Lego

Are there Aspie kids out there who are not obsessed with Lego? Monster loves his Lego more than anything else in the whole house. And he has a lot of crap to choose between.

He builds odd, totem-pole-like creatures out of heads stacked together and placed on some of a platform. He also like to make the pirates fight the police men.

Monster has a giant box of Lego. And I have bought him him a couple of sets in the past that I built for him and begged him to keep them nice, but they are quickly disassembled and disappear into the giant lego box, never to be seen again. So that's it. No more Lego kits for him. Ever.

Except. There are two I want to get him. The Death Star, which, along with it's unbelievable price tag ($400.00) has so many people and pieces that would disappear within hours of its completion. But I know that these will be discontinued in a couple of years and part of me wants to get it for him and hide it away for years until he actually can take care of it properly. But then i wonder if he will ever reach that point.

The other is an American Indian village that I have been bidding on on Ebay. I decided no, I am not buying this for him, because he won't like it nearly as much as the death star. But the price!!! Holy cow. I think about what $400.00 can buy. I think I should take that money and buy gifts for needy kids. The problem is, I want it too.

I think it's going to have to pass us by. As much as my son loves Lego he doesn't like the idea that you must keep buildings in the same order they were built in. IN his mind, a bilding is a starting-off point, with cool windows and doors and such to be removed and adeed to hiideous totem pole statues he designs for his own pleasure.

I think I will just keep watching for the bargains on ebay for Lego people. He'd be happy if he only had those.

But holy cow that death star is cool!!!!!

Five words

Five words that strike terror in my heart when Monster says them; "look what I did!".

Now most parents would be all excited, "Ohh, Honey!! What did you do?"

I was naive enough at one point to be one of those parents.

But now I know better. "Mama, look what I did!" can mean, 'look at how I flooded the kitchen floor!' or 'Look at how I took a whole bottle of your new shampoo and mixed it in with my goop to have goop shampoo!' 'Look at how I dumped sugar all over the counter to make a "beach" for my lego people to play on!"

He always says it so excitedly, like he can't WAIT to show us his latest destruction. I sometimes wonder if he is intentionally trying to drive us insane. But no, it's just Monster being Monster, thinking we'll be as impressed with his new project as he is.

Last night he said to me, "Mama, look what I did to my toothpaste!" and I inwardly groaned. This was a brand-new container of toothpaste we had bought him. It's berry flavored (because mint still sends him into fits of rage, like his taste buds are being burned off by acid). So with lots of trepidation I looked on the counter at his bottle of toothpaste. What did he do? Did he add Draino to it? Pump hand soap into it? Pour his never-ending supply of goop into it?

No. He had pulled the label off. I realized I had been holding my breath, waiting for the punchline, and I audibly let out my breath and laughed. "Oh, cool!". Monster was surprised a bit - Mama is excited about something I showed her?

It was probably a mistake. A nod of approval to keep up these wasteful experiments that we try to explain cost us extra MONEY - this stuff isn't free. We've asked you not to use the stuff in the bathroom for experiments before (the liquid soap container used to get filled in the morning, and be empty by that evening). Not only is it wasteful but something you mix might be dangerous.

He has a chemistry kit. He has no interest in it. He wants to use our normal household products to try whatever little test he gets in his head.

It sure makes life interesting. And not always in a good way.

When Mama loses her mind

Picture this - a snowstorm, not a huge one, just one with enough snow to bring the freeways to a dead stop. It took me 45 minutes to drive 8 miles to pick up Monster at his daycare. Pick him up, and our new deal is, you do your homework in the car, and you have more time to play, watch TV, whatever, when you get home. He isn't doing anything anyhow, so why not do his homework?

I tell him last night, we're in for a long ride home. You may as well do homework because you won't have a heckuva lot of time to do anything after we eat dinner whenever we get home.

For awhile, the homework in the car thing has worked. He does it, no complaints. At stop lights I help him with instructions he doesn't understand. There hasn't been the whining, the "I CAN'T DO THIS!", the general griping and complaining. Last night though, he starts in right away. "I can't do this. It's too hard." Whine. Whine some more. Whimper and complain. And I'm fighting snow and stupid drivers and I finally yell at him, "SHUT UP! GET YOUR HOMEWORK DONE NOW OR NO TREAT AFTER DINNER!!!" And he tries to make a deal with me - "How about no video games after dinner?" "NO - You haven't played video games in ages. How is that punishment?" then he starts in with the whining again and I start yelling, "I'm SICK AND TIRED OF YOUR BITCHING AND WHINING EVERY.SINGLE.DAY!!!! You're going to have homework for the next 11 YEARS AT LEAST SO DEAL WITH IT!" Then he starts crying. And for the first time in ages I don't feel guilty for making him cry. I let him cry. I calm myself down and say, listen. just do your homework. Now. And if I hear one more whine out of you NO treat tonight. Then he apologizes for whining and I apologize for yelling. And he does his homework and I wonder why it has to be this way every day when his homework when the problems are 4+1 and 5-0? He knows way more than this stuff. But he whines. Oh, how he whines.

So I lost my mind with him last night. Poor kid. I try to be patience but my supply sometimes runs out. Especially when I've been in the car for an hour and a half, and half of that time I've been listening to my son whine. Sigh.

"You Stink!"

Only moms to other ASD children will be able to understand the joy I felt when Monster, angry with me for making him go to his room because he was refusing to do his homework, came out with an envelope that he said had a message for me. I opened it and it said, “Mom you stink”. And instead of getting angry, lecturing my son about his need to respect me, grounding him, etc, I simply hid my smile and told him, I’m sorry you feel that way. Now let’s get that homework finished.

Parents of NT children wouldn’t get why this is a cause for celebration. My son – the one who less than a year ago would have been screaming, kicking, slamming his head on the floor (and admittedly, he does still occasionally do these things) – is learning to express himself verbally instead of physically. And I couldn’t be more proud. Not that I’m going to tell him it’s okay to tell me I stink or call me names, but I did thank him for using his words before sitting him back in front of his homework.
It’s a happy day. It’s one of those days where you see rays of sunshine through the clouds. And these moments when my son does something I consider pretty amazing always catch me by surprise and add a little joy to my day.

School and daycare and PTSD

Not that I take PTSD lightly, but I really think I have it. I get notes from Monster's teacher and some days the notes are all about how horribly he acted - he was making noises and couldn't be quieted - needed to take 4 time outs, tried to hit the teacher, yelled at a classmate, etc. I read these reports and want to cry. As if each time I hear about these things my son does it re-opens the wound. I KNOW my kid occasionally (okay, maybe not so "occasionally") acts badly. Why does it scare and horrify me to read about a problem at school?

Because of kindergarten. Because of the hell we went through with suspensions, "quiet rooms", calls from the principal, etc. Intelectually I know that the school and classroom M is in now is such a change from kindergarten, and the principal at this school and his teacher actually LIKE him. I know that my son is not going to be sent home for being rotten. They deal with it. He is in a classroom FOR rotten kids - if they were sent home for being rotten the classroom would be empty most of the time and the teacher out of a job.

So I try not to get upset when I read about these bad days. But always my stomach knots up and I feel as if I am having trouble breathing. Panic attacks. Small ones, but there it is nonetheless.


Daycare. Let me count here......

#1 - National chain - pulled from center because my parents decided to stop helping us pay for his daycare. Out of desperation I placed him in

#2 - a home daycare - a single mom who seemed nice enough, sort of hippy-ish, pretty cool. She tried to kill my son. Maybe not flat out, but she didn't change his diaper in 5 hours. Didn't even open his baby food or wipes. Claims she tried to give him a bottle. Put him to sleep on his stomach. Called me at work to complain that he couldn't be comforted. Arrived to find that her daughter had some awful Jim Carrey movie playing at a deafening volume. Got my son calmed down but then called my boss and said I couldn't come back to work. Asked for my deposit back and was told no. Took my unopened diapers and baby food and left. Sued her in small claims court and won, but never got any money.

#3 - back to # 1. Fought constantly with them to not allow my son to fall asleep at 12:30 since I picked him up at 12:45 and he never fell back asleep. They never did it. Once walked in to find the woman in his room asleep on the floor next to one of the kids' cots. Another time she was screaming at a tiny boy for crying. When M was 18 months old he had a fat, bloody lip when I picked him up. No incident report. I was tld nobody saw it happen, but "you know how boys fight".

#4 - Brand new gorgeous national chain daycare opened and thank goodness because #1/3 was awful. Within a couple of weeks the trouble started. The write-ups started. Biting. Hitting. We had meetings with the director and classroom teachers where they told us what awful parents we were (in slightly more veiled words) and how we needed to punish him more for his misbehaviors. We tried - we really did. I still have guilt over the constant trouble that kid was in and the lectures, because I know now that these things don't work and only add to the ASD child's stress. When M was two he got written up for throwing a chair across a rom and hitting a teacher. He was placed on warning. More meetings. More "strategy development". Was refused to be put into the older kids' room because he wasn't potty trained, even though a girl in the older classroom once came up to me to show me her "Dora panties" and lifted her dress to show off Dora pullups! At some point we knew it was only a matter of time before M was gone and I started searching for another place. We were told that after two more written warnings he was out. I found him a new place and on his last day he was written up three times. I threw them in the trash instead of signing them.

#5 - The Most Wonderful Daycare Ever. A small, local chain that treated M like the special, wonderful boy he was. The place was small and there were only maybe 12 children and they were usually split between two rooms with two teachers in each. Wonderful women and the kids were happy and well-adjusted. A 5-year-old there obviously had Asperger's. Once a teacher said to me, about this boy AND M, "I just love kids like this!" I was oblivious. I also once told the director how I was glad M wouldn't need special ed, and she said, "Well, don't be so sure..." once again, I simply let it go. I didn't know what to make of it.
The owners of the daycare decided that location wasn't profitable and closed it 6 months after M started.

#6 - SO close to my work, a daycare run in a Lutheran church that seemed very accepting and kind. They knew M had aggression issues and said they would work with him and us. They did well for awhile. M was in the younger room, once again because he wasn't potty trained and they didn't have diaper changing facilities in the older kids' room.
When he finally did potty train they moved him up. This is when the trouble started. The kids knew he was different and egged him on to get him angry. M wanted so badly to be accepted and when he wasn't he hit and pushed and kicked. Suspensions. Calling in a specialist who observed M and gave advise on how to help him behave better. Then he hit a kid in the head wiith a wooden block and the kid needed to be rushed to the hospital for stitches. So much for the church daycare. Back to looking.

#7 - a different location of the wonderful local chain. I was naive enough to think that the teachers would be the same. Day One I got a phone call from the teacher saying that my son would never work out in this daycare and why did I ever think this would work. She hated him. He actually drove her to tears several times. I would go to pick him up and she would be crying, telling me my son had done this to her. It was time to get answers. I broke down and called our city's special ed division. I told the woman in charge that it was an emergency. She went to the daycare the next day. She called me after observing and used that awful word - that "A" word, the one I had heard occasionally before but just knew didn't apply to my son. But here she was telling me my son displayed several traits of Asperger's. They set up a meeting, and knowing that this teacher hated my son and did nothing to hide it, and refused all of their attempts to help her deal with him until we could find him a new placement, they pushed through his testing schedule at lightning speed, and within two weeks we knew my son had Asperger's, at least according to our school district.

# 8 - M started a special preschool. We were told (honest to god) that we would put him in this class and by the time kindergarten came around he would be "fine". At this time we also placed him in a home daycare with a single woman who treated my son like a piece of dirt. She spoke with the autism specialist from the school and decided that my son could not be trusted to play with other children - she kept him isolated in a stinky cluttered room on his own most of the time. Two older boys played tricks on him to get him in trouble with her, and she always blamed my son, even when the evidence pointed to the fact that these boys had purposely done something to get him in trouble (like throwing his favorite toy into a playpen they weren't allowed to climb into, and then telling the DCP when my son went to retrieve his toy).

# 9 - I got him out of there as soon as I found him another place, a place that oddly enough I had checked out when we were looking for home daycare when my son was a baby. I called it "the garbage house" and that's basically what it was (Still is). He loved it there though and I thought was doing well, until one da they dropped the bomb that he wasn't welcome back. I don't know why. I thnk another parent complained because their kid was pushed.
Found out months later that the man who watched the kids mostly used to flick M in the head and spank him. He also had friends come over to visit and once my son asked for a drink of water. A "friend" gave him water and my son took a swallow, and it was hot water. M freaked out. Friend thought it was hilarious.

And people wonder why I have issues with home daycares....

#10 - Another wonderful independent local chain who understood my child, and while they did have to call a couple of times to ask us to come get him because he was out of control, he did really well there. He graduated from there when he was ready for kindergarten. I miss that place.

#11 - The after-school program at school. They can't kick him out, right? They're funded by the school. They are in the school building. They can't discriminate against my kid, right?

My son went insane at that place. He once hurt a teacher so badly she was out on leave for awhile. They kicked him out. I fought them. I went to the OCR. I filed a police report when my son came home with dark red marks in his armpits where his "aide" had grabbed him and thrown him into the "calming room". We lost our case after about a year.

#12 - Hubby and I worked out an insane schedule so we could be home when Monster was home. We did this for a few months, until summer came

#13 - PCA and respite and day treatment program for summer - PCA mornings M-TH until 12:30 when the bus picked hm up for day treatment. I was home before he got home. Fridays, no day treatment, so he went to respite at a very nice facility that he will be too old for next year. This all happened because I finally got PCA hours, or I would have done this all earlier.

# 14 - the home daycare he's in now. The HDC mom has a 12-year-old child with Asperger's. She's complained about M a few times, but so far no threats. But every day I wait. I have no faith M will make it here. I wish I did.

So. This is why I am traumatized about daycares. Wow- that was sort of cathartic, in a way...

Because I need more to worry about

About two months ago my dad had major foot surgery. He had broken his foot a long time ago and never gotten it fixed, and he had gotten to the point where he couldn't walk without a came. He saw an orthopedist who apparently told him how awful the rest of his life would be if he didn't get his foot fixed, so he finally broke down and had the surgery he's put off for over 20 years. After the surgery the doctor put this huge monstrosity of a brace on it with pins going into his bones from all directions - 16 in all. My mom said, picture those things they screw into people's heads when they fracture something in their neck, on his foot. It was a monstrosity. My mom had to clean it daily - each pin, unwrapping and wiping and cleaning and wiping and rewrapping. They also discovered my dad had an enlarged prostate and so he ended up with a catheter, that my mom had to learn how to change and clean for him.So he's been at home stuck in bed forever. He's bored and sore and depressed. The stock market crash is destroying him - he's losing all his money. My mom noticed last Wednesday that one of the pins looked like there was an infection around it. She called the doctor and he called in a prescription of antibiotics for him. So he's been taking those and they've been screwing up his stomach. Then Thursday they took him out for Thanksgiving - his first trip outside the house that wasn't to the doctor's office. They had a nice dinner and took a walk (with my brother pushing the wheelchair) on the pier. This Sunday my mom noticed a couple of the pins seemed weirdly loose. They had an appointment Monday so she figured she'd talk to the doctor then. Meanwhile, my dad developed horrible pains in his lower gut and lost control of his bladder. So my mom had to get him Depends. Doctor's visit Monday - my dad has a severe bladder infection. More antibiotics. He hasn't wanted to eat for over a week. i guess he barely ate on Thanksgiving. AND the two pins that were loose - they broke. And the one that looked infected, well, there's a chance my dad has a bone infection. So they had to take the whole contraption off two weeks early which will slow the healing process and keep him in bed even longer than expected.Thursday my mom will find out if he has a bone infection, and if he does he will need intravenous antibiotics for two months. My mom finally broke down and asked for a home health care nurse (thank god). They're going to try to get a male so that he can lift my dad and get him into his wheelchair and take him outside. My mom is exhausted and depressed and my dad told her today he'd be better off dead. This is not my dad. He doesn't talk like this. I'm afraid he's just giving up, and I don't know how to give him any reason to want to go on. I know he's miserable and depressed. I know he can't see the light at the end of the tunnel, and if he chooses he will just give up.I'm scared and sad for him. I don't know what to do for either of them. I'm 2 thousand miles away from them. I thought about going out there but I don't know how Hubby can handle getting Monster to and from school and still get his 8 hours at work in. Besides, M is falling apart since he was kicked out of day treatment and is having more trouble in school than they've seen in ages. I feel like I can't leave him now, because he has his own traumas right now, and sorry to say it, but Hubby is not prepared to deal with Monster on his own for any extended period of time, not now when he blows up at M for doing 6-year-old stuff.

The fun never stops!

The job I hated will be no more soon. My boss had a little chat with me yesterday and told me I wasn't a "good fit", but she's not firing me; she's going to help me find a different job within the corporation where I'd fit better. Not sure what that means because I am (I thought) pretty good at my job, but the two things that have been angering and frustrating me have nothing to do with my performance per se...

1) My boss has been really ticked off at me since I applied for intermittent FMLA, even though I've only had to use it ONCE in the past 6 months to care for Monster.
2) My boss has no children and oddly enough nobody else has small children in her division, and she has no understanding of how sometimes, as much as we care about our jobs and want to do our best and put in our time, our children must come first. We responsible parents do everything we can to make sure that our children are cared for and have places to go so that we can go to work and get our work doen without worrying about them. But that all changes when your child consistently gets kicked out of daycares, sent home from school, etc. I can't put in the OT my boss expects everyone under her to put in, because I need to put in my 8 hours and then be home for my child. I have no problem putting in OT when a project calls for it, but she seems to think a truly dedicated employee would practically sleep at work.

Blessing in disguise? We'll see. It depends upon whether or not I get a decent job out of this whole deal, with a boss who hopefully has young children, or grown children, but at least remembers. I am semi-friends with a man who supervises my old department (he was promoted after I left) and he has a disabled daughter. He;s the one who told me about intermittent FMLA. So I emailed him yesterday and asked him to keep an eye out for me. I have quite a few connections and these people, even if they don't have positions for me, can put in a good word for me to whomever asks.

So now, my blessings from Monster list, for no reason whatsoever except of course his being who he is makes everything more difficult when dealing with all the ignorant, intolerant people out there. like my boss....

1) His great sense of humor. We make each other laugh all the time. His humor is twisted and sarcastic, like mine. Plus sneaky and goofy and immature, also like me. Just now as I was writing this he said, "Does this tickle?" and then blew on my belly. The nut.
2) His amazing intelligence. His insight and deductive reasoning is mind -boggling. He always impresses me, and since I consider myself somewhat bright, that's VERY impressive, IMO.
3) His cuddliness. He still asks for "Uppy comepuppy", code word for, "I want to be held". He crawls his long, lanky body onto my lap and settles against my chest and it's like a homecoming. My body relaxes and I breathe deeply. I was meant to hold this child. I was meant to give him all the hugs and "uppy comepuppies" he needs.
4) His caring and compassion. When I slid down the wet, muddy stairs at the Renaissance Festival this summer my boy was right there, hugging me, kissing me, holding me, asking me what I needed. He is kind and recently started bawling when they showed a particularly heart-wrenching Humane Society commercial. He wouldn't calm down until I went online and made a contribution to them.
5) His love and appreciation of all that is fun. Rides, trips to parks, paddleboats, camping (with Hubby, NOT me), fishing (again with Hubby) - he is just ready to try anything. He has an enthusiasm and excitement about life that I can't help but get caught up in.
6) He is amazingly beautiful. He is physically perfect - tall and lean. He has huge brown eyes and hair like mine when I was little - golden blonde in the winter and light blonde in the summer. I still love to just look at him. I can't stop looking at him.
7) The way his team at his school tells me that he "lights up the room" when he enters. The teachers adore him and my son seems to know how to charm them even though he still has his issues. Even the principal thinks he's wonderful. A far cry from the principal at his old school, who considered him merely a troublemaker.


I don't dread going to work anymore. Today I'll get ahold of all the rest of my friends and get the word out. Then I'll start applying for the jobs my boss claims she'll help me land. And maybe I'll find a boss who understands that sometimes children need to come first. I'm not scared of hard work and I do my damnedest to keep my private life separate from my work life, but kids like mine tend to bleed into every other part of your life. People need to start undertstanding that.

Where Have I Been?

Okay. Thank you James for checking on me. I can tell you what's been going on and it may take awhile.
First off, I used to think I had all the answers or at least was someone who had "been there" and might be able to use my experience to help others. At some point over the summer I decided this was pretty conceited of me. Everything I thought I had gotten to work for me fell apart and I realized I was still as ignorant about "the system" as I ever was. I felt as if I had been cocky and thought that I was through the worst of it. But the worst of it was waiting around the corner, ready to pounce on me.
I wanted this blog to be a place where I could be upbeat, and tell others that life sometimes seems horrible for us parents to Aspie children but that in the long run, these children are so amazing and such blessings and once you learn to navigate the system. And I do still think that my son is wonderful and I feel so lucky every day to have him and I love him now more than ever.
But life doesn't get better. It doesn't get easier. You think you know the rules but you never learn them; there are hidden traps everywhere.
So what was so horrible that I changed my whole thinking on this? Nothing, really. A bone-crushing depression that I suffocated through all summer long. The abandonment of my parent advocate who decided I didn't need her anymore. The decision of my son's day treatment program that they really didn't know how to deal with Asperger's children (they're mainly for children with behavioral issues due to trauma) and the early graduation that left Hubby and I struggling and freaking out over how to make our hours work so someone could be home at 3:30. A new job that I hate with a boss who has no children and is inflexible and seems almost resentful about my child who makes me come home after working 8 hours, while the other childless people work OT all the time without blinking. The raising of our Tefra payments to double what we were paying before. The panic of looking for a daycare in a city where we have exhausted all but one (we found the last one) daycare willing to take my son. It has to be in the city limits or the school won't bus him there.
The time spent begging the only school for ASD children between the ages of 6 and 10 to consider moving my child up on their list because they take NT children too and I gave them my son story. They didn't care.
The realization that there are no services for my son now that he's turned 6, until he reaches the age of 10. What do all of us parents do when our children reach the Magic Age Where All Services Disappear?
What else?
My son is at a home daycare and has been there for two weeks. This past Wednesday was the first day he spent there all day because school was closed. The daycare mom was annoyed with him for "making all the little kids wild." WHo knows what will happen? I don't know if he'll stay.

We interviewed PCAs before we found the daycare. I didn't want to do it because we might be able to use our PCA hours next summer. We interviewed one man that reminded Monster of the DCP who used to smack him in the head. He had nightmares for a week.

He graduated from his day treatment program two weeks ago. He has been wild and out of control at school since then, to the point where his teacher suggested we consider medication. First of all, that's illegal. But it annoyed me mostly because she needs to see that

a) Monster just left a program that he liked and kids that he considered friends
b) Monster is now spending all day at school and this is an adjustment
c) M is starting a new daycare
d) M got his orthotics adjusted and we were told the arches had been raised, and he would be in pain
e) the time change usually takes M at least a month to fully adjust to

I know there's more, but the point is, this is a stupid time to start suggesting that we medicate my son for being difficult when he is going through so much, and any one change is hard for him.

So to summarize, I stopped blogging because I don't have the answers and I don't feel so upbeat and I don't know how easy it is to raise an ASD child, even a high-functioning one, because it's not easy. It sucks, to be honest. Not because of my child, although Hubby still has trouble accepting that Monster is the way he is and being pissed off at him doesn't change him or his behavior. No, it's because society still doesn't know and seems to have no desire to learn how to help these children. They are popping up everywhere; I meet more and more people whose children have been diagnosed with Asperger's and high-functioning autism. But our school district has the gall to claim they don't have enough children to start a high-functioning ASD program.

I realize that I want to be someone who can help parents like me. I hate my job anyhow and if the economy wasn't in the toilet I would dump my job and try to find something more fulfilling. We have a huge Somali community here and their children are reaching epidemic proportions for the low-functioning autism, and I wish I could help them. Here they are, in a country that doesn't speak their language, doesn't understand their customs, and now their children are being diagnosed with autism in unbelievable numbers, and I wish I could help them.

I can't help anyone. I can barely handle my own life with my own one child. How can I help others?

Anyhow - enough of my pity party. I will try to blog again. I jsut sort of lost the fire, the anger that drove me to want to fix things and change a little slice of the world. I wish I could get it back, but mostly I'm just tired now.

In the beginning

All was calm. Monster has had a great first week at both school and day treatment. Yesterday two boys had a huge fight on the bus going from school to day treatment, and my boy sat in his seat with his ears covered, crying. Poor guy. He couldn't really explain to us what had happened but he left his backpack on the bus, and in my phone calls and attempts to retrieve the backpack I learned most of the story about the fight and was oddly pleased that my son was not a participant. But he was very traumatized last night. He screamed and cried most of the evening. Thank goodness he wore himself out and fell asleep (in Mommy and Daddy's bed).

I guess it must be the day treatment he's been in all summer. It must be working. His teacher wrote to me on his first day about how she noticed a new level of maturity in him and responsibility.

So. Things have quieted down for the time being. The OCR case was dismissed due to lack of evidence. The home day care where Monster stayed for a couple of months before getting kicked out, and then told me months later that he had been spanked and flicked in the head, is being investigated for reports of child abuse. I got a call the other day from the county dept of child protective services. They just wanted to know if anything had happened to Monster when he was there. So I told her.

If it's true, I hope they get those people but good.

No schools to fight. Nothing more to do right now but love my boy. He is just so sweet and wonderful, and life seems to have calmed down for all of us. Sure we still have our wild days, but they're fewer, and Monster is much more pleasant most of the time.

I know that what happened these past couple of months with me was the mourning I didn't allow myself to do over 2 years ago. I didn't think I had a right to mourn, what with this healthy, wonderful child I had. But I had to mourn SOMETHING, I guess. Instead, I just got really angry and fought anyone who tried to get in the way of my getting what my son needed for him. When there was nobody to be angry with anymore, I suddenly sank into the sadness that had been there all along. I don't know - maybe it's guilt, or regret, or whatever. Still blaming myself for how Monster turned out, even though I really think he would be the same no matter how vigilant I had been when I was pregnant.

Was it the fact that he stopped breathing and his heart stopped a few times during delivery? Was it my high BP? Was it the daily can of Diet Coke I couldn't give up? Was it the immunizations that I didn't bother to question, because I know they're good, but maybe should have requested the individual doses, spread out farther apart?

I don't know. I don't even know that I care much anymore. Monster is wonderful just as he is. I still worry that he won't have friends, or at least not good friends who treat him well. But all in all, I think he'll be okay. But that's just today speaking. It is nice to feel hope occasionally, no matter how brief it is.

My first grade boy

Where has the time gone, my sweetest boy? Tomorrow you start first grade. It came so quickly. And you - even in the past few months I have watched you change and become so much more independent, so much more ready to take on the world without me.
I've been trying to give you more freedom without letting you go completely. Sometimes I know I pull on you too hard and other times I probably should be more watchful. It's so difficult to find the right balance.

My focus on you has become less of "my son who has Aspergers" to simply "my son". You will always have Asperger's, but I am able to see lately that this won't homd you back in many ways at all. I know you're having friend troubles, and this worries me, but I also know this is something you need to learn to work through, on your own, in your own way. I can project my own feelings of loneliness that I have had in the past onto you, but they aren't your feelings. I think I've spent a very long time feeling your feelings for you, or interpreting your feelings in my own way.

I have high hopes that this year will be so much better for you. I think you are finally in a stable place where you are understood, and so I don't have any big worries over the school year.

I just pray that you will make friends. And be happy. And learn well. And develop the love of learning that will carry you through life.

Good luck, my grown-up boy!!! I can't wait to hear all about your first day.

Love, Mom.

A day for celebration

Yesterday I was sitting at my desk at work and it dawned on me that we had survived the entire summer without one single disaster - we never had to come pick Monster up from anyplace or stay home because he has been suspended or kicked out.
So I was feeling pretty god about this and practically danced all the way to my car. That night would be special - we should go out to dinner or at least Dairy Queen or something. I got into my car and put in a CD and was checking which song was on as I backed out of my space - right into a minivan stopped behind me.

And you know what? I'm STILL happy. I can't believe we made it! Monster's school teacher called the other day and wanted to know how his summer was and I had told her, it went really well, everything worked out perfectly. And she said how I had worked so hard to get M all this help and I should be so proud of myself. But, hey, what about all of the people who cared for Monster during the summer and understood him and didn't give up on him or kick him out - they all deserve so much credit, for caring for my son and treating him with respect.

I have a good feeling about first grade. We don't need to worry about daycare for the time being (Oh and BTW the OCR sent us a packet - there's not enough evidence that my son was discriminated against), and he's getting lots of support from the day treatment program and his teacher.

What is drowning me

The grieving I seem to have never done, or never done adequately when I learned my beautiful boy would have lifelong issues.

The time when Monster was about 5, when I commented on my support board that the thought of staying home alone with Monster all day every day through the summer made me feel that I couldn’t breathe – I knew I couldn’t do it – and how one of the women on the board commented, “this makes me sad for Monster.” And I wonder exactly what sort of mother I really am that I would not be thrilled at this thought of all this time with my child.

The idea that I have Monster in two – not just one, but two – different classroom settings that I still am not convinced are the best places for him, but see no other options, and don’t know how I will ever know if these places are good for him until after the fact, when it’s too late to change.

The idea that Monster is 6 and still so attached to me, as if I have turned him into a needy Mama’s boy who will not learn how to stand on his own.

The thought that Hubby and I are more like co-parents and less like a couple. It’s been this way forever but it’s something that really came to light this weekend.

What my son did yesterday. His feral friends had company so he asked me to invite R over. Feral friends show up and suddenly it’s a circus in our yard. Hubby tries to send them away and R throws a tantrum and threatens to get “really angry” if the ferals aren’t allowed to stay. So they stay because R needs to be either placated or sent home, and I could have sent them all home and left Monster friendless, but it seemed too much like punishing M for something he found himself in the middle of. But then M came in asking for water. I made him two water bottles with ice water and told him to give one to R, since the ferals can go home to get something to drink if they want. He gives the second bottle to A, the feral sister, “because he loves her”. I am furious with him for
A) not doing what I asked
B) not being respectful toward his guest
C) choosing his feral everyday friend over his special guest that he requested to come over

He only asked for R because his friends were supposedly unavailable. I had to put my foot down last night and tell him no treat tonight, and then he screamed at me and told me to shut up. Then I sent him to his room. I told him no more ferals when you invite guests over. They WILL be sent away as soon as they show up. Monster replies, “well, if R wants them over…” and I don’t know what to do about that. The ferals don’t understand R. He gets along fine with Monster and the two play wonderfully together. But the ferals do to him what they do to my M – stir him up, make him nervous and restless, say hurtful things. And my M makes me more angry because he starts playing with the ferals as if R doesn’t even exist. I was forced to go out regularly and ask R, are they playing with you? Are they being nice? After finding him alone in the playhouse while M and the ferals rode their bikes around.

Today the grief seems not such a huge tidal wave coming at me. It seems instead to have already hit, and it settles around me and laps at my legs and I can’t wade through it don’t know which way shore is don’t even know if there is a shore anymore.I can’t be disappointed in my son for being who he is. And I sometimes don’t know when I cross that line. He needs to be taught to be respectful of others for sure. But aside from my total confusion about how better to handle yesterday is my sudden anger that arises from nowhere and sweeps over both of us. The other evening M got home from school and we were talking and I made him laugh and he wet himself a little. And I sent him to his room and told him to get changed. Hubby called and I was talking to him and Monster was calling for help and I ignored him, because Monster claims to need my help 95% of the time and maybe 5% of that time he really DOES need it. I finally got off the phone and went to check on him and he had peed onto his bed and all over the floor. I was furious. I was so angry I couldn’t think straight. I yelled. I asked him what the hell was he thinking, doesn’t he have any sense, etc. But then when I retold the story a friend pointed out that I should have sent him into the bathroom, since knowing some had come out, the rest was close behind. And M had his hi-tops and orthotics on, and even I have trouble getting those off. Asking M to do it, quickly, so he could get his clothes changed, was just stupid of me. So here was just one example of the ways I fail my son. I lead him the wrong way and then blow my stack when he does what I say but it’s the wrong thing.
I apologized. I always apologize. But how many times do I get to say “I’m sorry” before he stops believing me? Why does he have to love me so much? I fail him so often. I wonder why I was given this child who was obviously meant for someone with more patience, more common sense, more understanding. All I can do is love him more than life itself. And it doesn’t feel like nearly enough.

Weeks pass by

School is one week away.

Our PCA actually DID get her ID badge so she actually can be Monster's PCA but it doesn't really matter now because she's done in a week.

We found out that the place that does M's respite will be available to him next summer - all day, every day Mon-Fri if we choose to do that. It's out of our way and he needs a lunch packed every day,but we might end up doing that. I know - leave it to me to start asking about next summer, but Monster has loved his Fridays there so much that he wanted me to make sure he could come back.

Monster is still in swimming but suffering a setback from the time he was at the rec center pool with Hubby and he jumped into the deep end and the lifeguard went in after him. He was scared and humiliated. So now he doesn't want to swim anymore. I try to explain to him that the lifeguard was doing his job and that when M learns to swim the lifeguard won't DO that anymore, but he is still freaked.

I have spent a good portion of this past month in a black depression that I didn't think I would get through. I spent a lot of time wondering how much better off Monster would be if I weren't around and would Hubby be able to handle him and maybe it would be for the best?
I wondered a lot if anything I have done for my child has helped in any way or am I simply making his life more difficult and really has he gotten any farther than he would have if I had simply let life take its course? I felt as if I had been deluding myself thinking I was making some sort of difference, thinking that I was going to make things better not only for my child but for others who will come after him. I felt stupid blogging about my son as if nobody else has struggled and fought for their child to simply be accepted and cared for.

I never heard from the OCR, but now I don't really care. After school care is a moot point right now - it isn't ideal but Hubby will go into work early on Friday, I will go in late, and Hubby will be home for Monster's afternoon bus.

The day treatment will keep Monster at school until 4 every Mon-Thurs, and I can be home for that bus.

I was hoping by this time that I might be able to work from home but my boss dislikes and/or distrusts me and won't let me work from home. But still it will work out, and since nobody wants to care for my son on school closing days hubby and I are divying up the days and staying home with him.

First grade starts right where Kindergarten dumped Monster off three months ago - same classroom, same teacher. Same uncontrollable children being carefully placed out into school settings so they can hopefully someday be properly mainstreamed.

I don't have as much hope for Monster's being mainstreamed as I used to. Since the day treatment program started M is in many ways just that much more difficult to deal with. He yells more, tantrums more, even hits more.

Hubby is losing control of himself and blowing up and I find myself blowing up at Monster more often and it feels as if we will all implode soon. I'm so grateful that we only have this one child because our family already feels out of control and chaotic. I can't imagine adding another child to the mix.

This is painful for me to write. I thought I was past this stage but I'm sitting here crying as I write this. Monster has friends down the street that he loves to pieces and they continue to come around and pester and treat M badly and we have kicked them out of the house but they strike when Monster is playing outside and Monster is so thrilled to play with them and I'm supposed to keep them away but Monster has to have friends. They're not the worst kids in the world - they just have shitty parents. And they offer a sort of perpetual energy and emotional unbalance that Monster seems to thrive on - like a nonstop roller coaster ride.

Which is how he likes his whole life to be, which is why he throws drama and trauma into an otherwise idyllic peaceful day. Today the whole DAY was about Monster - I played Indiana Jones Lego with him for a couple of hours and then he wanted to invite his Asperger's friend R over. I called and set up the play date. The only thing we needed to do was go out and buy a dishwasher. And of course this was Monster's cue to fall apart and make sure we all ended up upset because HE had to go someplace he didn't want to go.

I guess I won't start jumping to any conclusions. School starts in one week and then we will only need to worry about the neighborhood feral children on the weekends because their parents have a rule that they can't play on school nights. Thank goodness. And we ran into a little girl at the nearby park who M went to school with before he was placed in special ed and her grandma gave me her number. Maybe he can make friends with her and want to play with her all of the time? Maybe he will make friends at school.

I'm so tired of deluding myself into thinking everything will turn out okay for Monster. I am going into this school year far less hopeful and far less expectant. I don't have any desire to fight and don't anticipate any need. I can't take my frustration any further than I've taken it. The fight in me is gone and my son seems to be losing ground. All the help that fluttered in and out of my life has wandered off - they lose interest in the older kids, the lost causes, and go after the young, fresh ones with a new vigor - THIS one I will fix! - and the rest of us with the no-longer-cute, no-longer-promising, no-longer-fresh-and-malleable children are sent out into the world with our damaged goods, and we sink or we swim. We have no choice.

Watch as your carefully-constructed safety net disintigrates around your child

When I tok my new position I was under the impression that I would in the near future be able to work from home. I NEED to work from home, at least Fridays, because my son gets home from school an hour earlier than the rest of the week. Suddenly my boss is not budging. She isn't going to let me work from home and she is having difficulty trying to decide if I can work an hour later on Thursday and leave early on Friday.

I wrote her a very nice email and told her, I have no place to put my son Friday afternoons. I have nobody to watch him. No place within bussing range will take him, because of his behavior issues. This is why I requested intermittent FMLA, so I would be able to be there for my son when he needs me (she talked me out of it when the request got to her. She claimed she'd work with me and that I didn't need it).

Two days ago I get a phone call from my parent advocate. She wants to let me know she is leaving in two weeks and she's going into teaching. I ask her, is someone going to be given Monster's case? And she says, well, nothing is really going on right now, right? Right. I haven't called her in weeks. Months, even. So she isn't giving my case to anyone, but I can call any time and they will put someone new with me if I need it.

Yesterday I get a phone call from the people who manage Monster's PCA hours and pay B. Well, whoops, they tell me. We weren't supposed to be allowing people under 18 be PCA's. It's this new federal law and we put in B's request right before it went into effect and guess what? They denied her - NOW - at the end of summer, and we aren't going to charge you - don't worry about that - it was our mistake - but B can't be Matt's PCA after today. Sorry.

I say fine, I'll pay her out of pocket. It's four more half days and three more whole days. Not the hugest deal.

But the plan has been that the week before the last week of August Monster would spend the whole week at this place, in respite care, because the day school is closed those two weeks, and B doesn't want to watch Monster all day for two weeks. So one week at respite, and then two days there the next week, and then respite closes so B watches Monster the last three days of August. Then school starts.

Except that the woman who told me it would be fine for M to spend the full week there (he goes there every Friday, as it is) wants me to get together with M's aide to "discuss strategies" for when M "loses control". I know what this means. I know. They won't keep him the whole week. They'll tell me they can't manage him. I'll get stuck staying home with him because a whole week is just too much for M to handle and he's getting to stressed and respite can't handle him.

Nobody realizes how transparent that request is. I've been asked to discuss strategies so often that I know exactly what comes after that. This is the "we did everything we could to work with the parent" step that they need to feel okay about kicking your kid out.

I feel as if I am slowly unraveling, just like Monster's net.

"Husband is unsupportive and rude..."

Yesterday was the second home visit from the caseworker for Monster’s day program. She’s supposed to be discussing with us what sorts of things she can help up with for M, what sort of services she has available, books for up to read in our spare time (haha!), but it’s obvious what she’s doing. She’s observing us. She’s checking on the housing situation (and the house was/is trashed right now, BTW), she’s seeing how we interact with Monster. She listens for the tones of our voice and the things we do wrong when it comes to caring for our son.
It’s annoying enough, except that Hubby hates these people (they have promised too much, let us down too much, hurt our child too much [and I mean “these people” in general – teachers, principals, caseworkers, aides, etc] and he is barely civil to this woman. I can picture her writing in her notes, “Sullen, unsupportive husband”. And while I don’t care what these people think of us, I think it may be nicer if Hubby just TRIED to be friendly for once.
Oh well – at least I get to come out looking as the victim in all of this; “Monster is supported by his mother, while husband is present but emotionally distant.” It’s funny, because he isn’t like that at all. It’s like he’s playing a game with these people. I don’t get it, but maybe he needs to understand that one of these people may in fact want to help us with M and maybe we should give them a chance.
We’ve been giving them chances for the past two + years. Nobody has really pulled through for us, without having me behind them, forcing then in the direction I want Monster taken.

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.

They're trying to fix my kid!

I haven’t decided yet if this afternoon program that Monster just started uses cruel and unusual techniques to get their kids to behave, or if Monster knows how to play off of my greatest fears; that he will be hurt, abused, made to feel bad about himself, laughed at, set apart from the other children, and, perhaps worst of all, given the tools to grow up and be independent.
Because, and I have to be honest here, there is already a part of me that is mourning, that is kicking a screaming, “IT’S NOT FAIR!” that “they” are turning my child into a child who is self-sufficient enough that he doesn’t need Mommy every time his life goes off track.

Of course the logical part of me sees all of the benefits to this. My job, after all, is to allow this child to become as independent as he possibly can be, while still allowing him to feel attached to me when needed (which will, sadly, be less and less, and is happening faster than I expected or wanted).

Along with his odd display of empathy over this weekend, I also watched him hold his own at his cousin’s high school graduation open house, where he never once hesitated to wonder if it was okay for him to get right in there with the teenagers and adults and play volleyball with them. He never once came looking for me. At one point I went outside just to see what my son was doing, but if I feared he was lonely, feeling left out, bored, needing me, I was sorely mistaken.

The least this afternoon class can do is somehow hurt my child, mentally or physically, in a way that I cannot allow to happen and I will have to investigate and maybe complain. But how twisted is it that in my mind the worst thing this program will do to my child is make him more self-sufficient.
And while I would never sabotage something so important, there will be the part of me that will need to process this, this loss of my needy small boy. So while I hope the school is as good as is promised, and while I hope they change his way of thinking into one of introspection and empathy, it will be putting a large piece of me out of work. And it makes me sad just thinking about it.

Empathy

For the first time ever last night, my son demonstrated emapthy for another person, other than us, his parents.
We watched the Chipmunk Movie last night, and at the end they show the evil guy who wanted to take advantage of the Chipmunks crying. And Monster turned to us and said, "I hate sad endings!" and started bawling. The three of us sat down there in the family room, Monster snuggled up on hubby's lap, and talked about how it is sad to see other people lose something they want, but that this movie was supposed to be a happy ending because the Chipmunks ended up with the person who really loved them and took good care of them.
We couldn't convince Monster that the bad guy really deserved to lose the Chipmunks because he didn't care about them really. But he cared, M insists, because he was crying.

It's proof that empathy is taking root and growing in his mind. This is a good thing. I hate to see him in tears over pretend movies about talking chipmunks. But at least he's learning.

Kicking, hitting: Other annoying things

Monster is very aggressive. Not so much at home, but daycare and school. Sure, we've had our share (mostly me), but he saves most of that for when he's overwhelmed around other kids and noise and lights, etc.

I don't blame him for it. It's part of whom he is. It's just that this is the part of him that the the rest of society really frowns upon.

So what do I do? He'll grow out of it, I've been told, and as he grows older the attacks do seem to decrease in number but increase in intensity.

And today was his first day at the afternoon program. When he got home I knew he would be extra-stressed; a new activity, a long ride home (the driver got stuck in road construction), and hot and sweaty from playing outside. What I didn't expect was the return of the hitting and kicking. Because he hit me today, and then he kicked me. And then when I was trying to help him get his swimsuit on for his lesson he was blowing in my face. Poking me. After the lessons, getting him out of the shower, he was doing it again. Blowing razzberries in my face. Yelling in my ear.

Sometimes I want to smack the shit out of him.

But he knows as soon as he does it that it was wrong, because he instantly looks concerned and says, I'm sorry, Mommy!! I'm so sorry!"

Of course I know I'm being played. But he only acts this way when he is really stressed.

I feel like a battered wife, only it's my child who batters me.

This afternoon program, added to the classroom he started in Kindergarten and will stay in next year, are supposed to teach him how to deal with his stress better. I don't know how. I can't even deal with my stress. More power to them, I guess.

I'm just a bit discouraged, is all. Here is this place that is going to change my son's bad behaviors, or claims they will, and the first day he's back to doing things he hasn't done to me in over a year or more.

I have to give it time. I know this. He will get worse before he gets better. I am expecting this. He will never get 100% "better". I know this too. But sometimes I wish I had a crystal ball so I could see if all of this is worth it, if it really will make his life better for us to put him through all of this. Because sometimes I wonder if what we are doing is more damaging than helpful; the labelling, the placement with emotionally/behaviorally disturbed children, the need we all have to improve on this child by removing part of him, weeding out the parts society doesn't like and making room for the acceptable stuff to grow.

Hell, who am I kidding? I hate getting hit and kicked. I hate having to find him new after school programs, and picking him up from school.

Plus, I think he feels proud of himself when he conquers those demons inside of him. Those times that he chooses to yell instead of hit, or chooses to kick a ball instead of the kid next to him (who may or may not even be involved in the issue). He understands that whatever he needs is inside of him if he can just find the right paths.

I hope that this place gives him a really good map.

I'm tired of getting hit.

my baby boy

Monster is 6, but I still see him as my baby. This big, grown-up kid who has graduated kindergarten is still, in my mind, my tiny boy. I think we moms do this when we feel our kids need extra protection. Or when we need to see the good, sweet child that exists under this rotten brat we see too often. I know that I remind myself often that this is my tiny baby, and it takes away some of my impatience, and gives me back my perspective. What do I want to see when I look at my son? Basically, the choice is mine. I can see a monstrous child who doesn’t do what is asked of him and who hits and bites and has trouble with other kids and teachers, or I could see the small, vulnerable child who is confused and lost in this strange foreign world and needs my guidance. He’s the same kid, either way that I look at him. But if I see the bad kid, what will Monster do? He’ll see that I look for the bad behavior and think to himself, “I’m a bad kid.” And he won’t believe in himself. He’ll decide, I’m bad, so I might as well not even try. If I see the good kid who needs some guidance, Monster will say to himself, “I’m a good kid; Mom and Dad see it, it must be true.” Is this spoiling him? I think it’s the only way he will be able to grow into a contributing member of society. I think it’s imperative to build his self-esteem to make sure it is rock-solid now. I have probably said this before, but there will be enough people out there trying to tear my son down. There are people who have already done this to my son. So, at home, I OD him on self-esteem. I tell him he’s smart, and wonderful, and sweet, and caring, and kind, and very, very lovable. And I tell him he can be my little baby for as long as he wants, because he likes being babied. At this point I see him pulling away, going out into the world bravely on his own, but when he comes back to me he wants to curl up in my arms and be helpless and sweet. And I believe doing this for him will give him the confidence to go farther and farther out there in the world, knowing that he can always go back to being my baby whenever he needs it.

Plus, I just love it. I still get to hold my baby in my arms, even though this baby’s legs and arms are long and gangly and have sharp knees and elbows which bump and jab and seem to get in the way. But then he settles, and we both sigh, as if we have both found our natural state – my arms around my son, and he with his head on my chest, and he sighs and I feel his breathing slow and his heart rate calm. And I feel myself calming too, because this is the “fix” I wait for al day long.

My baby is back, for whatever short amount of time he wants to be held. I love it. My Monster is a sweet, lovable, wonderful Monster. He is so grown up in so many ways and I am so proud of him and tell him often how proud I am when he is independent and brave. I don’t want to keep him my baby forever. But if he wants to be my baby for a half hour at night forever, I will never ask him to stop.

Trying to listen to instinct and trying to teach it

I woke up an hour before my alarm went off today and my first thought was about the person who offered to get my son a cup of water when he complained he was thirsty, and then brought him hot water instead of cold or even room temp. And when he spat it out and started screaming and crying, she laughed and laughed. The DCP provider in charge yelled at her for doing that, but she thought it was the funniest thing ever.

Obviously his mouth wasn’t burned, or he would have said something that day. As it was, I didn’t hear this story until about a half of a year after my son left this home daycare. Apparently sometimes “friends” would come over and help the DCP with the kids.

This was an adult. Who took some sort of pleasure in torturing a young disabled boy. What is wrong with people?

And what is wrong with me that I wasn’t able to prevent this? I screened the DCP, I called the references. I spoke to parents as they picked their children up. I checked for a current license. All in place. I would ask my son about his day, and get the same answers each day; “How was your day?” “Fine” “What did you do?” “I don’t know”.

If I had known about this at the time I would have gone over there and kicked someone’s ass. So maybe it was better I wasn’t told.

I idolize Gavin DeBecker and use his book, “Protecting the Gift” as a sort of bible on how to teach my son to be safe from creepy, evil, rotten people. But part of what a child needs to learn early is to say they will tell, and then to tell. That day. And since that event with the water, my son HAS told me of people treating him badly. Usually the same day. I accept the news calmly and thank him for telling me. I worry though that this part may always be difficult for him. When he told me about the water thing, the next words immediately out of his mouth were, “Don’t tell DCP! They’ll be mad at me!” Which led to a long, gentle discussion about how he doesn’t need to worry about people getting angry with him for telling us things if they’re true. That hubby and I will protect him no matter what.

Still, for some reason, this water thing haunts me. What kind of sicko takes pleasure in tormenting a 4-year-old boy who doesn’t understand why he’d be mistreated? And why would a sicko like that be in the same building as my child while he is being cared for? This was a friend of the DCP, which makes me wonder about the DCP too.

Thank goodness that place is far behind us. But obviously I am still upset about the things that my son alleges happened there. And if these things did happen, they are still floating around in my son’s mind, in some sort of ether world from which they eventually emerge and get spoken by my son. Where was this memory 5 months ago? Was he so traumatized that the memory went away until he felt safe enough to express his pain?I want a book that teaches me how to keep my special needs child safe from bad people. I haven’t found one yet.

Monster’s Aspie friend wants him to spend the night in the next couple of weeks. And I worry about the father, that maybe he’s a secret child molester and how will I know? What can I do? Just say no sleepover? At some point I need to let my child out into the world, and be able to trust that he knows how to protect himself. I need to be able to know that he will tell us immediately if something happens.
And maybe this is why this memory surfaced for me now- as a reminder that my son may not be quite ready to be alone with other adults in a home situation. And I don’t know how to know, because I can tell my son he needs to tell us and he will tell us, yes, I will. He told us that before we placed him in that home daycare.

He was better when his aide at school started mistreating him. He would tell us. I would call the director and tell her my son says this happened, and I know it may not be true, but could you please speak with this person and find out what happened?And he told us about the marks in his armpits the day it happened. He understands this stuff is serious and that hubby and I are going to always do what we can to protect him.
But maybe I need to wait on this sleepover. Maybe this is all my half-conscious brain was telling me.

First day of respite

Monster LOVES his new PCA and the two of them have apparently had a great time together Mon-Thurs, but today is the first day of his Friday respite.
I am in a state of panic over this. M was super-excited to be going today but we all know how well Aspie kids are with new situations. If we lose our every-Friday care we're going to have to do some major scrambling.

It doesn't help that I am still in a panic over this mole, although I am a little less determined that this is a death sentence. July 3rd the surgeon will look at it, and hopefully be able to remove it then and there.

It just makes me realize how small these things are in the long run, the things like letting my son fal asleep with me and cuddle with me and need me so much. I would hate to reach the end, however it may come about, and think to myself, what if I HAD spent more time just holding and loving my son? What would have been so wrong about letting him sleep next to me every other night or so? Someday Monster will decide he's too big for any of this stuff, and I would miss it.

He loves "camping out" with hubby or me (which just means, sleeping with us). He is like a cat, in that he pushes himself completely against you so the heat from the whole side of his body absorbs into you. I've moved him away a couple of times when I was really hot, and the little body just comes sliding back over against me.

I feel like all of this contact is so good for him. It reinforces over and over what "good touch" is, as opposed to whacking a child to get their attention.

Anyhow, I am now stressed over two things, and starting next Wednesday there will then be the afternoon treatment program for me to worry over.

I guess thank goodness I'm here to worry over this stuff.

Maybe not so brave

I thought that having Monster in my life had made me brave. And in many little ways, it has.

But then I get this mole,

and I am falling apart.

I need to have it surgically removed. It's huge. I tried to ignore it for 6 months, hoping it would simply disappear.

But then the other day I caught a glimpse of it (it's at the top on the back of my thigh) and thought, wow, I really think that maybe this is something that needs checking.



I hate going to the doctor. Doctors have been mean to me in the past and they scare me. And this has NOT changed since Monster entered my life. Sure, I can talk to any doctor about my son, request anything, no matter how rude or bitchy or stupid the doctor thinks I am.

But for myself? Not at all.

So driving home from the doctor's office I start thinking, I can't die. And of course if I had been a truly devoted mother it would have been because I need to keep helping Monster, need to keep fighting for him.

But the truth of it is, I am scared of dying because I want more time with my son. I want to hug him more and hold him more and let him fall asleep next to me and I want to look up from whatever I am doing and be awestruck by the beauty of this child who came out of me and I want to hear the sweet chirrup of his voice and I want to laugh at his incredible sense of humor.

I don't want to leave yet. For all the most selfish reasons.

Of course, I'm worrying before I even know anything. But that is nothing new.