if we can get an unlimited free supply. I'm guessing at some point he'll decide he wants to go without them. But if it isn't for a few years, hey, I'm fine with that. Really,really fine.
But it was diapers. Free ones. Apparently a child over the age of 4 who still needs diapers is in need of medical supplies (diapers) which are supplied free to those on Medical Assistance. I would not have known this if the home health care nurse had not brought it up when I mentioned my son was basically day trained but needed pull ups at night. She asked that life-changing question, "Now, MA is paying for that, right?" Ummm, No. She gave me a number to call, I called, gave out Monster's MA number, his height and weight, and received a package of samples. Picked my favorite, called bck, placed an order, and here they are!
Please don't ask why this excites me so much. I guess because those diapers are EXPENSIVE. I got to take two unopened packages back to Target tonight and got $30.00 back on my credit card. So this could save us a bundle.
I think it's enabling us a bit, though. There's no incentive to get Monster out of overnight pullups if we can get an unlimited free supply. I'm guessing at some point he'll decide he wants to go without them. But if it isn't for a few years, hey, I'm fine with that. Really,really fine.
Worry, Daycares, Summer Camps, and other stuff I can make myself miserable over
I need to decide who will be watching my child. I just got approval for PCA hours, although it will take months to get everything ready for us to actually hire someone. I asked for PCA hours out of desperation, never thinking Monster would qualify. We were getting desperate about his after school program and all of the fighting I was doing and I thought Monster may be out on the street soon! So we called a home health care nurse and made an appointment for her to assess Monster for PCA hours. This would come through Monster’s medical assistance, which we pay for monthly through TEFRA. It’s a long complicated story, but if anyone ever wants me to tell them my saga of the last two years, I would be glad to email it to you…
I was surprised, and saddened (always a bit saddened) when I realized how many type 1 behaviors (AKA bad behaviors, or “needs lots of help” behaviors) my son displays. It’s hard to have other people come in and look at my child and make statements about him that seem so awful until you realize that they’re all true, and I as the parent am so immersed this child’s life that a lot of this stuff starts to look and feel normal to me. So we got more than enough hours to get our son extra help, and I felt depressed for a few days because I was half-hoping the HHCN would get a bit angry with me and ask me why I had wasted her time, asking her to come out and assess this perfectly wonderfully normal child.
I jumped right in and posted ads for PCAs. It wasn’t until a day later when we started getting calls about the position that my husband discovered what I had done and asked me why on earth I was looking for a PCA now that we would not be able to hire for two months at least, if at all. Whoops. But the women were calling, and I had a few appointments set up to meet with people. I decided to go ahead and meet these women.
The two women I have met so far are wonderful. They are mothers themselves, and one has worked with lots of autistic boys. They both seem like they would do an amazing job caring for my son.And yet.
Both of these women are offering to pick my son up from school, and I don’t want anyone driving him anywhere. One woman offered to sometimes take him to her house to spend the night with her three children and I thought, well first, I don’t think you can count that as PCA hours, and secondly, no, there is a man in your house I have never met. Plus I barely know you. Do you have guns in your house? Does anyone smoke and when was the last time you had your electrical wiring checked? Because, you know, your house could burn down.
I cannot smother my child. I understand this. But he is six and still seems very vulnerable and helpless to me (and apparently also to the HHCN). I want him at our house, not being picked up or driven anywhere. I want him here, in our house in familiar surroundings; with a woman we have interviewed and spent enough time with to trust our house and child with, and nobody else. Just the two of them.This brings me to my next worry. I have never voluntarily placed my son in a home daycare because I don’t trust people as a rule. I always figured centers had double-checks. No adult was ever alone with a child – they were always being watched by other adults, and hopefully that kept everyone in line. Homes could have just one adult, and several children who can’t speak up for themselves. I have put Monster in two home daycares when we ran out of centers close by. But I disliked both of them. I pulled him out of one and was upset but secretly relieved when Monster got kicked out of the second one.
Don’t get me wrong. I know there are many wonderful home daycares out there and many really awful centers. It’s my own prejudice and I admit this.
So now I don’t know if I even want to leave my son with a PCA, if we ever get the hours approved. The one-on-one aide that they found for Monster now is so good with him and M just loves her. The problems have come less and less frequently since she showed up, and she gives my son the one gift that so many teachers and aides can’t seem to do – the gift of believing in his goodness, and expecting the best out of him instead of the worst. So why would I monkey with something that seems to be working at the time?
It would save us money, but doesn’t that money buy us the peace of mind that I must have to go to work and know that my son is safe and well-cared-for?
I have already started fretting over summer break, because my son will have to spend it somewhere, or with someone. We don’t have enough hours for a FT PCA 5 days a week. There are right now two options – the local Jewish community center and the place he’s in now. If Monster’s aide is staying for the summer, I will keep Monster there, no problem. If she is leaving, I already have the JCC working on finding out if they have the resources to care for Monster. I am STRESSING about this and don’t need to yet. I can’t help it. I can’t help at these times feeling a bit bad for both Monster and me, when I think, “nobody wants him!”. Or they do, but they must find someone to help with him and get copies of his IEP, talk with his case worker, etc, to see exactly what sort of child they are dealing with.
Everything is up in the air. And I hate that more than anything. Being in the middle of “not knowing” is the worst place a person could be, in my opinion. Yes I could maybe allow myself to feel excited, as if the whole world is out there for us to choose from, but instead it feels like we’re in a huge crowded department store and there’s something we NEED and there are two left on the shelf and others are trying to grab them and a salesperson is telling us all, “you must wait until we see who deserves these. We don’t know if they will help you or not, and we don’t want you to have them unless we know that!” And the crowd is closing in, all wanting what we need, and I feel like I cannot take my eyes off that shelf for one moment, because someone may snatch them up before I am even given a chance to plead my case.
I don’t want a surprise. I want someone to tell me, “We’d love to have your son here for the summer, and we will make it work out, no matter what!” instead of the more honest “We’d love to have your son here for the summer, but let’s make sure first that we can find someone to help him, and make sure that any adjustments he needs we will be able to make.” Sigh. I hate honesty. But of course if anyone told me the former, I would be immediately suspicious. Gone are my days of being easily excited by great news and helpful people who have not studied my son in-depth.
Sometimes it’s just sad.
It’s time for me to look at Monster pictures again to remind myself why I am doing all of this. His sweet little face is all I need to go on. And it will all work out. It always does, with or without my worrying. So why do I worry?
I was surprised, and saddened (always a bit saddened) when I realized how many type 1 behaviors (AKA bad behaviors, or “needs lots of help” behaviors) my son displays. It’s hard to have other people come in and look at my child and make statements about him that seem so awful until you realize that they’re all true, and I as the parent am so immersed this child’s life that a lot of this stuff starts to look and feel normal to me. So we got more than enough hours to get our son extra help, and I felt depressed for a few days because I was half-hoping the HHCN would get a bit angry with me and ask me why I had wasted her time, asking her to come out and assess this perfectly wonderfully normal child.
I jumped right in and posted ads for PCAs. It wasn’t until a day later when we started getting calls about the position that my husband discovered what I had done and asked me why on earth I was looking for a PCA now that we would not be able to hire for two months at least, if at all. Whoops. But the women were calling, and I had a few appointments set up to meet with people. I decided to go ahead and meet these women.
The two women I have met so far are wonderful. They are mothers themselves, and one has worked with lots of autistic boys. They both seem like they would do an amazing job caring for my son.And yet.
Both of these women are offering to pick my son up from school, and I don’t want anyone driving him anywhere. One woman offered to sometimes take him to her house to spend the night with her three children and I thought, well first, I don’t think you can count that as PCA hours, and secondly, no, there is a man in your house I have never met. Plus I barely know you. Do you have guns in your house? Does anyone smoke and when was the last time you had your electrical wiring checked? Because, you know, your house could burn down.
I cannot smother my child. I understand this. But he is six and still seems very vulnerable and helpless to me (and apparently also to the HHCN). I want him at our house, not being picked up or driven anywhere. I want him here, in our house in familiar surroundings; with a woman we have interviewed and spent enough time with to trust our house and child with, and nobody else. Just the two of them.This brings me to my next worry. I have never voluntarily placed my son in a home daycare because I don’t trust people as a rule. I always figured centers had double-checks. No adult was ever alone with a child – they were always being watched by other adults, and hopefully that kept everyone in line. Homes could have just one adult, and several children who can’t speak up for themselves. I have put Monster in two home daycares when we ran out of centers close by. But I disliked both of them. I pulled him out of one and was upset but secretly relieved when Monster got kicked out of the second one.
Don’t get me wrong. I know there are many wonderful home daycares out there and many really awful centers. It’s my own prejudice and I admit this.
So now I don’t know if I even want to leave my son with a PCA, if we ever get the hours approved. The one-on-one aide that they found for Monster now is so good with him and M just loves her. The problems have come less and less frequently since she showed up, and she gives my son the one gift that so many teachers and aides can’t seem to do – the gift of believing in his goodness, and expecting the best out of him instead of the worst. So why would I monkey with something that seems to be working at the time?
It would save us money, but doesn’t that money buy us the peace of mind that I must have to go to work and know that my son is safe and well-cared-for?
I have already started fretting over summer break, because my son will have to spend it somewhere, or with someone. We don’t have enough hours for a FT PCA 5 days a week. There are right now two options – the local Jewish community center and the place he’s in now. If Monster’s aide is staying for the summer, I will keep Monster there, no problem. If she is leaving, I already have the JCC working on finding out if they have the resources to care for Monster. I am STRESSING about this and don’t need to yet. I can’t help it. I can’t help at these times feeling a bit bad for both Monster and me, when I think, “nobody wants him!”. Or they do, but they must find someone to help with him and get copies of his IEP, talk with his case worker, etc, to see exactly what sort of child they are dealing with.
Everything is up in the air. And I hate that more than anything. Being in the middle of “not knowing” is the worst place a person could be, in my opinion. Yes I could maybe allow myself to feel excited, as if the whole world is out there for us to choose from, but instead it feels like we’re in a huge crowded department store and there’s something we NEED and there are two left on the shelf and others are trying to grab them and a salesperson is telling us all, “you must wait until we see who deserves these. We don’t know if they will help you or not, and we don’t want you to have them unless we know that!” And the crowd is closing in, all wanting what we need, and I feel like I cannot take my eyes off that shelf for one moment, because someone may snatch them up before I am even given a chance to plead my case.
I don’t want a surprise. I want someone to tell me, “We’d love to have your son here for the summer, and we will make it work out, no matter what!” instead of the more honest “We’d love to have your son here for the summer, but let’s make sure first that we can find someone to help him, and make sure that any adjustments he needs we will be able to make.” Sigh. I hate honesty. But of course if anyone told me the former, I would be immediately suspicious. Gone are my days of being easily excited by great news and helpful people who have not studied my son in-depth.
Sometimes it’s just sad.
It’s time for me to look at Monster pictures again to remind myself why I am doing all of this. His sweet little face is all I need to go on. And it will all work out. It always does, with or without my worrying. So why do I worry?
Monday, February 11, 2008
Friends
I used to have friends. All through school I had friends. Even though I wasn’t popular there were always girls and boys that I played with. All the way through high school I had groups of friends. But I was fickle. I hopped from group to group as it suited me. Occasionally I had only one friend and excluded everyone else from my life.
So now I don’t find it surprising that, at 43, I am lacking IRL friends. The last best friend I had got angry with me for moving 2,000 miles away from her and then having a baby, so we stopped keeping in touch. That was 6 years ago. I went to those mommy-and-me-type classes to try and make friends, but found out quickly I was nothing like any of the mothers I met. I was older than most. I had only one child and didn’t want more. I didn’t obsess over getting back to my pre-baby weight. I could have tried to reach out and find something in common with these women, but instead I drew myself in and pulled away.
There were a couple of promising leads, but both came to screaching halts as it became apparent that my child was different from most and that both of these mommies seemed to think it was my fault. So once again I pulled back. I think I was probably feeling this judgment by these women only because I felt so guilty about Monster myself. Chances are they didn’t judge me at all, and I walked away from their friendships due to my own paranoia.But I don’t think much of it because my life is too full for friends. And I know I’m supposed to be taking time off for just me, and I do, but I take that time alone. I feel very content to be a solitary person, it turns out. I have my little family here and I have friends on a board I have belonged to for years now, and they are my truest friends. They are there when I need them and I try to be there for them when they need me, but they are not demanding my time and attention unless I turn on my computer and head over to the board. I’m sure this makes me the most selfish person in the world, but my life is not set up for IRL friends anymore. Whatever time I don’t spend with my husband and/or kid is time I want to spend by myself, doing exactly what I want to do and not having to compromise with anyone else.
Now, is it old age that has done this to me? Have I always been antisocial but made exceptions in school to keep from being a lonely outcast? I don’t know. It bothers me only very occasionally. I shouldn’t say I have no IRL friends, I guess. I have two that I meet up with once a month or so for dinner, and we have been friends for almost 12 years. But one now has two tiny kids and the other has a grandchild and I worry that we are all sort of slipping away from each other into our own remote lives.
I guess I wouldn’t be opposed to having a new IRL best friend if the right person came along. But for now I enjoy my solitude and my quiet. My husband is a lot like me, although lately he is reaching out and getting involved in things and getting out into society. I do make attempts. I took a knitting class. I belong to a support group. I keep meaning to join a book club or something like that. But then part of me just wants to stay inside of myself, secluded and safe. I’m not ready to expose a lot of myself to someone at this time, and I can’t have superficial relationships.
Someday, maybe, I’ll have a new friend. For now I wil hang out on the computer and be a loner. But not a sad one. Just someone who feels a need to close herself away from people most of the time. Remind me of this when I am nagging my son to get out there and make friends.
So now I don’t find it surprising that, at 43, I am lacking IRL friends. The last best friend I had got angry with me for moving 2,000 miles away from her and then having a baby, so we stopped keeping in touch. That was 6 years ago. I went to those mommy-and-me-type classes to try and make friends, but found out quickly I was nothing like any of the mothers I met. I was older than most. I had only one child and didn’t want more. I didn’t obsess over getting back to my pre-baby weight. I could have tried to reach out and find something in common with these women, but instead I drew myself in and pulled away.
There were a couple of promising leads, but both came to screaching halts as it became apparent that my child was different from most and that both of these mommies seemed to think it was my fault. So once again I pulled back. I think I was probably feeling this judgment by these women only because I felt so guilty about Monster myself. Chances are they didn’t judge me at all, and I walked away from their friendships due to my own paranoia.But I don’t think much of it because my life is too full for friends. And I know I’m supposed to be taking time off for just me, and I do, but I take that time alone. I feel very content to be a solitary person, it turns out. I have my little family here and I have friends on a board I have belonged to for years now, and they are my truest friends. They are there when I need them and I try to be there for them when they need me, but they are not demanding my time and attention unless I turn on my computer and head over to the board. I’m sure this makes me the most selfish person in the world, but my life is not set up for IRL friends anymore. Whatever time I don’t spend with my husband and/or kid is time I want to spend by myself, doing exactly what I want to do and not having to compromise with anyone else.
Now, is it old age that has done this to me? Have I always been antisocial but made exceptions in school to keep from being a lonely outcast? I don’t know. It bothers me only very occasionally. I shouldn’t say I have no IRL friends, I guess. I have two that I meet up with once a month or so for dinner, and we have been friends for almost 12 years. But one now has two tiny kids and the other has a grandchild and I worry that we are all sort of slipping away from each other into our own remote lives.
I guess I wouldn’t be opposed to having a new IRL best friend if the right person came along. But for now I enjoy my solitude and my quiet. My husband is a lot like me, although lately he is reaching out and getting involved in things and getting out into society. I do make attempts. I took a knitting class. I belong to a support group. I keep meaning to join a book club or something like that. But then part of me just wants to stay inside of myself, secluded and safe. I’m not ready to expose a lot of myself to someone at this time, and I can’t have superficial relationships.
Someday, maybe, I’ll have a new friend. For now I wil hang out on the computer and be a loner. But not a sad one. Just someone who feels a need to close herself away from people most of the time. Remind me of this when I am nagging my son to get out there and make friends.
Giving up on Hopelessness
I wrote this in December 2007. It was a turning point for me in my life, when I realized that all my worry and whining was really getting me nowhere, and only hurting my son...
Giving up on Hopelessness
I have been looking at my situation in the completely wrong way. My son’s disability did not happen to ME – it happened to him. I wonder why I have spent almost six years of my life feeling like the victim of some cruel joke.
I am the parent of a child with a disability. How does this affect my life? My son’s birth changed my entire life, but every time a child comes into a parent’s life there is cataclysmic change. Every child comes with their own set of challenges, and every parent brings their own past experiences into the mix. Why shouldn’t life be shaken to its core at this collision of new life and old wounds? This has nothing to do with disability, and everything to do with parenting, universally.
I have spent too much time looking into the future with fear and a sense of hopelessness for both my son and myself. I have not been fair to either of us.
When I feel hopelessness toward my situation, I am telling myself that I do not have the strength to fight when life gets rough. At one point in my life – not very long ago – this was true. But the experience of being a mother to a disabled child has forced me to find the strength inside of myself to advocate effectively for my child. If I can not find the strength inside of me, it is my job to gather about me the people and resources I needed to become stronger, to gain wisdom, and to transform myself into a woman to be reckoned with. Hopelessness toward my own future is self-centered and defeatist. My son has given me a purpose to find my own unique strengths and abilities, and for this I should be grateful, not resentful. I have spent too long resenting the life I found myself living once my child was born.
If I feel hopelessness for my son, then I am telling him (if only unconsciously) that I have given up on him. And there is never any reason to give up on a child, especially not one who shows as much joy and courage as my son does. His future is nowhere near being set. His disability need not limit him in any way. I find that I have been irresponsible in lowering my expectations for this child when all along I should have been raising them, because my son will need to fight and it is up to me to give him the strength he will need to smash any boulders that block his path in life.
My son has this one issue that troubles me. But this is only one part of him. This part (the disability) gets the most attention; the most intense scrutiny. What I don’t want is for my son to start defining himself in only this one facet of his whole being. I want him to remember that he is an immensely beautiful, wonderful, intelligent child who holds all of the promise within him to be great in this world. He is no less or more than any other child.
The magic of the universe flows through him and all children. Most of us as adults have lost touch with this magic but our children are immersed in it and the magic swims through them. Even if I tried to narrow my son to fit my vision of his disability, he still holds the wisdom and knowledge that he flies beyond my expectations. Only if I were able to convince him that he is limited would he then lose this ability to see the light flowing beyond him.
If I allow my son to grow within the miracle of his infinite future, he will never be defined by his disability; rather, he will never lose the magic within him even as he grows, and will carry it with him always. I am blessed to be a part of this child’s life. I really cannot complain. I am in awe of the responsibility I have toward him. His trust in me humbles me. And the magic within him renews me and allows me another chance to find within myself the magic I lost ages ago. Perhaps by letting go of the worry and hopelessness, I open the space in my soul for the magic to enter. It’s waiting just outside. I need only to give it room to enter and grow.
Giving up on Hopelessness
I have been looking at my situation in the completely wrong way. My son’s disability did not happen to ME – it happened to him. I wonder why I have spent almost six years of my life feeling like the victim of some cruel joke.
I am the parent of a child with a disability. How does this affect my life? My son’s birth changed my entire life, but every time a child comes into a parent’s life there is cataclysmic change. Every child comes with their own set of challenges, and every parent brings their own past experiences into the mix. Why shouldn’t life be shaken to its core at this collision of new life and old wounds? This has nothing to do with disability, and everything to do with parenting, universally.
I have spent too much time looking into the future with fear and a sense of hopelessness for both my son and myself. I have not been fair to either of us.
When I feel hopelessness toward my situation, I am telling myself that I do not have the strength to fight when life gets rough. At one point in my life – not very long ago – this was true. But the experience of being a mother to a disabled child has forced me to find the strength inside of myself to advocate effectively for my child. If I can not find the strength inside of me, it is my job to gather about me the people and resources I needed to become stronger, to gain wisdom, and to transform myself into a woman to be reckoned with. Hopelessness toward my own future is self-centered and defeatist. My son has given me a purpose to find my own unique strengths and abilities, and for this I should be grateful, not resentful. I have spent too long resenting the life I found myself living once my child was born.
If I feel hopelessness for my son, then I am telling him (if only unconsciously) that I have given up on him. And there is never any reason to give up on a child, especially not one who shows as much joy and courage as my son does. His future is nowhere near being set. His disability need not limit him in any way. I find that I have been irresponsible in lowering my expectations for this child when all along I should have been raising them, because my son will need to fight and it is up to me to give him the strength he will need to smash any boulders that block his path in life.
My son has this one issue that troubles me. But this is only one part of him. This part (the disability) gets the most attention; the most intense scrutiny. What I don’t want is for my son to start defining himself in only this one facet of his whole being. I want him to remember that he is an immensely beautiful, wonderful, intelligent child who holds all of the promise within him to be great in this world. He is no less or more than any other child.
The magic of the universe flows through him and all children. Most of us as adults have lost touch with this magic but our children are immersed in it and the magic swims through them. Even if I tried to narrow my son to fit my vision of his disability, he still holds the wisdom and knowledge that he flies beyond my expectations. Only if I were able to convince him that he is limited would he then lose this ability to see the light flowing beyond him.
If I allow my son to grow within the miracle of his infinite future, he will never be defined by his disability; rather, he will never lose the magic within him even as he grows, and will carry it with him always. I am blessed to be a part of this child’s life. I really cannot complain. I am in awe of the responsibility I have toward him. His trust in me humbles me. And the magic within him renews me and allows me another chance to find within myself the magic I lost ages ago. Perhaps by letting go of the worry and hopelessness, I open the space in my soul for the magic to enter. It’s waiting just outside. I need only to give it room to enter and grow.
Sunday, February 10, 2008
Birthday party!!
This afternoon was Monster's birthday party at our local Pump it Up. Super expensive, but so worth it to see my son being king for a day. We are lucky that we have the three kids down the street and the one kid across the street who came to the party, because Monster is exactly popular in school or daycare. So we sat and watched these five sweet kids have just an amazing time and I felt so grateful for all we have (see my gratitude post).
My son is 6. I can't believe how quickly he's growing and changing. It's wonderful and scary and thrilling to be along for the ride.
My son is 6. I can't believe how quickly he's growing and changing. It's wonderful and scary and thrilling to be along for the ride.
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