Monster told me yesterday that there’s a new woman on his return bus. There used to be two men but the man is gone and now this woman is the aide. When Matt doesn’t listen to her or disobeys her, she calls him stupid.
As always, I kept my reaction calm. I told him, that’s not nice of her to do that. I guess I’ll call the bus company tomorrow and tell them to ask her to stop.
So today I found out that this woman has been on the bus approx a month. Monster has been having extra issues at school the past moth. Hmmmm. I was assured this woman would no longer be on M’s bus. I called his teacher and told her of my discovery, and asked her please to watch when the busses pick up to make sure there’s a new aide on the bus. I also said, this may have been part of his problem. He was dreading the afternoon bus all day long.
People suck. Not all of them, but times like this it feels like it. Why would you call a small 6-year-old special needs boy “stupid”? What kind of ignorant bully piece of crap person are you? I want to find this person and beat her face in. And no, I’m not at all a violent person.
We work so hard to keep my son’s actions separated from who he is, and then one person comes along and works at pulling down all that we’ve worked to build on. WTF?
I’m just so angry right now. It’s a good thing I don’t know who this person is. She’s just better not ever set foot near my child again.
Tuesday, May 27, 2008
Monday, May 26, 2008
Not liking the boy much
Once, at a parents' support meeting, a woman was talking about her 8-year old son and how he talks back, doesn't listen, has become more aggressive and mean, etc. And I naively said, well, at least you still have your sweet boy sometimes, right? And she looked at me, and she wasn't even sad, really, just resigned. She said, "We see less and less of the sweetness, it seems."
And I felt so bad for her, and thought, well, at least Monster will stay sweet.
Ha - joke's on me, I guess. This kid rapidly becomes less and less sweet as time goes on. And now his cuddles are more like body slams and he won't just rub my hair - he pulls on it!
I called the school psychologist who told me Monster is just stressed with learning so much, but he's a wonderful, amazing, sweet, super-smart kid and I should be so proud of him - as if I called to complain about him! I called because I'm worried about him. He is changing so rapidly and he is losing hs sweetness and becoming someone who seems mean and sarcastic (who says Asperger kids don't get sarcasm? They don't know mine, obviously!) and just outright ugly a lot of the time. I want to know why. I AM proud of him.
Friday was another rough day for M at school and he had a one-hour "issue" where he could not pull himself together. I get these "CPI log sheets" that give me all of the sordid details of what he did, why he was held, how he was held, how long he was held, but on this one they added on to the back things he had said, from "You're going to jail!" to "Let us out (in, it is noted, a different voice, which when they asked 'who?', Monster answered, "Nate", to "I have a phone in my pocket and I'm calling the police - who's laughing now?" and I think, what am I supposed to think of this?
My first thought is, holy crap, my kid is cracking up and developing other personalities. My second thought was, he NEVER talks like that at home, no matter how awful he's being, and the third thought is, the "who's laughing now?" comment cracks me up. I feel like it shouldn't, but it does.
I spent two days worrying over that stupid sheet. But then it dawned on me, this is only their reality of the situation. Maybe Monster was yanking their chain. Why not? He does it to us all of the time. And why do they report this anyhow? Am I supposed to be concerned? Am I supposed to be upset that my child does these things? My child has done these things since he started talking, and he's been aggressive ever since he began walking upright, thus freeing two limbs to use as weapons.
I don't want to lose my sweet boy. But I know he's growing up. He is also going through some tough stuff right now - the new classroom is still just that - NEW. It's been, what, two months?
I try not to see everyone this way but in my opinion many of these special ed teachers paint very bleak pictures of my kid, even when they are praising his intelligence. they go around pretending they don't have negative attitudes by reporting that M spent an hour in the time out room but after he came out, he got back into his day and did great! And sometimes these reports feel to me like a detective reporting of a burglar, "he took all of the cash, but he mopped the floors and cleaned the windows!" and we're all supposed to notice how the detective pointed out a good thing for each bad one. As if he's finding the good in all the badness.
So anyhow, I've stopped worrying over this incident. I just want to see the good in my son. Not that I wear these rose-colored glasses, but if everyone else wants to look for the bad, well, then, I am allowed to see all of the good and point it out to the teachers if necessary.
And I felt so bad for her, and thought, well, at least Monster will stay sweet.
Ha - joke's on me, I guess. This kid rapidly becomes less and less sweet as time goes on. And now his cuddles are more like body slams and he won't just rub my hair - he pulls on it!
I called the school psychologist who told me Monster is just stressed with learning so much, but he's a wonderful, amazing, sweet, super-smart kid and I should be so proud of him - as if I called to complain about him! I called because I'm worried about him. He is changing so rapidly and he is losing hs sweetness and becoming someone who seems mean and sarcastic (who says Asperger kids don't get sarcasm? They don't know mine, obviously!) and just outright ugly a lot of the time. I want to know why. I AM proud of him.
Friday was another rough day for M at school and he had a one-hour "issue" where he could not pull himself together. I get these "CPI log sheets" that give me all of the sordid details of what he did, why he was held, how he was held, how long he was held, but on this one they added on to the back things he had said, from "You're going to jail!" to "Let us out (in, it is noted, a different voice, which when they asked 'who?', Monster answered, "Nate", to "I have a phone in my pocket and I'm calling the police - who's laughing now?" and I think, what am I supposed to think of this?
My first thought is, holy crap, my kid is cracking up and developing other personalities. My second thought was, he NEVER talks like that at home, no matter how awful he's being, and the third thought is, the "who's laughing now?" comment cracks me up. I feel like it shouldn't, but it does.
I spent two days worrying over that stupid sheet. But then it dawned on me, this is only their reality of the situation. Maybe Monster was yanking their chain. Why not? He does it to us all of the time. And why do they report this anyhow? Am I supposed to be concerned? Am I supposed to be upset that my child does these things? My child has done these things since he started talking, and he's been aggressive ever since he began walking upright, thus freeing two limbs to use as weapons.
I don't want to lose my sweet boy. But I know he's growing up. He is also going through some tough stuff right now - the new classroom is still just that - NEW. It's been, what, two months?
I try not to see everyone this way but in my opinion many of these special ed teachers paint very bleak pictures of my kid, even when they are praising his intelligence. they go around pretending they don't have negative attitudes by reporting that M spent an hour in the time out room but after he came out, he got back into his day and did great! And sometimes these reports feel to me like a detective reporting of a burglar, "he took all of the cash, but he mopped the floors and cleaned the windows!" and we're all supposed to notice how the detective pointed out a good thing for each bad one. As if he's finding the good in all the badness.
So anyhow, I've stopped worrying over this incident. I just want to see the good in my son. Not that I wear these rose-colored glasses, but if everyone else wants to look for the bad, well, then, I am allowed to see all of the good and point it out to the teachers if necessary.
Friday, May 23, 2008
Occupational therapy
Monster has been in OT since he was three. At three, he was diagnosed with sensory integration dysfunction and the OT worked with him on his sensitivity to noise, lights, textures, touch, etc. We didn't know about the Asperger's at the time, although there were hints and whisperings and denials about "that word". We only knew that he seemed to be benefitting from the OT, so we kept him in.
At the time, our insurance didn't cover it. It "wasn't necessary" for our son, since he had nothing wrong with him. We paid a fortune for it then. But M loved hia OT and she was helping him so much. She was the one who discovered Monster's freakishly double-jointed thumbs (you can fold them flat back onto his hand) and figured out how to help him hold a pencil using whatever hand strength he could get out of his floppy hands.
After the diagnosis, Monster switched to another OT, one that was now covered under the new diagnosis.
These OT's are amazingly accepting, helpful, wonderful, caring people. They put so much care and kindness into their work and have such positive attitudes.
Yesterday I called Monster's school psychologist to ask her about him. He's seemed stressed these past couple of weeks and I wanted her opinion on him. She told me that Monster works SO hard at school and is so proud of his accomplishments. She said he will keep at something even if it's hard for him at first, and he'll work at it until he can do it. She was very impressed with his persistence.
I had to think about that for awhile. Where did this come from? I'm not like that - I give up on everything. Hubby - well, he's the same way. We're just not the type to force ourselves to keep trying at something we don't really want to do. Or do want to do, until we see that it's hard.
Then it dawned on me. It was the OT. My son had learned to be persistent, to believe in his abilities, as he toiled away at OT working doubly hard to do things lost kids could do without even thinking about it. There, in the kind, accepting care of these wonderful young women, my son developed the attitude about himself that he could do anything he chose if he only tried harder.
When M was first diagnosed by the school I asked the people on his team that, if we had to choose, what should we do for M as an outside school activity? Should we continue his OT, or put him in a social skills class? They all agreed that Monster need social skills classes so much more than OT. Well, it turns out SS classes are REALLY expensive. At the time M wasn't on MA so we would have had to pay it all out of pocket. Our choice to keep him in OT was due to the fact that our insurance now paid at least a percentage of the OT.
Now if anyone with a young child just diagnosed and is suddenly not knowing where to turn and thinking, Oh no! I need to get my son OT and PT and ST and SS classes and.....! I would tell them, get him into OT first. Give him that base, that sense of "I can". It's a strength that will take my son so far in life. He may have to work twice as hard to do stuff, but he's got the will and the strength to do it.
And I think we owe it all to the OT. They gave him this belief in himself. And I am so grateful that my son received this gift.
At the time, our insurance didn't cover it. It "wasn't necessary" for our son, since he had nothing wrong with him. We paid a fortune for it then. But M loved hia OT and she was helping him so much. She was the one who discovered Monster's freakishly double-jointed thumbs (you can fold them flat back onto his hand) and figured out how to help him hold a pencil using whatever hand strength he could get out of his floppy hands.
After the diagnosis, Monster switched to another OT, one that was now covered under the new diagnosis.
These OT's are amazingly accepting, helpful, wonderful, caring people. They put so much care and kindness into their work and have such positive attitudes.
Yesterday I called Monster's school psychologist to ask her about him. He's seemed stressed these past couple of weeks and I wanted her opinion on him. She told me that Monster works SO hard at school and is so proud of his accomplishments. She said he will keep at something even if it's hard for him at first, and he'll work at it until he can do it. She was very impressed with his persistence.
I had to think about that for awhile. Where did this come from? I'm not like that - I give up on everything. Hubby - well, he's the same way. We're just not the type to force ourselves to keep trying at something we don't really want to do. Or do want to do, until we see that it's hard.
Then it dawned on me. It was the OT. My son had learned to be persistent, to believe in his abilities, as he toiled away at OT working doubly hard to do things lost kids could do without even thinking about it. There, in the kind, accepting care of these wonderful young women, my son developed the attitude about himself that he could do anything he chose if he only tried harder.
When M was first diagnosed by the school I asked the people on his team that, if we had to choose, what should we do for M as an outside school activity? Should we continue his OT, or put him in a social skills class? They all agreed that Monster need social skills classes so much more than OT. Well, it turns out SS classes are REALLY expensive. At the time M wasn't on MA so we would have had to pay it all out of pocket. Our choice to keep him in OT was due to the fact that our insurance now paid at least a percentage of the OT.
Now if anyone with a young child just diagnosed and is suddenly not knowing where to turn and thinking, Oh no! I need to get my son OT and PT and ST and SS classes and.....! I would tell them, get him into OT first. Give him that base, that sense of "I can". It's a strength that will take my son so far in life. He may have to work twice as hard to do stuff, but he's got the will and the strength to do it.
And I think we owe it all to the OT. They gave him this belief in himself. And I am so grateful that my son received this gift.
Wednesday, May 21, 2008
Mean people
There are people out there who go out of their way to make my son feel bad about himself. I don't know why. These people are just plain crappy people who obviously hate themselves and look for vulnerable people to take their self-hatred out on.
So I build my son's defenses every chance I get. It seems like the best talks happen on the ride to swimming lessons every Wednesday night. The traffic is awful, we're sitting in the car for at least a half hour, and we're not really going anywhere very quickly, so we talk.
And tonight he brought up the evil bitch at his last daycare. The woman who called him "Special Ed" when there were no other adults around, and then told the manager when questioned that she was calling him "Special Friend" and he must have misunderstood.
I said to him, "you are in special ed, you know that, right?" and he said yes. Then he asked, so why was this woman mean for saying it to him?
Because, I told him, some people will say things to you because they want you to feel bad. She said it in a way that she was hoping you'd be sad about it.
It's complicated, but I explained it as best I could; people could say something to you like, "Oh, you're in special ed!" in a tone of voice like it was just an interesting fact about you. Then some people will say it like it's a bad thing, or they'll say you have Asperger's like it's a bad thing, and the only way they can make you feel bad about it is if you feel bad about yourself.
So I'm trying to explain to him, YOU know it's okay to be in special ed, right? YOU know there's nothing wrong with you - you have Asperger's, and all that means is your brain works differently than most other kids', but it doesn't make you bad or wrong. You know that, right?
And he tells me, of course I know that. And I believe him. For now.
But I wonder how long it will be before other kids' (and adults', which I shouldn't even have to worry about, but people sometimes suck),opinions of him matter more than what his mom and dad tell him. Right now he's in this happy little bubble we've constructed for him, and for the most part he feels safe and supported. When people do try to make him feel bad about himself, he seems to let it roll right off, but then he also is a kid who doesn't let on about what is going on in his head. So who knows?
Someday though, he will notice the differences more. I see them more, as his friends and classmates grow up with him. His differences are becoming more pronounced. Other kids are becoming more aware. Monster knows he's different but what about when he one day decides that being different really sucks?
These kids get anxious a lot. And they are prone to depression. Because they are so sensitive even while they are seemingly oblivious.
Monster has been having lots of nightmares these past few nights, bad days at school, and he is showing stress by doing things like asking hubby and I repeatedly what our names are. I am stressing myself over this because I don't know what's wrong. He had leg pains - maybe it's growing pains? I worry that someone is treating him badly and he isn't telling us. He had that one DCP who flicked him in the head and spanked him, and we didn't find out about it until months after M had been kicked out.
But then my stress helps feed his. I need to relax. But I worry so much about this kid. He's so vulnerable. I can't protect him forever (and obviously haven't even done the greatest job up to this point). I guess that's why I'm particularly stressed. Because I've already let my son down so many times. I can't stand the idea of this happening again and again. I do my best and it isn't good enough. People hurt my kid. And I hate it.
So I build my son's defenses every chance I get. It seems like the best talks happen on the ride to swimming lessons every Wednesday night. The traffic is awful, we're sitting in the car for at least a half hour, and we're not really going anywhere very quickly, so we talk.
And tonight he brought up the evil bitch at his last daycare. The woman who called him "Special Ed" when there were no other adults around, and then told the manager when questioned that she was calling him "Special Friend" and he must have misunderstood.
I said to him, "you are in special ed, you know that, right?" and he said yes. Then he asked, so why was this woman mean for saying it to him?
Because, I told him, some people will say things to you because they want you to feel bad. She said it in a way that she was hoping you'd be sad about it.
It's complicated, but I explained it as best I could; people could say something to you like, "Oh, you're in special ed!" in a tone of voice like it was just an interesting fact about you. Then some people will say it like it's a bad thing, or they'll say you have Asperger's like it's a bad thing, and the only way they can make you feel bad about it is if you feel bad about yourself.
So I'm trying to explain to him, YOU know it's okay to be in special ed, right? YOU know there's nothing wrong with you - you have Asperger's, and all that means is your brain works differently than most other kids', but it doesn't make you bad or wrong. You know that, right?
And he tells me, of course I know that. And I believe him. For now.
But I wonder how long it will be before other kids' (and adults', which I shouldn't even have to worry about, but people sometimes suck),opinions of him matter more than what his mom and dad tell him. Right now he's in this happy little bubble we've constructed for him, and for the most part he feels safe and supported. When people do try to make him feel bad about himself, he seems to let it roll right off, but then he also is a kid who doesn't let on about what is going on in his head. So who knows?
Someday though, he will notice the differences more. I see them more, as his friends and classmates grow up with him. His differences are becoming more pronounced. Other kids are becoming more aware. Monster knows he's different but what about when he one day decides that being different really sucks?
These kids get anxious a lot. And they are prone to depression. Because they are so sensitive even while they are seemingly oblivious.
Monster has been having lots of nightmares these past few nights, bad days at school, and he is showing stress by doing things like asking hubby and I repeatedly what our names are. I am stressing myself over this because I don't know what's wrong. He had leg pains - maybe it's growing pains? I worry that someone is treating him badly and he isn't telling us. He had that one DCP who flicked him in the head and spanked him, and we didn't find out about it until months after M had been kicked out.
But then my stress helps feed his. I need to relax. But I worry so much about this kid. He's so vulnerable. I can't protect him forever (and obviously haven't even done the greatest job up to this point). I guess that's why I'm particularly stressed. Because I've already let my son down so many times. I can't stand the idea of this happening again and again. I do my best and it isn't good enough. People hurt my kid. And I hate it.
Thursday, May 15, 2008
More about the after school fiasco
I've been trying to figure out what's going to happen next fall, since hubby's company is moving way south and he will not be able to get home in time to meet the bus come next fall. So I'm trying to pin these people down on something - ANYTHING. Here's my emails and the responses so far....
Hi Mrs.____, I am not sure if you are aware but Monster is now at ______ in a special ed class. I understand all but one of the special ed classes are based at ____ (as opposed to the one M used to go to). Does your After School Care program offer daycare for these special needs children at _______? Is there a chance that Monster could be included in the fall? We are set for the rest of this school year and the summer but we will need to have a place to put him come fall. I was just thinking, with all of those special needs kids over there, that there may be a special program I haven't been told of?
Thank you,
Monster’s Mom
ONE DAY LATER....
Hi Mrs. ____, I'm sorry to be rushing you, but my husband's boss is trying to pin him down on what his hours are going to be in the fall. The setup he has now where he can meet M's bus is temporary, and he will be able to switch his hours in the summer. What we need to know is, is he going to have to switch back next fall? It's very important that we know ASAP if there is a place for Monster or not, because my husband's job is at stake here. Please let me know today. And please - I don't need to meet with you on this. It should be a simple answer and something my husband can tell his boss right away.
Thank you,
Monster’s Mom
Hi, Monster’s Mom--Although there is an special education room at ______, The After School Care program doesn't have a program set up specifically for the children who receive services in the special ed room during the school day. You can sign Monster up for After School Care for next fall. At the end of the summer, we would need to meet to discuss what Monster's needs are going forward into the 2008-09 school year. That will give us all an opportunity to reconsider his needs and what reasonable accommodations can be made so Monster can be successful in After School Care at ______. Hope this helps.
Mrs. ______
Manager, Youth and Family Services Programs
City of _____________Community Education
Hi Mrs. _____,
I am curious what sort of accommodations you will be willing to make for Monster that you don't claim you've already tried for him? Because we were told this same thing last fall and then as you know he started getting written up almost as soon as he entered your program. Monster will not be different. After School Care couldn't handle him this year. I'd like to hear what sort of ideas they have to help Monster be successful next year?We can sit down and have a meeting and ASC will give us all of their good intentions but it's all hot air when they aren't willing to back them up. So - before I tell my husband everything is set for fall, please let me know how Monster will be handled more successfully this time around.
Thank you.
Monster’s Mom
Hi Mrs.____, I am not sure if you are aware but Monster is now at ______ in a special ed class. I understand all but one of the special ed classes are based at ____ (as opposed to the one M used to go to). Does your After School Care program offer daycare for these special needs children at _______? Is there a chance that Monster could be included in the fall? We are set for the rest of this school year and the summer but we will need to have a place to put him come fall. I was just thinking, with all of those special needs kids over there, that there may be a special program I haven't been told of?
Thank you,
Monster’s Mom
ONE DAY LATER....
Hi Mrs. ____, I'm sorry to be rushing you, but my husband's boss is trying to pin him down on what his hours are going to be in the fall. The setup he has now where he can meet M's bus is temporary, and he will be able to switch his hours in the summer. What we need to know is, is he going to have to switch back next fall? It's very important that we know ASAP if there is a place for Monster or not, because my husband's job is at stake here. Please let me know today. And please - I don't need to meet with you on this. It should be a simple answer and something my husband can tell his boss right away.
Thank you,
Monster’s Mom
Hi, Monster’s Mom--Although there is an special education room at ______, The After School Care program doesn't have a program set up specifically for the children who receive services in the special ed room during the school day. You can sign Monster up for After School Care for next fall. At the end of the summer, we would need to meet to discuss what Monster's needs are going forward into the 2008-09 school year. That will give us all an opportunity to reconsider his needs and what reasonable accommodations can be made so Monster can be successful in After School Care at ______. Hope this helps.
Mrs. ______
Manager, Youth and Family Services Programs
City of _____________Community Education
Hi Mrs. _____,
I am curious what sort of accommodations you will be willing to make for Monster that you don't claim you've already tried for him? Because we were told this same thing last fall and then as you know he started getting written up almost as soon as he entered your program. Monster will not be different. After School Care couldn't handle him this year. I'd like to hear what sort of ideas they have to help Monster be successful next year?We can sit down and have a meeting and ASC will give us all of their good intentions but it's all hot air when they aren't willing to back them up. So - before I tell my husband everything is set for fall, please let me know how Monster will be handled more successfully this time around.
Thank you.
Monster’s Mom
Wednesday, May 14, 2008
Birthday party invitations
It's one of those universal things that moms to ASD kids worry about. Party invitations. They seem to go out ot everyone but our kids. I've heard enough moms' stories to know that kids don't like to invite the "weird kid who hits/throws tantrums/talks about dinosaurs nonstop" to their parties.
So maybe this is why my heart skipped once when I saw the small white envelope in my son's backpack.
And then I thought, how stupid of me. This happens all the time.
Thank you notes and party invitations look exactly alike, size-wise.
Too many times I have pulled an envelope out of my son's backpack/cubby/folder and gotten that same little jump, only to open it and find a nice thank you note from a teacher or aide. Sweet, but disappointing.
Today though. Today was a real-life birthday card.
I asked Monster, "Who is A___?" and he said, "Oh, he's my friend!! He's in my homeroom class!"
And I raced to that phone and called and RSVP'ed before other parents had probably even found and opened their kids' envelope. I wonder if I sounded as foolishly overexcited as I felt?
Oh, my son has been invited to quite a few parties. But not from kids at daycare or school. This is the first. And I hope not the last. Because just because he got this one does not mean he's made it to the other side yet. But it's a start.
It's sad that I get so excited about something like this.
My son. Someone who knows him from school wants to have him at his party. This is wonderful.
So maybe this is why my heart skipped once when I saw the small white envelope in my son's backpack.
And then I thought, how stupid of me. This happens all the time.
Thank you notes and party invitations look exactly alike, size-wise.
Too many times I have pulled an envelope out of my son's backpack/cubby/folder and gotten that same little jump, only to open it and find a nice thank you note from a teacher or aide. Sweet, but disappointing.
Today though. Today was a real-life birthday card.
I asked Monster, "Who is A___?" and he said, "Oh, he's my friend!! He's in my homeroom class!"
And I raced to that phone and called and RSVP'ed before other parents had probably even found and opened their kids' envelope. I wonder if I sounded as foolishly overexcited as I felt?
Oh, my son has been invited to quite a few parties. But not from kids at daycare or school. This is the first. And I hope not the last. Because just because he got this one does not mean he's made it to the other side yet. But it's a start.
It's sad that I get so excited about something like this.
My son. Someone who knows him from school wants to have him at his party. This is wonderful.
Friday, May 9, 2008
A rough week
We have a back-and-forth notebook going on between Monster's teacher and me.
Monster has had a rough week. Today she wrote in his notebook that he hit another child. Then she noted on the edge of the paper, "This is the THIRD incident he has had with a peer this week!"
Maybe it's becaue I am sick today and feeling rotten, but this is really bothering me.
Why emphasize to me how badly my child is behaving? Why tell me he has hit THREE kids this week? What am I supposed to do?
He's in that class because he has aggression issues. I am aware of these issues. I've been dealing with them since my son was less than two years old. He gets aggressive, yes. I am well aware.
She thinks something is going on at home. What she doesn't understand about me - because she hasn't known me very long - is that I will tell her everything I know about why Monster may act up that day. I have a couple of times written to his old case worker; "Hubby and I had an argument last night, and M was pretty upet about it." I'm not afraid to tell them if our home life is going badly. Only, the trouble is, it isn't.
Part of me feels annoyed about this. I want to write back, "So what? That's what he's there for, right?" I mean, what else can they do to him? If they kick him out of there then they can pay to put him in some private school that can deal with him better.
I just get really disgusted with this constant need teachers seem to have to remind how awful my son can be. Do they think I am blind to this?
I don't need people to remind that this is the THIRD TIME my son hurt someone. This teacher writes to me every day. I know he's hit kids three times. Why reemphasize it? What's her point?
And where is the autism specialist, who was going to be RIGHT THERE, completely involved with this teacher because this teacher's specialty is not ASD, it's EBD. I was assured that Monster would still do wonderfully, though, because the autism specialist assured me she would work so closely.
Okay, I'm just venting. I don't know why this irritated me so much.
I will write a note to her for Monday. I will write, "I know he's being difficult, and I know it's frustrating. Please remember that my son cannot always control himself. He doesn't want to be bad."
Or maybe I won't. I just wish she knew.
Monster has had a rough week. Today she wrote in his notebook that he hit another child. Then she noted on the edge of the paper, "This is the THIRD incident he has had with a peer this week!"
Maybe it's becaue I am sick today and feeling rotten, but this is really bothering me.
Why emphasize to me how badly my child is behaving? Why tell me he has hit THREE kids this week? What am I supposed to do?
He's in that class because he has aggression issues. I am aware of these issues. I've been dealing with them since my son was less than two years old. He gets aggressive, yes. I am well aware.
She thinks something is going on at home. What she doesn't understand about me - because she hasn't known me very long - is that I will tell her everything I know about why Monster may act up that day. I have a couple of times written to his old case worker; "Hubby and I had an argument last night, and M was pretty upet about it." I'm not afraid to tell them if our home life is going badly. Only, the trouble is, it isn't.
Part of me feels annoyed about this. I want to write back, "So what? That's what he's there for, right?" I mean, what else can they do to him? If they kick him out of there then they can pay to put him in some private school that can deal with him better.
I just get really disgusted with this constant need teachers seem to have to remind how awful my son can be. Do they think I am blind to this?
I don't need people to remind that this is the THIRD TIME my son hurt someone. This teacher writes to me every day. I know he's hit kids three times. Why reemphasize it? What's her point?
And where is the autism specialist, who was going to be RIGHT THERE, completely involved with this teacher because this teacher's specialty is not ASD, it's EBD. I was assured that Monster would still do wonderfully, though, because the autism specialist assured me she would work so closely.
Okay, I'm just venting. I don't know why this irritated me so much.
I will write a note to her for Monday. I will write, "I know he's being difficult, and I know it's frustrating. Please remember that my son cannot always control himself. He doesn't want to be bad."
Or maybe I won't. I just wish she knew.
Wednesday, May 7, 2008
Is something going on at home?
I wish someone had given me a hundred dollar bill every time a teacher or daycare worker has asked me this question. The implication is explicit - what are you doing to this kid to make him behave this way?
It feels like blame to me. Maybe because I've been asked it so often, and before Monster's diagnosis I took it to heart. What WERE we doing wrong at home to cause Monster to go berserk when he was in daycare/school?
And to be asked this now, by the teacher of the EBD class (Emotional/Behaviorally Disturbed, I think?) they stuck him in, well, GEEZ!! Even YOU think I'm screwing up my kid somehow?
Oh, it's also my fault that my son is an only child because apparently THIS explains some of his bad behaviors. Which makes no sense to me because I know lots of moms to onlies with wonderful, well-behaved children.
So. What is going on at home?
Weekends, Hubby or I take Monster someplace fun, or he plays outside with his friends down the street, or we invite his Aspie friend over to play Lego with him. We putz around the house. Monster plays on the computer and watches TV (A-HA!!!). His bedtime is 8:30 on Friday and Saturday nights. Monday through Thursday it's 8. One night every weekend Monster gets to fall asleep in bed with me.
Hubby and I rarely fight. We don't spank Monster. We barely even have to punish him, because at home, with our little family, he's usually fine. He gets worked up when hubby and I have the rare argument. Then when we're done arguing we both talk to M to tell him, even when we fight we love each other and we NEVER stop loving you.
We don't drink, or smoke. We actually live very boring lives. I pop pills to help me sleep, but Monster is asleep when I am Under the Influence. And I take antidepressants to keep myself from jumping off something high.
So yes, dear teacher, there IS stuff "going on" at home. It's us living our lives. Are we screwing up our kid by simply existing? Maybe. Maybe Cartoon Network for an hour every night is not good for him. Maybe letting him explode Lego bodies on Star Wars Lego II on his Nintendo makes him evil. Maybe it's the chocolate treats he gets every night during his TV wind-down time.
Okay. So I yell at Monster. More than I care to admit. But he frustrates the SHIT out of me (excuse my French). So if anything is screwing up my son it's that sometimes he pushes me to my limit and I yell. I dare anyone to live with this kid for a month nonstop and NOT yell at him. And I feel horribly guilty about it. Because I love this kid to pieces and I yell at him and hurt his feelings.
So maybe I'll tell his teacher, yeah, I yell at him. Mia culpa. It's always the parents' fault, and more often than not the mother is more to blame than the father.
Just stop asking me if anything is going on at home. My guess is that my mother-in-law's death in February is just now getting through to him, because suddenly he is obsessing over death and wondering when we will die and where we go. And he asks why his grandma died. So maybe it took him over two months for this to sink in, since he barely knew his grandma (she lives 2,000 miles away and I think we visited with Monster three times). Or maybe he just has his good days and his bad days like we all do. He's a kid. He's allowed to be crabby. Quit asking me what I am doing to cause it.
It feels like blame to me. Maybe because I've been asked it so often, and before Monster's diagnosis I took it to heart. What WERE we doing wrong at home to cause Monster to go berserk when he was in daycare/school?
And to be asked this now, by the teacher of the EBD class (Emotional/Behaviorally Disturbed, I think?) they stuck him in, well, GEEZ!! Even YOU think I'm screwing up my kid somehow?
Oh, it's also my fault that my son is an only child because apparently THIS explains some of his bad behaviors. Which makes no sense to me because I know lots of moms to onlies with wonderful, well-behaved children.
So. What is going on at home?
Weekends, Hubby or I take Monster someplace fun, or he plays outside with his friends down the street, or we invite his Aspie friend over to play Lego with him. We putz around the house. Monster plays on the computer and watches TV (A-HA!!!). His bedtime is 8:30 on Friday and Saturday nights. Monday through Thursday it's 8. One night every weekend Monster gets to fall asleep in bed with me.
Hubby and I rarely fight. We don't spank Monster. We barely even have to punish him, because at home, with our little family, he's usually fine. He gets worked up when hubby and I have the rare argument. Then when we're done arguing we both talk to M to tell him, even when we fight we love each other and we NEVER stop loving you.
We don't drink, or smoke. We actually live very boring lives. I pop pills to help me sleep, but Monster is asleep when I am Under the Influence. And I take antidepressants to keep myself from jumping off something high.
So yes, dear teacher, there IS stuff "going on" at home. It's us living our lives. Are we screwing up our kid by simply existing? Maybe. Maybe Cartoon Network for an hour every night is not good for him. Maybe letting him explode Lego bodies on Star Wars Lego II on his Nintendo makes him evil. Maybe it's the chocolate treats he gets every night during his TV wind-down time.
Okay. So I yell at Monster. More than I care to admit. But he frustrates the SHIT out of me (excuse my French). So if anything is screwing up my son it's that sometimes he pushes me to my limit and I yell. I dare anyone to live with this kid for a month nonstop and NOT yell at him. And I feel horribly guilty about it. Because I love this kid to pieces and I yell at him and hurt his feelings.
So maybe I'll tell his teacher, yeah, I yell at him. Mia culpa. It's always the parents' fault, and more often than not the mother is more to blame than the father.
Just stop asking me if anything is going on at home. My guess is that my mother-in-law's death in February is just now getting through to him, because suddenly he is obsessing over death and wondering when we will die and where we go. And he asks why his grandma died. So maybe it took him over two months for this to sink in, since he barely knew his grandma (she lives 2,000 miles away and I think we visited with Monster three times). Or maybe he just has his good days and his bad days like we all do. He's a kid. He's allowed to be crabby. Quit asking me what I am doing to cause it.
Tuesday, May 6, 2008
Guilt
Motherhood just naturally comes with guilt. Every mom second-guesses herself, beats herself up when her kid gets hurt, spends her nights awake mulling over the should-have-dones and should-not-have-dones. I guess it's part of momhood.
So I don't claim to understand all mom guilt. But I understand my own.
I didn't appreciate the good points about my son until he got diagnosed at 4. I just didn't. I spent years blaming myelf, blaming Monster, blaming Monster's daycares and schools, for all of the troubles. But mostly I blamed myself. No good mother would have a child who acted the way mine did. What was I doing wrong?
From the time my son was two we were told by daycare workers (whom we mistakenly assumed were licensed in child care) that we needed to punish my child to teach him. Bad day at daycare? No treats, no TV, no computer. Of course Monster spent many evenings crying because once again his treats and TV were being taken from him.
We were punishing my child for stuff he had no control over. We didn't know it at the time, but it doesn't stop the guilt. After all, I contributed to my son's sense of self - his idea that he was a bad kid who could not be good no matter how hard he tried.
And placing him into one daycare after another just added to his feelings about himself as a bad kid who couldn't do anything right.
And during all of this I wasn't appreciating his sweetness, his goodness, his kindness, his loving heart. I only saw the bad kid I couldn't control.
The diagnosis was a blessing. Once I got a reason for M's behavior I was able to stop blaming everyone and simply focus on the wonderful parts of my son. I wish had had him diagnosed a year earlier, when I was first hearing hints about 'that word' - Asperger's. I let people talk me out of it - if he had it, he wouldn't want to have friends. If he had it, he wouldn't let you hold him. And I listened for another year, not wanting to label my son, wanting to pretend that everything was fine and I just needed the secret cure.
Now I feel that I lost time when I was mostly angry with Monster and myself, and I could have been loving him and telling him what a good, smart, wonderful boy he was.
I can't change the past. But if anyone out there has a toddler who gets kicked out of daycares, who seems to act badly no matter what you try, think about getting him/her tested.
In the end, the diagnosis doesn't change your child. It changes the way you see your child. And that makes all the difference in the world.
So I don't claim to understand all mom guilt. But I understand my own.
I didn't appreciate the good points about my son until he got diagnosed at 4. I just didn't. I spent years blaming myelf, blaming Monster, blaming Monster's daycares and schools, for all of the troubles. But mostly I blamed myself. No good mother would have a child who acted the way mine did. What was I doing wrong?
From the time my son was two we were told by daycare workers (whom we mistakenly assumed were licensed in child care) that we needed to punish my child to teach him. Bad day at daycare? No treats, no TV, no computer. Of course Monster spent many evenings crying because once again his treats and TV were being taken from him.
We were punishing my child for stuff he had no control over. We didn't know it at the time, but it doesn't stop the guilt. After all, I contributed to my son's sense of self - his idea that he was a bad kid who could not be good no matter how hard he tried.
And placing him into one daycare after another just added to his feelings about himself as a bad kid who couldn't do anything right.
And during all of this I wasn't appreciating his sweetness, his goodness, his kindness, his loving heart. I only saw the bad kid I couldn't control.
The diagnosis was a blessing. Once I got a reason for M's behavior I was able to stop blaming everyone and simply focus on the wonderful parts of my son. I wish had had him diagnosed a year earlier, when I was first hearing hints about 'that word' - Asperger's. I let people talk me out of it - if he had it, he wouldn't want to have friends. If he had it, he wouldn't let you hold him. And I listened for another year, not wanting to label my son, wanting to pretend that everything was fine and I just needed the secret cure.
Now I feel that I lost time when I was mostly angry with Monster and myself, and I could have been loving him and telling him what a good, smart, wonderful boy he was.
I can't change the past. But if anyone out there has a toddler who gets kicked out of daycares, who seems to act badly no matter what you try, think about getting him/her tested.
In the end, the diagnosis doesn't change your child. It changes the way you see your child. And that makes all the difference in the world.
Sunday, May 4, 2008
Books that I love
These books have all changed me and my way of looking at autism and Asperger's with new eyes. There are so many books out there and I have read maybe 50, and these are the ones that stood out for me.
This one is for my son.
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism
http://www.amazon.com/Utterly-Unique-Celebrating-Strengths-High-Functioning/dp/1931282897/ref=sr_1_24?ie=UTF8&s=books&qid=1209926406&sr=1-24
Thinking in Pictures, Expanded Edition: My Life with Autism
http://www.amazon.com/Thinking-Pictures-Expanded-Life-Autism/dp/0307275655/ref=sr_1_44?ie=UTF8&s=books&qid=1209926600&sr=1-44
This is one my son's school uses with him successfully
When My Worries Get Too Big! A Relaxation Book for Children Who Live with Anxiety
http://www.amazon.com/When-Worries-Relaxation-Children-Anxiety/dp/1931282927/ref=sr_1_61_s9_rk?ie=UTF8&s=books&s9r=8a1080b6124c47ff0112b405bc170f8a&itemPosition=61&qid=1209926716&sr=1-61
Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for Those Who Care for Children with Disabilities
http://www.amazon.com/Chicken-Soup-Soul-Understanding-Disabilities/dp/0757306209/ref=sr_1_81?ie=UTF8&s=books&qid=1209926806&sr=1-81
Look Me in the Eye: My Life with Asperger's
http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987/ref=sr_1_84?ie=UTF8&s=books&qid=1209926806&sr=1-84
Another one for my son - this was sent to me by a very lovely friend.
All Cats Have Asperger Syndrome
http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814/ref=sr_1_91?ie=UTF8&s=books&qid=1209926961&sr=1-91
Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, And Professionals Share Their Wisdom
http://www.amazon.com/Voices-Spectrum-Grandparents-Siblings-Professionals/dp/1843107864/ref=sr_1_95_s9_rk?ie=UTF8&s=books&s9r=8a02b54114f36e0501155121ee7a0c4b&itemPosition=95&qid=1209926961&sr=1-95
Another wonderful book Monster's school is using with him
Incredible 5-Point Scale ¿ Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses
http://www.amazon.com/Incredible-Assisting-Understanding-Interactions-Controlling/dp/1931282528/ref=sr_1_134?ie=UTF8&s=books&qid=1209927194&sr=1-134
I highly recommend this one - it gave me a whole new mindset about autism
Unstrange Minds: Remapping the World of Autism
http://www.amazon.com/Unstrange-Minds-Remapping-World-Autism/dp/0465027644/ref=sr_1_140?ie=UTF8&s=books&qid=1209927194&sr=1-140
The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs
http://www.amazon.com/Elephant-Playroom-Intimately-Extraordinary-Heartbreaking/dp/B00149NX8C/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1209927525&sr=1-1
Another life-changing book for me
Not Even Wrong: A Father's Journey into the Lost History of Autism
http://www.amazon.com/Not-Even-Wrong-Fathers-Journey/dp/1582344787/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1209927617&sr=1-2
The only fiction book on this list
Daniel Isn't Talking
http://www.amazon.com/Daniel-Isnt-Talking-Marti-Leimbach/dp/0307275728/ref=sr_1_1?ie=UTF8&s=books&qid=1209927688&sr=1-1
Martian in the Playground: Understanding the Schoolchild with Asperger's Syndrome
http://www.amazon.com/Martian-Playground-Understanding-Schoolchild-Aspergers/dp/1873942087/ref=sr_1_1?ie=UTF8&s=books&qid=1209927764&sr=1-1
To note: None of these books are how-to books for parents. Not that they are all bad, only that I have run into the same problem with these books as I have with regular parenting books - these books for the most part do not apply to my son. ASD is so diverse, and even Asperger's children are such completely unique individuals regardless of this shared label, that these books feel like they don't "get" my kid.
All of the above books are real stories from real parents "in the trenches", except "Daniel Isn't Talking" which feels as if the writer has actually experienced autism enough in her life that her accounts are accurate.
The two I mention as "life-changing" for me were ones that remapped the way I saw autism. They gave me understanding of the history of autism and the types of people over time who were autistic and how it affected their lives. I was amazed by both of these books. Both authors did so much research, simply out of a love for their own autistic children and their own needs to research its history, and share it in such a way that is almost mermerizing.
The Elephant in the Playroom is an amazing books for parents with a new diagnosis. The need to feel understood and not alone is a huge one for us parents of special needs kids. This book will give the reader the knowledge that not only is she not alone, but she will survive this all and will not only survive but triumph. Very uplifting.
Anyhow, that's my list. I'll add to it as I read more. If you are interested in reading about Asperger's and ASD I would highly recommend any of the above books. Don't worry so much about the ones that promise to cure your child or help you fix their behavior. If your child is like mine, his behavior needs to be fixed in school (where the misbehaving happens) and not so much at home, where usually he is simply being a snotty 6-year-old with an attitude.
Happy reading!!
This one is for my son.
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism
http://www.amazon.com/Utterly-Unique-Celebrating-Strengths-High-Functioning/dp/1931282897/ref=sr_1_24?ie=UTF8&s=books&qid=1209926406&sr=1-24
Thinking in Pictures, Expanded Edition: My Life with Autism
http://www.amazon.com/Thinking-Pictures-Expanded-Life-Autism/dp/0307275655/ref=sr_1_44?ie=UTF8&s=books&qid=1209926600&sr=1-44
This is one my son's school uses with him successfully
When My Worries Get Too Big! A Relaxation Book for Children Who Live with Anxiety
http://www.amazon.com/When-Worries-Relaxation-Children-Anxiety/dp/1931282927/ref=sr_1_61_s9_rk?ie=UTF8&s=books&s9r=8a1080b6124c47ff0112b405bc170f8a&itemPosition=61&qid=1209926716&sr=1-61
Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for Those Who Care for Children with Disabilities
http://www.amazon.com/Chicken-Soup-Soul-Understanding-Disabilities/dp/0757306209/ref=sr_1_81?ie=UTF8&s=books&qid=1209926806&sr=1-81
Look Me in the Eye: My Life with Asperger's
http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987/ref=sr_1_84?ie=UTF8&s=books&qid=1209926806&sr=1-84
Another one for my son - this was sent to me by a very lovely friend.
All Cats Have Asperger Syndrome
http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814/ref=sr_1_91?ie=UTF8&s=books&qid=1209926961&sr=1-91
Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, And Professionals Share Their Wisdom
http://www.amazon.com/Voices-Spectrum-Grandparents-Siblings-Professionals/dp/1843107864/ref=sr_1_95_s9_rk?ie=UTF8&s=books&s9r=8a02b54114f36e0501155121ee7a0c4b&itemPosition=95&qid=1209926961&sr=1-95
Another wonderful book Monster's school is using with him
Incredible 5-Point Scale ¿ Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses
http://www.amazon.com/Incredible-Assisting-Understanding-Interactions-Controlling/dp/1931282528/ref=sr_1_134?ie=UTF8&s=books&qid=1209927194&sr=1-134
I highly recommend this one - it gave me a whole new mindset about autism
Unstrange Minds: Remapping the World of Autism
http://www.amazon.com/Unstrange-Minds-Remapping-World-Autism/dp/0465027644/ref=sr_1_140?ie=UTF8&s=books&qid=1209927194&sr=1-140
The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs
http://www.amazon.com/Elephant-Playroom-Intimately-Extraordinary-Heartbreaking/dp/B00149NX8C/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1209927525&sr=1-1
Another life-changing book for me
Not Even Wrong: A Father's Journey into the Lost History of Autism
http://www.amazon.com/Not-Even-Wrong-Fathers-Journey/dp/1582344787/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1209927617&sr=1-2
The only fiction book on this list
Daniel Isn't Talking
http://www.amazon.com/Daniel-Isnt-Talking-Marti-Leimbach/dp/0307275728/ref=sr_1_1?ie=UTF8&s=books&qid=1209927688&sr=1-1
Martian in the Playground: Understanding the Schoolchild with Asperger's Syndrome
http://www.amazon.com/Martian-Playground-Understanding-Schoolchild-Aspergers/dp/1873942087/ref=sr_1_1?ie=UTF8&s=books&qid=1209927764&sr=1-1
To note: None of these books are how-to books for parents. Not that they are all bad, only that I have run into the same problem with these books as I have with regular parenting books - these books for the most part do not apply to my son. ASD is so diverse, and even Asperger's children are such completely unique individuals regardless of this shared label, that these books feel like they don't "get" my kid.
All of the above books are real stories from real parents "in the trenches", except "Daniel Isn't Talking" which feels as if the writer has actually experienced autism enough in her life that her accounts are accurate.
The two I mention as "life-changing" for me were ones that remapped the way I saw autism. They gave me understanding of the history of autism and the types of people over time who were autistic and how it affected their lives. I was amazed by both of these books. Both authors did so much research, simply out of a love for their own autistic children and their own needs to research its history, and share it in such a way that is almost mermerizing.
The Elephant in the Playroom is an amazing books for parents with a new diagnosis. The need to feel understood and not alone is a huge one for us parents of special needs kids. This book will give the reader the knowledge that not only is she not alone, but she will survive this all and will not only survive but triumph. Very uplifting.
Anyhow, that's my list. I'll add to it as I read more. If you are interested in reading about Asperger's and ASD I would highly recommend any of the above books. Don't worry so much about the ones that promise to cure your child or help you fix their behavior. If your child is like mine, his behavior needs to be fixed in school (where the misbehaving happens) and not so much at home, where usually he is simply being a snotty 6-year-old with an attitude.
Happy reading!!
Courage Part II
I have been a cowardly person for most of my life. Whatever anger I felt I kept deep inside of me where it morphed itself into feelings of depression and helplessness. I didn't know, really, what courage would feel like inside of me, and had no idea how to find out.
I've told the story about the anger that arrived the day my son was born. Raw, animalistic, powerful. And for once it aimed itself outward toward the world, instead of settling itself inside of me. It was at once frightening and thrilling. To know I held a power within me that could be used to protect and later advocate for my son felt like a true gift. And it was.
What happened, though, when the anger subsided (as it has over the years. Just like any other strong emotion, it's not one a healthy mind and/or body can keep up for extended periods of time)? That is when something even stronger, even more powerful, began to show itself, as something new that had been growing slowly within me, hidden by my anger but growing nonetheless, emerged.
Courage.
I have not even in my life been courageous before. This is yet another of the countless gifts that being a parent has brought me. And it wasn't like I was handed this gift; I worked for it. I fought and feared and cried and screamed and somehow, I fired within me this hard, shining, priceless jewel of courage.
What does this mean for me? That although I still expect the worst from the future sometimes and still lack hope that everything will be well, I do not fear it. I have found a strength inside of me that tells me I can handle whatever comes my way.
I walk into these large meetings where my son's future in school is discussed, and I take the lead. I ask questions and expect to be treated equally and not talked down to, as I was in the beginning because I was a beginner with no knowledge, and didn't know that I was as much an expert on my child as any of these other people, and that my input mattered and counted.
I am no longer afraid to ask for anything that I think may help my son. I used to hate picking up the phone and talking to people. But I don't hate to do it now when it's regarding my son's agenda. I call these people up and tell them what I want.
Having courage also means sometimes accepting that you may need to try something for your child that scares you (and not him because you will never let on that you are afraid!). If you know the benefits for him are in something that seems a little "out there", you give it a shot, knowing you will protect your child through it all and that you have the power to put your foot down and say, enough, if it starts to get scary/painful for your child and you don't see the fear/pain as necessary for his growth.
Allowing my child to sometimes feel that fear and pain is a big one for me. I don't want to see my child hurting ever. But I know that pain sometimes helps growth. I know because I am new to this too. I may have forgotten how pain helped me grow in my childhood, but I recently had to go through the pain that brought me to this point. And I know my son must sometimes experience some pain. I need to give him credit that he can handle a bit now, a bit more as he gets older. I need to allow him to find his own shining jewel inside of himself. The constant monitoring of "is this too much/not enough?" will get old, I'm sure. But I will always do it.
What else does courage feel like? Strength. A willingness to be myself without worrying what others think of me. A willingness to stand up for my child without caring how others see me. A willingness to allow my child to be himself without caring that I am being watched and judged and found inadequate by other parents.
And courage forced me to look for a job that will someday hopefully turn into a telecommute job so we never have to go through the nightmare of having Monster kicked out of a daycare ever again.
It's going to be a long hard road with Monster. I feel ready. I don't know what lies ahead, but te gifts he has given me so far will bring me through. And maybe there are more gifts coming. You just never know what's out there.
I've told the story about the anger that arrived the day my son was born. Raw, animalistic, powerful. And for once it aimed itself outward toward the world, instead of settling itself inside of me. It was at once frightening and thrilling. To know I held a power within me that could be used to protect and later advocate for my son felt like a true gift. And it was.
What happened, though, when the anger subsided (as it has over the years. Just like any other strong emotion, it's not one a healthy mind and/or body can keep up for extended periods of time)? That is when something even stronger, even more powerful, began to show itself, as something new that had been growing slowly within me, hidden by my anger but growing nonetheless, emerged.
Courage.
I have not even in my life been courageous before. This is yet another of the countless gifts that being a parent has brought me. And it wasn't like I was handed this gift; I worked for it. I fought and feared and cried and screamed and somehow, I fired within me this hard, shining, priceless jewel of courage.
What does this mean for me? That although I still expect the worst from the future sometimes and still lack hope that everything will be well, I do not fear it. I have found a strength inside of me that tells me I can handle whatever comes my way.
I walk into these large meetings where my son's future in school is discussed, and I take the lead. I ask questions and expect to be treated equally and not talked down to, as I was in the beginning because I was a beginner with no knowledge, and didn't know that I was as much an expert on my child as any of these other people, and that my input mattered and counted.
I am no longer afraid to ask for anything that I think may help my son. I used to hate picking up the phone and talking to people. But I don't hate to do it now when it's regarding my son's agenda. I call these people up and tell them what I want.
Having courage also means sometimes accepting that you may need to try something for your child that scares you (and not him because you will never let on that you are afraid!). If you know the benefits for him are in something that seems a little "out there", you give it a shot, knowing you will protect your child through it all and that you have the power to put your foot down and say, enough, if it starts to get scary/painful for your child and you don't see the fear/pain as necessary for his growth.
Allowing my child to sometimes feel that fear and pain is a big one for me. I don't want to see my child hurting ever. But I know that pain sometimes helps growth. I know because I am new to this too. I may have forgotten how pain helped me grow in my childhood, but I recently had to go through the pain that brought me to this point. And I know my son must sometimes experience some pain. I need to give him credit that he can handle a bit now, a bit more as he gets older. I need to allow him to find his own shining jewel inside of himself. The constant monitoring of "is this too much/not enough?" will get old, I'm sure. But I will always do it.
What else does courage feel like? Strength. A willingness to be myself without worrying what others think of me. A willingness to stand up for my child without caring how others see me. A willingness to allow my child to be himself without caring that I am being watched and judged and found inadequate by other parents.
And courage forced me to look for a job that will someday hopefully turn into a telecommute job so we never have to go through the nightmare of having Monster kicked out of a daycare ever again.
It's going to be a long hard road with Monster. I feel ready. I don't know what lies ahead, but te gifts he has given me so far will bring me through. And maybe there are more gifts coming. You just never know what's out there.
Saturday, May 3, 2008
Summer - dare I hope it's coming together?
This may work. It has to work.
Okay - our parental fees for Medical Assistance are about to double for some odd reason. But still. This is what we have worked out for the summer, and it is all coming out of MA. So it's paying for itself.
We have a PCA. She is our teenage neighbor and she has been approved.
The place that manages our PCA hours also has a day care program that can be paid for using our PCA hours, and Monster has been accepted into that. We can put him in all five week days, one, drop in, whatever. This has been approved.
Monster has been accepted into a treatment program for kids with behavioral issues. Once again, I find myself arguing that Monster may not fit into a program like this, because the other children are, for the most part, children who have behavior issues due to neglect, bad home life, trauma, etc. Again, NOT my son, but his classroom at school seems to be working for him, and they recommended this other place, and Monster was accepted.
Small side note. I had to sign a form saying it was okay to place my child in a locked room if he got out of control.
I hate the idea of this, although they already do this at school too.
I hate that this is something that will happen to my son.
But I don't know how to get around it, except to quit my job and homeschool the kid. And well, we can't do that.
Hubby says Monster will be fine. It's a calming room. It's not a prison cell. And I picture my child in 10 years and wonder, if I allow this now, will they give him enough control over himself that he doesn't end up in a REAL cell, in jail or juvenile hall?
I just hate that this is stuff I even need to consider.
So this is the deal. If it works.
And I just have to say, this all fell into place after almost a year of frantically running around like crazy, and oftentimes wanting to give up because nothing was fitting. Nothing seemed to be happening. But then suddenly, everything seemed to line up and come together, and I love to see my hard work actually achieve something for Monster that is actually a good setup, not just OMG we have to find something we'll take anything! sort of thing.
Anyhow. Setup.
PCA (We'll call her Katie) will watch Monster 20-25 hours a week, and it will be broken down like this.
At the moment there is not an opening for Monster yet at the behavior program. Until there is, once school is out, Katie will watch Monster 2-3 days a week, and he will go to the PCA management program the other days.
When the behavior program gets a space, Monster will be watched by Katie 5 hours each morning M-Th and be picked up by the van which will deliver him to his afternoon program and bring him home.
Fridays he will go to the PCA management place.
This can work. And Monster will get lots of positive attention from Katie and lots of valuable skills from the two programs.
And even though the economy is tanking, I am allowing myself to look into the future, next September, when I will have put in enough time at my new job (did I mention I have a new job? Same co, just a promotion and a job with opportunity to telecommute) to ask for a telecommute position, I can put in 7 hours a day in between pickups at school and dropoffs from the afternoon program (which continues into the school year) and work 4 hours each Saturday.
This can work.
I can't help but be hopeful. Which sort of worries me, because I know things can't come together this perfectly without a glitch.
But for now, I am just happy that I have managed to pull this off.
Okay - our parental fees for Medical Assistance are about to double for some odd reason. But still. This is what we have worked out for the summer, and it is all coming out of MA. So it's paying for itself.
We have a PCA. She is our teenage neighbor and she has been approved.
The place that manages our PCA hours also has a day care program that can be paid for using our PCA hours, and Monster has been accepted into that. We can put him in all five week days, one, drop in, whatever. This has been approved.
Monster has been accepted into a treatment program for kids with behavioral issues. Once again, I find myself arguing that Monster may not fit into a program like this, because the other children are, for the most part, children who have behavior issues due to neglect, bad home life, trauma, etc. Again, NOT my son, but his classroom at school seems to be working for him, and they recommended this other place, and Monster was accepted.
Small side note. I had to sign a form saying it was okay to place my child in a locked room if he got out of control.
I hate the idea of this, although they already do this at school too.
I hate that this is something that will happen to my son.
But I don't know how to get around it, except to quit my job and homeschool the kid. And well, we can't do that.
Hubby says Monster will be fine. It's a calming room. It's not a prison cell. And I picture my child in 10 years and wonder, if I allow this now, will they give him enough control over himself that he doesn't end up in a REAL cell, in jail or juvenile hall?
I just hate that this is stuff I even need to consider.
So this is the deal. If it works.
And I just have to say, this all fell into place after almost a year of frantically running around like crazy, and oftentimes wanting to give up because nothing was fitting. Nothing seemed to be happening. But then suddenly, everything seemed to line up and come together, and I love to see my hard work actually achieve something for Monster that is actually a good setup, not just OMG we have to find something we'll take anything! sort of thing.
Anyhow. Setup.
PCA (We'll call her Katie) will watch Monster 20-25 hours a week, and it will be broken down like this.
At the moment there is not an opening for Monster yet at the behavior program. Until there is, once school is out, Katie will watch Monster 2-3 days a week, and he will go to the PCA management program the other days.
When the behavior program gets a space, Monster will be watched by Katie 5 hours each morning M-Th and be picked up by the van which will deliver him to his afternoon program and bring him home.
Fridays he will go to the PCA management place.
This can work. And Monster will get lots of positive attention from Katie and lots of valuable skills from the two programs.
And even though the economy is tanking, I am allowing myself to look into the future, next September, when I will have put in enough time at my new job (did I mention I have a new job? Same co, just a promotion and a job with opportunity to telecommute) to ask for a telecommute position, I can put in 7 hours a day in between pickups at school and dropoffs from the afternoon program (which continues into the school year) and work 4 hours each Saturday.
This can work.
I can't help but be hopeful. Which sort of worries me, because I know things can't come together this perfectly without a glitch.
But for now, I am just happy that I have managed to pull this off.
Shields
A whole day and night to myself.
Hubby took Monster cabin camping today and they're coming home tomorrow. I watched three tear-jerker movies today and got some paperwork done for all of Monster's new summer schools.
There is a certain sort of energy that Monster carries with him. It's electrical, and you can sense it whenever he's in the house. I find myself mentally engaging my "energy shield" on my way home after work or when he's been gone and is on his way home.
I'm not shutting him out. It's more like I am holding in some of my own energy because if I don't he drains me completely.
It's not intentional. I don't blame him for it. It is what it is. I don't know if it will change as he gets older.
But letting down my shield for a full 24 hours is feeling pretty good.
Hubby took Monster cabin camping today and they're coming home tomorrow. I watched three tear-jerker movies today and got some paperwork done for all of Monster's new summer schools.
There is a certain sort of energy that Monster carries with him. It's electrical, and you can sense it whenever he's in the house. I find myself mentally engaging my "energy shield" on my way home after work or when he's been gone and is on his way home.
I'm not shutting him out. It's more like I am holding in some of my own energy because if I don't he drains me completely.
It's not intentional. I don't blame him for it. It is what it is. I don't know if it will change as he gets older.
But letting down my shield for a full 24 hours is feeling pretty good.
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