3-1/2 hours to go (and then 4 more days)

Monster is spending the day at my company’s drop-in daycare. And so far he’s doing well.
The PCA flaked out on us. She said she could watch Monster starting last Friday, but then emailed from her vacation to say she had gotten mixed up and wasn’t coming home until Friday. I had to take that day off to watch Monster. Then Sunday I called to make sure everything was set for this week and supposedly she has appendicitis or gallstones or whatever. I am so glad I had a backup plan. I just hope Monster is good there. He just needs to get through this week.
I don’t know why but I have let this whole situation get me down. I feel like I’m sliding back down into darkness. My son is 6 and is so bad that no place wants him. But he isn’t bad. He’s wonderful. And I look into the future and wonder how often I will be left scrambling for someone or someplace to watch my son. We hopefully have a PCA for all summer, but then next year we have to figure out after-school care, or if we’re going to keep our hours the way they are now (hubby goes in super early to be home for the bus). And then the school closes all of the time. If this drop-in place can deal with him I can put him back there.

I’m just so tired of not being able to rely on people. I have trust issues to begin with and when people let me down I am doubly disappointed, because I really want people to come through for us, even if I don’t expect them to.

It's done!

The mediation process….

The mediation guy contacted me for the first time yesterday, by phone. He asked me some questions regarding what I want from the mediation, etc. I told him I wanted Monster allowed back in. He said he’d tell them and call me back. He just called.

The lawyers for the school say that the after school program cannot accommodate my son, period. They are not there for education; therefor they don’t need to follow the same rules. It’s a bunch of BS, because I know the laws under Section 504. There have been other cases that have been won by parents of disabled children against after school programs.

Anyhow, the mediation process is over before it began. They aren’t budging. I said fine, pursue the case. At least I didn’t waste time on a long stupid meeting to be told they didn’t want to work with us at all.

Musings on happiness

An online friend of mine asked theses questions; “Are you happy? What is happiness to you? Do you consider yourself to be happy most of the time?”

Am I happy? It depends upon how you define happiness. And as I thought about this question, I realized my definition of happiness has changed quite a bit since I was younger, and is almost unrecognizable when compared to my definition from when I was a child.

Since Monster came into my life my definition of happiness has once again changed drastically. The things that make me happy now are far from what I used to think would make me happy in the past, or what I considered happiness to be.

I was a very unhappy child. Looking back with the knowledge I have now, it’s easy to see that I was clinically depressed. I developed an obsession with death and suicide at a very early age, and my memories of childhood are all awful ones. Even the better memories of playing with friends outside of school seem colored by some sort of dark shadow that hovered about me, always reminding me that having fun did not last, happiness and play were only distractions for the moment. Most of my life was fear, anger and sadness.

In school I was a misfit. Not so much the friendless kind, because all through school I had friends I played with after school and on weekends. But in school the popular girls were torturous and my friends knew better than to draw attention to themselves by defending me. I didn’t blame them one bit. The relief came in middle school when a large group of wonderful girls took me in as one of their own and I had a large, safe place where I belonged. None of us were catty or mean to each other. It was a safe haven for three years. Those years were in many ways happy for me. We went roller skating every weekend and all summer long and those are some of the best memories I have of my childhood. We had freedom and we had unlimited time and energy.

High school though ended up being one long struggle to find happiness in drinks, drugs, sex, etc. And I had FUN, tons of fun in HS, but at the same time I was not particularly happy. So there’s my first clue about happiness – When I was having the most fun of my whole life, I was not happy. So fun does not = happiness.

Out of HS I got married and felt trapped and restless. Not happy. I did some really stupid things in my pursuit for happiness. A few times I came close to destroying everything in my life. Part of me believed that happiness could be found in freedom. To this day I long to have grown up a biker, a gypsy, a loner – someone free to come and go as she pleases, with no ties and no one to need me. But I also longed for the feeling of belonging – I have spent a good part of my life wishing I were American Indian because a) Indian women are beautiful, and I wouldn’t mind being beautiful, and b) they have a history that goes back forever and joins them cosmically. They have a sense of belonging I will never have.

If I belonged, or if I were free, would I be happy?When my life spiraled out of control and I ended up suicidal in a locked psychiatric ward, it was time for me to admit that my attempts at happiness were failing completely.
I think that was my first bit of understanding that happiness was something that needed to be found inside myself.

Antidepressants lifted me above the chasm and got me back onto solid ground. And for the next ten years I simply existed. I worked. I loved my husband. I tried to make friends but discovered I didn’t really like having friends and didn’t have much in common with anyone. My friend was my husband, and we did everything together. We did make friends at some points. We hung out with a couple who were hilarious and we always laughed so hard when we were together. But our times together revolved around drinking, and at some point the two of them would get too drunk and start fighting. Every time we got together. I finally had it and kicked them out one night and we never heard from them again. And my best friend before I moved across the country was another one who always wanted to drink. We had so much fun together and laughed all the time, but once again, we weren’t exactly happy, although at the time I think we thought we were. When I moved she got angry with me for abandoning her, and that friendship ended.If I had friends besides my husband, would I be happy?

Then Monster comes along. I was convinced I HAD to have a baby. I don’t know why. I just knew I was getting old and I needed to try.
Monster changed my life completely, but not in a good way at first. For a good two years after his birth I would find myself thinking constantly, “WHAT have I done with my life!?!” The child would not sleep. He was constantly fussy and unconsolable. The only thing I could do to comfort him was nurse him, which I ended up doing constantly for almost two years. Hubby and I fought all of the time because I was spoiling Monster, while I was grabbing at straws and doing anything I could to help this baby to not be so miserable. We fought over having him cry it out. We fought over how often I breastfed. We fought over whose turn it was to get up with this baby who didn’t sleep through the night until he was almost 4. I knew I wasn’t happy then. I felt like I had done something horrible to my life and my marriage. But I loved Monster so deeply that I never regretted having him. No matter how bad things were my Monster was beautiful and special and my love for him was fierce and strong.

As life crumbled and I sank deeper into despair over everything – my son, my lack of parenting skills, my husband – I spent many nights considering cashing it all in. There was so much unhappiness in my house that I didn’t know how to survive it.Through all of this, Monster grew and as he became more reconizable as a person I fell even more deeply in love with him. He started to bring me joy and I started to think we were through the worst. This was happiness. I survived the worst and got through. This was cause to celebrate.

But then Monster started getting kicked out of daycares. Something was wrong. And of course, according to everyone, something was wrong with ME, not Monster. So I hated myself for being this parent who couldn’t keep her child nuder control. I was the mom other moms gave dirty looks to when I entered the daycare for pickup. My son was a bully with rotten parents.

The Asperger’s diagnosis we got when Monster was 4-1/2 offered quite a bit of relief. I was able to stop hating myself and being angry with M for not being a “normal” kid. Even hubby started to come around and realize that these things were not my fault.

Through all of this I have decided that “happiness” to me is simply a state of contentment.When Monster doesn’t get kicked out of school, when my job is going well, when we are all at home together in the evening and Monster is happy and not crying and/or angry, this is contentment. Sitting in a quiet home knowing my loved ones are all safe and sound and we’re all together, that is happiness. Knowing on cold nights that we are fortunate enough to be someplace warm; that we are able to give my child food and clothing, and the extras that he needs – classes, therapy, etc. This is my happiness.
Getting the school to agree to something I ask for. Getting OCR to agree that my son has been discriminated against. Being able to help others who are struggling with everything I have struggled with the past couple of years – these things make me happy.

Happiness is fleeting and so when it settles around me I relish it now. It does have a lot to do with my state of mind but when I am stressed over five different things going on with Monster and school and daycare I am not able to find that place where I can be calm. This is probably something I need to work on. It’s only when the resolutions have been reached that I can rest. Rest is happiness.

Have I lowered my standards as far as what brings me happiness? It appears that way. But maybe what I have been forced to realize thanks to Monster is that happiness is not something I can buy or acquire. It’s something that I give to and receive from those that I love. Monster has brought me more happiness than I ever could have imagined, and instead of worrying over whether or not I deserve this happiness (which is how I’ve always viewed my own happiness in the past), I know that I have struggled, fought, screamed, cried, bitten, ached, ripped myself apart, in order to reach this place of quiet and contentment and rest, my new happiness.
And since I also know now that the fight for my son will never end – the places will change but there will always be problems that need my attention and sometimes I will need to struggle again – I know to appreciate the brief moments as the sweep by. They are well-deserved and I do my best to allow them to settle me without looking ahead. This has been something I needed to learn too, because I always used to spend my peaceful times waiting for “the other shoe to drop”. Now I know the shoe is going to drop. So I relish the moments at the plateaus, where I stop struggling and rest. Rest is happiness. Quiet is happiness. Warmth and shelter is happiness. Holding my hubby and child is happiness. Sleep is happiness. Books are happiness, and having the time to read them is bliss.

These are my lessons, learned hard and well. Thanks to my beautiful and amazing Monster. He is my main happiness.

First day at new school - and "tooths" excitement

A small, happy boy called me at work yesterday to describe his day to me. He was so talkative, and not at all stressed and worked up. He talked to me for 20 minutes about everything that had happened at school. He was very happy. If I had to base everything on this first day (which I know is impossible), I’d say we’ve made the right choice and Monster is in the right place.

Not only does he seem relaxed and content, I FEEL relaxed and content. As if I have finally found my son someplace where he can flourish.
It didn’t help that my SIL told me on Sunday that EBD classes are ALL WRONG for ASD kids and she couldn’t believe they were doing this to him (and implying, I guess, that she couldn’t believe I had allowed it). I know that she only has her understanding of EBD classrooms, but I spent a long time researching and questioning about this place until I felt right about it. And I also found out yesterday that it in not an EBD class, exactly. Yes, most kids in there are EBD but they have had many children go through there who just need the help this teacher can offer. Like Monster. In other news, he was eating lunch yesterday and felt a crack and freaked out and finally his aide was able to look into his mouth and see that Monster had a VERY loose tooth. Monster cried for an hour at school, and then came home and cried for two + hours at home, telling us he wanted it out but he didn’t because it would hurt, back and forth, over and over, in a panic over this loose tooth that was driving him nuts. I finally got him to agree that he wanted it out that night, so I grabbed him, and while he screamed bloody murder I reached in an pushed the tooth forward just a bit and the thing popped right out. Then he screamed and cried for another 45 minutes because it bled. He refused to touch the tooth. Hubby and I were telling him how proud we were, how grown up he was, how excited we were, etc. But he just cried.

He finally got calmed down and asked me to take a picture. Then he seemed fine.And that night at bedtime I went to put his blankets over his ears like he asks for every night (to keep the monsters away), and he told me no. I said, but you always want your blankets that way. He said, “Momma, I know that when I was 5 I wanted my blankets like that, and for when I was six a little bit, but now that I have tooths losed, I am a big boy and don’t need that anymore.”

Too cute. Way too damned cute. And growing up SO damned fast.

The beginning - the end.

The little bus pulls up right on time and I walk my son up to its doors. The bus driver introduces himself and I introduce myself. He then introduces the aide who rides with him. She is buckling Monster into his seat. They seem nice, but his old bus driver was such an obvioulsy kind and caring person. These people I don’t know yet. What if they say or do mean things to my son?

This morning while he ate breakfast Monster told me he was going to be mising pajama day at his after school program. I told him, sorry, but we had to take you out of there because they weren’t treating you very nice. Sorry you have to miss jammie day. And I’m partly angry that I am forced to lie to my son because I refuse to tell him that he was not wanted there, that he was too difficult for them, that they didn’t like him at all. His aide liked him, which was why I knew he was safe there. She would not let him know the truth.

But now that’s over and my son is excited (his word) to go to his new school. Please god or whoever you are up there please make this a good place for my son. Please let this be the right place for him right now because I made my decision based on the best information I had but I still don’t know why this school doesn’t have an ASD program.Please let all of the teachers, aides, special ed team, etc, do what they promised and make this a positive experience for my child.It doesn’t help that my sister in law yesterday started in again about how these EBD rooms really are NOT right for ASD children. It made me feel bad again about this decision I made for my child.

Please let everything be okay.

Interesting timing

The school district is now telling the OCR that they want to do the early complaint resolution, or mediation. Interesting time to tell us, since Monster’s official last day at the daycare is tomorrow. He isn’t going, though. Hubby is taking the day off to spend with him (Thursday and Friday are no-school days, and Monster would have to spend the whole day at this place that doesn’t even want him). I didn’t mind when he spent 1-1/2 hours there each day. A whole day would, if anything, just give them more ammo against my son.
I’m curious now how quickly this will go through. I have been wanting to get ahold of someone at Community Ed to ask them, without being a smartass, but seriously ask them if my son could be enrolled in summer community ed programs, even though the after school place didn’t want to deal with him. But I’m sure I’m not supposed to talk to anyone over there.
This ought to be interesting. A friend of mine told me her sister got so sick of dealing with all of the bullshit her daughter’s school was trying to pull on her ASD daughter that she went to school and became a lawyer. Maybe that’s my calling. To become a lawyer to fight for these kids. Lord knows they and their parents get jerked around enough. The horror stories I’ve heard just in my little support group make me so angry. We don’t deserve to be treated like crap when we’re just trying to make sure our kids are getting the education and care they deserve.
Now I’m a little excited. I want this to happen soon – I’m so impatient!

tears free dropoff

Today I dropped Monster off at his new school. He will spend half the day there and then head back to his old school with cupcakes to have a little "goodbye" party with his classmates.

I didn't cry. Monster was excited beyond belief. Then his new teacher walked in to meet us. M suddenly sobered up and closed himself off. The teacher sat down next to him and asked, "How are you today?" and the kid who was 10 seconds ago spinning and dancing and jumping around answered, in a small voice, "kind of okay".

What a thrilling moment for me, because never before has this child expressed, in words, that he is nervous, worried, etc. He usually just throws a fit. But this teacher - she's so gentle and calm and kind, that instantly M is telling her about his feelings, something he almost never does with me or hubby.

I reminded her to not forget the cupcakes when Monster gets sent over to his other school. I showed her the bag with a change of clothes that she can put into his cubby. She will write me reports on his days.

I drove away and waited for the tears to come. They didn't. I felt happy and excited for my boy and I think this fresh start may be just what he needs.

You know how you want special moments to go the right way?

Monster’s last day riding the “big bus” today.

And of course it was traumatic. It couldn’t be a simple, happy day. Monster was first in line but when the bus pulled up the brothers behind him climbed on first because M had been playing and didn’t even have his backpack on. So when they climbed on in front of him he threw himself down on the ground and started crying. I was hissing, “get up, GET UP!” and trying to shove his arms into his backpack straps. I finally got him onto that bus and he waved at me as it drove off, once again with tears just streaming down his little face. Sigh.

We had a talk about the benefit of the little bus this morning on the walk to the bus stop. The little bus will stop right in front of our house. Monster will always be “first” because he will be the only one getting picked up from our house. He wanted to know if he would be first on the bus and I told him no, probably not. But first in LINE, always. He seemed okay with that.

I can’t help it. I still think that my son will be ostracized by the other kids who know he comes to school on the “short bus”. Remember the joke, “Yeah, you were one of those kids who went to school on the ‘short bus’!”? Are kids beyond that now? Everyone assures me they are but I have my doubts. My son will be arriving at school in a bus obviously for special kids. He will go to a classroom for special kids.

What have I done? Is this really what he needs? I wonder if this was a budget cut move? Put the kid who needs his own aide in a classroom where they can get rid of his aide. No. I can’t do this to myself. I made this choice based on the best information I had. Monster’s IEP doesn’t change much – just the Level 2 changing to Level 3 (100% time spent in special ed setting). The rest – the positive behavior plan, the permission to chew gum or leave the room when stressed – all goes with him. He will get everything he had at his old school, plus a calmer, quieter “home room” setting. Plus a chance to learn how to pay attention and get his classwork done.

I wish I had the guts to tell them to fuck off, that my son is NOT going to be turned into a worker drone robot. But I see the need for all kids, and especially kids like mine, to learn what school teaches. He NEEDS to learn to respect teachers and pay attention and do what he is asked and get along with his peers. I could raise him to be another Unabomber instead, but I want him to have a regular life. Is that bad?

I am a “Question Authority” person. I allow my son to have his say if he thinks I am being unfair (his dad is this way too). I want him to think for himself and I want him to be an individual. He used to paint his nails and the kids at his daycare would tease him and he would tell them, “it’s not for girls only; it’s for whoever likes it.” I don’t want that lost. I don't want him to develop that fear of being different, of being set apart from his peers. Because isn’t that the ultimate authority for most kids – their peers? So teaching my son to sit still and get his work done seems to go against what I truly believe. But he needs to learn, because what good is an ignorant rebel? I want him to swim against the tide but how does he learn to do that if he doesn’t understand how the tide flows to begin with?

I guess I just need reassurance that I am not damaging his psyche beyond repair by putting him in this classroom. I want a guarantee. Why the hell doesn’t any life choice I make for my child come with a guarantee? It makes life pretty scary sometimes.

The things I don't talk about enough

Last night Monster and I put together the Spongebob Lego van I bought him for absolutely no reason except that we both love Lego.
He cracks me up. He makes really funny jokes, both verbal and visual. He has a dry, snarky sense of humor (my gift to him). We sat together last night building that bus and laughing about whatever weird thing M was doing. It was so nice. I do my damnedest to hold moments like that in my heart so when the horrible things rear their ugly heads I always have in my mind the sweet small boy who loves to laugh and joke, and not the horrible one who hits and kicks at school and daycare.

These wonderful little moments happen often, and sometimes it's hard to see them as they weave their way through the rest of our lives, the difficulties and struggles. But then I look again and there they all are - the shimmering gold threads that make the whole tapestry of his life look dazzling and beautiful, and hopeful and inspiring.

Someday the gold threads will outnumber the drab ones.

More backstory

Long story short about the aide - Monster had been coming home and telling us about things this aide had done but when I questioned the director she always denied everything. Then M got written up for hitting and kicking, and when the director talked to me she thanked me for being so understanding and how they were still working to get everyone trained on CPI and it was one of her top priorities. I wasn't sure what she meant by that because Monster hadn't said anything. So that evening I asked him what had happened at daycare and he said he had come in from recess and refused to put his shoes on and the aide and two others had held him down to get his shoes on him. I emailed the director and told her what M had told me and asked her to have the teachers write down their version of what had happened. She never got back to me and I called her back a couple days later - she told me nothing had happened - she asked them and they said that Monster had tried to run out of the building and they had blocked his way and "somehow" got him to the calming room but nobody had touched him. Then she said "I know what I said before about getting everyone trained in CPI, and I do think it's important, but nobody touched Monster."
A couple of weeks later the daycare took the kids bowling and Monster told his aide, jokingly, "I'm going to shoot you." The aide told hubby about it when he picked him up and we talked to M and told him that it wasn't okay to talk like that. Then a week after that the director met hubby when he came to pick up Monster, which means she made a special trip over there because her office is in a different building. And she starts telling hubby how we need to keep M out of school for the next two days because he is too much for them to handle and he called his aide a poopy head and used the F word and he's been hitting and kicking and the other day he threatened to bring a gun to school and kill his aide. But she was lying - she was talking about the time he said he was going to shoot her.When I got home I called Monster into the room and was talking to him about using bad words and he said, "Do you want to see what D___ did to me?" and I said yes, and he lifted his shirt and had big read thumb prints in both armpits. He said she had grabbed him hard and pinched him and picked him up to throw him into the calming room. I thought, that's it, I've had enough, and we took him to the police and filed a report. Also M had complained to the aide that his armpits hurt after what she had done and she looked at the marks and told him it was a heat rash and she gave him wet paper towels to hold under his arms. That was the day the director met hubby at the school.

After we made the police report the officer told us to take him to the doctor to see if it was a heat rash, since that was what the school would claim. So we took him to urgent care and waited there two hours to have the doctor look at him. He took pictures and filed a report too.
So I raised a HUGE stink and got the director fired for lying to us and the aide suspended and everything. It was a nightmare.

Now we're waiting to hear the school's response to the OCR complaint.

The decision

After a two-hour meeting this morning with two schools’ worth of special ed teams and the parent advocate and me, we have decided to move Monster to the special ed program. I cried when I told them that I wanted to move him, because I still hate having to do this. But they had good answers for all of my worries, concerns, questions, etc. It does seem like this will give Monster a chance to shine and really be his true self, while also learning things like paying attention, getting his work done (work first, play second), etc. And hopefully it will help him learn to deal with his emotions in a more positive manner.
So here I sit, sure about my decision but just a bit heartbroken. This isn’t what I envisioned for my son. I hope I have done the right thing for him.

Catching up with old friends....

Hi!!

I’m sorry I haven’t been around much. Things have been hectic here – I’m sure you’ve both been there.

I wanted to see when we could all get together. I probably won’t be bringing Monster because it’s easier to talk when he isn’t around, but we can still do Joe’s or Olive Garden – either one is fine with me. Right now Wednesday nights M has swimming and Thursdays he has OT. Tonight is his first swimming lesson – we’re really excited. It’s through C___Center and it’s one-on-one with a recreational therapist. It’s really cheap too which is nice.
I figured next time we get together I would spend the whole evening just catching you up on everything so I figured I’d write this little book just to bring you up to date.

Monster is being kicked out of his after school program effective March 20th, because they claim they can’t handle him. Interesting thing is; this is happening less than two months after we went to the police because M had been intentionally hurt by his aide (who was not trained in CPI or how to work with ASD kids). So we think they’re doing this out of retaliation. We got the Office of Civil Rights involved and they are now investigating the school on the basis of discrimination and retaliation. We should be hearing from them soon.

Monster is going to be starting a new special ed class March 24th. He can’t hold it together in larger classrooms and still has the behavior issues and this new classroom will hopefully help him with both issues. It’s in the same school district but on the opposite end of town and M will be bussed there every day.

We got PCA hours for Monster but they haven’t been approved by the county yet. We’re hoping to find someone to watch M this summer because no matter what happens with the OCR case don’t want him at the old place all summer.

I have an interview with W___ Center early April to see if Monster would benefit from there, and if he does, he will go there half days all summer long and it would be paid for by medical assistance. That would help with the PCA since we’d only need one half days. But that’s still up in the air too.

I just found out yesterday that I got a new job – still at (same co) but it’s a grade level up with a 6% wage increase and 3 weeks vacation per year instead of 2. I am hoping I might be able to work from home quite a bit with this new job, which may also help in the summer, since I would feel more comfortable if I was home when the PCA was there with Monster.

I have been stressed to the point of being ready to snap – it all started when Monster got hurt by his aide – it just started a whole domino effect of everything falling apart. After we filed the police report the after school place told us the aide was on administrative leave so we couldn’t take M back. I had to fight them for a week and get ahold of the State Board of Education section 504 specialist before I got them to agree to find another aide and take him back.
So. That’s it in a nutshell. Sorry to write a novel. Like I said, it would take forever to catch you all up at dinner.
Let me know when we can meet up again – even a weekend day would work.

-Pan

A day in the life

This has been one of those roller coaster days.
I was SO depressed this morning. I'm worrying about the meeting tomorrow about Monster's placement. I am trying not to worry about it because they can't MAKE me do it, but I'm still worrying.
Then I found out I got a job I've been trying to get. I get a pay raise, a bump in the pay scale, an extra week's vacation, etc. So cool. Now I'm happy.
Come home to find out my son has gone berserk on the playground at the after school program and hurt a bunch of kids, and then tore up the room when they took him back in. Hubby had to help pick up all the stuff when he went to pick him up.
I tell myself, he can't help it. But he can. But he can't. And when hubby leaves for his meeting I try to get the whole story out of Monster but he is so upset with himself and feels awful and he cries, so I finally drop it.
Call my parents to tell them about my big promotion and dad bursts my bubble by remarking that it's amazing they would promote, "with all the problems you've had there." WTF? Well, according to him all of those times that I work late or come in early to make up for all of the times I need to take Monster to appointments or watch him because he's suspended or go to yet another school meeting, well, that's a bad thing to do and most companies would frown on it. And I shouldn't let it get to me because my parents are just the way they are. But it hurt. And it took away from any happiness I had left about the new job.
Then we're wrestling on the bed. And he smacks me in the face - hard. Not exactly accidentally but sort of in an out-of-control way. We were playing wildly so I didn't punish him. But I did start crying, only because I had reached my limit for the day, and my beautiful little boy brought me his little bear ice pack and his little pink stuffed duckie to cheer me up. And I wonder again why I get so miserable, when this child is so wonderful.
Remember the movie "Parenthood", when the mom tells her husband, "I happen to LIKE the roller coaster!"? I keep trying to tell myself that life is a roller coaster and that I should sit back and enjoy the ride. But I'm not as adventurous as I used to be. Sometimes I long for the merry-go-round. Because the roller coaster never stops, and sometimes it's going up and down way too fast, and making me nauseous.
Tonight hubby is gone, so Monster and I are going to finish up Johnny Test on Cartoon Network and then we're going to snuggle up together and go to sleep. I guess my merry-go-round rides are all at night.
Every morning I wake up, and try to mentally prepare myself for another day of roller coaster. And sometimes I just don't want to face it.

I changed my mind. So sue me.

I have made an unpopular move this morning by letting Monster’s IEP team know that I am not ready to move him to the behavioral room. I can’t. It’s a feeling in my gut – it makes me feel awful when I think about it. The ONLY person who is congratulating me on following my gut is Monster’s psychologist, who says that what I told her makes it seem like it isn’t a good fit for him.So now even hubby is disgusted with me for changing my mind and slowing everything down. Because of my gut feeling that it’s wrong. I can’t give any better description than that, so I have no way of explaining why I don’t want him there. I don’t. It’s not the place for him. I wish I knew why. And I wish that sometimes my friends and family would back me up by saying, “You know what’s right for your kid. If this doesn’t feel right, then keep looking” instead of acting like I’m some sort of nut who is holding my son back from success.

Small victories

The letter came in the mail today. The Office of Civil Rights is taking Monster's case, based on discrimination and retaliation. The retaliation allegation is because we went to the police when their aide injured Monster.
I feel justified. I feel as if I am being listened to, that somebody thinks that I maybe am right about this - Monster is being discriminated against.
I don't know what will come of this and at this point I don't know how much I even really care. The point is, the school has been notified of the OCR investigation. They know that they had better be able to prove that they did the right thing. I don't think they did.
It's a small victory. But it feels solid, and it feels good.

Do I need a shrink?

There is this sadness that won’t leave me, and I have had good friends tell me I need to find a good therapist to help me work through this sadness. I have my antidepressants and anti-anxiety pills and sleeping pills. But yes, all my psychiatrist does is hand me prescritions. And he too has asked me to talk to someone about my issues.

Here are my issues though. I fight and fight and fight for my child. Every new incident with him is something I need to be notified of, and something that needs to be discussed and dissected by people at his school and up until recently his daycare.

Now I am in the process of looking for a PCA for him in the hopes that there will be someone I trust to watch him in the summer. This in itself is terribly stressful to me because I don’t know how I will trust anyone alone with my son now that he has been hurt at least twice that we know of by caregivers. So there’s that. Plus this outside behavioral school that is getting involved and may take Monster half days during the summer, to teach him social skills and behavior skills. This too is up in the air. There are intake interviews and a waiting list.

Now we are considering placing Monster into a new school and a special needs classroom for children with behavioral difficulties. And while I agree 100% that Monster needs to learn no coping techniques in school, I can’t get myself excited about this place. I worry I’m putting him in the wrong place and my stomach hurts every time I think about it.
I have sent an email to the autism specialist, the special ed coordinator, and Monster’s caseworker, asking them if this is it, if this is the only option, or if there is anything else out there? I have visions of a small, quiet classroom with high-functioning ASD children all in one place, learning how to behave and get along. Not this classroom that is strictly for bad kids who, aside from Matt, have abuse/mental health/neglect issues. How much does that really matter? I don’t know. They all need to learn the same thing but for different reasons. Hubby is all for it – thinks it sounds great. I don’t know why I can’t be happy with it, and why it feels wrong to me.
I have messages to my parent advocate and to my son’s psychologist to get their opinions, and maybe to clarify what is bothering me about this situation. I can’t get past the idea that my son is going to be placed in a classroom for “bad kids”. Because he is incredibly sweet, and I have heard and read more often than I can count that placing these kids in these classroom environments is like throwing the lamb to the wolves. I worry contantly about the kid. Is this why I need help? What can someone tell me, except that I do what I can and then let the rest go? I do everything I can, but I can’t let it go. There is too much at stake. My child’s whole life and future is at stake, and I can’t afford to slip.

There’s too much that is just “out there” that I cannot fix or control in any way, even though decisions need to be made. My child is at the mercy of so many people and so much of that is out of my control. It hurts and scares me. And I don’t know who can help me fix this. It’s simply a reality in my life and yes I’m sure there are coping skills I could learn. I could learn to let go. It won’t happen. I need to keep constant vigil for this child because he is vulnerable and sweet and trusting.
I’m not complaining. I love Monster so much that I am proud to do these things for him. I am not resentful that I am giving up my peace of mind to assure that my child gets what he needs. But giving him his best means that I cannot rest. I can never be satisifed and leave everything to someone else. That’s not how it works. This child is my responsibility and he needs me to be 100% involved. Maybe someday there will be a place when I can say, I have to let this one go and release my anxieties for the time being, but it’s not something in the foreseeable future, and it isn’t something I am counting on.
What else would a counselor do? Tell me to ask for help. And this is what I spend my days doing. I hunt down anyone I think I can get on my side and I ask for help. And everyone who can help is more than generous with their knowledge, their information, their assistance. But that assistance is only to help me find my way. They can’t carry me through this. They do seem to pop up at the worst times and hold my hand through the storms, but then they need to get back to their own lives, and I thank them for being my temporary guardian angel, and forge ahead alone again.
And yes I have a husband and yes he helps. He takes Monster to appointments and goes to meetings and loves Monster dearly and wants the very best for him just like me. But he is not 100% focused on Monster like I am, and I don’t expect him to be. Because I am the one who has been carrying Monster through this from the beginning, from the first time I thought something was wrong. I have been the one to seek out others to help. I have been the one to fight the fights that I thought needed to be fought, because my husband, dear soul that he is, will not fight for many of the things I fight for, because he doesn’t see the point. He sees it as me slamming my head against brick walls. And perhaps this is what I do a lot of the time. But I think of mothers in nature, of the frantic way mother animals act when their young are threatened, and that is how I feel. Aminalistic. Instinctually doing almost irrational things in the hopes that I am doing right by my child – that I am helping him survive and thrive.

I would lay down my life for my son without a second thought. And it is this that gets me in trouble, because each day I feel as if I giving aways pieces of my life to my son. And I give them gladly. And the depression is for the most part simply stress and the feeling of loss that seems to dog me always, as I give away myself to this child who truly deserves everything I have. I don’t resent him for it. But it’s a pain I simply bear.

I try not to slip into self-pity but I do end up there often. I only need to wrap my arms around my son, to hold him against me, to release that self-pity and give myself over to this child. I am not trying to be heroic. I am not any different than most other mothers. I am trying to make sure that my child, who was born with this disorder that will make his life more difficult, has the best chances at happiness and a good life. I am not afraid to give myself up for that cause. It is only because I fatigue and overwhelm myself that I make my life feel difficult and sad. Really, it isn’t. It is amazing and wonderful when I allow myself the chance to take a deep breath and look around. So. Do I need a therapist? Probably. But if she tells me to stop giving so much to my son I don’t think I’ll be able to listen. I can’t stop giving to him without hating myself for not being a good enough mother. It’s not a difficult choice. Any mother would make this choice if they had my child.

Daycare Saga and sadness

Tomorrow we go tour the special ed classroom we’re considering placing Monster in.

If we like it he only has two more days at regular school. I want to take him to tour his new school if he’s going there so I will probably take some time off work either Thursday or Friday.
I want to buy treats for a “going away” party at his school. I don’t know why but this breaks my heart. This kid is always leaving places and has never found a place where he belongs. I hope to god if we move him that this is the right place and he can stay there awhile.I feel rotten for the little guy. I fell like we should have done this right off the bat and not even attempted inclusion. But we didn’t know. We though this is what you do. Now we have a child who, from the time he was two, has been at 11 or so different schools and daycares. And kicked out of most of them. Lemme count here….

Children’s World – Expensive. They would NOT keep him awake the 15 minutes it took me to drive over there after nap time started, so he would not fall back asleep at home and it drove me nuts.

Home daycare mom – one day. Tried to kill my child in many ways. Worst person to watch children ever. Did not feed or change Monster’s diaper in 5 hours. Sigh. Kept my deposit. Back to…

Children’s World – One of the “teachers” in one of his rooms yelled at a little boy for crying – IN FRONT OF ME, and he got hurt once on the playground and nobody knew how – told me “Kids will be kids…” he was 18 months old….

Kindercare – Would not potty train to get moved to the older kids’ room. Threw tantrums. Hit a teacher and threw a chair across the room. Beat on other children. We got called into several meetings where we were told we were rotten parents who didn’t discipline our child and it was partly because Monster was an only child (also our fault). After three or four discplinary actions they tossed his ass out.

Wonderful Small Daycare Chain – a local chain with two teachers, an assistant, and a manager. They were wonderful with Monster. They loved him. They had a couple other “different” kids (one who, to me, was OBVIOUSLY Asperger’s – haha – joke was on me. I had no clue about my own kid). Six months later the owners announced that this one branch was not making money and they were closing it. Heartbreaking. Monster loved that place and we wouldhave kept him there until kindergarten if they had stayed around. So sad. I do say it was my blessing in disguise though, because it was only when we put him in the next place that teachers started telling us there was something wrong. The teachers at WSDC worked with him and never once did he get written up for anything.

Funky Overly Religious Lutheran Daycare – These people seemed very nice. They allowed Monster to stay in the toddler room even though he was too old for it, because the older kids’ room did not have diaper changing facilities. Monster was almost 4 now. He did really well in the younger kids’ room. At this time he finally decided he COULD pee on the toilet and got promoted to the preschool where all hell broke loose. They brought in behavior specialists. They wrote Monster up and sent him home. I do think they tried their best. One day Monster smacked a kid in the head with a building block and the kid needed to get stitches. This was the beginning of the end. This place recommended we contact our city’s special ed services. I put it off. I wanted to pretend it was the school that could not handle my child.

Wonderful Small Daycare Chain – Location # 2 – Nothing like the old place. Main teacher in Monster’s class HATED him – called me at work the first day and told me ABSOLUTELY they could not keep this child here – as if I had placed the devil himself into her peaceful little daycare and destroyed it all. I panicked and called our special ed dept and got an emergency meeting with the daycare. Sat at this meeting with this huge special ed team plus the teachers and directors of the school and wept as main teacher explained how none of the kids like Monster and none of them wanted to play with him because he was “bad”. The special ed team pushed through the test because they agreed he HAD to get out of there, and found us a nice-seeming home daycare woman.

Home Daycare Woman – she seemed okay. But she treated Monster like shit. She had two 5-year-olds and my 4-year-old, a 2-year-old and a couple of babies. She allowed the 5-year-olds to tease my son and would tell me it’s because he annoyed them. She let them play with the babies but Monster was not allowed to touch them. She let him bring a toy from home but the only time he played with it was if he snuck it past her while she sat and watched TV (all day every day) and hid in the little playroom. She made him nap alone. I had feelings of panic that I had to get Monster out of there quick, so I found him

Home Daycare Dad – this guy lived SO close to us, he was funny and nothing seemed to faze him – he took the kids to parks and took them out to play (Monster was not allowed outside ever at Home Daycare Woman’s house). He was there for quite awhile but then a couple of the other kids’ parents’ told him that Monster had to go or they were going, so Monster was tossed aside.

Happy Fun Junky Daycare – in a crappy-looking stripmall, these people took in my son and cared for him like the ones at First Wonderful Small Daycare Chain did. Monster had SOME issues there, but he always acted better for people who treated him with respect and allowed him a little leeway in the rules (what a concept). He stayed there until kindergarten. They were wonderful. I am so grateful for them and WSDC. That was a total of 12 months of my now-5-1/2-year-old child’s life where things went well for him. People understood him and cared for him and allowed him to be different without criminalizing him.

Kindergarten – We all know the story about that. He lasted at this first one for 6 months.

After school program – 6 months. They’ve hated him from Day One and threatened to have him thrown out before he ever actually enrolled.

So that’s 12 places. And he’s 6. He’s been kicked out of 5 of them. And now we’re moving him again, and this time it’s something we’re asking for.
He seems pretty resilient. He seems to look forward to new places as if they are fresh starts – maybe the kids at this place will like him, maybe things won’t be so rough for him, etc.

And this may be the right place for him, and we won’t know unless we like it tomorrow and try it. We KNOW where Monster is now is wrong for him.
I just feel so sad for him. He is such a courageous guy, that he does go to these places without much fuss and usually quite a bit of enthusiasm. Maybe it’s because I have given him the idea that he is an amazing and loveable child and he is still young enough to believe it and so thinks everyone really likes him. He appears pretty clueless about the people who don’t like him and I hope to god that this is true and not just that he is internalizing everything.

His caseworker told me at the meeting where we decided to place Monster in special ed that he goes to the nurse’s EVERY DAY with complaints – sore throat, stomach ache, etc. Is this his stress, or is he looking for some attention, or a break from the routines of his day? I wish I knew. I wish I knew what was going on in this little guy’s mind most of the time, because I worry so much that there is pain in there we don’t know about. The psychologist assures me I would know if he was in mental pain – it would manifest itself in pretty obvious ways. I haven’t seen the warning signs she talks of. He has fears, but don’t all kids his age have fears?

Anyhow. Tomorrow we’ll know. Tomorrow we’ll tell him, if he’s going there. Everything right now hinges on what we think of this new place. On top of all of that we still have summer looming ahead, and we have a few maybes but nothing is looking like a great option right now. I would have had him spend the summer in the after school program if they hadn’t kicked him out. Now we’re trying to find a PCA and not having lots of luck.

EH

I leave the morning meeting at my son’s school feeling oddly relieved and even happy. My son’s team and I have just agreed that in spite of their Herculean efforts at integrating my son into kindergarten, it is now time to consider a smaller setting. A quieter, calmer place, with other kids like him. We have all just agreed to move my son into a special ed classroom.
As I sit in my tiny cubicle at work that day, a strange fuzziness fills my head. An idea, a memory, is trying to force its way to my consciousness, but I cannot allow it, because my department is busy and I need to work. My day though is almost completely wasted. I cannot think about applications and audits. I cannot focus on anything. My mind keeps pushing aside this thought demanding to be acknowledged. My happiness is leeching from me slowly and by the time I put on my coat to leave work I no longer feel any happiness or relief. I am simply exhausted.
It isn’t until I climb into my car and put my key in the ignition that I allow this thought to slide into the opening where it becomes tangible to me. There, sitting in the parking lot as the sun slides below the nearby freeway, I burst into tears. I realize now what I have done. I have failed my son in the worst way. I allowed something to happen that I had vowed I would never allow. I have made my son an EH kid.
Over thirty years ago I went to an elementary school built on prime real estate half a block from the beach. Our school was special, but not only because of its close proximity to the ocean. It was also special because it took in special needs children from all over the school district. Most of us kids walked to school, but some kids arrived on short yellow busses which drove in from other parts of the city. These were the EH kids. Most of the local kids were under the impression that EH stood for “Extra Help”, but my mother had explained to my brothers and me that it actually stood for “educationally handicapped”. The busses would pull up, and we children would stand and stare openly. We gawked at the kids who climbed off those busses. We wanted to see what made them different. We scrutinized them without mercy.
We called them the “EH’ers.” They were endlessly fascinating to us. Most of them looked just like us, but we knew that they were different. They sometimes talked funny or walked funny, or made strange noises in the back of their throat. They were kept apart from us in their own classroom. Even at lunch and recess they were kept together in a small group and watched over by their own teacher, while we other kids had the run of the playground. We were repulsed and thrilled at the same time by their presence whenever they were brought out.
It was an unspoken rule that none of us could be friends with an EH’er. We knew that their taint would rub off on us if we were seen talking to them. They were social pariahs, and even though none of them actually looked scary, we avoided them whenever we came across them anywhere in the school.
For a short while a neighborhood child was one of the EH’ers - a mentally slow boy named Doug who was sweet but had a terrible temper and would get instantly violent for no apparent reason. Outside of school we neighborhood kids all played together , but even though I played with Doug for hours at a time all summer long, I would not speak to him at school. I knew the consequences of associating with those kids, even if one was a friend.
In middle school the group of EH’ers was broken up and the children were, I am guessing, sent back to their respective school zones. The small group who followed us to middle school were placed in ordinary classrooms. The adults who made the decision to simply toss these kids in with the general population apparently assumed that they would blend into this larger setting amongst mostly kids who did not know them, and that they would then be accepted. But those of us who had been in their elementary school simply could not leave them be. We quickly spread the word about their old EH status and once again they ended up marginalized and rejected by the rest of the kids. They could not escape their stigma.
It must have been miserable for them. I look back at how cruel we were to those kids and marvel at how easy it is for children to destroy each other without a second thought. I think of their parents, feeling sad and helpless because they had probably been told by the school that their kids would be just fine, that nobody would know they had been in a special classroom. When their children came home and told them of our cruelty, the parents must have been devastated.
Many of the EH‘ers eventually left our middle school. My hope is that their parents forced the school district to place these children in schools that did not have us kids - the ones who knew. I hope these kids found someplace where their pasts could be left behind, and they could simply be regular kids.
Now I am the mother of a special needs child. When we got the diagnosis for our 4-year-old son, I was forced to confront the child I had been. Cruel. Prejudiced. Judgmental. If someone was different, we all turned our back on him. I didn’t even feel bad about it. It never occurred to me that these children might be lonely, or hurting, or sad. I never wondered if they cried at home because they had no friends. This was how small my life was. This was how pinched and small my heart was.
Children have changed. Everyone has assured me of that. Children are so much more accepting now of children who are “different”. So many more children are integrated and the other kids are used to having these special needs children around. Teachers are teaching their students that each child is unique and that “disabled” is just another descriptor, like “left handed” or “tall”.
I hope and pray that this is true. I worry that my sins will come back to haunt my child and break his heart. If someday my son ends up back in a “normal’ classroom, I hope the cruel, pinched-hearted children aren’t there to tell those who don’t know about him. I hope that other kids can talk to him without being shunned by their classmates. I really hope everything is different now, for my son’s sake. This is too much for someone like me to ask for, I know.