We’re preparing to do another round of evaluations for Tempest’s Aspergers. I am pensive; after all the bullshit we went through before it’s not something I’m looking forward to, but we have a lot more support this time than we thought we would.

I am cautious because the consensus is that the longer we go without an official diagnosis the harder it will be to get it, because that’s just how the damn system works. After the ridiculously stupid defeat a few years back where the diagnostic doctor on the team that was evaluating her threw out two years worth of reports that came back to them with “autism” printed in big bold letters across the top for one 20-minute play session… we’re less than pleased with the system and don’t have much faith in it.
Afterward we talked at length with the mental health workers and family therapists, who strongly agreed that she was Aspergers but had no authority to diagnose it (they diagnosed as much as they could around it that would provide her access to better programs, but alas it doesn’t do much without the label we so desperately need). Their recommendations on how to proceed boiled down to two less-than-stellar options:
1/ Do nothing, or worse than nothing. Neglect her needs to the point where she quickly spirals out of control, which would result in a much faster road to diagnosis and access to funding. She would be miserable, stressed and deeply unhappy, but chances are it would only last a few months into the next school year before the diagnostic process moved forward.
Or 2/ Do everything in our power to help her quality of life improve with coping skills, therapies and education… which may help her get a better handle on the symptoms and behavioral challenges to the point that we’d risk never getting a diagnosis because as far as the big wigs are concerned she’s doing “fine”.

We chose the second option without a moment’s hesitation – as a result she’s made dramatic improvements, especially in the last year or two. Those improvements mean she’s more likely to be dismissed. Last time they told us, “It’s autism, but we don’t want to call it that. So you get to have all the challenges of raising a child with ASD/Aspergers except without access to the programs and therapies that would make a difference because we don’t want to ‘label’ her. But it’s cool because she’s really really smart.”
They actually seemed to believe that a high IQ was somehow directly correlated to one’s ability to be comfortable, happy and functional in social and academic settings and reassured us that because her cognitive intelligence tested off the chart she’ll “be fine”.

So yeah. After that bullshit we’ve kept the idea of reentering the diagnostic process on the back burner.

This is especially challenging because our province recently cut all funding for diagnosis, research and treatment everything shy of the most profound autism; they’ve arbitrarily decided that Aspergers doesn’t exist and therefore will no longer “give away” a diagnosis for it. It’s been an extremely frustrating journey and that just made it ten times harder. We have her doctor, her therapist, a child psychologist, her school psychologist, her teachers and her OT aide in complete agreement; writing regular reports and letters recommending an autism diagnosis and referral… and yet we can’t get it for sake of politics. It makes me want to have a temper tantrum. It shouldn’t be this hard to get a diagnosis: money and elections shouldn’t be the deciding factor in how many children have access to care and therapies they need. It’s already challenging enough to get a girl diagnosed, and now we have this recent political shitstorm complicating things even further.

… But we’re trying again in spite of it all, because those who are closely involved with her at school are really pressing her need for it (and their need for it). OT and visits to the school counselor are just not cutting it.

We went back to the youth mental health worker (and family therapist) last week for follow-up appointments and recommendations, and she referred us to a psychologist that was amazingly helpful and gave us some great information about medication changes to try and manage her obsessive compulsive behavior a little better. Curtis is adamant that we not try a new medication until summer break so that she doesn’t deal with the academic stress if it ends up being a tough transition. I think his idea is a good one, but I don’t want to wait that long if there’s a chance we have a better option for her. Argh.

This all began again last month when her school counselor had a very awkward phone call with us where he tried to recommend we get an autism referral, without actually saying the dreaded “A-word”, because he wasn’t sure if we were yet aware of her behavior. Once I told him the story he seemed not only very relieved, but eager to provide a long list of helpful reports and papers, telling us what we could do to help the process along and noted that multiple health care representatives and her teachers have been noting the autistic behavior for months and months (this year) and they’ve been pushing hard to get special status for her in the school.

We had a very short parent-teacher meeting with both her teachers this afternoon that was also really positive. They said it before I did, and both expressed how hopeful they were that we were again perusing a diagnosis.
“The problem is,” said one of her teachers with a background in developmental disorders, “that she’s so extremely high functioning that she sort of knows how she’s supposed to act, and she wants to be good, so she does what she can to hide it. She can hold it together up to 90% of the time as long as there isn’t a lot of stress. If you don’t watch closely you might miss it… but then the rest of the time it’s so glaringly obvious. She’s textbook Aspergers in every way.”

I could have kissed her.

Academically she does amazing and has no challenges. Her reading and math are light years above her peers and the only problems she ever has are around staying focused through work she’s not challenged by… but socially? She does terrible. She cannot “get” concepts that come naturally to other kids and gets stressed out very easily when she can’t seamlessly integrate into play with other kids. When things don’t go just so she bursts into tears and has small tantrums, which is not only age inappropriate but awkward for her peers who then tend to avoid her because they don’t understand why she does those things. She stims, she hangs, she has zero impulse control nor any functional concept of how to join in social play or even how to navigate a flow of conversation.
For their part her teachers have been very understanding and encouraging, allowing her to have her moment and providing her with stimming activities and sensory play when she’s stressed or otherwise losing it so that she doesn’t go too far. It helps that they’re both not only well educated, but experienced in dealing with children on the spectrum and immediately recognized the red flags all over her and began applying coping techniques specific to ASDs.

Her two teachers and I sat and chatted long after the interview time slots had passed, discussing her behavioral and social difficulties, how GLARINGLY OBVIOUS her Aspergers is and how fucking stupid it is that the diagnostic process is so political.
On the wall of her classroom is a series of photos of each child in the class sitting on a bench. These images were taken for one of those “who has a birthday this month” projects. Tempest is the only student on the wall who isn’t looking at the camera.
“And that was the fourth try,” added one of the teachers, laughing with me. We were laughing at how ridiculously obvious it all is and yet there are still doctors who would readily deny it even with a five pound stack of reports and behavioral analysis from their own team that repeatedly places her in the high functioning autistic range.

So anyway… both teachers are going to write a letter, along with the family therapist, the school therapist, the OT, and us. All together we’re hoping to put together a clear picture of her behavior at home and school in hopes of pushing the diagnosis in spite of the mounting obstacles. Wish us luck, because we’ll fucking need it.


There are some interesting side effects to being a mom and having a disability, like unintentionally exposing your kids to far too much biology at a young age. For instance, a few days ago I was laying on the couch with my legs stretched out and Curtis sat down on them. Normally this isn’t an issue as I actually kind of enjoy the sensation of his weight on my feet (not my legs, obviously… but feet) but this time it was a tad uncomfortable. I tried to turn my feet sideways and pull them out from under him and quickly realized this was an huge fucking mistake when I felt the familiar click of my joint dislocating.

Context: I have benign hypermobility joint syndrome, which may or may not be related to a connective tissue disorder called Ehlers-Danlos. There are a few different variations of BHJS, one of them is simply being over-flexible (colloquially referred to as, “being double jointed”), but most people with it experience some level of pain and arthritis from the injuries they constantly receive from having their joints over-extend all the time. Over time, you learn to be pretty careful about how you move and do your best to maintain muscle strength and flexibility while also ensuring you don’t injure yourself too often. The problem with constantly injuring yourself, other than the constantly injuring part, is that your tendons and shit get all stretched out and the more it happens the more likely it is to happen again. It can quickly become an endless cycle of pulled muscles and dislocated shoulders. The injuries themselves rarely hurt at the time you receive them, it’s just the after part that’s such a bitch.
But the point is… you get used to it, and with frequent exercises and constant vigilance you’re less likely to get hurt all the time. Unfortunately, all your careful preventative care goes out the window when you get pregnant and you have all those wonderful relaxing hormones that just make everything a hundred times worse. It’s like someone came into your room in the middle of the night and surreptitiously replaced all of your joints with Silly Putty.

You’d think I should know better than to do shit like try and turn my ankles while they’re trapped underneath Curtis’ bum, but sometimes I really don’t think things through…
Curtis, having lived with me for some time now, immediately recognized what happened and leapt off the couch, immobilized my leg and grabbed me something to bite on. The kids were standing in front of us playing a video game that had them fairly deeply absorbed, and to be honest in those moments of pain and anticipation I really did completely forget they were standing there… The feeling was mutual up until the point that Curtis braced my foot while we popped it back in. The loud snapping noise followed by my screeching into a rolled up tea towel got their attention really fast.
There was this moment where I’m laying there recovering, seeing stars and trying not to hyperventilate; Curtis is tenderly holding my foot in place with one hand, stroking my head with the other and watching me with this concerned-yet-loving look on his face… and then we simultaneously realize the kids are just standing there staring at us in wide-eyed horror.

Oh… crap. Um. Hey, so who’s up for a biology lesson? Let’s talk about joints!
… And first aid!


A number of people have requested a photo of my tattoo now that I’m getting rather heavy into pregnancy and you’re all curious if it’s warped beyond reasonable recognition. Also, a bunch of people seem to think it’s disappeared because they don’t see it in the images.
As a note: I flip most of my belly pictures around for the progression chart thingy so that they’re all oriented the same way. I have a knack of taking photos with my left side facing the camera, which means most of the images you’re seeing are not of my tattoo side… that’s why you’re not seeing it. Not so much because it’s “migrated below the hem of my pants”, as a few people suggested.

 

As far as I can tell, it remains completely unstretched and unchanged other than having a more horizontal orientation. There were a few old stretch marks through the fingers when it was first done, and they’re a tad more visible now, but other than that I’d say it’s pretty much the same even almost 30 weeks in.

(You can totally tell where she’s sticking her feet from the front view).

Also, a number of people have asked what my set-up is for taking these self-portraits. It couldn’t be more amateur and basic, so I took a few images to show others how to do it themselves.

… And that’s pretty much it.
The corner of my bedroom, a desk lamp, a tripod and a lightstand with a DIY beauty dish (made out of a plastic hanging planter, a car mirror and a CD spindle all spray-painted white) tied to an SB800 with some yarn. I trigger the flash with Pocket Wizards, but that set up would be friendly to light triggers, radio poppers or a sync cord as well. Expensive radio transmitters are not necessary.

A close up of the the settings on the SB800.

Camera is set to F4.5-5, SS 1/30 and ISO 640. I try to keep the ISO lower to reduce grain, and I set the camera’s white balance to “flash”. The WB setting gives the pictures that sort of golden look to them and it warms up my skin tone in a really flattering way, so they come right out of camera 95% done. All I have to do is pull them into Photoshop for a contrast adjustment and any minor retouching (like getting rid of band lines from my pants or something).
I set the aperture on 4.5 or 5 so that the depth of field is about a foot and a half deep, then I stand behind the camera with my arm stretched out and have it focus on something in my hands as far as I can physically hold it from the lens (which is usually about two feet in front of it). Once the focus is set, I lock it into manual and everything between around 2-3.5 feet in front of the lens will be sharp. WIth the f-stop any lower, I’d risk having too shallow a depth of field and not be able to get a good shot of myself without blur. Aperture and ISO are followed through for the best look with lower flash power. I want to expose just slightly too high for the back wall, but not enough that it seriously blows out. Like I said: basic.
I could probably get a nicer setting complement by playing with the flash settings a little more but I’m honestly too lazy to stand there experimenting with it for 15 minutes, and this works fine.

For the silhouettes, I just switch off the flash; all the settings remain the same. These images are lit entirely with the desk lamp pointed against the back wall. Being in a corner and next to a white crafting desk bounces the light in a way that provides a nice subtle light wrap to one side of my body. If that craft dresser thing wasn’t there I’d have a pop up reflector set up in the same spot, about two feet from me and angled up.
Editing the silhouettes takes almost no time: I just load them into Lightroom, click my high contrast black and white action, and then they’re done. The only retouching I ever need to do on them is to get rid of some of the light fallout up in the corners.


Sometimes I am struck by how much I love my family, and how happy I am to be where we are. There are always days where I am tired, or impatient, or touched out, or in desperate need of some space – I couldn’t reasonably hope for some sort of ultimate perfection, and I am only human – but that doesn’t negate how much I love being part of a family.

I love my husband: he is supportive and loving and an amazing father. I couldn’t ask for a better father to our children, and the idea of not spending the rest of my life with him doesn’t even register in my mind as an option. I’m not even sure this level of head-over-heels-in-love is functionally different from some sort of terminal codependency, because when I say I can’t imagine it I really mean I can’t bear to imagine it. The idea of being without him truly frightens me; it’s not part of my universe to imagine it, and therefore the thought is deeply terrifying. A life where he is taken from me through accident or illness is the stuff of my worst nightmares. I’ve been with him for so many years, for such a huge part of my life, with so many ups and downs and all the different stops in-between, that I can’t quantify my existence as singular anymore. I am one of a pair; one of a family, and that identity makes me happier and more at peace with life than I ever thought possible. He has been a fixture of so many of my greatest triumphs, and worst defeats, that it doesn’t seem realistic to imagine there is something out there so challenging and horrific that it would mean the end of that partnership.
There comes a point in a long term relationship where you realize that arguments, incidents and stages no longer threaten the question of, “will we make it through?” because it’s now assumed you will. You have, and will continue to inexplicably survive life’s challenges, now as a couple as you once did on your own. The question is never again, “Will we make it?” but rather something more simple, like, “When will this be over?”. Everyday challenges are no longer potentially life-altering, but seem fleeting and therefore more manageable after you’ve had years of experience pulling you both through some of the darkest places of your life.

There is a strange stigma around identifying as a mother or partner (or choosing to be defined by your family in general), about why we should avoid it at all costs and Be Our Own Person™ for the sake of bettering ourselves as human beings or such nonsense. It’s as though people believe you can’t enjoy being a partner, a mother, a lover, a sister, a student or god knows whatever else you love being while also having your own unique thoughts and emotions at the same time. These things are not mutually exclusive, nor does choosing to identify as one destroy your life. By that logic, the process of growing into an adult obliterates the experiences, memories and loves of chilldhood so permanently that you barely count as the same person. I think most of us can admit that idea is based on a false assumption: becoming an adult changes your core no more than having sperm pass through your cervix hands down a death sentence for your individuality. I am a mom and a person, but I am also a person who is a mom.
I’ve never found it that difficult to be Myself™ while also happily identifying as part of a unit. This is my clan, my kin, my dream, my life… without it I’d feel empty and alone, not so much because there isn’t any of “me” left at the end of the day, but because I truly enjoy the entanglement that being a mother and a partner brings to me. If they all disappeared today I’m sure I’d go on to have some sort of amazing life adventure, but it wouldn’t be half as beautiful or enjoyable as the one I could have with all of them near me.

I’m more than happy to “talk too much” about motherhood, wiping noses, changing diapers, pregnancy, sex, family, love, hate, fights, sickness and health… and love that my life has become primarily about these things. It isn’t simply that this is my life “now”: this has always been my life. Before I had it I dreamed of it, as it approached I yearned for it, and when it finally arrived I was grateful. This is my life. I am happy to be living it, even with all the challenges it brings.

Links of the Day:
Man finds canister of film on a ski slope; changes life – This is a pretty fantastic little series of videos. The three part YouTube series chronicles a young man from East Coast of the US finding a roll of film, getting it developed and searching for the photographers so he can return their (beautiful!) photos. He puts a video on YouTube (part one, the one linked) which goes viral and soon gets him international attention. The owners are eventually found, which leads him to a life-changing adventure through Europe meeting new people, making friends and seeing new places. If only all of us could have this kind of adventure.
The Placebo Effect: How does it work? – A YouTube video on the placebo, comparisons and interesting facts on what we know about it. Very cool. From this video I learned that the “close door” button on an elevator is a placebo. You rats!
Jaw dropping images of the surface of the sun – Images taken by a photographer using a special hydrogen filter to achieve some pretty incredible photos of the sun the way you’ve never seen it before.
Japan Earthquake people finder – If you have family, friends or other loved ones in Japan and you’re worried about their whereabouts after the quake and tsunami hit, make or check for a record on this site. Using this site I was able to eventually find out my friend in eastern Japan is okay, and get in contact with other people who were also worried sick over her.

Comments

comments

67 Comments

  • Can we talk about this? I’m so overwhelmed. They have people watching Marissa at school right now and I have a bunch of meetings. They said it could be 3 or 4 years before we know what’s happening if it isn’t food allergies. I’m so overwhelmed. The teacher,counsellors & drs say aspergers but they have to rule out food allergies first. All I know is the counsellors want some assessments/diagnosis because she needs an aide at school but they cant get the funding just yet. πŸ™

    • admin says:

      Yes, please. I didn’t say anything on your FB about it because I have SO MUCH to say. Can we have lunch or coffee this week? It’ll be a million times easier to do it in person. FB message me or text me about it and we’ll set something up.

  • hi.
    i know this is kind of way off topic.

    but where did you get that crafting desk?? it’s exactly what i need in my super tiny house with an art student husband and tons of crafting hobbies of my own.

    • admin says:

      Isn’t it awesome? I LOVE that desk. The only thing it needs is an upper section wide and tall enough to hold my tissue ream and/or ribbons, etc.

      I got it at Michael’s Arts and Crafts store, on sale for like $70.

  • Anonymous says:

    *meant to say “those aren’t the SSI office’s therapists” the ONE time I had an appointment with their “doctor” they wanted me to go in an elevator, to the 3rd floor, of a crowded building, in a strange city to see him. To be honest, if I could do all of that I wouldn’t even have been applying for it! I made it into the building & called the guy begging him to come to lobby to see me & he refused saying that if I didn’t want to follow the rules I didn’t want to get my SSI…

  • Anonymous says:

    I don’t have any experience with ASD but as an adult who’s been fighting for not only benefits but also acknowledgment of my disabilities since my early teens, your words break my heart. I cannot imagine what it’s like knowing that people are so unwilling to help your child just because she ‘looks normal’. If high grades were the only requirement for happiness I should be over the moon, however life just doesn’t work like that.

    I have a laundry list of illnesses, panic disorder/panic attacks/agoraphobia/social anxiety disorder/generalized anxiety disorder/avoidant personality disorder/dissociation & sensory issues – touch. Which I guess is really just the long was of saying that I have Panic Disorder. Due to the fact that these illnesses keep me from working & therapy with anyone other than some random quack is expensive, my only options are medication (which whacks me out worse than is normal) or to just deal with it as best I can. I have been turned down for SSI because I “appear to be functioning in everyday life”, really? I can’t work, shop (unless it’s online) even for my own groceries, go to any social functions, or drive alone. But just because I’m not dealing with my problems in the “textbook” fashion (I’m not suicidal, addicted to drugs or alcohol & I can leave my house) I must be perfectly okay. I just love how this system works *sarcasm* I have a diagnose on AT LEAST 3 of the above list from 2 doctors, but those are the SSI office’s therapist so it doesn’t count for shit, sigh.
    I would like to add that my grades in school (before I dropped out because of the SAD), except for math, were in the top of my class. I made sure that I was one of the best students even if it meant staying up all night multiple times a week to study, because I couldn’t bear the thought of having my parents/teachers think I was stupid.

    I rambled, I’m sorry. I really hope Tempest gets the diagnose she deserves (or…that sounds wrong but I hope you know what I mean) & I wanted to add that she is really lucky to a mom who is willing to fight for what her child needs.

    • admin says:

      I am so sorry you’ve had such a shitty experience. I remember so distinctly what it feels like to be in that place mentally… and it’s so, so hard. It really is paralyzing. When I say I deeply sympathize, I hope you understand it’s not pity… it’s that I know very well what that feels like and it pains me to hear of others dealing with it.
      Unfortunately you’re not the first (or even 100th) I’ve heard have such a hard time getting coverage or recognition with mental disorders. Have you considered getting an advocate? Many are available sliding scale, or even free, and can help you navigate the system without panic and fear. You can also appoint family members or even friends as your speakers who will accompany you during meetings and phone calls and that may help control some of that anxiety.

      (And sorry if any of these suggestions are old hat and totally useless).

      • Anonymous says:

        I just recently reapplied & will be getting an advocate this time around, the last time it didn’t occur to me that a disability advocate & a disability lawyer were not the same thing & I got a lawyer instead. The lawyer was completely useless in every way, shape & form.
        They seem to be under the assumption that because I have this I must live as a hermit & not be able to go outside my home at all, I understand some do but I don’t get why every person with my illnesses have to be judged the same? The general attitude it that I’m either A) lying about what I can do -or- B) lying about what I can’t do, both make me want to make them have my illnesses for just one day to see how hard it is to just get through it without a complete breakdown.
        Oh & hospitalization, I love this argument, I’ve never been admitted into a mental hospital so I must be normal. It can’t have absolutely anything to do with the fact that mental hospitals are HUGE buildings & you can’t just get out of them whenever you need to ‘flight’. Or the fact that I do much better in my own home where I’m not freaking out, or that being alone locked in a building would be the worst kind of hell for me. No, I’ve never been admitted so I’m normal.
        /rant
        It is both nice & hard to hear that I’m not the only one who has/is going through this, thank you for understanding.

        • admin says:

          All of your story is heartbreakingly familiar and frustrating. It makes me go: :-/ and >:-O at the same time.

          Do you have a psychiatrist or psychologist who can type something up talking about the social and functional limitations of someone with a severe panic disorder like yours? Or would it be possible to set up an appointment or two to explain the situation and have one do that with you? I mean, if it’s not prohibitively expensive… if you’re in need of SSI I imagine that’s probably a big deal. πŸ™

          • Anonymous says:

            For my last try my therapist (& the psychiatrist that is connected with her office that everyone is required to see) both sent copies of their notes along with their observations of what I can/cannot do with my conditions.
            My therapist WAS an approved therapist to do their determination evaluation, but because she was already my personal therapist that voided her for their needs. So basically they wanted a 2nd opinion. But what I don’t understand (& noone has been able answer) is that her office has 5 different doctors in it, why could I not have used one of them?
            Hopefully my advocate can help with the appointments & if not I will have to take my sister with me, she’s like my guard dog (lol) & has offered to go up & explain to him that he HAS to come downstairs to see me. I understand that they need to ‘stress me out’ to see that I’m not making it all up, but they DID stress me out & then refused to see it?

            • admin says:

              I’m speechless. WHAT THE FUCK. That doesn’t even make sense. Yeah, definitely look for an advocate: I hope that it goes much, much better for you this time with as minimal stress and heartache as possible.

  • mireya says:

    The whole Autism diagnostic process was gruelling. I can relate to your frustration with having a child who needs support and getting denied help. It was years of citing detailed examples and demanding help before the gatekeepers even let us in for testing.

    We have a diagnosis, and they still take away or threaten to take our services. Because he’s “functioning so well”. But he functions in the classroom only because he gets support. He still gets removed from class on a daily basis, or is laying flat on his back in the middle of the floor pitching a fit. Being smart just means you get a whole lot of expectation for behaviour. Like you should know better, except your brain isn’t equipped with any brakes.

    It sounds like you’ve got a supportive school team at least. I hope that testing and getting a diagnosis works out better for you this time.

    • admin says:

      “Being smart just means you get a whole lot of expectation for behaviour. Like you should know better, except your brain isn’t equipped with any brakes.”
      So much this!!! ARGH. It’s such a frustrating, exhausting, infuriating experience.

    • starpolish says:

      I’m not ASD, but after being told from 3rd grade on that I was so smart so I shouldn’t be having social problems has made me very wary of school systems and what we say to children with high test scores and IQ. Because I consistently scored high on tests and did well in class, at least two of my counselors “didn’t get” why I was a taret of bullies. Even at 10th I wanted to shake them!

      • admin says:

        I had a similar problem. I tested extremely high and got straight A’s until I started getting bullied badly. Very, very badly. My grades went from straight A’s 4.0 to C’s and D’s in less than a year… and the response was essentially, “You’re smart, why are you doing this to yourself”. It never seemed to occur to them that there was A REASON for that. Eventually I dropped out of public school and enrolled in an alternative high school instead. Best choice I ever made.

  • Baby girl looks like she’s lower in the color pictures and then higher again in the silhouette!

    Every time I read your words and thoughts about you and Curtis, I am reminded of my parents. 26 years and counting and I see so many similarities between them and you and Curtis.

    • admin says:

      I think she looks higher in the silhouette because my breasts are “free” to hang down and sit on top of my belly. In the bikini pictures they’re squashed so flat and held up so high that they’re practically chin rests.

  • bluealoe says:

    For some reason I thought that you’d finally received a diagnosis for Tempest. I’m not sure why I thought that, and I’m sorry you have to go through the process again. At least you have the full support of the teachers and the therapists. Good luck!!

    It absolutely boggles me that they won’t diagnose ASD/Asperger’s except for the most serious cases. For almost everything else, the focus is on early detection and treatment. Can you imagine if they treated other issues the same as they did autism? You’d go to the doctor and be told “You have cancer, but we don’t want to label you. So your options are either do nothing and have it get much worse, then maybe we’ll treat you; or go home, exercise, take vitamins, and keep it under ‘control’. Then you’ll still have cancer, but you’ll be doing fine so we don’t need to diagnose you at all. Oh, and you’re intelligent, so you’ll be okay!” WTF? (I realize this is a flawed analogy, but it’s the best I can come up with at the moment.)

    that she’s so extremely high functioning that she sort of knows how she’s supposed to act, and she wants to be good, so she does what she can to hide it.

    That was pretty much my exact impression of Tempest the last time I saw her, though I know she’s made a lot of progress in the last few years.

    I have another friend with hypermobility syndrome, and she says she can’t even walk up a flight of stairs without needing several hours of recovery time. It sounds awful, to say the least.

    You are one gorgeous pregnant women. I seriously just want to “hold” your stomach! Do I sound creepy? I’m sorry.

    Your thoughts of being part of a family make sense to me. Humans are social creatures, and we all have a desperate need to belong, to be part of something. For many people, it’s their family; for others, it’s their job, or their circle of friends, or any and all of them. I’ve always identified myself by multiple descriptors. I’m a daughter, a granddaughter, an aunt, a sister, a friend, a student, a teacher, and everything else. Becoming one doesn’t erase the others. It seems obvious to me.

    The videos about the roll of film were amazing. What an incredible adventire. I especially liked all the speculation about the subjects’ identities; the chin is Scandinavian! No, it’s Polish! The hairstyle is Turkish! Hehehe.

    • admin says:

      It is a flawed analogy, but I get what you’re saying, and I want to say YEAH THAT. It’s so fucking stupid. SO STUPID.

      It’s like some sort of weird bootstraps thing. Well, you’ll be fine if you’re smart enough… and feel good about yourself ’cause you’re smart! It sets parents (and children) up for failure and a fuckton of guilt and shame problems when they’re struggling “in spite of” their intelligence.

  • syrup_tea says:

    I love what you wrote regarding your thoughts and feelings about your family. My partner and I met in a similar way to you and Curtis and I totally get that feeling of ‘will we make it?’ not even being a question anymore. We’ve been together almost ten years and have shared so much of each other’s lives, I feel so lucky to have found someone to make a family with. We’re planning to have a baby next year and I’m excited (and kinda terrified) about that adventure :p

    I’m looking forward to reading about your life when baby #4 is born. You’re a bit of a role model for me re: parenting… I love how you seem to have such a down-to-earth view of parenting. It’s nice to be reassured that it is actually okay to have a baby if you’re not upper middle class with tons of disposable income to waste on piles of ‘stuff’. It’s so easy to get sucked into a mindset that if we can’t afford a $1000 stroller and two brand new cars then we have no business bringing children into this world! I liked your comment awhile ago about children not really costing much in the first few years… It’s so easy to lose sight of what is -really- important sometimes.

  • mammaopal says:

    I had my son diagnosed with PDD-NOS by a child psychiatrist who saw him 2 times a week for 5 months and had the diagnosis thrown out by a “specialist” who sat down with him for 20 min (and charged us $2000!)
    Most. Frustrating. Thing. Ever.

    It took 5 weeks as a psychiatric inpatient at Children’s Hospital to get a diagnoses for him that would result in school funding, after 3 years of battling to be heard. He’s still not on the spectrum, and without the magical “A” word, support services are a crock.

    I understand your frustration SO much.

    Thank you for sharing your process of taking your belly photos! I’m currently in the beginning process of learning about photography and it was super fun for me to read. I joined a “mom’s with camera’s” group out here in Kamloops, and it’s so much fun to learn in a setting with other beginners. The world of photography can become overwhelming pretty fast! It comforts me that those beautiful photos involved a plant pot and yarn!

    • admin says:

      So, so validating to hear it from another BC mom. The system here for ASDs is so deeply flawed, and it’s only gotten worse in recent years. It makes me so angry, and upset, and tearful. And then at the same time there are the dumbasses saying shit like, “Well, why can’t you just do stuff for her at home?” or, “Oh well she looks like she’s fine and she does well in school!”. Oh I’m sorry, you mean you DON’T know what it’s like to raise an autistic child and actually deal with the frustrating, agonizing bullshit that goes on from day to day? You mean you’ve never had a child that, AT SEVEN, is still tearing off their clothes and having throw-down tantrums because her water isn’t the right temperature and has too much condensation on the outside of the glass? Fuck you.

      • gardenmama says:

        At least you acknowledge it. We are so on the outside of it with our nephew, but his parents are still deeply in denial because it would mean there was something “wrong” with their son. We never really talk about it, so I don’t know if he has an official diagnosis on the spectrum or not. I think he does, but he lags behind in verbal skills as well as social, and has SID as well, leading to lots of eating issues. He is nine, but looks about six and acts even younger. And my SIL and BIL just act as if it’s a stage he will outgrow. It makes me want to scream and cry in frustration that they aren’t advocating for their child. I know it is hard, but denial isn’t going to do your child any favors in life. And being bright and doing well in school aren’t indicators that a child will be able to function socially at all, which is really much more important with how our society is structured.

        /rant

  • emilie1024 says:

    I thought I had left a comment, but I think my iPhone was acting wonky.

    I used to teach special ed and what I would tell parents is to stay persistent. You need to keep bugging admin and pupil personnel services (that is who handles the special ed department in my district, but I’m in the US). You know what Tempest needs, and I know you’ve done your research. Just stay persistent and don’t give up.

  • altarflame says:

    I LOVE that bathingsuit on you. Also, I have never liked plugs at all, but the way you put hoops through hollow ones is intriguing. My main problem with gauged holes in general is being totally grossed out by big ragged out earholes when the plugs are out O_O Also-also, this is pretty weird, but I don’t think I’ve ever seen your breasts without wanting to suck on them, and it’s like…not even sexual or something. YOU ARE MOTHER TO THE ENTIRE INTERNET, NURTURE ME WITH YOUR UBER MILK. Except that’s just me typing out a random silly thought to go with a momentary inexplicable urge…not…creepy…atall….

    Your thoughts on being so fulfilled as part of your marriage and family leave me feeling somewhat frustrated, just because, personally…I am not there. I am dealing with a whole other end of the spectrum lot of things. Which is ok, too, I guess, but it’s so fucking weird to read you saying what I would have said a couple of years ago and not relating anymore. Except that I never wanted to be a mom before I was, and very much felt my childbearing was cut short whether I liked it or not? Who knows how much those things have to do with it. Either way…with my youngest child fast approaching 4, thoughts of putting them all in school come fall flitting around my head, and Ananda eyeball-height and menstruating, this childrearing stuff really does seem like a phase of my life to me, lately. Like for the first time I realize it will be over at some point, and I will still have a whole lot more living to do. *sigh*

    I’m sorry none of that has one damn thing to do with you or your feelings about it.

    • admin says:

      Have we EVER left notes for each other that were in context? If you started only saying shit like, “I like this entry” or “Huggssssss” I would think you’d lost it.

      Your love of my breasts is perfectly acceptable. Right now, I am also in love with my breasts. Seriously though, they are so unbelievably JUICY right now. Juicy is a word that weirds Curtis out, but it’s the best way I can describe them.

      Ragged ear holes: if someone’s naked ears look like that, they’ve done it wrong. Very, very, very wrong. When my plugs are out my ears look totally fine, perfectly smooth and round. The technical term for what you’re describing is “Cat ass” (seriously) and is considered the sign that someone has stretched like a fucking moron.
      What I’m wearing in that picture (and have been for the last few months) are earskins, which are super super thin silicone. They’re roughly the same colour as my eyes, and I love them. They’re super comfy.

      Up until very recently I was totally with you on what you’re feeling, but I think for me the sudden switch has to do with impending birth and finding a peaceful place with this METRIC TONNE OF FEAR that I’m carrying about it. It’s like this light went on in my head all of a sudden and now… It’s okay again. I think that is completely to do with having a new baby and everything sort of coming together in preparation for that.

      • altarflame says:

        I recently got back in touch with an old friend who’s plugs have been out for over FIVE YEARS, and his ear holes look like the most raped and ragged out cat ass you can imagine. GO ON, IMAGINE THE MOST RAPED AND RAGGED OUT CAT ASS YOU CAN HEATHER!!

        …I am also feeling juicy in a good way. I don’t know if you saw this tumblr account I talked about trying out but I am having fun posting whatever the fuck I want on it without regard to my 15 year old nephew, local homeschooling moms, Orthodox readers or grandpa seeing it.
        http://altarflame.tumblr.com/post/3731286219/cubanmilf

        http://altarflame.tumblr.com/post/3787620098/cleavage

        It makes me really happy that you’re finding a way to cope with your fears. I know what it’s like to be overwhelmed and paralyzed with birth fears during pregnancy, until your uterus feels like a ticking time bomb counting down the last remnants of your fragile mortal life. Something I find bizarrely comforting, that I think is also true for you, is: Whatever I’ve been afraid of, in ANY pregnancy? HAS NOT BEEN WHAT HAS GONE WRONG. Not even close. Worried for myself? I was fine, the baby had problems. Worried for the baby? Opposite. Worried about uterine rupture? My uterus is FINE, they left a FUCKING SPONGE. Etc. Life is far more random than our imaginations can even try to anticipate.

        • altarflame says:

          ….even if I am getting “like”s from users like bigcockteen *headdesk*

        • admin says:

          Ear: eruuuuggghhhhh. That’s disgusting. Everything about what you’re describing is WRONG WRONG WRONG. Healthy, normal stretched ears don’t look or act like that. Ever.

          And what you said about randomness vs. fears and life… yes that. Totally.

          I’m loving your Tumblr. I feel like I finally get to see you doing publicly what you’ve been privately forever. THIS IS WHAT I LOVE ABOUT YOU. Do it more often. I can’t stand how censored you are in your blog. I don’t understand why you do it. I could give two shits about who is reading and who is offended (unless I’m being seriously offensive, that is).

          • altarflame says:

            What makes the difference, between right and wrong stretching? Are you sure this isn’t (to some degree) just one of those things, where you have amazing and even medically classifiable skin that doesn’t blow out and sag like other peoples’?

            Re: Censoring…It’s weird. Really weird. But I do not know how to stop. I’m not dishonest in my lj, there are just things that automatically get held back, like how you have a totally honest conversation with your neighbor vs how you would have it with your best friend…except that analogy is really not apt here :p

            I think that I got hit with my first real blast of trolling at my first really emotionally fragile time as an adult, and it warped how I blogged in a permanent way. I go back, sometimes, to read things from “before” the life-massacre that was 2007 and there is a wild difference in tone and content, but it’s nothing I can exactly pinpoint and no matter how I squint and try there doesn’t seem to be any going back. I also had a sudden MAJOR blowup in readership during that time that literally included every single real life relative and acquaintance and mother in law’s good friend EVER, when we were in crisis, and there’s no way to un-know that…I had that same opinion (“I could give two shits…”) before that happened, knowing any of those people COULD stumble upon it, but suddenly knowing EVERYONE DEFINITELY WAS and having the PATH president, my Nana and my Aunt DeeDee checking it daily for updates and then bringing it up to me on the phone all the time was…different.

            Something really fun about tumblr is that it has a queue where you can just sit there for an hour and plan your next 10 posts and they all go in the queue, and then you just program the settings to post one every so often. Like mine is set to twice a day between the hours of 10am and 10pm right now, and I just got my next 7 posts queue’d up. Or, you can have drafts of 3 different posts going and saved to come back to. It’s cool like that.

            It’s funny because I really only started it because it’s such a vastly different crowd over there (more hipsters, less moms) and I’m trying to increase my Internet Domination so that I can wield it like a fiery sword when I publish books. But I REALLY LOVE IT NOW. There are things I want to do on lj that I don’t want to do there (like just recount my whole day regularly, or puzzle over my faith when it’s killing me, or work out kid mysteries that I’m worried over). But it’s good to have this other thing that is completely different.

            • admin says:

              Stretching: the speed at which you do it plays a huge part, and proper stretching will never result in saggy catassery. Scroll through the community some time to confirm this. I have learned SO MUCH about stretching from lurking there.

              Tumblr: I’ve often thought about having an account for the same reason, however with the way the internet is if I open one now all I’ll get is, “more copying altarflame!” like with that formspring and video nonsense. πŸ˜‰

              Readership and such: see, a lot of people I know in real life do read my blog and it really doesn’t bother me at all. If it did, I think I would be paralyzed. I’ve used this blog as my personal therapy for so long that I don’t know what I’d do without this option here in front of me to vent when I need to…
              So, all those people “IRL” who read here: sometimes I write about them, or my experiences that include them, and they need to kind of realize that it may be weird to read. The deal is that this is my space: so my agreement for letting others know about my blog is that if you choose to read it, you choose to understand that you’re seeing a stream of my consciousness that you normally may not ever be privy to and you sort of have to realize that when you go in. You have to accept you may read things that make you uncomfortable, or angry, or upset, or that you immediately want to call me up and talk about… and I reserve the right to blow you off because I really don’t owe someone an excuse for anything I choose to write about (like graphic sex, childhood trauma, etc).
              If I found out a bunch of my family was reading I’d be shocked, and then apathetic. If you choose to take a step inside my head, then you can’t exactly act all pissy and righteous about what you find there. This blog exists largely without a filter, which is not usually how I function in real life except with my closest and oldest friends.

              (For the record, in all the years I have had my friends and other people reading this blog that has NEVER HAPPENED except in one case with one really fucked up “friend” that told me she was concerned I was deliberately misleading readers by saying things like, “I feel like I’m my sister’s mother” (this was way, way back in the day when she was like… six), and she was upset that people could actually think I was my sister’s mother… and that was ON ME to ensure didn’t happen and do my part to constantly write a stream of disclaimers with all of my entries to ensure no one misunderstood something, assumed, nitpicked incorrectly or didn’t get the context or whatever. I was like… WHAT. But she was something else).

              PS. I just now accidentally gave myself a hicky on my breast and thought of you.

              • altarflame says:

                You didn’t sound like a hipster or anything, I don’t even know what you’re talking about.

                I was thinking about this comment for a bit and I think that my blog ceased to by MY BLOG for a period of many weeks, because of our crisis with Elise in Boston….there was a period of time when we were using it expressly as a communication tool for friends and relatives, as well as caring strangers. During that time, Grant updated is as much as I did – my sister and you even logged in at least once each. I got to a point of mental and emotional exhaustion wherein I begged extended family to please, please NOT call anymore because I couldn’t stand to keep saying the same terrible things to one person after the other – “just check livejouranl, I promise to keep updating”.

                When I was in the ICU months later, Grant would come in and tell me about the entries he’d made and the feedback he’d gotten while I was NOWHERE near a computer, and on my birthday he brought a scroll of comments that pooled on the floor, of well wishes, which was WONDERFUL.

                ….but all of it changes the dynamic a whole hell of a lot, too. Prior to that it was My Thing About Whatever I Wanted, and for a mysterious anonymous “could be anyone” audience. Definitely a turning point and an adjustment.

                I do think I’m getting better about it. But, for the last 8 months, it has been sort of necessarily censored because I just don’t/can’t broadcast Grant and I’s super personal relationship problems that way, and they have been the dominant theme in my life….which makes the whole concept of blogging sort of generic and lame. Our stuff started near the time my wordpress site started and I think that’s part of why the wordpress site always felt crappy…

                One of the reasons it’s easier to be honest on tumblr is because the format is different; I’m not baring my soul in an epic tl;dr stream of consciousness wherein little omissions are censorship. I’m presenting little nuggets of truth out of context. Which is freeing (but also limiting).

                AS FOR YOU, MISSY. It is COMPLETELY COUNTER TO EVERYTHING ELSE YOU JUST SAID ABOUT THIS BEING FOR YOU AND FUCK EVERYONE ELSE’S OPINIONS to be like “but I can’t make a tumblr because then the internet will think I’m copying altarflame” πŸ˜‰

                • admin says:

                  Haha, pwned. Totally different context, but still you’re right. lol

                  As for the rest of it: the circumstances of having your blog opened to your personal circle of friends and family is something I didn’t think about, but considering that it would make it difficult to sort of put it back in the bottle after it played such an important role to people close to you during a traumatic time.
                  I don’t know, I feel like you should put out a big disclaimer and have it sticky-noted (howevr the hell people do that) to the top of your blog page that says, “I gave you guys all this link during the Elise crisis and I really appreciated everyone reading, but now this needs to return to my personal space so I humbly ask for family members to respect my privacy and my right to have this place as a safe space to discuss things that are intimate. If you continue to keep reading, I respectfully ask that you keep it to yourself. Thanks for understanding”
                  or whatever.

            • admin says:

              Reading it back… That whole blog thing sounded REALLY self-righteous and hipster ish and please understand I did not intend it to come off that assholish. Ugh. Please understand what I meant underneath that. I am so lacking in the verbal department tonight.

  • azdesertrose says:

    I wish you all the luck in the world getting Tempest properly officially diagnosed and treated. That has got to be super tough.

    Love the tattoo and the pics of it. I agree with an above poster; it’s as if Jericho is holding up his little sister.

  • crustyshoes says:

    I’ve worked with a few children with Asperger’s, as well as having an older brother with Asperger’s, and it frustrates me how hard it is to actually get a diagnosis and access to proper care. There is a lot of “but they’re smart, their grades are excellent, they’re fine”, as if the only important thing is high grades. Today I ended a field placement where I taught in a classroom with a boy with Asperger’s, and yeah, he was miles above the rest of the class in terms of academics, but at 10 years old he had very low impulse control, so much trouble socially (especially with reading social cues), and more than once a week he was on the floor when things didn’t go his way, and this is so much better than how he was even a year ago. This kid has been blown off by experts most of his life just because he has always had excellent grades. I’m sorry that this is happening to Tempest too. It is frustrating enough as a teacher to not be able to get the appropriate help for a student, I can’t imagine what it must be like to be a parent in this situation. I do hope things change.

    • admin says:

      Thank you, this is really validating to hear from another teacher who is feeling the same strains… it’s good to know. I mean, it’s bad that it happens, but it’s reassuring to hear you say… is this making sense? I hope I don’t sound like an ass. :-X

      • crustyshoes says:

        No, you’re making sense. I understand what you mean πŸ™‚
        I hope that having more people behind you this time helps and you do get the proper diagnosis. I’m keeping my fingers crossed for you guys.

  • ikaya says:

    Delurking to say thank you so much for posting the link to the Japan Earthquake people finder – I was able to find a friend of mine who’s currently an exchange student in Sendai through it who I’ve been worried about all day long. Now I’ll be able to sleep peacefully!

  • tastyanagram says:

    1. I wish you all the best of luck with getting the official diagnosis for Tempest. I’m so glad that she has informed teachers and other people (and you guys!) working with her and doing what they can.

    2. This is a bit hard to introduce because I don’t think you know anything about my life, but I also have always wanted to be part of a family and don’t think that it takes away from being myself. I feel rather lonely when I am not part of one, and my boyfriend just broke up with me two nights ago and I feel as though my world has collapsed. I feel terrified.

    3. Does “stims” refer to stimulating behavior?

    4. My friend just showed me this following blog post from a grieving father about losing his newborn son to GBS. Unfortunately he seems to be lashing out at the institution of homebirth rather than the fact that the risk was misunderstood by him and his wife. Thought you might find this interesting: http://blog.dreamhost.com/2011/03/09/wren-jones

    • admin says:

      I’m sorry about you and your boyfriend. πŸ™ I can’t imagine what you’re feeling right now.

      “Stimming” does indeed refer to self-stimulating behavior. Arm flapping, paper tearing, toe-walking, hitting herself in the head, etc.

      As for the link, I can’t bring myself to finish read it. Not because of the mention of death, but because I get really angry and upset when people take out their ignorance by willfully becoming MORE ignorant. The “research” he claims to have done on GBS is incredibly bogus… and he cites Amy Teuter, a well known troll, as his hero through all this. If he’d taken the time to do real research he would have easily found that GBS deaths are so incredibly rare (and yes, that includes places that do not routinely test or treat for GBS), symptomatic and even with “preventative care” it’s not guaranteed (unlike his 99% stat that he casually referenced). The fact is even with no treatment or testing the chances of a baby even contracting GBS in a homebirth are so slim that it’s practically nonexistant. It’s higher in a hospital birth. From there the largest risk is blindness, not death, and that risk is the result in approximately 5% of positive cases. You’re looking at a likelihood of something with a dot and about ten zeroes. His quest to scare the shit out of people is misguided and fucking stupid.
      When we were pregnant with Tempest and the possibility of testing came up we did a TON of research into the topic and what we found was kind of alarming.. not due to deaths, but due to giving millions of babies and mothers high doses of antibiotics and other medications that have no long term research for ABSOLUTELY NO REASON. This is especially problematic because testing for GBS flora at 36 weeks has very little bearing on whether or not it will be present at your birth which can be up to 8 weeks later. I just… argh. I’m sorry his kid died, I really am, and it’s really sad… and I understand that grief does shitty things to your mind, but this is not an appropriate way to handle that grief and anger, and he’s being a fool.

      • tastyanagram says:

        Thanks. I’m not doing great, of course, but I could be worse. It wasn’t an angry breakup. And I have good friends.

        I got so upset about the post too. I thought comment #48 was spot on. The commenter just somehow very politely says that if you are misinformed and make a decision then it’s the fault of the person who gave you the misinformation and it’s also on you because it’s your decision. It doesn’t matter whether you give birth at home or in a hospital or in a field, there’s no one choice that will make it “safe” and let other people’s decisions make things turn out right. Babies die. It’s excruciatingly horrible and I understand that he is deep in grief but I just wish he hadn’t stood on this soapbox. A lot of people will read that blog post. Thanks for the information about Amy Teuter being crap.

    • Anonymous says:

      I did read the link & there are two things that bother me alot about this guy.
      Number one, as someone who has never had a baby (but has been around them her whole life) even I can tell you that baby’s breathing sounds bad/labored/not normal. Maybe this sounds a little worry-ish but as a new parent who (obviously) didn’t know anything about babies, I would be getting that checked out, not giggling about it on video.
      Number two, he said that he was wearing a red shirt & that’s why he didn’t notice that the baby was turning blue, but he doesn’t have a red shirt on in the videos? I realize he could have showered/changed but idk, that just seems weird to me.

      • admin says:

        I understand why you posted anonymously to say this, but I’ll happily back you up with my name attached. There are a LOT of things about his story that are fishy, and you aren’t the only one to point it out. There’s a bit of discussion going on under the current, but no one seems to have the balls to voice it because it’s got that grieving parent card attached to it and that means that this guy can do no wrong… which is bullshit and just pisses me off. I hate it when people play the dead baby card in order to be huge, ignorant assholes and get away with it. The guy is a fool. I’m sorry his kid died, and I understand grief does horrible things to you, but it doesn’t change the fact that he’s a fool.

        All of that aside and regardless of the parents part in it, it’s flat out medical neglect for their doctor to have the results of a culture that shows a massive risk of high colonization and just… forget about it. Homebirth didn’t kill their kid, or even have the slightest most REMOTE thing to do with their kid’s death; neglect and ignorance on all sides is what did it. Period.

        • Anonymous says:

          I posted anonymously because I don’t have a livejournal account (I found you through the no-poo & have been randomly lurking ever since). I have had 2 lj accounts that went deactive(?) because I’m either too lazy or not interesting enough to keep them up.

          You brought up another good point, how do you just except the fact that you have something (GBS) without doing ANY research about it? With my first pregnancy I found out I was Rh-, even though the doctors told me that it was absolutely no big deal, I still went home & did a shitload of research on it to learn all I could. It was my body & my pregnancy/baby, how can you honestly excuse just walking blindly through something so life changing & then blaming someone else when YOUR decisions go badly?

          • admin says:

            I apologize for assuming about the anon identity. πŸ™‚

            A lot of people don’t have the access or ability to research those things, which is why attentive and regular prenatal care can (and is) extremely important for a large majority of the population… that said I get the impression these guys were supposedly quite gung-ho about being educated and prepared, which is part of what confuses me. From the limited information I can glean from that story, I really can’t understand how the baby managed to go into respiratory failure from septic shock before ANYONE saw something was wrong.

            When Xan was born he had very fast breathing that developed within about 3-4 days. No other symptoms, just very fast and shallow breathing. I actually took a video of it to show to friends because I was so concerned. I did online research (which came up with mostly scare tactics and nothing concrete), called a nurses hotline (which was equally useless) and then decided to take him into an ER when the doctor was closed to make absolutely sure he was okay. They did a number of tests, including a chest x-ray, and determined he was perfectly healthy and it would go away in a few weeks time. Which it did. I also took him to a follow-up doctor appointment for a general health check some days later which confirmed that he was in perfect health and this was just a variation of normal. I don’t think I wrote about it publicly, but the point is that as a new parent you NOTICE things like that and I’m not sure what would prompt you to ignore symptoms of septic shock for hours and hours and hours. I mean, I don’t know the details of the situation obviously… but it seems strange from this limited POV.

            • Anonymous says:

              “as a new parent you NOTICE things like that and I’m not sure what would prompt you to ignore symptoms of septic shock for hours and hours and hours”
              Exactly.

              I understand that alot of people don’t have the access (or tbh the understanding) to research this, but your right these people come across as smart enough to do their own research. Which is what really bugs me, even the simplest google search – ‘Group B Strep’ comes out with this site (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002342/) as the top result. Lethargy, poor feeding & grunting noises are all symptoms on that list & they are all symptoms that the guy mentioned he noticed in his son. Even ‘newborn grunting noises’ comes up with this as the top result (http://www.webmd.com/parenting/baby/your-newborn-babys-breathing-noises) which also lists the same symptoms as something to worry about.
              I mean really, this guy couldn’t even do a google search to see what could be the reason for his newborns weird breathing? Even calling a nurse line may have saved his life. And I know that alot of what you find on google is scare tactics, but as a new parent with a newborn sometimes it’s better to freak out a little & have it be nothing than no freak out & something very bad happen.
              And also, no matter who I had handling my pregnancy, if someone told me to put a clove of garlic in my vagina, you can bet your butt I would be looking it up lol

              I may sound heartless & cruel, but while I do feel sorry for the child that died, this father trying to blame everyone but himself is just proving he’s a jackass.

              • admin says:

                No, I agree with you. He IS being a jackass. He also cites Amy Teuter as an educated source and she’s a well-known troll. His stats are either fraudulent or out of context, and the information he had up there was poor and inaccurate AT BEST. He STILL hasn’t done his research.
                I get that grief and anger can make you want to blame someone… but blaming homebirth on a whole doesn’t even remotely make sense. I honestly don’t even understand the connection between, “my baby died of septic shock and respiratory failure from an untreated (but not undetected) GBS infection” and “birthing at home is what killed my baby”. If you want to blame someone, blame the care providers for being flat out dangerously negligent.
                I’m also extremely skeptical of the idea that changing the birthing location would have made that much of a difference if the infection was ALREADY NOTED, no treatment was offered or given, and it was so badly colonized that the baby died in 11 hours (and checked out “fine” in their newborn exam, even after a three hour observation period). I don’t know dude… like I said: fishy. The whole thing is weird. I feel like either the baby did not die of GBS (perhaps he also had it present, but merely as a secondary problem to something major) or he’s only written about 1/5th of the story.

                • Anonymous says:

                  That is the problem with hearing only one side of the story, I really wish we could hear from the midwife & hospital as well.
                  I’ve never considered a homebirth (not so say I’ve never looked into what it is) & would gladly waddle my big pregnant self into the hospital for child birth. BUT, that’s not to say that I believe home births are dangerous or should be illegal. I am though starting to think that couples planning a homebirth should have to take some sort of class or test to make sure they are ready.
                  FWIW, I wouldn’t do a homebirth because I KNOW I am too much of a worrier to ever have that kind of courage/confidence in myself. This has gotten me some snotty comments on the more…’crunchy’ forums, which seems kind of ironic to me. If I went into it knowing that I wasn’t ready & something bad happened, would they really feel better because I tried or I be the newest devil of their world for harming my child? (admittedly, the 2nd wouldn’t be far from the truth in that case)

                  • admin says:

                    Those kind of advocates are the blind advocates, and it’s the type that make the rest of us look bad… the birth advocacy I can get behind is the kind that believes all women deserve equal opportunity for education, support, love and proper care. And that WITH those things they can reach a place of truly informed consent, from which they can make decisions about where is the most comfortable place for them to birth without fear or scare tactics or manipulation: whether or be hospital, home, birth center or unassisted. The idea that all women should birth at home regardless of their comfort level is as stupid as asking that all women birth in the hospital regardless of their comfort level: either way you’re ignoring the most important piece of the puzzle. In my ideal world, homebirth would be seen by all parties as an equal experience to hospital so that everyone had a perfect 50/50 starting point in which to make their choice… but until that point I’m going to be an advocate for natural birth and homebirth because hospitals and doctors don’t really need much more rah-rah-rahing, you know?

                    That said, this is exactly why I have been a UCer but IN NO WAY advocate it as an equal opportunity birth choice next to hospital and home: the amount of trust, readiness and careful preparation that goes into the choice to UC is very vast… and it’s NOT for everyone. I would never, ever suggest it casually and I think it’s both unwise and dangerous to do so. A few years ago there was this weird surge in the popularity of UC and I distanced myself from it as much as possible. I saw so many moms choose it without any preparation or background and every last one chickened out at the last minute and ended up with a hospital transfer and a much more traumatizing birth filled with unnecessary interventions… far more than they would have had if they’d just chosen a hospital birth with a doula/midwife/whatever in the first place. Then they go around bashing all those who UC when the reality is that they really just made a very inappropriate (and totally unprepared) choice for their situation. Don’t take this shit lightly!

                    As for the forums: those super crunchy forums are too crunchy even for me, dude… and I’m pretty deep into the hippie lifestyle. Those are the kind that generally have people saying things like, “Rea moms never ever raise their voices or ever get mad at their toddlers and have nothing but perfect, unadulterated love”. And not only do I think that’s total bullshit, but I also think it’s unhealthy: your kids should see their parents dealing with negative emotions as well.

                    • Anonymous says:

                      I’ve never seen you post anything like that (super crunchy, 1-way-or-no-way) & I hope you didn’t think I was implying that πŸ™‚
                      It’s just that when I read those comment they make me go o.O & wonder how they would react when/if something did go wrong, like with this couple. They obviously didn’t know what they were doing, but did it anyway. Even with a midwife’s presence/help they still didn’t know what to look for as in signs of their child not being able to breath.
                      And you know, I don’t even fault the midwife as much as I do the hospital & the parents, because the midwife told them to get the test done at the hospital & bring her the results. She should have asked them for the results when they didn’t show up, but that doesn’t mean the parents (who skipped the appt to go to Vegas) aren’t still responsible for getting the results. Yes the hospital didn’t call, but her next appt was the day after she delivered so they may have been planning on telling her then.

                    • admin says:

                      Oh, I’ve had my moments… believe me. Especially in the beginning when I was first opened to APing and such and I didn’t understand the deeper issues. I’ve learned a lot more since then.

                      The rest: Yeah. I don’t know. Regardless, there’s more going on. It’s very sad, but the hate-on for homebirthers as a whole is really, really inappropriate. People keep featuring his story for “a look at the other side” and it’s like linking to Amy Teuter’s blog for a “balanced look on homebirth”…

  • effervescent says:

    Oh, I wish you luck with Tempest :/ A friend of mine was doing her placement last year here in Vancouver and she was talking about how it’s difficult for kids to get diagnosed or treated.

    Your pictures are beautiful, truly.

  • “There comes a point in a long term relationship where you realize that arguments, incidents and stages no longer threaten the question of, “will we make it through?” because it’s now assumed you will. You have, and will continue to inexplicably survive life’s challenges, now as a couple as you once did on your own. The question is never again, “Will we make it?” but rather something more simple, like, “When will this be over?”. Everyday challenges are no longer potentially life-altering, but seem fleeting and therefore more manageable after you’ve had years of experience pulling you both through some of the darkest places of your life.”

    Mark and I haven’t been doing well. I read this paragraph to him and it really helped explain how I’ve been feeling and open the doors to communicate with each other. You said it in a way I couldn’t and I can’t tell you how much I appreciate that.

    Also, the pictures….you are the definition of beauty.

  • bolton_bunch says:

    I love the silhouette. You do a good job taking photos. The tattoo is very unique and cute.

  • maewitch says:

    I didn’t realize getting an ASD/Aspergers diagnosis was so difficult in BC. : /

    Can I ask – I know what stims are, what do you mean by ‘hangs’?

    • admin says:

      You’re not the first to ask that and it totally didn’t occur to me that it sounded like I was speaking some sort of coded language!

      I mean literally hangs. For instance, instead of hugging she often hangs off people when they ask for a hug… which can be uncomfortable or even painful. It’s part of her stimming behavior and she tends to do it A LOT once she’s started losing it.

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