Odin & Persephone watching Cat in the Hat together <3

Persephone just woke up and she's listening to the jitterbug lol it's that kind of day ;)

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.

Persephone is stylish and sassy in purple shades!

Ivy reading bedtime stories to Piper and Persephone :)

Odin's "pretty pretty toes" he did himself this morning after he snuck out of bed. :(

Blogger has angered me.

I spent the better half of this week writing a post about my recent trip to the doctors and my week (so far) on Ritalin. I'm quite angry that it told me it was saving my blog via the "auto save" and now its not here. A few days our electricity was on and off because of thunderstorms, and every time my computer started back up, the blog post would still be intact. The day I try to post it however, its missing.

I just wanted to share my anger, because I worked really hard to give a picture of my first week on a stimulant (for the first time in my life). Hopefully I can find it in myself to re-write it. For now, I'll continue to grumble.

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)

My Mini Lady Gaga & the screen protector

Our screen protector came today! I'm so happy! We took it out of the box and it was generously packaged in
bubble wrap. As you can see Odin took to the bubbles and completely covered himself in them! 10 minutes later he is still wrapping and rolling, stuffing and laying on it. Seems so odd to me because it's so loud! Yet that sound he is ok with! (and it's driving me crazy listening to it!)

We're waiting for daddy to come back from picking up Peach at preschool and then we'll put this new screen protector on our tv. We bought the tv about a month ago and we've been saving it ever since. Stressful! And we aren't in the position to just buy a new one if the kids break it. We would have nothing for a long time. I can't justify buying a flat screen for no reason. I was shocked to find out that these tv's break easily! What?! Ack! *dove across the house to save or from a Tonka truck again. I started researching a solution and found that a zillion people sell screen protectors. Finally, at 3 am I decided on one from tvscreenprotector.com and after a large amount of money, my husband bought it.

Review coming shortly! We have 5 kids, four of them are 7 and under.. Two of them are autistic, and ADHD, and 3 have anxiety disorders. One has a cognitive disorder, another has speech and articulation disorders. They all love to dance and move around and use my house like a playground. So this screen protector has GOT to be good. I'll let you know how easy it was to install and any issues we find, in my review. Boy I can't wait to put it on!

The Spiral

It reminds us where we came from, and reminds us that the journey is just as important as the final destination. In a world that revolves around instant gratification and fast answers, the spiral reminds us to take our time and slow down. Thank you Ivy for reminding me today. :)