Fighting fire with fire

I've been feeling crappy today. The festering wound on my leg that split open today can't be re-stitched. I need to stuff it with saline-soaked gauze every day instead. And it feels awful and I feel awful and Monster has replaced me with his PCA, B.

So Monster got off the van today and came running up and gave me a hug. Came into the house bubbling over with stories and seeming happy enough. Then he asked, "Can I call my friends (the rotten kids down the street who I wish I could keep Monster away from, but I really am just glad he has friends at this point in time)?"

I said no, it's swimming tonight.

And he burst into tears.

Not the fake whiney ones that he has perfected. These were real, heartbroken tears of a kid who has had a rough day and couldn't take one little "no". His little heart was breaking.

And then, without even knowing I was going to do it, I burst into tears right there along with him. The two of us sobbed together, he for himself, me for myself (and maybe a little bit for him...), just sitting there together on the love seat, holding each other, bawling our eyes out.

Monster stopped crying first, and seemed puzzled that Mommy was sitting there crying and not being annoyed with him for HIS crying.

He ended up comforting ME, which is so back-assward in so many ways. It's not his job to comfort me. But he did. He was so sweet.

Then he whined all the way to swimming lessons.

And I got annoyed.

And everything was right in the universe again.

PCA love

Monster loves his PCA. LOVES her. Did I mention that his PCA, B, is 16 and lives right down the street from us? We've known her since she was a baby. I was thrilled when she agreed to watch Monster this summer.
Anyhow, she watches him until he gets picked up by the van for the day treatment program, right after lunch.
I had to come home today in the morning. the cut from my surgery popped open when I got out of my car at work and I went to urgent care and they wouldn't fix it. They told me I had to go to the surgery dept. They made an appointment for later that morning. My boss told me to stay home and take care of my leg, so I went home until it was time to see the surgeon.

My son basically refused to acknowledge me in front of B. He wanted nothing to do with me. I had become Invisible Mom. It was one of those moments when, as a mom, you think to yourself, well, I guess I'm totally replaceable after all.

Hubby said, well, look at it this way. B never tells Monster no. All she does is play with him. She's young - she has energy and plays with him nonstop. She doesn't tell him, not now, I need to do laundry or wash dishes.

I went into the bedroom and hid out until my appointment. I went downstairs to say goodbye and Monster would barely let me give him a hug and he refused to let me kiss him.

How funny is it that I was worried that, if I came home early, Monster would pester me nonstop and ignore B? All he wanted was for me to be gone so he and B could keep on playing Nintendo.

Sigh.

Feeling guilty

Monster has been in OT since he was about 3. It has helped him so much and I wrote once how OT gave my son a good attitude about himself - that he could do anything if he tried hard enough.

So why did I pull him out of OT tonight?

We couldn't go on like this.

The dayschool means M doesn't get home until 4:30. OT is at 5. So we rush rush rush and M cries and whines and complains that he doesn't get any rest time. And he doesn't. And I feel awful rushing him after he's been at day treatment.

Today I had my weekly phone meeting with Monster's counselor from the day treatment program. She said, "of course he's crabby and tired in the evenings. We wear him out here. We don't let anything slide; we hold him accountable for everything. It's very intensive.

So I'm sitting there in the waiting room tonight while M is doing his OT and I'm thinking about all of this, and about how the counselor told me it will just get worse when school starts in a month because he will be expected to behave well for 8 hours instead of 4, and I thought, that's it. We're done.

Not done for good, done. Done until the day treatment program is over.

I have decided Monster is going to be on "downtime" mode from the time he gets home until bed, every night except Wednesdays. He has swimming, and he actually likes it, and last week (of course the week I wasn't there because of my surgery) he swam, for the first time, completely unassisted and with his face in the water. So I want to make sure we don't just cut the swimming out right now.

Now I feel guilty. I think about people whose kids are taking music lessons or dance lessons or playing team sports and here's my kid, in OT and in special swim classes.

And I've tried soccer. Monster got so upset when the other team scored a goal that he wouldn't be able to play the rest of the game.

We did acting class. Monster tried to kill a kid on "graduation day" and though the owner didn't say it outright, he basically asked us not to bring M back for another semester.

And now I took away OT. M used to love it and look forward to it. Ever since the day treatment started he cries every time he has to go. It stresses him out too much.

He won't do karate. He won't take piano lessons. I've asked.

I think I'm worrying too much about not giving my son a chance to experience life the way most kids do. But then, he won't anyhow, right?

I feel like it's the right decision, but I'm so upset right now.

I worry that my son won't be "good at" anything when he grows up, because he never got any lessons.

I guess I just keep offering. Or maybe he'll see something sometime and tell me he wants to do it.

He'll be okay, right? I mean, I played soccer, took piano lessons, and played basketball. And all I got from all of it was, I will never, NEVER be good at anything athletic, and I sure as heck can play "chopsticks" as well as anyone else out there. And when I was on teams, I was usually the kid that would make the other kids groan when the coach put me in.
So why am I so sad that my son isn't going through that torture?

Angry Monster

Angry Monster is becoming more and more common lately. Angry Monster tells me I am mean. Angry Monster refuses to give me a bedtime kiss or hug. Angry Monster Yells at me, swings at me like he wants to hit, stomps and slams doors. Angry Monster is mostly about me, not so much about Hubby.

My Monster has always been my sweet Mama's Boy. The kid I found sweetness in even when he was rotten.

But Angry Monster leaves me a little hurt (although I don't let it show) and a little sad.

And he's really not very sweet.

We still have those moments when he snuggles up with me and all feels right and good.

But those moments are less and less.

Most of the time he is hating me for something.

So I'm going to live....

The surgery was Wednesday and today I got the news - benign. I wish I could remember what it was called, this growth on my leg. I should have written it down when the nurse told me. Oh, well.

Monster talked about nothing else for the past two days, so that every adult he came in contact with was asking me, "how's your leg?" Poor little guy. He gets so stressed by things like this. And now I'm crabby because I am in pain and I'm feeling a tad sorry for myself.

I kept telling myself, if this turns out to be okay, if I don't have some horrible cancer or other disease, I would change my life. Now that it's over, well....

Maybe tomorrow?

I HATE YOU GUYS!!

Monster told Hubby and me this tonight for making him clean up after himself.

I calmly said to him, Well, I'm sorry you feel that way. I love you.

Then I walked away.

I knew it was coming at some point. It's only a matter of time before most parents hear this, right?

But this kid's been going downhill now ever since he started the day treatment.

I don't know. Is this progress? Apparently he didn't hit anyone today.

Hiding emotions

Monster sometimes knows I'm upset before I do.

There's no way I can hide how scared I am about the surgery to remove this "thing" on my leg. It's this coming Wednesday.

I've been fine until now, pretending to myself that I'm not afraid, but now I am terrified.

And when I'm scared, it scares Monster. So I try to hide it.

He knows, though. He can tell when I am hiding something.

So maybe I should just tell him.

And I think this would be easier if I knew he would maybe be a little shaken by this whole thing, but not then turn around and beat up on his classmates or teachers because of it.

I try to keep things from him because I don't want him hurting other people.

Maybe I need to stop tiptoe-ing around him. He knows anyhow. It upsets him anyhow. It's a no-win situation. When Mommy is upset, Monster gets upset, and a whole chain reaction goes off. Whether or not I tell him the truth.

It's just that what I don't need when I am stressed like this are reports from school that Monster was hitting, Monster was making bad choices, etc. I know there needs to be communication but sometimes I want to say to them, "Did you deal with it? Great! Then LEAVE ME OUT!"

And I know that's not really what I want either, and it isn't what I really mean.

Mommy is mean!

This is what Monster told Hubby tonight when he asked if he could play with his friends after dinner and I said no.

This is what he is learning at his day school. How to label his feelings, how to verbalize his anger.

I was pretty impressed.

The other day when I made him put away his water toys after running through the sprinker he asked me, "Mommy, why is it I feel like I am always your servant?"

This is great. The kid truly believes we make him do everything in the house. We make him dress himself, clear his dishes after a meal, clean his own messes and put away his toys. And brush his own teeth. And we are, according to him, making him do EVERYTHING, and we just SIT THERE AND DO NOTHING.

So, what do we do? We laugh at him, which pisses him off more. We shouldn't. I hated being laughed at when I was a kid. So I try not to. I try to take him seriously and say, I know you feel like we expect you to do a lot, but you're getting older now and you are going to have more responsibilities as you get older. But he keeps it up. Keeps whining and complaining until I just laugh.

He hasn't told me he hates me yet. It'll be soon, I'm sure. He actually HAS told me, "I don't love you." and when I say, well, I love you so there, he turns around and says he was just kidding.

I know, he's trying to get reactions. He's trying to figure out ways to hurt us. What happens from here? He peed on our couch. Now he's just saying rotten things to us. When does he start making the threats? When do we start to worry?

The other day he told me, "You can't MAKE me do this!" about something I really wanted him to do, and I thought, you know, he's almost right. He's heavy, now. I can't lift him. He's strong, too. His build is thick and muscular.

The threats become more outlandish. "Well, then, if you don't, you're grounded for a week AND no treats for a week AND no TV AND no Star Wars on Playstation...." literally - sometimes that's what it takes.

So it's like taking a dog on a walk when he doesn't want to walk. We tug. And tug. And make some leeway, but then lose some ground when he pulls back. It's a battle of wills and he hates that it's two against one and he fights even harder now that he knows he cannot divide and conquer.

Maybe this is normal 6-year-old behavior. It's very frustrating, regardless.

Inclusion

I am stealing this quote from a diversity training webcast at work...

"Inclusion occurs when we value others for their uniqueness and see their differences as positives."

I love that quote. I love the idea of everyone seeing my son's differences as positives.

I was thinking about this on the way home, and about inclusion in school. When Monster went into kindergarten we were SO naive. Here we had been told after his diagnosis - BY THE PRESCHOOL AUTISM SPECIALIST - that all we had to do was put my son into this special preschool they had and he'd be "all set" for kindergarten.

All Set?

I think she was lying to me at the time because I probably looked as if I were ready to self-destruct. She must have thought it would be too much to tell me that kindergarten would only be a whole new set of horrors for my son and me.

Anyhow, the law is that they practice inclusion as much as possible - that means placing children with disabilities into a classroom with 25+ other students, a teacher, and if you're lucky, a one-on-one aide for the disabled child. This is the law. The kid has to start out in this setting if at all possible, and then from what I've seen they work toward proving that your child doesn't belong there and needs to be in a less-inclusive environment. This, by the way, can take years for the school to prove.

In those years, a child like mine in a regular classroom would regularly;
Be removed from the classroom
Be separated from the other children
Be blamed for all the troubles in that classroom
Be suspended for behavior issues
Be told by other students that they are bad or should just shut up.

I have no problem with inclusion. I think the parents who fought for the inclusion of their disabled children are amazing, incredible people who changed the nation and probably had to fight every step of the way.

But now I think it may not be the right thing for every child. I don't think autistic children should automatically be placed in a regular classroom. But it's the law.

I think about the things that set off my son - large groups, lots of noise, kids brushing against or bumping into him, bright lights, transitions - and I think, your regular public school classroom is set up to make my son and others like him a failure. And not only will they fail at school, they will fail at making friends and they will decide they are stupid and they will internalize everything. They will decide they are horrible, rotten people who can't do anything right. Because if you can't sit still and learn in school, well, what CAN you do right? Kids spend a huge part of each day there.

Many parents of Aspie kids want their kids in the regular classroom. I know I did. I know I was led to believe it was my son's "right" by many, many people. But one person was brave enough to tell me directly, "your son is in the wrong place. The school cannot tell you this because you could sue them. There are laws that tie their hands. But your son isn't learning, and he isn't happy there, and he doesn't feel good about himself because of it."

Thank god for my parent advocate. Nobody else would have told me, and I would be sitting in more and more IEP meetings trying to figure out what we hadn't tried yet and what we knew didn't work, when really the whole system was wrong for my child, and nobody in the school was allowed to say so.

It's wrong that a school counselor can't say to a parent, 'of course, your child has rights, but have you considered maybe that this may not be the right place for him?'

I know that the school felt absolute relief when I called my son's social worker and told her, I want to talk about putting my son into special ed, because an IEP meeting - which almost always took over a month to coordinate with everyone involved - was called for 3 days later.

Someday maybe my son will be in a regular classroom. My wish is that our school district will set up a special program for high-functioning ASD children so they can learn parallel to the NT children but not in that same space.

Where my son is now was not my ideal. EBD children are not the same as ASD children, and their needs are not the same. How you treat and discipline them isn't the same. There are two totally different places these kids' problems are coming from in their minds.

But my son flourishes in there. He learns. He was suddenly doing math and reading at higher levels than the second graders in his room. His teacher is accepting of each individual child and really does see the goodness in each of them. She values them.

I wish every classroom could be an inclusive classroom. I wish every school was set up to work with NT children learning alongside ASD children. I just don't see it happening any time soon.

If I knew where to start, I would fight my city to give my son and the others like him their own program. But our school's funding, like every public school's in this country, has been slashed to bits and I don't want to fight for this until every regular kid is getting a decent education, because that is more important.

And yes, there is always homeschooling. I will freely admit here that if I stayed home with my child and tried to teach him every day, one of us would end up murdered. Not necessarily him.

Private schools? We can't afford one.

Charter schools? There is an amazing inclusive school too far away for bussing that we are on a waiting list for. I don't know if we'll ever come to the top of the list.

Besides, I do feel like, I pay taxes, my son deserves an education.

But an inclusive one?

Maybe someday in the future it will be possible, when all teachers have learned to see the promise and uniqueness of kids like Monster.

For now, I want my child to feel happy and smart and supported. I want him to know he can be special AND successful. I think it's more important at this point in his life than "inclusion" the way the law defines it.

Mom to the rescue

I swear I have got to figure out how to cut the cord a bit.

Monster's PCA is on vacation for the next two weeks. So he's going to the Friday place every morning and getting picked up there for the afternoon place. It's something we've been preparing him for for a few days now.

Today I got a call in the morning and M's teacher told me he had been BAWLING, saying he wanted to go home - he even started walking out the door to walk home (it's about 10 miles from our house!). They got him back in there and called me, and I talked to Monster, and he started crying again, and I was telling him, I know you miss B - she'll be back in two weeks. You like this place, you've been here before. I know this is different for you, but you'll be okay.

As soon as I hung up the phone I started to cry. I wanted to leave work right there and then and rescue M from his sadness. I felt awful for him.

Of course 1/2 hour later the teacher called to tell me Monster was fine. He was happy and laughing and having a great time.

Lucky for me, I DO have enough common sense to realize when I want to over-mother, and didn't drive up there and rescue my son.

But still. Should I let myself get so upset just because my son is sad? This seems wrong to me. I can't feel his feelings for him. I need to let him feel them. He needs to learn to deal with painful things. It's just so hard for me to see him hurt. I want to rush in and stop the hurting right away.
Oh, and the afternoon program was really rough for M too today. I told his teacher about this morning, and she's going to talk to him tomorrow about missing people.

We'll see.

It's not like I don't torture myself enough with my own troubles; I add my son's on to my own. Poor guy.

Finding fault

I know this is futile but I do still catch myself wondering sometimes why Monster is the way he is. Who "gave" him Asperger's?
I drank a can of Diet Coke every day that I was pregnant.
I smoked and took Ambien daily until I found out I was pregnant.
I was on antidepressants through most of my pregnancy - low-grade and suposedly didn't get absorbed through the umbilical cord but who knows?
Plus, if you list all of the things I ingested or inhaled during high school....
I had Monster immunized - right on schedule. Including the MMR, all in one.
The birth was horrible for my boy - his heart rate kept dropping and he had an Apgar of 2 when he finally came out with the cord wrapped around his neck.
He had ear infections almost monthly for the first year. Lots of antibiotics.

Really- it could have been anything.

But then I look at things from a different angle. After reading everything I could get my hands on about Asperger's, I am pretty sure my dad and my uncle, his only sibling, both have it.
I also think that my mom's father had it.
My three brothers and I, we each have lots of ASD traits.
And I've been told that Asperger's is inherited, not caused by environmental factors.

So there's that too. And really it doesn't matter. When I get to the real truth behind it all, I was playing with fire by getting pregnant anyhow. Here I was, a woman who has suffered from depression and insomnia for most of her life (since I was 4 or so), who has been hospitalized for the depression when it became unmanageable, and who married a man whose mother was so classically OCD and whose father was an alcoholic.

What sort of child did I expect from this "colorful" gene pool we offered?

But I forget that we have given Monster many gifts, too, because there are people in both of our families who are ridiculously smart and talented and creative.
And what Monster seems to be is many of the best traits from both sides of the family.

I know it doesn't matter now. Monster is here and he is who he is, and he came from us with our many flaws and we raise him and we make mistakes but we also do many things right.

But sometimes I still wonder, you know? I think I will always wonder. What was it that caused my son to become who he is? And maybe sometime I will be able to just accept that all of it is simply destiny, and my son is exactly who he is supposed to be and he came from our lives and our ancestors' lives just as he was meant to.

I still kick myself regularly for the Diet Coke, though.

Pee

Monster potty trained over two years ago. He pee trained earlier than that, but he finally pooped on the potty after he turned four. It was a time of great celebration around here.
now, he only wears pullups at night. But those fail us all of the time. So many mornings he wakes up in a puddle of pee. And I don't know if it's because he drinks too much water at night or if it's because he sometimes gets his hands in his pullup in his sleep. A few times when he wakes up his pullups are pulled down.

Regardless, the potty training for the most part is done. I can deal with washing sheets, and the pullups are being paid for by Tefra, so he can wear them as long as he pleases. Someday he'll be washing his own sheets.

But now this child has started to pee himself almost every evening, sitting on our couch.

The first couple of times, we tried to be understanding, oh, it was an accident, it's okay..... but now it's been over a week of peeing on the couch every night, right before bed, and claiming he forgot that he didn't have a pullup on. It doesn't matter that the rule is, even if you have your pullup on (which we do our damnedest to not put on until right at bedtime but sometimes the jammies just go on earlier for whatever reason), you get off your butt and go into the bathroom.

My theory is he's doing this as some sort of revenge toward us. He's learning to deal with his anger diferently in his new dayschool, and I think he's working out other ways to "get back" at people for doing him injustices. We say something to him during the day that he doesn't like? He can be damned sure we'll be really upset when he pees on our still-pretty-new couches tonight and pretends it's an accident.

Of course my worrying mom mind then immediately jumps to, he's got a bladder infection. He's being sexually molested. He's being physically abused. This is his signal to us and we need to help him.

But the logical part of me puts the pieces together and sees a kid who is testing the waters to see just what exactly he can do to us to get back at us for, as he puts it, "Bossing him around."

We've been pushing him to be more independent lately. I have helped him get dressed all of this time and his OT has been telling us, he needs to do this for himself. And I've been ignoring her. But my son is turning into this little prince who thinks that he can clap his hands and have his clothes taken off him, put on him, food and drink placed in front of him and removed, etc, and I finally realized I was being had. Because the attitude is no longer, I love you Mommy and thank you for helping me, it's "I need water!" I can't put my shirt on!" "I'm too tired to brush my teeth!" And I finally thought, you're a spoiled little shit. And it's my fault. I've been waiting on this kid thinking he needed me and I've been deluding myself because he doesn't need me - not in the way I thought. He needs me to sometimes tell him, tough shit, do it yourself. He needs me to say, you pee on our couch again and you will be sitting on a wooden dining room chair to watch TV with us. He needs me to stop coddling him and start forcing him to do for himself or suffer the consequences.

Yeah, I know. I've been a sucker for so long. And then I put my foot down and hubby (who's been wanting me to do this for years) backs me up and suddenly we have a very pissed off kid on our hands who decides that peeing on our furniture is a neat way to get us for making him grow up.

If there's any consolation in this, someday when my son has decided to rebel against us in another, more clever and more evil way, we will get new couches out of the deal. If buying new furniture to replace slightly-pee-scented furniture is a consolation.

This kid has such an attitude that I swear I get scared sometimes of what he will be in the future. He told us tonight after he complained at us for bossing him (right after the pee thing, BTW), that we couldn't make him do anything he wanted to do and we couldn't stop him from seeing his friends down the street (this is a whole different story, but those kids are rotten in many ways which seems to make them VERY attractive to my son), that it WASN'T FAIR that we got to tell him what to do. And he's six.

Those creepy military schools where you send your kid away for two years and they come back completely changed don't seem quite so creepy at times like this.

Do they have those for first graders?

Thinking about the past

I've been thinking a lot lately about when my son was little.

I remember all of the pain we all were in, how angry we were, how scared I was, how out of control everything was.

I remember when I couldn't stop crying after I got the diagnosis for Monster, even as I told myself, other people have children who are dying or dead. I have no right to be so sad. But I was. And I told myself, it's still my Monster, he hasn't changed at all. But I still felt as if he had been changed somehow, tainted, ruined.

I remember the anger and hurt I felt toward all of the daycare people who accused my son of being bad, being poorly disciplined, having a bad mother, etc.

It was four years of hell.

And after I stopped crying I realized what a gift we had now. A diagnosis. I look at it as if we were handed a map without the "You Are Here" arrow and told to find our way to the center. The diagnosis gave us that red arrow. The place to start.

Plus it gave us a chance to stop blaming ourselves and being angry with Monster for not behaving.

When I think about how far we have come (and yes we have SOOOO far to go but I can't think about that now), I am so relieved that we got the diagnosis. Yes, it was painful to confront and it damned near destroyed my heart, but in the long run it's such a good thing. We are so much happier now, all of us.

Thank goodness for labels. I never thought I'd want my son labelled. But thank goodness.

A support board!!!

I am starting a support board for parents with kids who have behavior problems.

I'm pretty excited about this!!!

If anyone's interested, here's the link.

http://www.activeboard.com/forum.spark?forumID=121309&p=1

Cute

Monster is very interested in the radar views I can pull up on the Internet. Last night we saw that there was a heat advisory neaar where my parents live. Monster said we had better call them and see if they were okay. SO I dialed the phone and he talked to his grandma for about 10 minutes. He was very concerned and told her to turn on their AC (they don't have any) but she assured them they were fine.

I love when my little guy is able to consider other people's needs and feelings.