Yesterday I was sitting at my desk at work and it dawned on me that we had survived the entire summer without one single disaster - we never had to come pick Monster up from anyplace or stay home because he has been suspended or kicked out.
So I was feeling pretty god about this and practically danced all the way to my car. That night would be special - we should go out to dinner or at least Dairy Queen or something. I got into my car and put in a CD and was checking which song was on as I backed out of my space - right into a minivan stopped behind me.
And you know what? I'm STILL happy. I can't believe we made it! Monster's school teacher called the other day and wanted to know how his summer was and I had told her, it went really well, everything worked out perfectly. And she said how I had worked so hard to get M all this help and I should be so proud of myself. But, hey, what about all of the people who cared for Monster during the summer and understood him and didn't give up on him or kick him out - they all deserve so much credit, for caring for my son and treating him with respect.
I have a good feeling about first grade. We don't need to worry about daycare for the time being (Oh and BTW the OCR sent us a packet - there's not enough evidence that my son was discriminated against), and he's getting lots of support from the day treatment program and his teacher.
Saturday, August 30, 2008
Monday, August 25, 2008
What is drowning me
The grieving I seem to have never done, or never done adequately when I learned my beautiful boy would have lifelong issues.
The time when Monster was about 5, when I commented on my support board that the thought of staying home alone with Monster all day every day through the summer made me feel that I couldn’t breathe – I knew I couldn’t do it – and how one of the women on the board commented, “this makes me sad for Monster.” And I wonder exactly what sort of mother I really am that I would not be thrilled at this thought of all this time with my child.
The idea that I have Monster in two – not just one, but two – different classroom settings that I still am not convinced are the best places for him, but see no other options, and don’t know how I will ever know if these places are good for him until after the fact, when it’s too late to change.
The idea that Monster is 6 and still so attached to me, as if I have turned him into a needy Mama’s boy who will not learn how to stand on his own.
The thought that Hubby and I are more like co-parents and less like a couple. It’s been this way forever but it’s something that really came to light this weekend.
What my son did yesterday. His feral friends had company so he asked me to invite R over. Feral friends show up and suddenly it’s a circus in our yard. Hubby tries to send them away and R throws a tantrum and threatens to get “really angry” if the ferals aren’t allowed to stay. So they stay because R needs to be either placated or sent home, and I could have sent them all home and left Monster friendless, but it seemed too much like punishing M for something he found himself in the middle of. But then M came in asking for water. I made him two water bottles with ice water and told him to give one to R, since the ferals can go home to get something to drink if they want. He gives the second bottle to A, the feral sister, “because he loves her”. I am furious with him for
A) not doing what I asked
B) not being respectful toward his guest
C) choosing his feral everyday friend over his special guest that he requested to come over
He only asked for R because his friends were supposedly unavailable. I had to put my foot down last night and tell him no treat tonight, and then he screamed at me and told me to shut up. Then I sent him to his room. I told him no more ferals when you invite guests over. They WILL be sent away as soon as they show up. Monster replies, “well, if R wants them over…” and I don’t know what to do about that. The ferals don’t understand R. He gets along fine with Monster and the two play wonderfully together. But the ferals do to him what they do to my M – stir him up, make him nervous and restless, say hurtful things. And my M makes me more angry because he starts playing with the ferals as if R doesn’t even exist. I was forced to go out regularly and ask R, are they playing with you? Are they being nice? After finding him alone in the playhouse while M and the ferals rode their bikes around.
Today the grief seems not such a huge tidal wave coming at me. It seems instead to have already hit, and it settles around me and laps at my legs and I can’t wade through it don’t know which way shore is don’t even know if there is a shore anymore.I can’t be disappointed in my son for being who he is. And I sometimes don’t know when I cross that line. He needs to be taught to be respectful of others for sure. But aside from my total confusion about how better to handle yesterday is my sudden anger that arises from nowhere and sweeps over both of us. The other evening M got home from school and we were talking and I made him laugh and he wet himself a little. And I sent him to his room and told him to get changed. Hubby called and I was talking to him and Monster was calling for help and I ignored him, because Monster claims to need my help 95% of the time and maybe 5% of that time he really DOES need it. I finally got off the phone and went to check on him and he had peed onto his bed and all over the floor. I was furious. I was so angry I couldn’t think straight. I yelled. I asked him what the hell was he thinking, doesn’t he have any sense, etc. But then when I retold the story a friend pointed out that I should have sent him into the bathroom, since knowing some had come out, the rest was close behind. And M had his hi-tops and orthotics on, and even I have trouble getting those off. Asking M to do it, quickly, so he could get his clothes changed, was just stupid of me. So here was just one example of the ways I fail my son. I lead him the wrong way and then blow my stack when he does what I say but it’s the wrong thing.
I apologized. I always apologize. But how many times do I get to say “I’m sorry” before he stops believing me? Why does he have to love me so much? I fail him so often. I wonder why I was given this child who was obviously meant for someone with more patience, more common sense, more understanding. All I can do is love him more than life itself. And it doesn’t feel like nearly enough.
The time when Monster was about 5, when I commented on my support board that the thought of staying home alone with Monster all day every day through the summer made me feel that I couldn’t breathe – I knew I couldn’t do it – and how one of the women on the board commented, “this makes me sad for Monster.” And I wonder exactly what sort of mother I really am that I would not be thrilled at this thought of all this time with my child.
The idea that I have Monster in two – not just one, but two – different classroom settings that I still am not convinced are the best places for him, but see no other options, and don’t know how I will ever know if these places are good for him until after the fact, when it’s too late to change.
The idea that Monster is 6 and still so attached to me, as if I have turned him into a needy Mama’s boy who will not learn how to stand on his own.
The thought that Hubby and I are more like co-parents and less like a couple. It’s been this way forever but it’s something that really came to light this weekend.
What my son did yesterday. His feral friends had company so he asked me to invite R over. Feral friends show up and suddenly it’s a circus in our yard. Hubby tries to send them away and R throws a tantrum and threatens to get “really angry” if the ferals aren’t allowed to stay. So they stay because R needs to be either placated or sent home, and I could have sent them all home and left Monster friendless, but it seemed too much like punishing M for something he found himself in the middle of. But then M came in asking for water. I made him two water bottles with ice water and told him to give one to R, since the ferals can go home to get something to drink if they want. He gives the second bottle to A, the feral sister, “because he loves her”. I am furious with him for
A) not doing what I asked
B) not being respectful toward his guest
C) choosing his feral everyday friend over his special guest that he requested to come over
He only asked for R because his friends were supposedly unavailable. I had to put my foot down last night and tell him no treat tonight, and then he screamed at me and told me to shut up. Then I sent him to his room. I told him no more ferals when you invite guests over. They WILL be sent away as soon as they show up. Monster replies, “well, if R wants them over…” and I don’t know what to do about that. The ferals don’t understand R. He gets along fine with Monster and the two play wonderfully together. But the ferals do to him what they do to my M – stir him up, make him nervous and restless, say hurtful things. And my M makes me more angry because he starts playing with the ferals as if R doesn’t even exist. I was forced to go out regularly and ask R, are they playing with you? Are they being nice? After finding him alone in the playhouse while M and the ferals rode their bikes around.
Today the grief seems not such a huge tidal wave coming at me. It seems instead to have already hit, and it settles around me and laps at my legs and I can’t wade through it don’t know which way shore is don’t even know if there is a shore anymore.I can’t be disappointed in my son for being who he is. And I sometimes don’t know when I cross that line. He needs to be taught to be respectful of others for sure. But aside from my total confusion about how better to handle yesterday is my sudden anger that arises from nowhere and sweeps over both of us. The other evening M got home from school and we were talking and I made him laugh and he wet himself a little. And I sent him to his room and told him to get changed. Hubby called and I was talking to him and Monster was calling for help and I ignored him, because Monster claims to need my help 95% of the time and maybe 5% of that time he really DOES need it. I finally got off the phone and went to check on him and he had peed onto his bed and all over the floor. I was furious. I was so angry I couldn’t think straight. I yelled. I asked him what the hell was he thinking, doesn’t he have any sense, etc. But then when I retold the story a friend pointed out that I should have sent him into the bathroom, since knowing some had come out, the rest was close behind. And M had his hi-tops and orthotics on, and even I have trouble getting those off. Asking M to do it, quickly, so he could get his clothes changed, was just stupid of me. So here was just one example of the ways I fail my son. I lead him the wrong way and then blow my stack when he does what I say but it’s the wrong thing.
I apologized. I always apologize. But how many times do I get to say “I’m sorry” before he stops believing me? Why does he have to love me so much? I fail him so often. I wonder why I was given this child who was obviously meant for someone with more patience, more common sense, more understanding. All I can do is love him more than life itself. And it doesn’t feel like nearly enough.
Sunday, August 24, 2008
Weeks pass by
School is one week away.
Our PCA actually DID get her ID badge so she actually can be Monster's PCA but it doesn't really matter now because she's done in a week.
We found out that the place that does M's respite will be available to him next summer - all day, every day Mon-Fri if we choose to do that. It's out of our way and he needs a lunch packed every day,but we might end up doing that. I know - leave it to me to start asking about next summer, but Monster has loved his Fridays there so much that he wanted me to make sure he could come back.
Monster is still in swimming but suffering a setback from the time he was at the rec center pool with Hubby and he jumped into the deep end and the lifeguard went in after him. He was scared and humiliated. So now he doesn't want to swim anymore. I try to explain to him that the lifeguard was doing his job and that when M learns to swim the lifeguard won't DO that anymore, but he is still freaked.
I have spent a good portion of this past month in a black depression that I didn't think I would get through. I spent a lot of time wondering how much better off Monster would be if I weren't around and would Hubby be able to handle him and maybe it would be for the best?
I wondered a lot if anything I have done for my child has helped in any way or am I simply making his life more difficult and really has he gotten any farther than he would have if I had simply let life take its course? I felt as if I had been deluding myself thinking I was making some sort of difference, thinking that I was going to make things better not only for my child but for others who will come after him. I felt stupid blogging about my son as if nobody else has struggled and fought for their child to simply be accepted and cared for.
I never heard from the OCR, but now I don't really care. After school care is a moot point right now - it isn't ideal but Hubby will go into work early on Friday, I will go in late, and Hubby will be home for Monster's afternoon bus.
The day treatment will keep Monster at school until 4 every Mon-Thurs, and I can be home for that bus.
I was hoping by this time that I might be able to work from home but my boss dislikes and/or distrusts me and won't let me work from home. But still it will work out, and since nobody wants to care for my son on school closing days hubby and I are divying up the days and staying home with him.
First grade starts right where Kindergarten dumped Monster off three months ago - same classroom, same teacher. Same uncontrollable children being carefully placed out into school settings so they can hopefully someday be properly mainstreamed.
I don't have as much hope for Monster's being mainstreamed as I used to. Since the day treatment program started M is in many ways just that much more difficult to deal with. He yells more, tantrums more, even hits more.
Hubby is losing control of himself and blowing up and I find myself blowing up at Monster more often and it feels as if we will all implode soon. I'm so grateful that we only have this one child because our family already feels out of control and chaotic. I can't imagine adding another child to the mix.
This is painful for me to write. I thought I was past this stage but I'm sitting here crying as I write this. Monster has friends down the street that he loves to pieces and they continue to come around and pester and treat M badly and we have kicked them out of the house but they strike when Monster is playing outside and Monster is so thrilled to play with them and I'm supposed to keep them away but Monster has to have friends. They're not the worst kids in the world - they just have shitty parents. And they offer a sort of perpetual energy and emotional unbalance that Monster seems to thrive on - like a nonstop roller coaster ride.
Which is how he likes his whole life to be, which is why he throws drama and trauma into an otherwise idyllic peaceful day. Today the whole DAY was about Monster - I played Indiana Jones Lego with him for a couple of hours and then he wanted to invite his Asperger's friend R over. I called and set up the play date. The only thing we needed to do was go out and buy a dishwasher. And of course this was Monster's cue to fall apart and make sure we all ended up upset because HE had to go someplace he didn't want to go.
I guess I won't start jumping to any conclusions. School starts in one week and then we will only need to worry about the neighborhood feral children on the weekends because their parents have a rule that they can't play on school nights. Thank goodness. And we ran into a little girl at the nearby park who M went to school with before he was placed in special ed and her grandma gave me her number. Maybe he can make friends with her and want to play with her all of the time? Maybe he will make friends at school.
I'm so tired of deluding myself into thinking everything will turn out okay for Monster. I am going into this school year far less hopeful and far less expectant. I don't have any desire to fight and don't anticipate any need. I can't take my frustration any further than I've taken it. The fight in me is gone and my son seems to be losing ground. All the help that fluttered in and out of my life has wandered off - they lose interest in the older kids, the lost causes, and go after the young, fresh ones with a new vigor - THIS one I will fix! - and the rest of us with the no-longer-cute, no-longer-promising, no-longer-fresh-and-malleable children are sent out into the world with our damaged goods, and we sink or we swim. We have no choice.
Our PCA actually DID get her ID badge so she actually can be Monster's PCA but it doesn't really matter now because she's done in a week.
We found out that the place that does M's respite will be available to him next summer - all day, every day Mon-Fri if we choose to do that. It's out of our way and he needs a lunch packed every day,but we might end up doing that. I know - leave it to me to start asking about next summer, but Monster has loved his Fridays there so much that he wanted me to make sure he could come back.
Monster is still in swimming but suffering a setback from the time he was at the rec center pool with Hubby and he jumped into the deep end and the lifeguard went in after him. He was scared and humiliated. So now he doesn't want to swim anymore. I try to explain to him that the lifeguard was doing his job and that when M learns to swim the lifeguard won't DO that anymore, but he is still freaked.
I have spent a good portion of this past month in a black depression that I didn't think I would get through. I spent a lot of time wondering how much better off Monster would be if I weren't around and would Hubby be able to handle him and maybe it would be for the best?
I wondered a lot if anything I have done for my child has helped in any way or am I simply making his life more difficult and really has he gotten any farther than he would have if I had simply let life take its course? I felt as if I had been deluding myself thinking I was making some sort of difference, thinking that I was going to make things better not only for my child but for others who will come after him. I felt stupid blogging about my son as if nobody else has struggled and fought for their child to simply be accepted and cared for.
I never heard from the OCR, but now I don't really care. After school care is a moot point right now - it isn't ideal but Hubby will go into work early on Friday, I will go in late, and Hubby will be home for Monster's afternoon bus.
The day treatment will keep Monster at school until 4 every Mon-Thurs, and I can be home for that bus.
I was hoping by this time that I might be able to work from home but my boss dislikes and/or distrusts me and won't let me work from home. But still it will work out, and since nobody wants to care for my son on school closing days hubby and I are divying up the days and staying home with him.
First grade starts right where Kindergarten dumped Monster off three months ago - same classroom, same teacher. Same uncontrollable children being carefully placed out into school settings so they can hopefully someday be properly mainstreamed.
I don't have as much hope for Monster's being mainstreamed as I used to. Since the day treatment program started M is in many ways just that much more difficult to deal with. He yells more, tantrums more, even hits more.
Hubby is losing control of himself and blowing up and I find myself blowing up at Monster more often and it feels as if we will all implode soon. I'm so grateful that we only have this one child because our family already feels out of control and chaotic. I can't imagine adding another child to the mix.
This is painful for me to write. I thought I was past this stage but I'm sitting here crying as I write this. Monster has friends down the street that he loves to pieces and they continue to come around and pester and treat M badly and we have kicked them out of the house but they strike when Monster is playing outside and Monster is so thrilled to play with them and I'm supposed to keep them away but Monster has to have friends. They're not the worst kids in the world - they just have shitty parents. And they offer a sort of perpetual energy and emotional unbalance that Monster seems to thrive on - like a nonstop roller coaster ride.
Which is how he likes his whole life to be, which is why he throws drama and trauma into an otherwise idyllic peaceful day. Today the whole DAY was about Monster - I played Indiana Jones Lego with him for a couple of hours and then he wanted to invite his Asperger's friend R over. I called and set up the play date. The only thing we needed to do was go out and buy a dishwasher. And of course this was Monster's cue to fall apart and make sure we all ended up upset because HE had to go someplace he didn't want to go.
I guess I won't start jumping to any conclusions. School starts in one week and then we will only need to worry about the neighborhood feral children on the weekends because their parents have a rule that they can't play on school nights. Thank goodness. And we ran into a little girl at the nearby park who M went to school with before he was placed in special ed and her grandma gave me her number. Maybe he can make friends with her and want to play with her all of the time? Maybe he will make friends at school.
I'm so tired of deluding myself into thinking everything will turn out okay for Monster. I am going into this school year far less hopeful and far less expectant. I don't have any desire to fight and don't anticipate any need. I can't take my frustration any further than I've taken it. The fight in me is gone and my son seems to be losing ground. All the help that fluttered in and out of my life has wandered off - they lose interest in the older kids, the lost causes, and go after the young, fresh ones with a new vigor - THIS one I will fix! - and the rest of us with the no-longer-cute, no-longer-promising, no-longer-fresh-and-malleable children are sent out into the world with our damaged goods, and we sink or we swim. We have no choice.
Friday, August 8, 2008
Watch as your carefully-constructed safety net disintigrates around your child
When I tok my new position I was under the impression that I would in the near future be able to work from home. I NEED to work from home, at least Fridays, because my son gets home from school an hour earlier than the rest of the week. Suddenly my boss is not budging. She isn't going to let me work from home and she is having difficulty trying to decide if I can work an hour later on Thursday and leave early on Friday.
I wrote her a very nice email and told her, I have no place to put my son Friday afternoons. I have nobody to watch him. No place within bussing range will take him, because of his behavior issues. This is why I requested intermittent FMLA, so I would be able to be there for my son when he needs me (she talked me out of it when the request got to her. She claimed she'd work with me and that I didn't need it).
Two days ago I get a phone call from my parent advocate. She wants to let me know she is leaving in two weeks and she's going into teaching. I ask her, is someone going to be given Monster's case? And she says, well, nothing is really going on right now, right? Right. I haven't called her in weeks. Months, even. So she isn't giving my case to anyone, but I can call any time and they will put someone new with me if I need it.
Yesterday I get a phone call from the people who manage Monster's PCA hours and pay B. Well, whoops, they tell me. We weren't supposed to be allowing people under 18 be PCA's. It's this new federal law and we put in B's request right before it went into effect and guess what? They denied her - NOW - at the end of summer, and we aren't going to charge you - don't worry about that - it was our mistake - but B can't be Matt's PCA after today. Sorry.
I say fine, I'll pay her out of pocket. It's four more half days and three more whole days. Not the hugest deal.
But the plan has been that the week before the last week of August Monster would spend the whole week at this place, in respite care, because the day school is closed those two weeks, and B doesn't want to watch Monster all day for two weeks. So one week at respite, and then two days there the next week, and then respite closes so B watches Monster the last three days of August. Then school starts.
Except that the woman who told me it would be fine for M to spend the full week there (he goes there every Friday, as it is) wants me to get together with M's aide to "discuss strategies" for when M "loses control". I know what this means. I know. They won't keep him the whole week. They'll tell me they can't manage him. I'll get stuck staying home with him because a whole week is just too much for M to handle and he's getting to stressed and respite can't handle him.
Nobody realizes how transparent that request is. I've been asked to discuss strategies so often that I know exactly what comes after that. This is the "we did everything we could to work with the parent" step that they need to feel okay about kicking your kid out.
I feel as if I am slowly unraveling, just like Monster's net.
I wrote her a very nice email and told her, I have no place to put my son Friday afternoons. I have nobody to watch him. No place within bussing range will take him, because of his behavior issues. This is why I requested intermittent FMLA, so I would be able to be there for my son when he needs me (she talked me out of it when the request got to her. She claimed she'd work with me and that I didn't need it).
Two days ago I get a phone call from my parent advocate. She wants to let me know she is leaving in two weeks and she's going into teaching. I ask her, is someone going to be given Monster's case? And she says, well, nothing is really going on right now, right? Right. I haven't called her in weeks. Months, even. So she isn't giving my case to anyone, but I can call any time and they will put someone new with me if I need it.
Yesterday I get a phone call from the people who manage Monster's PCA hours and pay B. Well, whoops, they tell me. We weren't supposed to be allowing people under 18 be PCA's. It's this new federal law and we put in B's request right before it went into effect and guess what? They denied her - NOW - at the end of summer, and we aren't going to charge you - don't worry about that - it was our mistake - but B can't be Matt's PCA after today. Sorry.
I say fine, I'll pay her out of pocket. It's four more half days and three more whole days. Not the hugest deal.
But the plan has been that the week before the last week of August Monster would spend the whole week at this place, in respite care, because the day school is closed those two weeks, and B doesn't want to watch Monster all day for two weeks. So one week at respite, and then two days there the next week, and then respite closes so B watches Monster the last three days of August. Then school starts.
Except that the woman who told me it would be fine for M to spend the full week there (he goes there every Friday, as it is) wants me to get together with M's aide to "discuss strategies" for when M "loses control". I know what this means. I know. They won't keep him the whole week. They'll tell me they can't manage him. I'll get stuck staying home with him because a whole week is just too much for M to handle and he's getting to stressed and respite can't handle him.
Nobody realizes how transparent that request is. I've been asked to discuss strategies so often that I know exactly what comes after that. This is the "we did everything we could to work with the parent" step that they need to feel okay about kicking your kid out.
I feel as if I am slowly unraveling, just like Monster's net.
Tuesday, August 5, 2008
"Husband is unsupportive and rude..."
Yesterday was the second home visit from the caseworker for Monster’s day program. She’s supposed to be discussing with us what sorts of things she can help up with for M, what sort of services she has available, books for up to read in our spare time (haha!), but it’s obvious what she’s doing. She’s observing us. She’s checking on the housing situation (and the house was/is trashed right now, BTW), she’s seeing how we interact with Monster. She listens for the tones of our voice and the things we do wrong when it comes to caring for our son.
It’s annoying enough, except that Hubby hates these people (they have promised too much, let us down too much, hurt our child too much [and I mean “these people” in general – teachers, principals, caseworkers, aides, etc] and he is barely civil to this woman. I can picture her writing in her notes, “Sullen, unsupportive husband”. And while I don’t care what these people think of us, I think it may be nicer if Hubby just TRIED to be friendly for once.
Oh well – at least I get to come out looking as the victim in all of this; “Monster is supported by his mother, while husband is present but emotionally distant.” It’s funny, because he isn’t like that at all. It’s like he’s playing a game with these people. I don’t get it, but maybe he needs to understand that one of these people may in fact want to help us with M and maybe we should give them a chance.
We’ve been giving them chances for the past two + years. Nobody has really pulled through for us, without having me behind them, forcing then in the direction I want Monster taken.
It’s annoying enough, except that Hubby hates these people (they have promised too much, let us down too much, hurt our child too much [and I mean “these people” in general – teachers, principals, caseworkers, aides, etc] and he is barely civil to this woman. I can picture her writing in her notes, “Sullen, unsupportive husband”. And while I don’t care what these people think of us, I think it may be nicer if Hubby just TRIED to be friendly for once.
Oh well – at least I get to come out looking as the victim in all of this; “Monster is supported by his mother, while husband is present but emotionally distant.” It’s funny, because he isn’t like that at all. It’s like he’s playing a game with these people. I don’t get it, but maybe he needs to understand that one of these people may in fact want to help us with M and maybe we should give them a chance.
We’ve been giving them chances for the past two + years. Nobody has really pulled through for us, without having me behind them, forcing then in the direction I want Monster taken.
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