Plugged In and Checked Out

January is almost here, and with the new calendar comes more appointments for me and hopefully more answers. You see, three of us are officially diagnosed with an Autism Spectrum Disorder. Currently I have two children in various stages of evaluation, and my youngest just got referred as well. I'm so used to the testing and the questions that it seems almost silly to get official diagnosis's for anyone, but I know that without it, they might not be able to access services they might need in the coming years.

I wish I had more support, but I'm married to a man that carries different diagnosis's, all of them given in his childhood.. so really, I don't know whats going on with him. For all I know he could be on the spectrum himself. Getting him to seek out any help for himself is challenging. And being married is more like having a 6th child most of the time. He spends all of his time with his Iphone stuck to the front of his face. He doesn't play the PS3 during the day because we finally came to the agreement that he needed to stay tuned into life. So instead, he games on his phone. Somehow he thinks its different. When I talk to him, and he doesn't listen to anything I'd said. Or when I look at him and feel those feelings of love, and realize.. no matter what I can't get him to look at me back long enough to have "a moment." He's tuned into his phone literally 24/7. He's worse than my 13 year old. And he's totally checked out of life completely.

I often wonder if other women feel this way in their marriages. I feel like we've long since passed that in love stage, and we're straight into argue about absolutely everything area.

Ever since his leg surgery and his addiction, Chris has been an angry, isolated person. And since I have Asperger's you'd expect this to be okay with me.. except its not. Because its not the relationship I came into. We BOTH were introverts and we relied on each other to help us peek out of our shells. One of us continued to try and push every day, and one of us fell into the shadows and has let his childhood demons come back to haunt him.

I don't know about you.. but its not that much fun loving someone with a history of trauma. I should know, I have my own baggage and it can be daunting sometimes! Its not easy to be told that I'm doing things that remind the person of their abuse. This is something new to our relationship. We used to share our stories and talk about what happened.. never did we put blame on each other for anything.

Maybe it comes with being together for so long? Its been a decade now. The longest relationship I've ever had. Even longer than my parents had with me, ...only my grandmother knew me longer.. and its fast approaching the 15 year mark.

What I can say is this.. sometimes talking doesn't help. Most of the time it makes things worse in my case. The type of conversation that I think is helpful and makes me feel better, makes him feel shame and because of that he withdraws. Then we spend hours deadlocked. I alternate between crying and withdrawing, to trying to talk using all my communication skills and feeling defeated. Eventually I give up. After some time, if I give up completely and pretend things are fine then he'll come around. On his own time. In his own way. But the issue that caused us to argue in the first place is never resolved and inside my heart I feel sad and alone.

I think about our marriage and those feelings of sadness and isolation are what caused me to leave my last marriage and seek out that love from someone else. Knowing that I don't want that, my instinct is to work through things and try to fix it. However its really hard when one person isn't communicating at all, and the other is somehow not communicating effectively. At least half the time I feel doomed. Like a gerbil spinning in a wheel. I feel like I'm giving all of myself, my soul, and heart to my children and this marriage and not getting in return what I need to feel fulfilled and loved. I want so much to reach out, but the past has shown me that talking does no good. And it hurts so much to be rejected the way I have been lately.

I don't know whats in store for my life down the road. I only know where I am and where I want to be. I want happiness and love. I'm struggling, but still trying to keep this relationship together. I wonder if we have what it takes to still be together. I wonder if thats the right path or if we're fighting a losing battle. I don't have answers to any of those questions and its frustrating that Google can't answer it for me..

I think I need to find a pen pal, or a forum somewhere and get back into communication with other people. I need to feel like people are listening to me somewhere because I'm not feeling the bond in my home right now. Its not just being a woman with an autism spectrum disorder, but its parenting 5 children.. several of which have autism as well. My life isn't an easy one, but somehow I will make it work because I know others have it far worse. Its what keeps me going. Knowing that to someone else, I have it easy.

So how much does communication really matter in a marriage? Do you think its possible to love someone, be married, parent and have a gap in communication? Does it feed into trust or distrust? Am I doomed?

Perpetually Alone

I've been having a hard time finding the time to sit and let my thoughts out. It seems there are always dishes to wash, laundry to fold, and kids that are crying and need attention. If anyone that is thinking about starting a family finds this blog, please know that having children is rewarding and fun.. but very hard. Sometimes it can fill your soul, othertimes you lose yourself.

I believe a big factor in which way you end up is in the support system you have around you. Then theres the little things that make or break you. Are your children developing at the "normal" expected rate, or do they have delays or gaps? Special medical situations? What about you? Are you "normal"? So many of us are nowadays, if the term "normal" is to be used. I've never been able to define what it really means myself...   For this purpose, do you have depression? anxiety? ocd? autism? medical issues?  What about your relationship? Single parent, or married, divorced?   Now I want you to put those big issues aside and think about all the tiny details of having children. Right now they're dreams, and you sigh when you think about them. Well someday you'll be crying. I promise. No really! I'm not trying to be a downer. Just a realist.

You will make choices that you will question. Nearly every single day. And if you're a good parent, you'll agonize over those choices. You'll beat yourself up until no can even recognize that you're under there anymore. Under that Mommy hat. The one you take off less and less the more kids you have and the more years that go by.

I wrote a post years ago about losing myself, and trying to find it again. Sometimes I wish I knew how much other mothers go through. I wish I had someone to tell me to sit down and stop cleaning. (Other than my husband who doesn't do much of the cleaning at all.) I wish I had that support system that other people seem to have (and ironically don't want.) You see, I can't just sit down and relax. I can't put my feet up and just let life happen, because I have such a hard time feeling calm and together when there is chaos. And with 5 kids there is a lot of chaos!

Its 9:52 in the morning and I decided to try to write this blog post. One child was coloring, one was playing the PSP, one was watching Spongebob on the Ipod Touch, and another one is watching daddy play the PS3. Everyone was relatively calm. So why can't I feel calm enough to let the dishes sit in the sink? Why do I feel like the laundry MUST be folded? And why do I put those feelings onto other people? I wish I knew.

Everyone would say its because I do the bulk of everything in this house. I'm overwhelmed and frusterated. My husband should do more. Things should be 50/50. And I agree. But I don't know how to accomplish that. I'm not him. I can't make him do anything and all those little things about leaving dishes in the sink until he does them, etc.. they don't work. He really will just wash what he needs and go about his day. Somewhere along his childhood, he didn't learn responsibility. I know a lot of parents that don't seem to be parenting. They aren't present, they aren't THERE. they're off at the bars, or gambling, or texting, or facebooking or playing video games. For them, the laundry can and does wait. They don't worry about money or how to keep a coat on their kids in the middle of winter. I know, because I see their children in sweatshirts in December, shivering at the bus stop.

So why then, do I feel that I need at least SOME of what they have? I don't know. I feel like I don't have balance over my life. I wear that Mommy hat all the time and I don't ever get to take it off.

I don't know. Sometimes I wonder if this situation is normal. Does EVERY married woman do all the chores, and take care of the kids 100% of the time? We can't be the only couple that has this issue. I'm the ONLY woman with issues, married to a man with issues, that has kids?! .. That can't be true. Yet it is. I don't know.. it just seems that things are never as easy as other people. Yet I know that isn't true either because my children don't have severe medical issues, and their other issues we are working with..   Others have it far worse than I do. It seems to come full circle to support. I have no one to talk to, no one to complain to, no one to cry to, and no one to look to for advice or love. Once upon a time I had my husband. Like all good things though that, for the most part.. has come to an end. He's here. But he isn't really.

So just what is the connection in this blog post? How does all this rambling add up? Well it doesn't. Its disjointed, disconnected, rambling, incoherant at times, and downright confusing. It is exactly like my life is.

I promise there is more to me than confusion and sadness. I simply have a hard time accessing it right now. I need people around me that are positive supports, and at this time I have no one except a handful of people willing to listen in texts. I need real life. I need coffee and talking. I need someone to help organize my spice cupboard and clean my clutter with me. I need someone to listen to  my last fight and remember how funny things were 10 years ago.

I started this blog years ago as my own way to open up and have validation and support. Oddly enough people read but rarely comment. I suspect there is a certain voyerism to listening to me vent. And of course, there is the disjointed part. Maybe people wanting to know more about what its like to have autism, or parent children with autism.. will be the ones to understand this blog the best.


I contemplated deleting it the other day, but I decided for my own sake not too. ... but I find it pretty telling that even on the internet, with the potential to reach millions.. I am still alone. I don't know if anyone reads my posts or even cares. All I know is I feel so lost and so overwhelmed, and so alone all the time.

My Late Unhappy Fathers Day Post (that has nothing to do with Fathers day)

You know, I have no issues with my children wanting to express themselves. Sierra went through that phase of her childhood and it was fine. However, Ivy has no style whatsoever and she doesn't know HOW to have a style. She doesn't understand anything to do with social appropriateness and has to be in classes at school just to learn that its not okay to LICK people, but there is no one but me to teach her how to have a style. How to comb her hair, shower, pick clothes that match and look good, have a hair style, etc..  and every single attempt has failed. Repeatedly. She continues to part her short hair directly down the middle, slicked down, and very much DOES look like a boy. Her anxiety sky rockets all the time, "I look like a boy!" "People call me a boy!" "Why do I look like a boy??" and its daily. Yet any attempts to get her to do her hair differently... even as simple as a clip on the side, pulling her bangs sideways, or scrunching the back to give it volume.... are at first met with a little resistance... but then she likes it. She loves it! She takes pictures. She looks at herself in the mirror. She shows everyone. She says how pretty she is. Ten minutes later she suddenly flips the other way and starts screaming that she can't take it, "I want it flat! I want it flat! OMG make it flat! I want it normal! I want it down!" and she puts her head in the sink, wets my house, her head, her clothes.. and frantically does this while screaming and shrieking, and hitting me. Any attempts to console her are futile. She won't say anything else except to just ignore everything I say to her. I don't know what to do anymore. I can't just let her go and expect her to learn eventually. She already gets teased all the time, and bullied daily at school. I want to help her! This isn't about forcing her to wear dresses, or making her change dramatically. This is like, "Here, try a headband." or "How about you tuck your hair behind your ears?" and then we spend a LOT of time looking at styles, and looking at pictures. And she finds so many she thinks are pretty... but she can't do them. She can't keep it. She always goes back to the ball of nothingness. And I am having a hard time separating my feelings. Image via Wikipedia

I have never had an issue with personal style and kids making their own choices. I really don't give a crap. Its hair. But in this case, she is doing it because of her anxiety.. and its not healthy for her to continue to do something that is negatively affecting her SO MUCH... the amount of people and kids that hurt her every day are numerous. And its because of her hair. And I'm helpless because she won't listen to me or keep it the way we put it. I'm angry. I'm frustrated. I'm fucking pissed off right now to be honest. I wasted nearly 2 hours of my day trying to get her hair in a "new way" so that her anxiety about looking like a boy would lessen, and it worked... only for a few minutes to pass and for her to get angry and mad at me for the "new style" that she just seconds ago gushed about. What gives? Is this anxiety driven? How do we get past it? She did this with long hair too. And unfortunatly because of her personal space issues, she always gets head lice from people... and she didn't want to put it up at all. I had to give reinforcements of food if she came home from school with her hair still up. And for awhile that worked. But it seems like this anxiety to have her hair down and flat slicked to her face like... ugh.. its just... it IS weird looking. How do I keep my little girl who people already think is weird, from making herself look weirder? In a quote un quote "normal" child, I would let them do what they wanted and then let the natural course of learning show her different ways.  But Ivy has autism, a cognitive disorder, ADHD, and an anxiety disorder. She can't do it on her own.. What am I supposed to do? Send her out in the world with mismatched clothes, hair that looks disgusting, and just.... let her? *sigh* Parents ARE going to judge me for it. They already have judged me for letting my oldest have her own style and that was minor compared to this.

I don't have kids that dress in expensive perfect matching clothes. I seem to have 4 girls that so far all want to look like boys, or at least don't want to express themselves in any way whatsoever. I guess I have myself to blame for that. I don't have a style myself. I barely shower, I never have a chance to buy or wear proper clothes. And really, for who? For what? So it can get chewed on? Spit on? Nose wiped on? The reality is, I have nothing. I am nothing.

Happy Fathers day. I'm feeling really low after this mornings blow up over hair. I don't know why. Maybe because I can't do ANYTHING to bond with ANY of my kids. And I can't help them or tell them ANYTHING, and have them listen. Yet if someone else tells them, chances are they'll listen then. So really, what good am I besides the maid? I clean things, they mess them up. I cook, they throw around.. possibly eat. I wash. They fuck up. ..... at the end of the day there are always complaints and no thank you's. Not even from my teenager. What little I see of her anymore.

Not having a vehicle is throwing me off in a big way. Its been nearly 2 months with nothing but the occasional use of my cousins car, which I would be grateful for,... if he were not LIVING ON MY LIVING ROOM FLOOR! .... we all know how I get when we have company that overstays their welcome. (which in btw, anything more than a few hours.) I just need my own space. I need to feel safe in my house. I need this to be a place for ME. And its not. It hasn't been for a long time.

Chris finally has his surgery and can walk and help me... and he's not. He's outside with Matthew working on the jeep. Every day. All day. And I'm in here. I'm like an octopus. Arms and legs everywhere, running here and there.. trying to catch things before people get hurt. Trying to always be here saving people, feeding, breaking up fights. And every day loops into the next. I don't have the time or the energy, or the capability, or the gas, or the vehicles or the ability to take my kids out of the house and do something new with them. Or to even do something that isn't new. We haven't been on a walk, or gone swimming at Rotary Park in years. Its been years. And THAT... is pathetic.

I feel like I'm rotting on the inside slowly every day.  I wake up and the cycle starts all over again. And its not like planting a flower and watching it grow and nourishing and taking care of it.... and then seeing what it turns into. This.. this is painful. This is more than painful. This is watching life happen around me, and watching me... away from myself.. trying to keep up. Having no time to even reflect on anything that makes me feel happy. Its why there are rarely any happy status messages (something I've been chastised for recently. Go figure.) and why my blog posts are usually angst ridden or angry, or overly emotional. Because its in THESE moments, that I sit here at the computer and fire off posts and messages. Somehow when its something i want to say thats happy, the need to write isn't as strong. ..... coping. Its a coping skill I guess. ... my feeling starts to fade by the time the message is written... and I can feel my anger lessening. So I guess I'm using it as a coping mechanism to get through the emotional feelings I'm having at the time. Silently slamming computer keys is my version of hitting people or screaming. And in a case like the trigger today... I have no reason to be angry, yet I am. I am.. hurt. I put so much effort into everything I do..   and I was so happy that she was happy about her hair. I even took pictures. And then she snapped and flipped backwards. And it caught me off guard. Instead of looking at it rationally today and knowing (duh) that she has anxiety issues. (I knew she would take it out. I did know.) I got carried away in the happy feelings I was having, and thus.. it feels personal when she flipped the other way and started yelling about her hair. ..... So how can the happy moments mean something to me.. how can I hold onto the happy ones, when they get negated? Because THAT is the issue.

I bribe people, or give in to people desires because I need them happy so that I can be happy. And lately there are so many issues, and needs, that at every moment....someone is unhappy. On the rare occasion that all my younger kids are happy at the same time, and Chris and I are happy at the same time.... in walks Sierra from outside in the crappiest mood I've seen ever. Any attempts to talk to her are met with the traditional teenager attitude of "What?" and "so?" and "ya." etc. complete with eyerolling, shoulder shrugging, whatevers, and the pissiness that goes along with it. And again I find myself trying to cheer up the person that is upset. "I have a candy bar, want to share it with me?" "Sure" but the mood remains. I try something else. And more. And every time that her mood stays the same, its like a knife through my heart.

With Chris, he wants games. And his face lights up when he talks about a new game he wants. And then he begs and pleads like a little boy. "Pleeeease?" and I want him to stay happy. I want to see that smile on his face and that twinkle in his eyes. So I give in. Even though he already bought a game. And we can't afford it. And I think its horribly unfair that he gets TWO $60 games and I have bought nothing for myself that month.. Buy? I've had one shower this month. I don't even get to take care of the basic needs like peeing, showering, eating, etc..  they get put off and put off. Why? Do they really stop me? I feel like attitudes and moods stop me. Facial expressions stop me. I want to keep people happy...  ...  I'm not sure what this is, or how to fix it. And for once in my life I haven't googled it yet. This is the root to most of my issue I think, personally and as a mother.

How can I be happy despite everyone else's moods? Is this an autism thing? Is this a woman thing? A mom thing? A fucked up in the head thing? Help me.

When Empathy and Advocacy Collide, Will You Speak Up?

Image via WikipediaI recently read the post, "Empathy and Advocacy: Closing the Gap" by blogger Lynne Soraya who writes the blog "Asperger's Diary" on the Psychology Today website. She contacted me on my twitter @AutisticMama and said that she was interested in my opinion as a parent.

Being autistic myself, and also being a mother to children on the Autism Spectrum I can say that I've been in both situations quite a few times and I don't think there is a right or a wrong answer. Like many other situations in life, the choice to stand up and speak out is individual.

It's really hard for me to be in public and see how common it is for people to react negatively to others, no matter what the issue is. I think perhaps because I'm actively not looking at them, I am picking up on everything else. I can feel and hear far more than most neurotypical people around me can. I don't see it though, I feel it. This type of emotional response is more common than I once thought, common among those of us with an Autism Spectrum Disorder anyway. Once thought to lack empathy, professionals are starting to realize that our emotional responses are often too much, not too little. And often times the emotions are being received at such a fast rate, that we become overwhelmed. Bombarded and assaulted by our senses. As always, research is ongoing as to why this occurs.

I usually know instantly when I'm around someone that is cognitively or neurologically different somehow. There is an unspoken language I think. I see those subtle signs of stress, or agitation. I can see that they aren't gazing at a flower, or walking by daydreaming. Instead I can see that they're counting the petals on the flower, and humming the theme song to a TV show over and over while running their index finger round and round on their thumb nail.

I see these things because I live with them daily in myself. (this is of course a doubled edged sword. It means I am capable of seeing when my autistic children are coming close to meltdown point, but sometimes my mommy-mode mind isn't listening. This is incredibly frustrating for me and I will tell you honestly that I do feel guilty every day for trying too hard to be a neurotypical mom when I'm not. It's a difficult line to ride.)

I can't tell you the number of times I've seen children flapping, spinning, or scripting to themselves and watched interactions with their parents and been shocked to learn later (in cases that they become acquaintances )that the parents don't see their children in distress at all. In fact, they complain of all the typical autism symptoms, but don't realize their child is autistic at all. Meltdowns are called temper tantrums, stimming is called "being a freak" or the child " being a weirdo." and other behaviors are receive responses like, "He is all boy!" and "she's just a sensitive girl that's shy and keeps to herself."

Now I'm all for not labeling everyone just for the heck of it, but I still cannot fathom in this day and age how people can't know their child is autistic. Then I remember...before autism was a part of our lives; I didn't know either. I just didn't know.

It's like not knowing anything about Parry-Romberg syndrome or Ribose-5-phosphate isomerase deficiency. Why don't I know anything about those disorders? Simple. Its because they haven't impacted my life yet. Is that a great way to live, running around completely ignorant that these disorders are affecting children? No. Its also not feasible that I learn about every disorder and disease out there. (at least not without obtaining a degree while doing so) Familiarizing myself with the "most common" diseases and syndromes is do-able. And Autism should be on that list for people I think. I think its do-able for every person out there. (Of course I also believe everyone should know how to perform CPR.)



It takes time though. Awareness doesn't happen overnight. To be honest, the arguing among professionals about the different types of autism and where and how they're going to change things is off-putting to people. No one wants to hear more about a subject that is so filled with emotion and anger. Its like shying away from discussing politics. Autism has become like that. A subject that seems to have only two sides, those that know nothing and those that think they know everything.

Finding common ground and coming together to help people become more aware needs to happen first within the autism community, before we can reach others. Its just surrounded by controversy and drama. How can I even begin to talk to people about it when many have their own opinions about it already.

"Just another crackpot diagnosis."
"Just another excuse for poor behavior and bad parents."
"Another ADHD"
"Yep sure, everyone has that nowadays."

Add in the vaccine debates and its just not friendly waters.

That being said, whether I speak up or not in a situation like the one above would depend on a number of factors. What exactly did they say? Was it loud enough for a lot of other people and/or the mother and child to hear? Was it very rude or very ignorant? How am I feeling that day? Have I met my social limit already? Am I already stimming like crazy myself and looking for the exit? Do I have my hands full with my own screaming kids? What do the people look like? Despite what they might have said, do they otherwise seem like they might accept me saying something to them, or do they look like they might scream at me for butting my nose in? Do I even have enough reserve left for me to really look at them and not just look around them? If I don't have enough reserve left to even look at them to assess the situation, then I won't attempt to say anything at all.

I try really hard to look at mothers in those situations and give them my "I know how hard it is, I understand" look. (which may come across as the creepy I'm watching you look.. I might need to practice more) If I have enough reserve to do all those things above, and find them to seem to be people that would be somewhat kind if I spoke up.. then I might say something like, "She seemed to me like she might be ____(insert something here) developmentally delayed, autistic, etc. Sometimes depending on initial reaction, I might then say that my daughter is autistic as well and that many children with autism flap their hands (for example)

Stopping to gauge their reaction is important because then I try very hard to know if they want or need more information, or if they think I'm a weirdo and they're secretly wishing I'd fall off a cliff. Sometimes I botch this part up. When I get nervous and think I'm doing something socially inappropriate (butting my nose in) I often do it more, or continually, because I get stuck in a loop and panic. Not very helpful.

I tend to use my own experiences rather than the child/parent in question. That way I feel like I'm not broadcasting their business everywhere. And of course, I also preface anything I say with words that make it very clear that I don't know 100% that the child is autistic. She could have a brain tumor, or some other neurological disorder. I don't know.

However I do know that being rude isn't helpful to the mother or the child, and if I can make them think about the situation in a different light, then awareness has been achieved. Because in the end its not just about autism awareness. Its about acceptance, compassion and empathy for fellow humans. No matter what the diagnosis of the child might be, its secondary to the lesson in being kind and non judgmental towards other human beings.

Related articles

• Empathy and Advocacy: Closing the Gap (psychologytoday.com)

I entered a raffle *gasp*

Normally I do not enter raffles. I'm allergic to them. No seriously! They cause me such anxiety about spending the money, and then possibly winning but most likely not. The pros the cons. It swirls around until I'm so confused that I run away.

So I found it nice to click on the link and donate $10.00 for a good cause, and get put in a raffle that I probably won't win.. but would be cool if I did!

An Ipad would help my children with autism so much!

All proceeds raised go to The Autism Science Foundation

Paying attention to the little things

Sometimes pictures are capable of manipulating the memory into what we wish the whole moment felt like.

In reality, this was only a mere 3 seconds in time. Before and after the picture they were screaming, struggling and beating each other up. It was close to a bloody mess on my couch. Suddenly they both stopped and relaxed. Odin spaced off and Persephone was listening to a commercial on tv that had music in it. (music always calms her)

For that brief moment, they looked so serene and loving. I'm glad I was able to capture it, even if it only lasted a minute.

After all, aren't some of life's greatest things limited in time? Rainbows, orgasms, that first bite of a delicious meal, the smell of a newborn baby, true new car smell, your first crush, and a spotless house with five kids..

Today I'm going to try very hard to notice the little things. Cute photo op's with the kids, when my husband makes that attempt to show me love, when Piper tries to tell me about her day at school and when Odin snuggles in my neck and whispers over and over,
"Mama?"
"What buddy?"
"I love you."
"I love you too buddy."
"I love you so much Mama."
"I love you so much too buddy."
"You're my best buddy"
"you're my best buddy too"
"Mama?"
"What buddy?"
"I love you Mama."
"I love you too buddy"
No matter how long it goes on, I will remember to cherish those words. Some parents might never hear their autistic child say them, and mine can. And does! So today I will try hard to remember that my children with autism are not trying to annoy me with their continuous statements and rigid sentences. The underlying thought is, I love my mom and i want her to know. How can I not be touched by that?

These pictures are more than cute moments. They are my motivation to be a better mother and a better person.

My Struggles With Blogging and Anonymity

I've struggled with the idea of separating my blog for awhile now. Part of me wants to keep it semi-private, while the other part of me want to announce it and shout it from the rooftops. Its that open and closed part of myself that annoys me the most. Generally speaking, I am a private person. I keep my shades closed and I hate the sound of someone knocking on my door. Online however it feels different to me. I know for many people on the spectrum, the internet provides that anonymity that they crave. The problem is, I realize its false. I am not a secret. In a matter of clicks you can connect other profiles to other sites, and bam! My identity is pretty obvious and I'm easy to find. I can be found on thousands of websites in one Google search. I've had an online presence since 1996 and I can't just wipe that away. I don't even want to! But sometimes I struggle with blogging about things that feel private. Maybe its because I creep on my neighbors online. (and everyone else I know.) Maybe its because I can't get over how open other people really are. Or maybe it's simply that people don't give a shit?

I see you..

Do you know how easy you are to Google? Do you realize that I know everything about you? I've told people that I looked them up before. And I was shocked. Flabbergasted really! To hear them nonchalantly say, "Oh ya?" And that was that. Oh ya?! Seriously? I just told you that I stalked you online. I know where your work, your home address, your phone number, and I know that you hate  your mother in law and you had sex last night with an ex boyfriend that's the most hideous creature ever born on earth, but that you're desperate and horny so that doesn't matter. I know that you can't pay your rent, but that you bought a new car. Oops. Never mind. The new boy toy bought you a new car, you just sleep with him to keep him making payments. And the day I found out you had a freckle on your inner thigh right next to your va-jayjay was the day I realized I knew too much. My cup of coffee every morning, and a click to see your latest post.

But back to my issue. I told you that I stalk you and you don't care. Now I'm left wondering if I'm in the minority. And how can I feel two opposing things at once? I want a blog. I want traffic and visitors, and even yearn to reach out to people, especially other mothers that have a disability or are struggling with a mental or neurological disorder. And yet I'm extremely private and, yes.. I'll say it.. paranoid. I think you're a social worker hired by DHS to spy on me and report back how many diapers I didn't change immediately after the baby peed in them, and how many dinners are cereal because I'm too frazzled to cook dinner. Or maybe you're just a family member. ... except I don't have many of those I talk to. Wait, that's worse. Maybe you're one of the ones I don't talk to! I keep you out of my life because I don't want you in it. But here you are, reading my every thought I put here. And short of making my blog completely private, there isn't anything I can do about it. (though I suppose if I was willing to move my blog elsewhere I could utilize IP blocking but that's besides the point.)

So just exactly why do I blog again? I seem to be nothing but a contradiction in every sentence. I confuse even myself. I learned years ago to write down things that confuse me, so here it goes.

I am blogging for several reasons. I will list my reasons. They are in no particular order of importance.

1. I want to preserve memories and thoughts about my life and my family's, as well as save pictures and videos.
   
2. I want to write down my struggles and successes as a parent with a disability. 
3. I want readers to be able to connect with me. As strange as this sounds after reading the above paragraphs, I want readers to get to know me in a way that most people don't. I want them to be able to relate in some way and share my journey through life.
4. I want people, women, and parents to be able to find information about Autism, ADHD, Anxiety Disorder and other various issues that I have first hand knowledge about. I want to be a source of information and also entertainment. Because lets face it, my life is chaotic and crazy! 
5. I want to be more consistent in my delivery of this content so that my readers will always have something to keep them entertained. 
6. I want to find comfort and healing through this blog, by knowing that everything in it might be public knowledge. I want to eventually feel okay about this. So in part, I consider this an important part of my personal therapy. 
7. I would like to make millions of dollars in revenue by delivering highly entertaining content.  
8. I want to enjoy myself while writing and have a place that I can feel free to share what I create.
9. I want to be able to share my graphic designs, photographs, poetry and stories with a larger audience beyond my husband and kids. 
10. I want to accomplish something bigger than myself.

So why have I written this today? Well, I realized that its taking a lot of energy to try to separate what I want to write about my life in general (like a journal) and what I want to educate people on. (autism, ADHD, etc) The two really are intertwined. I cannot take the autism out of my life, any more than I can take away my natural eye color. I can mask it but its always really there in my DNA. So I decided against separating my journal type blog, from my autism blog. Who am I? I'm a mother, and a wife. I'm a woman with autism, and anxiety disorder. I'm a mother to several special needs children and I have a husband with ADHD. I'm Pagan, but struggle with integrating that into my life on a daily basis now that I have children, and find myself hating that in order to be understood I have to box myself into the category of Wicca. I'm an ex Christian, abused by their dogma and brought down by the holier than thou believers. I believe in co-existing with other religions. Christianity I've found for the most part, does not. I'm a survivor of childhood sexual abuse and emotional, mental and physical abuse in my teen years and adult life. I'm an recovering self mutilator (cutter) and quit smoking cold turkey 4 years ago. I've been incorrectly diagnosed with quite a few things, and finally after years.. correctly diagnosed. I spent years on medication that I didn't need to take.

There are so many different things that make me who I am. Its not possible to fit them all in this paragraph, or separate them into different blogs to target different audiences, even though that's what gets the best traffic. (most websites tell me anyway) What matters is that you all know I'm about as diverse as it comes. Marching to the beat of my own drummer, is the best sentence I could use to describe me. And best yet? No one else even hears the beat I'm marching too. (and they're all marching the other way lol)

Please know, if you read old posts you might find that I tried to use various pseudonyms to conceal my identity, or my children. The problem is, I find that extremely impersonal. (which I should like right?.. wrong.) I have this need to connect with readers, and that connection can only be done when I'm telling the truth. No matter how awful it might be. Anyone that truly knows me in real life knows that I value truth over anything else. Even if it hurts. So I think I have this real need to convey that to my readers. No matter what parts of my life need improvement. No matter the mistakes I've made. No matter how imperfect I may be, I am always going to be honest. Without honesty, what do we have?

Though my life might be entertaining to read, and my issues I deal with every day.. well, I don't often hear stories quite like mine. Other times my posts can be depressing. Sometimes they might make you angry. Maybe you feel pity. Maybe you hate me. Maybe you love me. At the end of the day, I know I wrote the truth and hopefully so do you. Its that connection that I'm really reaching for.

So please, when you read my blog; try to remember that I'm writing it for many purposes. If you know me in real life, (online friends don't count here, sorry!) please do us both a favor and don't tell me you're reading my blog. Stalk me if you'd like, but lets keep it a secret. If I've written something about you and haven't concealed your identity, then by all means let me know and I'll rectify that immediately. (and then I'll pretend that you never told me you found my blog) Sometimes when I'm writing (with honesty) I don't remember to leave out those details. Because to me, the details are whats important. But rest assured I never put full names and addresses or anything crazy like that. For some reason I just have a real hard time changing peoples first names. Its almost like I cannot tell the story with fake names or it changes everything for me. I spent so much time trying to remember who is who, and what name I need to use for what person that the whole thing I was trying to write is lost and the moment, gone.

In a perfect world, no one that I know will ever find this blog and I can remain a wonderful mystery person. I'll have a million followers and become insanely popular. (and make those millions) I would be happy with a handful of loyal readers, and people that honestly can connect with what I'm writing and know that what they read is real. This is me. This is my life. Enjoy the ride.

A tour of Odin's preschool

In an hour the kids case manager is bringing me to tour the autism preschool in town. I'm blogging about it because I'm more nervous than anything I've done before and I'm absolutely not sure about sending him there. None of my children have left my sight this young. He's only three! Its only a few hours a day, and its not even every day. He's my baby boy though and I'm not sure if I'm ready to reliquish control. I dont' like the fact that Ivy leaves and goes to school because I KNOW that things come up that she has problems with during the day and I'm not convinced its being taken care of in 100% the best way. We're all human, but I don't know if I can risk my little boy being in that position.

I want to like it. I want to go in and find toys on shelves, and calanders, and visual supports, and heaps of sensory toys in every corner. I want to believe that an autism preschool would know not to play loud music at snack time, or that the sound of clapping makes him cry. I guess I've had no one to rely on for so long, no one that knew what I was going through.. that I don't feel I can trust anyone now. sigh I want today to be a good day. I'm going to go get dressed. Ya it was a lazy morning. Time to be productive and look at a preschool!!

Piper on her way to Preschool; big 5 year old now

In impromptu "Hey! Stop for a second!" while we were on our way to Mothergoose Preschool at 7:45 in the morning. She dressed herself and wore a pair of striped Babylegs with her outfit. I thought they looked so cute that I snapped a pic of it. Its hard to believe my baby girl is 5 years old already. Where have the years gone? Yesterday she cooked a bagel by herself. Pretty soon she'll be driving a car. It happens so fast!

Some quick facts: Two months ago at almost 5 years old, she was 47.6 pounds and 43 inches tall. She's built just like Sierra was/is :) Tomato and dairy we've figured out, cause her eczema to get worse. Its itchy, and right now its pretty bad. Luckily for her right now its on her bottom and her legs and not her face. (though Persephone has a patch on her face) Her favorite foods are Ramen noodles, chicken, and more Ramen noodles. That girl could survive on noodles alone! She's not big on desserts just like Odin though. (Ivy is another story entirely) Her favorite game is Pixie Hollow on the computer, and her favorite things to play with are Tinkerbell toys, Strawberry Shortcake, computer, and her American Girl doll.

Piper's teacher says she's doing wonderfully at school and that she's very independent. She doesn't whine or cry at school the way she does at home. So most likely she does it as a way of gaining attention. And trust me, in a house where biting 7 year olds get the most attention, 3 year olds that throw toys and don't talk much, and 16 month old babies with no words that just scream DO get more attention than a quiet well mannered 5 year old. I can see the allure to misbehave there. She's a lot like Sierra was. ;)

Her independence has been held back a bit due to Ivy. Inadvertently we don't let Piper do some things that she can probably do, because Ivy isn't ready to do them yet. I know the time is coming that she's going to pass her sister and its difficult for us to figure out how to let that happen.

Already she's allowed to pick up Persephone, but Ivy is not. Its purely a safety issue. Ivy trips and falls and really just has no awareness of her body in space. If allowed she would run and climb and jump while holding the baby. Obviously she can't do that. So we have to be right on her about it. She does get a time out if she repeatedly doesn't listen and keeps picking the baby up. As long as Piper is just holding her, or moving her from one place to another (if she's crying or in an unsafe spot) she can be trusted to do that. Sometimes she gets too silly and we tell her to keep her hands off her sister, or to put her down. In general though, she's very good with her.

She doesn't have the issue with impulse control that Ivy has. Thats the first real thing we've been dealing with that doesn't "feel" fair. I want Ivy to be able to pick up and carry her baby sister around, she's almost 8! She should love babies! I know I did at that age, and my heart just breaks that she can't do all that holding and mothering that I know I wanted to do. Then again, maybe she doesn't have those same feelings?

Actually, looking back I can see why I shouldn't have been trusted with kids. (yet I was) When my younger cousin Matthew was a baby, I once bit him so that he'd cry.. so that I could make him feel better again. His smile was so cute when he was happy, and the feeling that I had when I cheered him up and made him stop crying was so happy inside my heart! I remember feeling proud and excited that I could do something so special. So one day when he was happy just playing with me, and he didn't "need" me to cheer him up and "Shhhh" him and pat him.. I tried really hard to make him upset, so that I could make him feel better.

Doesn't that sound like something Ivy would do? Yep. Exactly like her. LOL The reasoning was sound to me. And I can remember not understanding why people were angry with me. It made sense to me. I was confused a lot. I stared at blinked at adults, or cried. Ivy and I are so much alike its scary sometimes.

A House of Cards

I should have written a long time ago. Goddess knows I've had plenty to say. And anyone that knows me, or my house, knows that I have enough going on to talk about!

First things first. In the interest of disclosure, since so much was written about that time period.. my husbands oldest daughter has contacted him through Facebook. We knew it would happen when they aged out of the system. We didn't expect it to happen this soon. She is still only 17 and in state care. We also didn't except that we'd be able to so easily see his other two children connected to her Facebook page. Literally a click away. And not even a private page. There, on the other side of the most popular social networking site... were the three "missing" kids we've been searching for. We read, looked at pictures, put together pieces of the puzzle of what their lives have been like for the past decade..  I put my spying to good use and did a lot of digging. The oldest was the only one that didn't get adopted. And from what she writes on her wall, it was planned and somehow disrupted this past fall. I had a hard time wrapping my mind around why they would allow the kids to have completely public Facebook pages. I don't allow my own daughters to be that public!

So my husband and her exchanged cell numbers, because it was easier than writing inbox messages on Facebook. Of course we agreed not to say anything to the other kids that are younger, because she could lose contact with them and we don't want that to happen. They've all grown up so much. Barely recognizable from the pictures that I posted on here. And in all reality they don't us, and we don't know them. Not even his oldest.

We've also had to come to the conclusion that exchanging phone numbers might not have been the best course of action. I encouraged it, thinking they could easily write to each other here and there instead of trying to use my computer all the time. (the laptop cord fried, and Chris's computer is completely full of WoW. No really. So full that we can't play it on there because he's out of memory. Bah. New expansion just came out and we turned our accounts back on and everything. Figures.)

Where was I? Oh yes. Texting his daughter. It hasn't been easy. She texts him a lot. First thing in the morning, while we're all still sleeping.. the room lights up and I hear, "NEW MESSAGE!" from his phone on the nightstand. Oh.. its her good morning daddy message. Throughout the day there are more. Always filled with "I love you so much daddy. I miss you daddy"  Remind you of someone else you know in this family? Exactly. We have another father/daughter interpersonal issue. She hasn't changed or received the help she needed. It was that obvious. They really haven't had much of a relationship since she was 7 years old. She's 17 now. And just as dependent and immature. Whats to become of her in the next year when she ages out? The father instinct wants her to live with us. But intellectually we know that if she still has some severe issues, she can't live with us. We have 5 children and it isn't fair to them to put them in danger. Not even to reunite my husband with his child/ren.

Lest you think I'm the big green evil ogre that most step mothers seem to be. I'm not. I can just see a mental health issue when I see one. And this is a huge elephant in the room. I'm glad that Chris sees it though and for the most part we're on the same page. He's started pulling back a bit more each day. Letting more time pass before responding to her. Not getting dragged into her drama, "I made a bad choice daddy. Help me. What do I do?" type of issues that seem to be a daily occurrence with her.

I will be honest here. I can't say jealousy didn't enter my mind. And that's not right. She is his child. There shouldn't BE jealousy there. But somehow her timing, her dependency, her urgency, and her manipulation all make the situation pretty painful. For the past two weeks, she's said good morning to him first, shes' asked him about his day first, she's said goodnight first. And I'm pretty sure if you add it up, they've exchanged more "I love yous" then the two of us have. ... Its hollow. Its empty. Its a house of cards built on nothing but a fantasy of life before state custody. Nothing will ever come of it. Not even the parts that I'm alright with. Her being in our lives, and being a part of it..  I'm not sure she will be able to share her father in that way. She views her life as being her, her sister, her brother, and her father. No matter what. They stick together. But that manner of exclusion isn't going to work. It can't work like that and be healthy.

I'm waiting for the house of cards to fall down. I know it can't survive this way. He isn't able to keep up with her demands, and instead I end up texting her. She thinks she's talking to her father, and he doesn't have to try to navigate this uncertain ground. He doesn't want to mess it up, but he doesn't know how not to. Soon enough though the game will come to an end. Someone will notice she's talking to her biological family and it will be revoked. Who knows how far they'll go to stop those connections. At least if I shoulder most of the responsibility and emotional baggage, then when the cards come flying down..maybe it won't hurt him so much. Thats my hope anyway.

So as you can probably imagine, that's enough excitement to last for quite awhile. However, this is MY family! Which means there's a lot more!


Update about Ivy: Her IEP was yesterday at school. She's in second grade and this is the second IEP this year. We went to reclassify her. That meant another round of tests and observations and rating forms to fill out. In the end, it was a unanimous vote to change her primary disability status from a child with "Speech and Language Disability" to a child with "Autism."  And what that means is that she'll automatically get a lot more services. So we left the room with all her supports for the bus in place, She's on a different bus than all the other kids in the neighborhood, which is working great so far! It goes down our street anyway so it just loops around and picks her up. That way she isn't around any of the kids in this neighborhood. She plays a Leapster or watches a DVD player that the bus company bought for her. She sits in the front seat, with a seatbelt, and she also sits with a 5th grade girl and so far, no issues at all. She gets 60 minutes of a social skills group a week. Thats two separate groups. And she gets 60 minutes a week of OT. She also has accommodations in the classroom, a weighted vest, a wiggle seat, some chewy pen toppers as well. All in all it was a great IEP meeting. I think our case manager ruffled some feathers, but when doesn't she? LOL

Oh, in case I didn't blog about it before (I'm sure I did though) Ivy was officially diagnosed with ADHD combined type, Anxiety Disorder NOS, and Asperger's Disorder. She also has a mild cognitive disorder that affects her working memory.

Update on Odin:  Odin has been receiving OT and related services though Child Development Services (CDS)  since the beginning of the year. They've done nothing. To be honest it was a waste of time. However, they're going to order him a new trampoline with a bar and that will make things easier for me!

He recently had a speech and language test done, and also a Vineland. He qualifies for 3-5 services easily. His articulation alone qualified. Yep thats right, the opposite of what CDS told me. They said, and I quote "He just has too many words and he's having a hard time saying them. He'll catch up."  Well he hasn't. Its only gotten worse since he's older! So now that he's aging out of the 0-3 and headed to the 3-5 services, they are offering him a specialized preschool 3 days a week for 3 hours a day. They'll give him OT and speech right there with qualified people. Small class, no more than 6-8 kids at a time and they work on a lot of adaptive functioning, schedules, routine, etc. From what people have told me, its a great opportunity. I might take them up on that.

Theres a lot of detective work I need to do first. Putting a 3 year old into pre-school is something I haven't done since Sierra went to Headstart. But she was so much more advanced and by that time, used to separating from me because of the whole shared parenting thing. I don't know if I'm ready to let my baby boy go. It seems too early to me. Everyone talks about how important catching things early is, and how much his autism symptoms will improve.. but since I'm not in the "cure all the autism" camp I'm not really sure how I feel.


(note: This was a post that I had in my drafts and forgot to publish. Oops!)

Our Little Buddy, Kyle. Rest in Peace

Tonight, Sierra saw something on her facebook page. One of her friends Liam was talking about how he missed his brother Kyle. "Mama? Does he have another brother named Kyle, or is he talking about Kyle Kyle??" I ran over to look at her screen and froze when I saw his words. Something something Kyle died in his sleep.. were the only things I got out of it. I immediatly picked up mu cell phone.

I called all the numbers I had for Kyles mother, my friend Heather and left a voicemail on one, and talked to her father on the other number. He said Heather wasn't doing well at all. I've reached out to all our mutual friends for support, and thats all I can do. ... which sucks. Its not good enough. When all I can do is sit here.. it doesn't feel like enough.

We babysat him all summer. We were going to this past summer, but they moved to Kennebunkport and he went to summer school instead. But the summer before he was with us nearly every day from morning til night. It was hard dealing with 6 kids, not to mention that him and Ivy clashed big time sometimes! But he was so funny and made us laugh all the time. He never let anything slow him down and he was always willing to try no matter what. He overcame quite a bit while he was here. I watched him learn new things and change.

I have so many videos from that summer. I suppose I should put them on DVD. When the time is right, Heather will want to have as many memories as she can. I certainly took a lot of pictures and videos. I took a picture of them a week ago. Halloween night. It hasn't even been uploaded from the camera yet....

Things change too fast for me..
I've struggled a lot with letting go of the past. Seeing friends, like SOTM people.. seeing them change and leave.. watching us go our separate ways. So many break ups, divorce, changes, and death. ... the good times as a group are gone. The bonds and friendships have changed. For good. You can't go backwards.
two deaths in one year is too much for me. I can't begin to imagine how Heather feels. I don't. I can't. It hurts too much already. :(

Kyle was Ivy's only real friend. The only birthday party she'd been to. The only person that has been in her life since she was born. The only other person she really connected with. She knew he had autism and some of the same problems she did. ... how do you explain death to a child that has a hard time grasping things like that? How do you even begin to tell them? Should I just not? Its going to cause so much anxiety for her. Ugh.

I'm rambling. Its past my bedtime and I know you're in bed. .. I just needed to vent. I'm sorry. I shouldn't be up at 1am crying. I lit my candles, and I sent out my calls for help and support. There is nothing left for me to do, and yet I feel so helpless. I wish there was something more I could do.


I'm going upstairs to kiss my babies, and snuggle in between two of them and fall asleep. ♥

Kyle loved Spongebob. He loved to collect stuffies from popular Disney movies. Kyle also had
autism. He was so full of life and happy all the time. I just don't understand. Why Kyle? Why Avis? Why Grammy? Why Mom?

I'm not sure I will ever understand.

The Post-poned post

Isn't it funny how a simple phone call can change things sometimes?

I've struggled with the idea and implementation of anonymity on the internet for years. I'm not sure when it started to matter to me. Probably the first time I was judged for something, and the consequence was astronomically huge. Never mind that the judgment was erroneous. That didn't matter. What mattered then and now, is that I was changed. I learned quickly that being myself wasn't acceptable. So I vacillate between hiding and being completely public. Some days my Twitter time line is public, and other days I get scared and turn everything private. They say that everything that gets put on the internet is there to stay, and that sort of permanency alone is scary.

I'm not good at remaining anonymous. Maybe its the autism. Maybe its my inability to lie about things that are important, or understand why someone would act malicious because of something I wrote. Its probably because I cannot wrap my brain around some things. Why can I look up the most heinous things online that others have written, sometimes depicting death, torture, rape, you name it and its out there... and yet I feel scared posting about my childrens day, or what I had for dinner last night.

It all comes down to shame and the feelings of guilt it conjures up. Inappropriately placed shame. Why is it there? I don't know! I'd like to know. Probably some psycho mumbo-jumbo about being devalued and emotionally abused or neglected. I only know how it makes me feel. I shouldn't get scared and filled with paranoia and anxiety at the smallest thing. I shouldn't be worried that something I say will cause the DEA to knock on my door and destroy my empire built on drug money from the meth labs in my kitchen, or worry that the neighbors dog is secretly a police dog and when I go to check the mail the dog will be able to sniff out the marijuana that's in my pocket. Especially considering I don't smoke marijuana, there isn't any in my pocket, and I'm pretty sure the drug dealers in the neighborhood don't have an ex police dog. To be honest, a dog has never approached me since I've been living here. As you can see, there is no reason for any of those things to be in my head, let alone be something thats causing anxiety.

What 5am looks like

This is 5am outside my back sliding glass door. Willow trees always look their prettiest when they aren't on your property, trust me. This thing sheds like a beast! No amount of rakes or brooms can keep our back yard clean and leaf free. But the birds, they love this tree. And I have to admit. It is pretty.

So we were supposed to be going to Beltane tomorrow to celebrate with our like minded Pagan friends. However I just don't think any of us feel up to the few hour drive to the beach. Then I'd have to chase the kids while we're there. Ugh. The way Ivy has been acting lately I don't think I want to chance it. I'm hoping a firm diagnosis can happen soon for her. We're really struggling at home with her behavior, and I know the school is too. Except for when her friend Z isn't there. Z has been out sick this past week, and lo and behold.. Ivy has had a solid 5 days of nearly 20 stars every day. Now I know I talked about this before, but I just can't get over what a drastic change that is.
So I asked her, "Ivy, when Z isn't at school who did you play with instead?" And then the most heartbreaking answer ever, "No one."
I stopped what I was doing and looked at her. "No one? What about recess? What did you do?"
"I played by myself." she answered.
"Every day? Why?"
"Without Z I don't know what to do, so I be by myself."

I'm really torn between being excited about her behavior at school, to being sad that the reason her behavior is so good is obviously because she's withdrawn and displaced feeling because Z isn't there. I remember that feeling...  it was the reason I never went without a boyfriend, EVER. One replaced another. No, I wasn't a whore. I simply couldn't function alone. I needed someone to help me put on a brave face and go out into the world to do what I had to do. At the time that was only math class, lunch and passing time.. but it was still nearly unbearable when I was alone. I remember what happened when my boyfriend graduated a year before I did. I had no friends. No direction. I couldn't even get to my classes because I didn't remember where they were. I had nothing to do but stare at the floor. I felt so out of place.

And here Chris and I were celebrating Ivy's accomplishment of nearly a week of awesome behavior. But does the end really justify the means? And her bus behavior I  might add, totally stinks. Kicked off the bus twice in one week doesn't seem that awesome.

Parenting a child with special needs isn't easy, especially when you have issues yourself! To any parent out there with any kind of disability at all, be it physical, or mental. Visible or hidden. You have my support. Its not an easy road.

Ivy got suspended from the bus. Again.

Yep. The bus company just called me. I guess this morning she got written up again. This time another girl told her to scratch this girl, so Ivy did. The girl was crying and had a red mark down her arm. The bus driver witnessed Ivy scratching her. So now she's suspended from the bus for the next two school days. :(

If this is any indication of how next year is going to go, I don't want any part of it! It makes me even more happy that they went ahead and kept her IEP in place.

The Issue with blogging

I've wanted to blog more than I have been. I know it probably looks like I'm a lazy camera phone blogger at this point, but in my defense.. I know the reason why I'm so quiet. Because I have to be quiet! Let me explain. My best writing is done at night after my little angels are tucked in for the night in their double beds with fluffy blankets. Only after my house is semi quiet can I really think about the things I like to blog about. You know, those deeper things beyond, "Where are Ivy's clean leggings?!" and "Do we have enough money to pay the phone bill this month?"  Now I know you're thinking, super! Then blog when the kids go to bed! But its not that simple.. you see the baby usually sleeps downstairs in the pack and play. And to make things worse, she's right next to my computer desk. Under normal circumstances this is the best location for her. Easily accessible so I can protect her from Odin should he try to throw a Duplo or a Matchbox car at her head. (he does have this urge frequently) Not so convenient when I want to type like a mad man with flames flying out of my fingertips. I wait for the right moment to blog when it won't wake her up, and I can still concentrate. Those moments are obviously few and far between.

So here I am! Its 7:56 AM and Sierra and Ivy are already at school. Their first day back from school vacation. The rest of us couldn't be more excited for them! Seriously. Vacations are the worst in my house. Ivy needs the structure of getting up, getting ready, going on the bus, going to her classes, coming home, having dance class and then going to bed. I need that routine too.

Update: Its now the next day. ya ya. I should have just ended and pushed Publish Post. Except I forgot! Gah! Anyway, Ivy had a great day at school. She got all 20 of her stars. Her goal is 16 stars in a day. Its part of her new behavioral plan. They've broken down her day into 20 chunks and they give her 1 star if she follows Kelso's Choices and another star if she is compliant. Yesterday was the first day she's ever gotten 20 stars! I was so happy! And then today, the bus company called me to inform me that they wrote her up yesterday afternoon for standing up on the bus. They tell me she always stands up while the bus is moving. I tell them, put her in a buckle seat please. They did last year and there were no issues. This year she's been written up twice and this time she's suspended from the bus for a day. 6 years old and suspended for hyperactivity she can't control. That really stinks. So I'm going to have to do something. I mean it can't continue this way. There are only 2 more chances and she's off for the whole year. It isn't a big deal as its almost May. But what about next year? This has to be addressable in her IEP or something. (which they DID keep btw. They even added on a behavioral plan and social stories, along with everything she currently had. Yay!!!)

Alright, posting this before life takes over again.
     

Almost the End of 2009

When you take a group photo of 4 kids six and under, its hard to get a good shot. Someone is either not looking, sticking their tongue out, wiggling too much, and completely out of the shot. This is the best one I got. I like it, even if Piper isn't looking. Again.

So Christmas is over. I know I haven't posted pictures of it. I will. But the tree is already down. I couldn't take it up anymore. Which makes me sad because I remember how much I loved the lights hanging up year round at the farm. I would stare at them and squint my eyes up, and wiggle my head back and forth. I'd watch how the lights would spin when you closed your eyes halfway. How they colors could all swirl into one. I'm not sure how no one knew I was autistic back then. Even to me looking back its pretty obvious. Oh what the power of the internet and google could have done 30 years ago! It would have made sense to my endless spinning. Even when I got older and played with my cousins, I'd manufacturer games that involved spinning. As I watch my daughter interact with kids, I cringe knowing thats how badly I interacted as well. I was bossy and demanding. I know why. I needed them to play the way I was playing because I already had it in my head. THIS was how the Barbies were going to play today. They had boyfriends and they were going to watch and movie. And pretend I said that I loved him. Pretend I was here. Pretend I was there. No! No! Not there! HERE! Uggghhhh over HERE! .... I didn't care what they wanted to do. I didn't like their ideas because I had already written how the playing was going to go. It was already in stone. You can't change that. ..... I watch my 3 year old struggle to play with Ivy because she wants to use her own ideas, and Ivy will have none of that. I've become a broken record; Let your sister play the way she wants to play Ivy. Let her use her own ideas please. Ivy stop telling her what to say. .. Eventually Piper gets tired of it and wanders off to watch tv, which of course leaves Ivy absolutely angry beyond belief because SHE WAS PLAYING!

I look at the picture above and I can see it. I love her to death, and the picture is adorable! However.. her arms are around both the baby and Odin, because then SHE is the one in control. I know her reasons. It helps to control the chaos in her head. It gives her consistency and helps her to know whats happening if she's the one calling the shots. But to others it appears controlling and bossy. And it often leaves Piper out..

One of my New Years Eve things this year... I can't think of the word I'm looking for. Promises... um...oh! Resolutions! One of my resolutions is going to be to make more time for Piper. To pay attention to her more when she talks and grabs my arm. She's the middle girl and she tends to get lost sometimes I think. I don't want that. I want her to know I love her and she's every bit as important as Ivy (chris and my first together and the one with special needs) and Odin (the only boy) and Persephone (the baby) and Sierra (the real oldest but different kid cause she has two homes) .... Piper just IS in all of this, and I want her to feel special too.

I'll post more later, PJ is fussing.

Its been a rainy June and goodbye Michael Jackson

Sierras 11th birthday. (obviously) We got her some clothes, a hair straightener, earrings, some big thick purple bath towels, and a new purple BMX freestyle bike with pegs on it. The exact kind she wanted. I wasn't going to get it for her because when I asked what she wanted she didn't say a bike until a few days before her birthday. But Chris couldn't resist a moment to do something daddyish. ;-) She had a party but not many friends came. I think it was just poor planning on her part and late inviting. She had a sleepover with Skye, Ashley, and Danielle was there for the party.

We've been babysitting for a friend this summer and its been interesting to say the least. Two autistic children don't always get along well. Thats all I'm gonna say about that. LOL

We've been cooped up inside a lot this summer because its rained most of June. There have been a few semi-nice days but not many.

Its been an odd week in history. Farrah Fawcet died of cancer. Ed Mcmahon died. Billy Mays died. And Michael Jackson died. So many people in the public eye, it stopped the world for a few seconds. The internet traffic was so heavy after the news of MJ, that it almost ceased to work altogether. The cause of death is still unknown. Some people are happy, having pegged him a pedophile. Others are moarning and in grief. The black community has lost an icon. The music industry has lost an influencial singer, dancer and coreographer. MTV and all the channels have been running tribute shows that show his songs and music videos. So my children got a chance to watch them last night, having never seen them before.

Ivy is now infatuated with his "Thriller" video and both girls made me tape the show and so far today its played 6 times. Ivy dances in MJ style and they both gasp and giggle about the zombies. I find it so odd that my children are seeing this video for the first time because of his death. In his death, my children are experiencing joy at watching him dance and sing.

My thoughts are with the Jackson family as they sort through this tragedy. As they are with all the families of the other public figures that passed away this week. May they find peace in the afterlife that they were not able to find here on earth..

Happy Fathers Day! and a rather large update

Oh yes, I've been worse than horrible about updating. What can I say? I have four kids. Cut me some slack.

As you can see, that is baby #5 right there on the left. We had our 20 week ultrasound a few weeks ago. Today I'm 20 weeks and 5 days along. And technically its baby #7, since I had two miscarriages in between the girls.

We decided to find out the gender this time. The result? Baby number 5 is another girl to add to our estrogen filled home! Daddy is thrilled beyond belief and I'm happy keeping Odin the only little man in my life for now. =)

All the testing came back good, and the 20 week scan looks great. My thyroid levels are off though, so I'm back on synthroid again. I was on it for Sierra and Ivy too.

My OB doesn't want me going until my due date, which is officially November 3rd 2009. Instead they want to induce me the last week of October, or sooner depending on how much I dilate. I'm alright with that, since usually after ROM I go quickly.

Lets see... Ivy graduated Kindergarten the other day. I'm so proud of her. She really has learned so much this past year. As weird as her teacher was at times, she was a good teacher for Ivy. She even returned the communication notebook to me at the end of the year. I'm impressed. Ivy retained her IEP for next year, though it was by the skin of her teeth. We advocated for her based on her below average pragmatic skills test scores, and her need for sensory breaks an other accommodations. So she'll be in the social skills group with the SLP next year in 1st grade. Her evaluation by the school psychologist was a joke. Well, reevaluation. It was 5 minutes of observation and 10 minutes of "conversation." He concluded her pragmatic language was excellent and she had no issues at all. So he was not going to diagnose her officially with Asperger's at all. ..... at the IEP meeting I called attention to the discrepancy in his report versus the speech and language pathologists report that looked at her pragmatics. She scored below average, enough to qualify her for special education for another year. And yet he said it was excellent?? He asked her questions again about things, and she gave fictional answers. But since I wasn't there, he had no reference. He took it all at face value and claimed there was nothing wrong there. I was livid to say the least. In the end though I had to back off a bit. They were willing to give me an IEP for another year and THAT was the goal of that day. I can get her a medical diagnosis on the autism spectrum another day by a real professional. LOL The schools job is to help me help her. And I believe they did. It was a successful IEP meeting, albiet my first stressful one.

Piper still has a whole year and 1/2 left before she goes to preschool. I can't believe that. She's such a big girl and SO ready. Of course she has that 3 year old attitude. LOL She also took the scissors to her hair the other day. Gone was that hard to make decision about whether I should cut off all her hair to give her bangs or not. No, she made the decision easy! Most of her hair was cut off to make it even after her barber job, and she's now sporting a very cute bob. I have to admit, she didn't do a bad job on the side she cut. And just like her mom, she hid the hair under the bed. (RIP Aunt Alice)

Sierra has run the gamut of things she's willing to do for popularity and/or friends. Her first serious "relationship" with a 13 year old boy ended badly recently. She refused to kiss him because she wasn't ready for her first kiss, and after a month of waiting he was too embarrassed that his girlfriend wouldn't kiss him that he dumped her. Now she's willing to do anything to get him back, including sacrifice her own self worth. I can't think of anything I hate more. Watching my daughter give up everything for a boy that I know is playing her. Being used. And not being able to stop it. As a parent I'm pretty powerless to these social things. Being an aspie parent I'm even more powerless because I don't get it in the first place. I find it hard to understand why she NEEDS these horrible friends that treat her like crap. Or why she MUST do things/say things when they're around. I simply do not get it.

I count my blessings that I believe her trying smoking has ceased. She tried it twice. (first time because she wanted to try it. Second time because others heard she had tried it and dared her to again.. *insert eye rolling smilie here*)

smoking.. boys... kissing....

I'm not going to like the next 7 years.
Yes, she turned 11 finally. It seems she's been stuck at 10 doing much older things for awhile now. I'll be glad when my pre-teen acting like a teen finally IS a teen. Then it will seem age appropriate at least. Ahh what a period at 9 will do to you... hormones really are the devil.

Odin my little man is not so little anymore. He's 16 months old now and just as snuggly as ever. I think everything he's doing is age appropriate and on target. (though I said that about Ivy as well and looking back... well.. I was a little bit of an idiot.)
He says "key eee" for kitty
"baww" for ball
"I did it" for I did it.
"dada" for dada
(no mama at all. *sigh*)
"up"
"yes"
"no"
"nope"
"ahh yes"
"ahh no" when thinking LOL
"step" when he wants help getting up or down the stairs or steps
"I said stop!"
"stop!"
"stop it!" (can you tell he has siblings?)

He says some variation of thank you, though I can't think of what is is right now. It sounds nothing like thank you, but he says it everytime you give him something so I'm assuming thats what it is.

He blows kisses with both hands. He gives kisses and hugs.
He pulls hair still. A LOT.
He hits faces.
He doesn't bite much. Not as much as the girls did.
He loves to play with his trucks and play outside.
He plays by himself a lot better than the girls did.

He nightweaned himself a few months ago. He takes a sippy with diluted milk to bed. (we're weaning down to water) He nurses once a day. Occasionally twice a day, but no more than that. He just doesn't want it like the girls did. Odd huh?
He hates shoes and refuses to wear anything but Robeez. He'll walk in those but everything else causes him to fall on the floor screaming and howling pitifully.
He still sleeps in my bed... and I'm unsure how to transition him to his own bed so soon..with the new baby on his heels.

He's the most snuggly baby I've ever had and I love him so much.



(Picture of the girls taken at the Old Port Festival in Portland.) I went to see Thriving Ivory perform and I enjoyed every minute of it! (I also have a video of it on YouTube.)


In conclusion... heres to you Chris! My wonderful loving husband. I'm so glad I married you. (seriously!) I'm so glad I chose you to have a family with. You're an awesome father to my oldest, even if she's not yours by blood.. and you're a great dad to our children we made together. I love you so much! Happy Fathers day darling.. and thanks for the waffles and bacon. ;-)


<3 Peace.

Are You Ready to Let Go?

School starts soon. Not just for my 10 year old, but also for my 5 year old. She'll be going into Kindergarten in two weeks. They had a lottery for all day K, since its a new thing they're doing. The psychologist suggested that she go all day, but I was leery. She's only done 2 hours a day for 4 days a week of preschool. Is she ready for a jump to 5 days a week, 7am-3pm? I have no idea. But she's going to be doing it. Her name came up in the lottery, and Ivy will be riding the big girl bus with her sister. (thank the Goddess for that! I'm thrilled that she'll be on the bus with Sierra, Nicolas, Sarah, Katrina, and Chris. Not so thrilled that Jenna and David will be on the bus too.. but.. can't be choosy I guess.)

Her IEP is done. Her backpack is bought. Her screening is coming up soon. I'm not sure why they want to screen a child that they already know is autistic, but okay. I don't know what good a screening assessment will do.
Her hair is cut.
She has some new school clothes. Some new supplies.

but I wonder if I'm ready. I'm not worried for the typical mother reasons. I'm worried for other reasons. I'm afraid that kids will tease her. And I know they will. The neighborhood kids do every day. She does things they think are weird and annoying. Will she be able to make friends? How long will it take her to remember their names? Will she be able to tell me about her day? Will they give me a communication notebook so I know whats going on at school?

She'll be in an hour of speech therapy, and an hour of OT a week. Thats what she's been getting now, so she's used to it. However, in school it most likely won't be individual but instead small groups. I'm not sure how well that will go.

She's been having speech and OT privatly all summer with a nice lady named Erin. There have been some speech improvements, at least during sessions. In the real world however it doesn't get applied much. She's been working on social skills with her too. She said when she writes up her paperwork at the end of the summer, she's going to be suggesting that they make her diagnosis official because her speech issues (pragmatics, social issues, expressive) are a match to those of an Asperger's Syndrome diagnosis. And there is no reason to hold off on an accurate diagnosis. Especially when she could be benefiting from more services, and more support. She needs to be in a real social skills class badly.


Her OT comes to the house once a week, and seems to be rather green. I'm not sure if she hasn't much experience with autistic children, or if she hasn't had much experience period. She's nice enough, and I'm happy with her.. but it seems to has to work too much to come to the same conclusion about something that I do. She commented that I should be an OT because I was so knowedgable about it. LOL She seemed to be thrilled and in awe at all I knew and all I've done with Ivy. I didn't tell her its because my children are MY obsession. LOL


Before Ivy ages out of Early Intervention, the OT was able to order Ivy a compression vest in purple. Its made of neoprene and its very cozy. She is also ordering a weighted blanket in Hannah Montana fabric. (I haven't written that Ivy's obsession changed did I? Its no longer Spongebob. Its Hannah Montana. In fact, we had a Hannah Montana party too) So those are two great items that she's getting for her to use. She also got her a brush to use, so we can start a brushing protocol on her for deep pressure input. Ivy likes it.

There is some school shopping left to do. Clothes for Sierra, backpack for her. Some clothes for Ivy. Registration for dance classes is done. And Ivy is down to two more Speech appointments, and one more OT appointments and then its off to school......

I have no choice but to be ready.. Kindergarten here we come!