Well, that was fun, wasn't it? That post very quickly spiraled from, "Wow you have so much determination, that's awesome that you worked so hard!" to, "Here's a list of things I know you spent money on, you have fucked up priorities if you can't beg for money/spend/sell your possessions so you can fly across the country/to another country for a procedure she may not even need/be eligible for/that you can afford at this point".
I got featured on KellyMom (whoa!) which quickly was shared and reposted to a bunch of other places. Some welcome, some awesome, and some not so awesome. Such is the reality of posting shit on the internet. My bigger posts have been passed all over the internet for years like this, but this was rather fast.

I think a number of people who randomed in missed the end of that entry, which talked about the fact that Zephyra is making really amazing improvements and is actually doing pretty well right now. We worked extremely hard, and continue to, and I'm really pleased with how well she's doing. Her tongue mobility is improving, lengthening, she's using it better and learning to curl with it… she feeds better and continues to do more every day.
We had another home visit from the speech pathologist today, who has taken time out to do extensive research on posterior tongue tie in response to our case and has contacted several of the doctors specializing in it that she's discovered online (Kotlow, et al). After our hour visit this morning, she noted the same things we have: Zephyra's tie seems more functional than physical, as her progress has been so significant. I've asked for a follow-up swallow study in 6-8 weeks so we can see how her physical ability has improved (or if it has improved, rather than simply compensation) and will make more decisions then, but at this time she strongly agreed that there's really no reason to do anything more drastic or invasive as her functionality has improved so much.
That may change – I can't tell the future – but for right now I'm pretty damn pleased.
She's been taking down the domperidone a little easier now, and I am seeing it make a difference. Yay! There's been less spitting up, and when she does there's less of it. With the OT her latch has improved and she's no longer crying at the breast at every feeding. She's also been able to take milk from a "regular" wide-neck bottle two more times, each time taking less effort on her part. She starts to have a hard time once it gets down to about 1.5oz left in the bottle… at which point she finds it very difficult to extract the rest (angle? not as much flow?).

Anyway, the point being that at this point what we're doing with heris working, and given the financial and physical toll that traveling across/to another country would take on my family and me it's not feasible to do so at this point in time for a procedure we're not even sure she needs, not sure is applicable for her situation, and not sure would help any more or less than the therapies she's doing right now which are less invasive, less painful and free.
Let's say that again: the therapies she's doing right now are working, and if they're working and she's making improvements, there is no reason to assume that it's "neglectful" to travel across country (or out of country) for a surgery that may not make any more or less difference then what is happening right now.
A month ago? Totally*. Now? Not so much.

To be honest if the procedure was here I'd likely be making an appointment to have it considered right away, but it's in New York. Or Montreal. And we're in a situation where that kind of travel is not feasible. And given her tremendous improvement it sort of makes the situation a little different?…

* This answer reflects personal desire, and doesn't actually solve or address any of the issues I have in getting there.

Also, a piece of advice to random people who come in wanting to talk about the things they know about a certain subject that you suspect others may not. When you're trying to get people to see your brilliance you might want to avoid the following:
– Classism
– Ableism
– Policing the poor
– Ignoring someone's personal or religious boundaries (including triggers) after they've clearly set them
– Telling people you're, "sorry they're so misinformed" (decode: "Wow, it sucks that you're dumb") when they politely say that x something isn't right for them.
– Using your own abilities and financial situation to judge the range of someone else's
– Making assumptions about someone's knowledge base, abilities or motivations without actually asking them.
– Deciding someone's financial or physical challenges are a result of them not 'trying hard enough' and accusing them of having misplaced priorities when they repeatedly explain to you that they don't have the same freedoms or abilities that you do.
– Being a dick.

Just a thought.

But still, that was fun right? The intarwebz, dude. It never gets old.

For anyone who has concerns about their babies and PTT, there are a ton of resources on the internet for information about it. Dr. Jack Newman has some, as does Dr. Kotlow, and you can find PDFs with slides showing functionality, symptoms as well as pre/post treatment and how it changes a baby's ability to eat phenomenally.
We've been fortunate that a less invasive route has been making huge improvement, but others are not so lucky and/or the tie is more severe, so please do take the time to read more about it if your baby is being affected. You can try Googling those terms, or digging through the notes in the last entry, but I wouldn't recommend the latter. It's like looking into a breastfeeding advocate funhouse mirror: all those stereotypes about the insane, dispassionate, condescending "boob nazi" come to life! It's kind of like finding out the mythical breastfeeding-in-public advocate who takes off her top to nurse in the park, screaming, "It's my right! Look at my lactating tits!" not only exists, but runs a cult with several hundred members.

OKAY SO ENOUGH WITH THAT.

A number of you requested to see the swallow study video if I got ahold of it, and I made a copy of the disc today and found a way to view the files (which were medical imaging files… making it very difficult to 'play' them on my computer) and then transcode them as something else, upload them to iMovie and create something usable that I could upload to YouTube. IT WAS FUN. Except not. Anyway, here it is. Feel free to share if you'd like and think you know someone it might help.


The kids have been awful the last week. Tempest has been backsliding, and her behaviour has become worse and worse. With neurotypical kids you can generally pinpoint some stressor that set off exceptionally bad behaviour, or "acting out", but autistic kids often go through cycles like this… and for whatever reason this is a down cycle for her.
She's my brilliant, beautiful eight year old girl but when this kind of thing happens it reminds me that she's functionally about four years old. She even gets along better with kids that age, and it becomes more obvious as time goes on and I see her peers starting to break off into cliques where they talk about boys or Selena Gomez. It makes me worry for her puberty. For her teenage years. Will this get better? Will she make another huge leap forward? Will she become socially, functionally "normal"? I can't even take the answers from other parents of autistic kids, because autism is such a fucked up spectrum of random shit that the kids' development ends up completely unpredictable.

She recently learned how to lie for the first time, and now every word out of her mouth is a lie. I can't get her to stop. No amount of consequences, conversation, explaining, teaching or empathizing makes a difference. She recites her scripts and then goes right back to doing it again.
Around the same time she learned to lie, she also learned to steal. Not from stores, I don't think she'd ever go that far, but from our home. She steals treats and snacks after being specifically told not to. She steals school snacks and stashes them in her bedroom. She climbs up and raids the cupboards as soon as I try and put baby to sleep and then lies about it when I ask her if she took something. It's not even like it's simply about being "too hungry"… because this happens when I'm in the middle of making her lunch and step away for five minutes, or even immediately after lunch.
After she single-handedly managed to eat through over $25 worth of school snacks in one ten-minute sitting – not once, but a dozen times – we had to resort to buying locks for the cabinet and fridge. Normal child locks won't work as they're designed to fool infants, not eight year olds, and while she may be autistic she's not stupid. I found a few sites online that specialize in safety and therapeutic equipment for autistic children; more advanced locks, schedules, organizers and visual helpers, social stories and a number of good ideas.

Curtis and I sat down on our own the last few nights and went through all of Tempest's recent problem behaviour, tried to find roots, tried to find answers, tried to find ways to prevent the situations from arising where she's tempted to do these things (the same way you try to redirect and change the environment around a toddler… who cannot be taught otherwise) as simply sitting down and explaining to her that it's wrong just doesn't work. It's not that easy with autism.
I remember being on a message board back when Tempest was a toddler and going through some phase about biting or hitting or something, and the women there suggested I simply wasn't empathizing enough with her, and that the real answer was to tell her how much it hurt me so she'd be moved not to do it. I laughed out loud, and the more I tried to explain to these women that empathy is not something you can easily (if at all) teach to an autistic child, the more they insisted I simply wasn't trying hard enough, or that their four year old that they claim is autistic for absolutely no reason responded to their attempts at empathy so I simply wasn't doing it right.
I gave up on that message board. I gave up on a lot of them after finding very, very few that had a membership open to considering special needs parenting and the unique challenges that brings. There seemed to be no happy medium. I could find mainstream SN boards that often employed corporal punishment and methods I wasn't comfortable with (which also meant getting chewed out for so much as mentioning that I breastfed or cloth diapered), and I could find hippy-dippy natural parenting boards where the women seemed completely unable to understand the difference between neurotypical children and those with autism… and none provided the emotional support I desperately needed when she was a toddler and we were struggling so hard to understand her.
There's a line between good intentions and being an ass; once you start ignoring what people are saying about their personal circumstances, and deciding you are completely unwilling to tailor your advice and teaching to meet another person's unique needs… you become an asshole. If you need a good example of this kind of behaviour, go back one entry and see how a "doctor" displays some atrociously bad communication skills when she responds with, "sorry you're so uneducated" to someone who politely said that chiropractic care was not right for their family.

Anyway.

We came up with a few ideas to try and keep Tempest busy, motivated to behave well and understanding that her actions have consequences. All the while, she was being… horrible. I spent two straight days alternating between screaming at the kids, and locking myself in my room for ten minutes so I could cry. At one point I yelled out, "When other kids are this bad do you know what their parents do? They hit them. With sticks."
Tempest and Xan looked at each other incredulously.
"That's right," I added. "With sticks. Aren't you lucky you just had a mom who yelled at you!"
"That's not true, parents don't do that," Tempest said.
"Yes they do. It's called a switch! They take a stick from the backyard and pull down their pants and hit them on the bum. In the front yard. Where all the neighbours can see!"
I did not even care that it wasn't true at this point, I just wanted them to stop destroying, ruining, breaking, ripping, hiding, lying and tormenting for five fucking minutes. It worked. For exactly five minutes. By the end of the day they had a visit from the Anti-Claus and I took every last toy away from them and shoved it in a garbage bag. They're slowly earning them back through daily chores. Lots, and lots, and lots of chores. They've washed, dried, folded and put away all the laundry in the house for the last 5 days; magic eraser'd all the walls that they drew on with permanent markers, scrubbed the bathroom floor where they ground dirt into it, had to make their beds once a day and immediately stop what they're doing and go back and do it again if they pull the sheets off and throw them outside and/or try to rip them up, they have to feed the cats and change the litterbox, clean the tub since they are fond of walking around outside barefoot and tracking their filthy feet into the house and then dancing in the tub so it's covered with shit… the list goes on. I'm so fucking pissed at them I can barely contain it, and this is the safest outlet.
You know, outside of hitting them with sticks.

We bought Tempest an alarm clock with a really hideous buzzer so she'd be forced to get up for school in the morning since she'd have to climb out of bed in order to stop the noise. It does have a radio setting as well, which proved to be more effective.
We culled down their clothes to a much more acceptable ten outfits (plus clothes and dress-up) and bought them their own cat-proof laundry hamper (as the cats will piss in dirty, smelly clothes piled up on the floor in protest of us keeping a dirty home) so they will be in charge of doing all their laundry from this point forward. This is in hopes of preventing the bullshit of them hiding their clothes to avoid putting them way, and shoving dirty clothes in random corners of the house where they rot and mold for days or weeks before we find them.
We're also working on introducing a new "I'm working for" motivation schedule where daily and weekly chores are outlined along with a reward they can choose when they're completed. Daily chore rewards are things like computer or TV time. Bigger chores earn stars, or points, and can eventually be traded for much more interesting rewards like a day at the movies or a new game if they rack up enough.
On top of that, we're drawing up social stories (a task translated through pictures) that we're going to frame and put in helpful places around the house to remind them of menial tasks, like how to brush their teeth, when and how to wash their hands, and how to remember to take their fucking lunch boxes out of their damn backpacks when they come home from school.

Fuck dude, sometimes this parenting shit is hard.

I'm kind of having one of those weeks where all I want to do is sit in bed eating candy.

Quotes of the Day:
Curtis had been adopting this totally ridiculous faux-President-Bush accent and talking about bad American stereotypes all evening, arguing with me about my silly "Canadia" while he walked around putting away laundry. (Keep in mind, most of his family is from the southern parts of America and he totally grew up grew up in this southern, Lutheran, conservative, totally insane 'stereotypical American' kind of family).
For some reason we got onto the topic of frotteurism, and the subway, and he responded to one of my claims with, "That's what 'dem fancy NEW YERKians do. We real 'mericans don't take no subway. We get our chauffeurs to drive us around!"
Me: "Real American's don't have cars big enough for that. They drive pick-up trucks."
Him: "My chauffeur can drive me 'round these parts in my pick-up truck like a REAL 'Merican! That's how we do it in 'MERICA."
Me: "How the fuck would you have a chauffeur even drive a pick up truck? Doesn't that totally defeat the purpose of having a chauffeur? Where would you sit? In the back? On a dirty mattress?"
Him: "It's a stretch pick-up truck."
Me, imitating his bad accent: "HEY DRIVER! SLOW DOWN! THE DOG FELL OUT!"
Him: "Wait, get me 'mah twelve gauge, he found me a duck!"

Links of the Day:
Top five reasons you should never piss of an Autism mom – Yeah that.
Disappearance – A fascinating (although a little chauvinist at times) article about the "disappearance" of women's pubic hair through cultural vectors (ie. encouragement to shave, the idea that pubic hair is 'dirty', pornography, etc), and what that means for female sexuality. It's an interesting look at the topic, and while I may not agree with all the points it is still a good read.
Whipspider Rubberworks – Some of the most intriguing sex toys I've seen online since the baby Jesus butt plug!
Watch post it notes – This is a brilliant idea. How come they haven't done this before? Post-Its shaped like a wrist watch so you can wrap it around your wrist and not forget it.
Would you ask me that question if I were a man? – "You work outside the home? But you have a baby!", a great post addressing internalized sexism, and how women contribute to misogyny.
Setting up realistic expectations for birth "So, what can we do to convey to a woman that birth is a tremendous rite of passage for the mind, body and soul? To let her know that when she gives birth, she will be fighting a battle of sorts, trying to hold on one breath at a time. That she will be tested in ways she never knew existed. That she will go into labor one woman and come out a different one. That she will be taken to an alternate universe with only her connected baby as her companion. That fear doesn't serve labor. That when the tremendous act of giving birth cannot be managed by the heart, soul and mind of a birthing mother, the body is fighting an uphill battle.
How do we convey these more realistic messages to women without scaring the pants off of them and causing the fear that we're actually trying to help them let go of?"

Comments

comments

87 Comments

  • crunchynurse says:

    Identifying Posterior Tongue Tie

    This is brand new. Dr. Kotlow shows how to examine an infant for a posterior tongue tie. Nice resource to share.

    http://www.youtube.com/watch?v=5opSbXvL7yQ&feature=share&mid=5411212

  • Anonymous says:

    Thank you.

    This sounds so familiar to what I am going through. You just put everyone of my emotions to this post. My eight year old has Aspergers and this has been one of those weeks I feel like getting the stick and using it. I have not but I have resorted to screaming. I went last night and locked myself in my room and told him if he came near he would regret it. Apparently I got my point across. He went to bed without a fight for once this week. I really needed to vent this. I guess what does not help is I am single and do not have a vehicle. I also home school and after all day of being trapped here I sometimes explode. I thought I was a bad parent but thank you for putting into words what I want to say.

  • delababy says:

    The lying

    When my little Aspie brother learned to lie, his therapist told us to really try and remember that it shows development and try not to let it get to us. The fact that she is realizing that others are not always thinking/feeling the same way she is at any given time is good. Also, being brutally honest at all times is not the way to win the social game. It was infuriating with Derek mostly because he was so HORRIBLE at it, and he had no idea how to limit to one or two lies a day. It got better, though. He calmed down about it when he realized that he was not a good liar and everyone knew what he was doing. Funny enough, it was right about 8 when he figured it out too.

    • chem_nerd says:

      Re: The lying

      Another complication is the inability to tell the difference between a little white lie (telling someone you like their new shirt when you actually think it’s hideous, so that you don’t hurt their feelings) and a just plain lie (“oh, no, Mom – I didn’t steal the cookies from the cookie jar”). Some Aspie kids (myself among them, once upon a time) having figured out it’s okay not to be brutally blunt so that you don’t hurt someone’s feelings because their Justin Bieber t-shirt is butt-ugly, have a hard time separating that untrue statement from various other untrue statements – it’s the same act either way, so what makes it okay in one situation, but not in another

  • bluealoe says:

    I didn’t join the debate on the last post because you were doing just fine explaining yourself and I didn’t think you needed anyone riding in to “rescue” you. But I read most of the comments, and I’m just flabbergasted. It sounds like Zephyra is doing really well right now, and I hope she continues to improve. πŸ™‚

    I can’t make heads or tails of the swallow study video, probaly since I know nothing about how a baby’s swallowing is supposed to look, but it was interesting to watch anyway. You can see her skull!

    I wish I had some magic advice that would solve all of Tempest’s issues, but it sounds like you’ve tried pretty much everything already. I’ll be thinking of you and your family and sending good thoughts.

    (Semi-related story: My sister has been using the sticker system with my 5-year-old nephew, where every time he does one of his daily tasks, such as brushing teeth or putting his plate in the sink, he gets asticker, and he can trade a certain number of stickers for YouTube time. He can also lose stickers for had behavior. It worked well for a while, until the day when we threatened to take a sticker away; his response was to go and get a marker, then proceed to happily cross out a sticker. Not the response we were looking for…)

    I hope you got to sit in bed eating candy for at least a little while. πŸ™‚

  • chem_nerd says:

    Would you ask me that question if I were a man? – “You work outside the home? But you have a baby!”, a great post addressing internalized sexism, and how women contribute to misogyny.

    I just saw an interesting flip-side to that yesterday. When one of my coworkers got up yesterday morning, one of his three kids was sick. His wife works as a sunday school coordinator, and her off time is far more flexible than his, so she’s typically the one who stays home with sick munchkins. When he went on break, however, he found that he had a text message – not only were all three of the kids (ages 9, 9 and 4) sick, so was she. She can handle three sick kids, but not when she’s sick too. So my coworker went to our supervisor and asked if he could take a half day of sick time to go home and take care of the kids so his wife could get some sleep – and the boss actually questioned it (though he did end up okaying the half day). And back in the lab, a bunch of us were going WTF – Sam needs to be at home, of course his wife and kids are his first priority! And I have to wonder – if it had been a mom who needed to go home early because of sick kids, would she have been questioned?

  • j_lew says:

    Hmm dont come on LJ much anymore but I see things are as , well , challenging as ever for you πŸ˜‰ ASD message boards were something I learned my life was happier without a long time ago. ha. Ive screamed like a lunatic at Dave occasionally when hes kept up a constant barrage of behavior enough to drive anyone insane and tapped his hand and bum when he’s tried to launch himself out of the window, find some way of setting the house alight or ( insert some action here that will cause death or serious injury to himself ). Anyone who would like to lecture me about that can go f**k themsleves, unless they know what its like, and those people generally sympathise.

    soldier on, soldier on.

  • Anonymous says:

    Hey again. I posted the other day (a.k.a. Dou-la-la, as you noted) with a bit of info re: my own story with a posterior tongue tie (and lip tie, and a host of other fun, Perfect Storm kind of ingredients, but the PTT being by far the most significant). At some point the thread really blew up thereafter . . .

    So, I feel sort of obligated to make something clear, here – if you read my story (not that you had to, hands full, I totally know and get it), you already know that Jennifer WAS, in fact, completely our saviour. She was the one who caught the tie that no one else had, she was the one who helped us get it clipped (and I want to make sure that it’s well- established that clipping a baby’s posterior tie does NOT require general anesthesia; I think that got cleared up but I would hate for anyone to walk away without reading thoroughly enough to catch that). There was absolutely, positively no doubt about the fact that I never would have been able to nurse without her. It took us 5 months to get her on the breast at all, but we finally did it.

    So I think if you sense that some of her clients are passionate, it is because of stories like mine, which would have been utterly hopeless without her. Utterly. No exaggeration. She is very simply one of the most brilliant IBCLCs out there, especially on tongue tie. I mentioned before that I am studying to become an IBCLC at Birthingway College and it is due primarily to her influence in my life and my daughter’s life.

    YES, she can be blunt. And I think that sometimes comes across poorly on the internet, and for that I’m sorry, because there was (in what I had seen, which was not everything) a wealth of information she had to share, which I had hoped would get across to the people who chanced upon your post when looking for tongue tie info. And I don’t know too many renowned IBCLCs who spend a significant amount of time sharing their knowledge and experience with people completely for free.

    All that’s to try and explain a little of the devotion, from women who have had similar experiences yet finally being saved by Jen’s genius. If you’re wondering if this was solicited, it completely wasn’t – I am just loyal to a fault AND yet hate seeing discord where there should be harmony. I think things took a wrong turn and I hope if you do decide to try and make the tie release happen 4-5 months down the road as you mentioned in the other thread (where I first stopped by today and saw some of the fallout), or to get someone in your area to take Dr. Kotlow’s training, as I mentioned over there just a bit ago, that you’ll share this info as well. I do hope for the best for you and your baby either way, I just can’t read a saga so like my own and not want to do everything I can to ease the extreme difficulty in the most direct way possible.

  • Anonymous says:

    ya know – its great to offer support, or even advice or differing views, but one should never, EVER presume to tell another mother. what it best for another’s family. only you know what’s best for you and your family. so anyone who want to judge you that isn’t living your exact same life of disability, finances, and children with their issues, should fuck off.

    Shelley

    • admin says:

      It’s a good point I think we all should remember for the times when we’re feeling passionate, too. I certainly learned something from this exchange, and will be thinking carefully about how I present myself to others to ensure I never, ever come off like that.

  • cassandre says:

    Wow, I’m aghast at the comments on your last post. The people from that facebook tongue tie group are so … evangelical, it’s more than a little creepy. Can’t they see they’re harming their own cause? An approach that heavy-handed (and yes, patronizing) would put me off from the start. It’s great that so many babies have apparently benefited from the laser treatment, but the fact that someone does not immediately jump on a plane to go to a distant city to have their baby lasered by a dentist (???) just because a group of strangers on the internet told them to DOES NOT MAKE THEM AN INSANE PERSON. On the contrary. I would never consider a procedure like that without making loads of inquiries and doing research about it on my own first.

    I’m glad that Z is feeding so much more easily! I have had some breastfeeding difficulties with my now 6-month-old, but they pale in comparison to what you’ve been going through.

    • cassandre says:

      I just realized that Jennifer Tow has deleted all the comments she made on your previous post. πŸ™ Terribly poor form.

      • admin says:

        IKR? Typical. I’m sure that, if pressed, she’ll claim it was to help others not be angry or some shit… But I’d be much more inclined to believe it was a benevolent act if she’d offered some sort of sincere apology of even vague acknowledgment of what everyone was telling her: she was rude, condescending, privileged and pushy.
        At least someone who apologizes sincerely, lets you know of their intentions and then deletes is being 1000x more honest.

    • admin says:

      It’s crazy, isn’t it? I totally didn’t expect that kind of reaction. Suggestions, information and support are always welcome, but the assumptions about my life, and the pushiness after I said I was unable to fly out was… uncomfortable.

      Anyway, thank you! I’m so happy with her progress. πŸ™‚

  • heavynleigh says:

    Oh, on the charts thing and helping Tempest with routine and remembering to do things, like taking care of her backpack, take a look at Accountable Kids. My oldest is Tempest’s age (I think. He’s 8) and is also Autistic and he’s done really well with it. We have everything on there in the order we do it each day, he flips his card over when tasks are completed and earns a ticket for all of his work each day. It’s not just chores, it’s all of his schoolwork, brushing his teeth, making his bed, cleaning up after himself, etc. Stuff he was resistant to doing before but now does happily because the board says that’s what comes next. Each week, we count up how many tickets they have and then they can trade them in for things, whether it’s a little treat, some Pokemon cards or Magic cards or computer/tv time, or whatever. We’ve found it to be a great program, so I thought I’d throw that out there. It works well for my two NT kids as well, ages 6 and 4.

  • Curiousity Killed the Cat…

    Thankfully, I’m not one. ;D I noticed many of the snarky commentators comments were deleted, in the other post. Did they go back and delete their own comments? Were all deleted comments from the same person?

    I think you’re a wonderful person. I always look forward to your posts, opinions, and humorous tales. I thank you for sharing a part of your life with the internet. πŸ™‚ *hugs*

  • heavynleigh says:

    I’m going to send you a message with my response. I don’t want the crazy trolls crashing my utopia. lol

  • ozoozol says:

    You may find this depressing…

    … but he’s right. We DO have stretch limo truck things out here. No foolin’

    Maybe this will help: Occupy Temecula! http://www.facebook.com/groups/255389481170634/ (yes, I am somewhere in that photo album, and no, I’m not saying who :])

    • admin says:

      Re: You may find this depressing…

      Fun fact: Temecula is where my weird conservative relatives live, which is where I stayed when I met Curtis for the first time. I had to drive quite a bit each day to see him, as he was in Mojave.

      • ozoozol says:

        Re: You may find this depressing…

        I vaguely remembered that Temecula had something to do with your “story of us” but I assumed that it was a bit more central (walking to a theater in Mojave is orders of magnitude more dangerous than walking to a theater down here) πŸ™‚ and Temecula is where I’ve seen the limo trucks, as we commute there.

        To Mojave from Temecula? that’s what, a two and a half, three hour drive from here, probably the same from Temecula? if I didn’t know better, I’d say you guys were in love or something

  • thehobbit says:

    Wow, wooooooooow. I too wish I had left a more positive response, or one at all now to your previous comment. I know you don’t know me, and I’m just a random reader, but seriously. The work you’re doing is amazing and the fact that you let anyone read about your life is so unusual in this current day and age of blogging. Hell, most of my FL is friends only, so I appreciate how open and candid you are. Let ’em drink the Hate-orade and you keep on keepin’ on. I’d give you a high five in real life if it were possible.

  • forestfleece says:

    I’ve worked for years with kids with autism with behavior problems…pretty severe cases and just wanted to offer up a little help with the lying and stealing stuff. As hard as it seems and counterintuitive for the rest of us, yelling at a kid with autism is not a deterrent. It’s stimulating and gives them your attention so in some ways it’s reinforcing the behavior. Tempest is pretty smart but if she’s scripting lies, you can’t reason with her and I would argue that even a typical child of her age shouldn’t be reasoned with. The best way to improve her behavior is get her on a rigid routine with frequent rewards for good behavior, and nothing for bad behavior. Often if a kid is acting out, it’s because the routines have relaxed or they need more structure in their day. Two weeks of a rigid routine and reinforcing positive behavior is often all it takes to fix problem behaviors but if they keep up, there are consequence therapy tactics such as losing tokens, sounding a loud whistle/buzzer and holding up a stop sign when she lies but nothing more (look up the little albert experiment), and otherwise creating negative associations to her behavior that have nothing to do with you. Remember that anything that comes from you should be/is reinforcing but a stimulus that comes from a chart, an assignment, a timer, a picture can be used to redirect behavior. When correcting her behavior, offer an alternative behavior. You may not be able to do this verbally. We often redirect a child to an easier task that they do pretty automatically…like stacking cups (we sit the cups in front of them and point), sorting colors, writing the alphabet in cursive (if they are at level) and so on. It’s weird but they don’t ask why. They do it and they get our praise and the whole tantrum of 5-10 minutes ago is dissolved and forgotten. I say it’s weird because it’s hard to explain HOW it works so well, but it’s the only therapy for kids with Autism that is backed by research, and in my own experience, it’s freaking miraculous. I know you have a lot on your plate but if you get the time to research behavior therapy or even if you can afford to have someone do it with Tempest long enough to learn it on your own, I think your whole family would really benefit as she comes of age.

    • admin says:

      Everyone knows yelling isn’t awesome, but I challenge you to find parents of kids (particularly special needs) that hasn’t lost their shit on one occasion. You just do your best to recover from it. This is often the issue you hear parents complaining about when talking to, “People who work with kids” rather than, “parents of autistic and children with SN”.

      Everything you’ve suggested we have in place. She’s been seeing family therapy, behavioral therapy through the youth mental health work for years now… though nothing specific for autism as we do not have access to those services. She also sees a school counselor, has an IEP and an aide. We do what we can.

  • jespere says:

    I’m not going back to read those comments. People need to learn that each and every situation is different, and if you haven’t stood in exactly their shoes, say something nice or shut it. There.

    Ever heard of “give me the 5”? for ASD kids? (omg, I typed out the Dutch abbreviation for it… a disorder is a “Stoornis”. Go and laugh.) It’s basically a system to fill in the gaps that a lot of ASD kids have. The gist of it is that you have to answer 5 questions when giving instructions; who, where, what, when, why. (You or Xan (who) can’t ever (when) steal xxx (what) out of the kitchen (where) because we won’t have enough food for school then (why).
    I’ll be the first to admit that it’s not a magic pill, but especially when my kid gets stuck on repeat it seems to be effective. Sometimes being very specific does the trick here.

    That said, you mentioned a site with more complicated locks – you have a link? I have a friend who could benefit from that.

  • twirlgrrl says:

    Holy crap on the comments to your last post. I’m sorry now that I didn’t leave a nice, supportive comment when I first read it, before all that other stuff got dumped on you. I’m always reading but very rarely comment. You handled them with more grace than I would have managed.

  • gardenmama says:

    It must be the weather, the time of year, the moon phase, or something. I wouldn’t think it would be a pre-halloween thing, but Scott’s teacher said he’s not the only one having issues this week. But yeah, after a good first month of second grade, he is back sliding big time and getting into almost daily trouble. Phone calls from teachers and principal multiple times a week. Thank god I had girlfriends take me out for girls-night-out and margaritas last Friday, and tonight I had a baby shower for one of my husband’s co-workers. I’ve learned that around mothers of neurotypical children I can’t even bring up the issues we are having with Scott. But I can laugh and joke and drink and relax and get some time away, which was desperately needed.

    And you can tell your kids that some parents give lickings with a belt πŸ™ My husband told Scott that he had to have a perfect day at school today. When he didn’t and got sent to the principal’s office, he also got 10 lashings with the belt after my husband got home. No, I wasn’t home. No, I don’t condone it. I’m pushing hard to get Scott back into a behavior therapy program, but it’s putting a strain on our marriage that I really don’t want to talk about right now.

    I hear you about needing someone to talk to who “gets it” when you talk about the things you’ve tried that don’t work with your child. So many moms have told me that the answer to Scott’s extra energy is to put him in sports or just get him outside and get him running around. They don’t understand and won’t understand that to a sensory-seeking kid with ADHD, that extra stimulation just revs their motor higher and higher, having the opposite of the desired effect. And I can just imagine the drama and the phone calls I would get about his behavior were he to join a sports team. I’m pushing our local children’s mental health agency to restart an ADHD parent support group that used to be active in our community several years ago. I’m getting good feedback about it, but the wheels turn very slowly. Maybe by the time it actually gets going I might feel like I have some answers for someone who is struggling like we are right now. And maybe it’s just a pipe dream that someone might come to a meeting an offer me a suggestion that we haven’t tried that actually helps, but I can hope. I’m so tired of his teachers asking me for advice on how to handle his behavior.

    And you can thank Curtis for the laugh. I totally needed that πŸ™‚

    • gardenmama says:

      I have to add, I did come up with a simple solution for the backpack et al situation. I typed up a checklist with the things he’s supposed to do when he walks in the door, laminated it, and hung it above his coat hook in our entry way with a dry erase marker. Every day when he gets off the bus he checks off the items as he does them: Hang up backpack, coat, glove, hat; Put away lunch, lunchbox, icepack; Papers in mailbox (I have a spot for school papers); Wash hands; Change into play clothes; Work on homework.

      So far it seems to be working and there is much less reminding. And when I do need to remind, it’s just me telling him to check the cart to see what he still needs to do, rather than repeating all the steps he seemed incapable of remembering.

      I was able to borrow a laminator from my dad, and a dry erase marker works on it fine. You could also use a report cover or some similar clear plastic surface like contact paper. We also have charts for morning routines and bedtime routines, but this was the first one with checkboxes where he can mark off tasks as completed and he really seems to like that.

      • admin says:

        That’s pretty much EXACTLY what our “social stories around the house” idea is about. We haven’t put it into effect yet, b ut it’s good to know it’s working for another autistic family!

        • chem_nerd says:

          Another thing that might be worth trying if the kids are doing chores to earn TV time is the latest incarnation of the My Little Pony franchise, My Little Pony: Friendship is Magic – I doubt it airs in Canada, but all of the episodes are freely available on YouTube. The earlier generations of the show were pretty much visual bubblegum – keeps your mouth busy, but has no nutritional value and rots your teeth – but FIM, in addition to developed characters and storylines, has many helpful contextual lessons for getting along with others (like how to get along with people who come from a completely different background, why talking about what’s bothering you is a good idea, and how to deal with jerks without becoming one), all neatly tucked away under the disguise of pretty colored ponies. The kids would probably like it, and the social lessons (helpfully recapped at the end of every episode) might help Tempest to put things in context. It also has the benefit of having been designed to be enjoyable for the whole family, rather than driving adults to the brink of madness like certain other children’s shows *CoughBarneytheDinosaurCough* I could name. I’ve recommended it to the parents of a couple of other Aspie kids I know – truth be told, I wish this incarnation had been what was airing when I was a kid; I could’ve used it!

    • admin says:

      That’s tough. πŸ™ I’m so sorry about the strain… it’s one thing to joke about it, but it’s another when it’s manifesting in ways that are putting such extra strife in your marriage and your parenting. I won’t presume to judge anyone, just to say that it’s awful it’s causing so much stress to everyone. πŸ™

      When I was a kid I got hit on an open hand with a ruler when I was bad at school. Not by my parents or anything, but by a few teachers. When I was institutionalized as a child my speech therapist used to threaten me with a yardstick. As did my first ballet teacher.
      My brother, apparently, got whacked in the head with books by his teachers when he was talking out of turn! Once him and his friend were sitting in the same chair, goofing off, and the teacher came up and hit him in the head so hard he collided with his friend and knocked him off the chair… and out!

      When he came home with a mild concussion our mom was so angry she put him in the car and booked it at 100kph back to school. He was in grade three, and still says this was one of his proudest childhood moments: sitting in the car in the parking lot, forbidden to leave, and suddenly hearing mom’s screeching howls of anger at the principal wafting over the entire school. πŸ™‚ That never happened again!

  • crunchynurse says:

    Interwebs stuff

    I can’t let this go without commenting on the issue of the flame wars.

    This medium of communication is extremely flawed. It is very easy to misconstrue what an individual is stating in this format. I strongly believe that there is a huge difference between saying “you seem to have some serious misinformation” with “you are uneducated,” and the type of personal attacks that have resulted from misinterpreting intent are extremely disheartening.

    There is one individual who was not trying to force her opinion down one mother’s throat, as others have interpreted it. Considering how widely the information in the blog was distributed, she wished to clear up any inaccurate information on the treatment of tongue ties. Her intent was seriously misconstrued and the way that she was responded to deeply saddens me.

    • admin says:

      Re: Interwebs stuff

      When someone sets a boundary about something, and says that whatever medical procedure they’re talking about is not for them and they’re not comfortable with it, it’s simply not nice to say, “I’m sorry you’re so misinformed”. There are a thousand things she could have said that were better than that, more sensitive than that, or she could have said, “Okay cool!” and walked away.
      No one was spouting misinformation about chiropractic care, the noter simply said she didn’t care for it and wasn’t comfortable with it. And that’s fair. Cultural and personal sensitivity is one of those things they teach you in school when you become an IBCLC (at least they do here) and with good reason… to avoid conversations like that where people push, and push, and push, and push after someone has said, “no thank you”.

      The way she was speaking is what people are upset about, and rightfully so. Her intent is beside the point: she could have done a lot better with her communication. It was poor, condescending and presumptuous from very early on. Whether or not she did it to help people is beside the point. Intent is not magical. I thanked her repeatedly for her information, and meant it, but she was still condescending rude and pushy until the very last bit when I finally snapped and told her I didn’t like her. At which point she finally left it alone.

      Also, people seem to think I’m (and others?) are talking about just one person… we’re not. There was more than one.

      Thanks for your input: I completely disagree and the more unapologetic this gets the more it’s kind of horrifying. I’m sure you feel the same way, so let’s walk away from it, shall we?

    • jenrose1 says:

      Re: Interwebs stuff

      I like chiropractic for some things, not for others, and I was taken aback by JT’s comment to the woman who said “It’s not for us.”

      There are legitimate reasons why people have concerns about chiropractic care. There are some things I will go to a chiropractor for and others I won’t let them touch me for, and I’ve had a range of chiropractors who went from completely woo woo to very practical, and I’ve only ever been to one I would trust to work on a brand new baby. Telling someone that dismissing chiropractic is “misinformed” without finding out why they’re dismissing it… is as annoying as the doctor who decided to lecture me about my weight and eating french fries when I went to him for a sprained wrist (and only ever had french fries about once a month.)

      • crunchynurse says:

        Re: Interwebs stuff

        Although I might have taken a different approach in his particular situation, I do not believe she deserves to be mocked and called harsh names.

      • _delphiki_ says:

        Re: Interwebs stuff

        I wasn’t being rude to her and I was so confused as to why she was trying to argue with me over my own children that I just ignored the rest of the conversation. I’m not willing to take my children to see a chiropractor. I have solid medical reasons, but I am not misinformed.

        • chem_nerd says:

          Re: Interwebs stuff

          Sorry if my arguing with her for you was problematic – what she was saying was just really rubbing me the wrong way. That said, if I require mocking and harsh names to make an argument, the argument is not worth making – a good argument can stand alone on its own merits. I keep my arguments to plain facts and logic.

        • admin says:

          Re: Interwebs stuff

          You don’t need to justify anything to anyone. The way she addressed you was completely out of line, presumptive, condescending and rude. Regardless of intention.
          I read out that thread to my husband last night, (FTR, we’re both really huge fans of chiropractic care) who immediately answered, “If she really thought that this girl might be uneducated… why not politely ask, ‘I’ve never actually heard of someone who was against it! Is it okay to ask why?’ and leave it at that. That way she has the option to explain it if she feels like it, or say she’s not comfortable talking about it there, or just ignore her for being a busybody. No judgment, no assumptions, and no boundary issues”.
          AMAZING HOW SMART HE IS, RIGHT?
          It kind of doesn’t count when someone finally comes in with a heavily modified and rather presumptive version of the above AFTER the fact.

          Ha… god. Again, I’m sorry you were spoken to that way. You have no reason to justify yourself to anyone. You didn’t say anything “misinformed”, and were quite clear. It’s not like you said, “Chiropractic care murdered my brother and fucked my sister”, you said it wasn’t for you. AND I SAY THIS AS SOMEONE WHO IS TOTALLY FOR CHIRO CARE AND THINKS IT COULD BENEFIT LOTS OF PEOPLE. Because alternative medicine *isn’t* for everyone. Homeopathy, herbal medicine, chiro, TCM… whatever. It’s not as clear cut as, “let’s cut out this tumor or you’ll die” (and, to be honest, even then it’s up to the individual patient to make an informed decision about their care and future).
          A good professional takes into account an individual’s comfort zones, personal beliefs, religious ideals, cultural boundaries, personal boundaries and more when talking to them and doesn’t push alternative care. When they push past someone’s boundary… it becomes about a personal agenda over a want to help someone, and that’s when it crosses the line from good practitioner to bad. I expect it from random internet people, but when it comes from people wearing their “professional hat” it totally crosses the line for me.

          After watching that shit last night I said to Curtis, “You know, when the school here added all those courses to the IBCLC workload about cultural sensitivity, psychology, communication, religious sensitivity and that? I thought it was nuts! Why on earth did you have to do all that work? But after seeing that unfold?… I want to print it out, laminate it, frame it and stick it on the wall above the courseload: THIS IS WHY. THIS GUY? DON’T BE THAT GUY. LEARN MOAR.”

  • Anonymous says:

    “…and how to remember to take their fucking lunch boxes out of their damn backpacks when they come home from school.”

    When you get this worked out, may I have a copy, please? Not for my child (who is only two), but for my husband. I once opened his lunchbox to make him lunch before work because he was running late…and found a container of yogurt that had to have been sitting there for 3 days (i.e., since the last time he had worked). Blech.

    Also, I keep reading the new comments on the last post because it’s like a trainwreck, and that TT “expert” who keeps telling you and all your friends you’re morons…is the scariest looking woman I’ve ever seen. Just saying. Might want to reconsider the picture that posts when you leave a comment, lady!

    ~Colleen

    • That last paragraph in your comment was pretty cruel and unnecessary, Colleen. πŸ™ What does it matter what the woman looks like? It makes me so sad and frustrated when people get upset with/dislike/have a negative opinion about a woman then feel the need to throw in a nasty comment about her looks, even when it’s 100% not relevant to the issue. You don’t like her behavior, so you’re going to declare her ugly? When is it ever okay to publicly call someone ugly? It’s happened to me before, and it was painful and humiliating. Comments like these are immature, hurtful, and, in my opinion, misogynist.

      Sorry for the rant, Heather. I’m totally inspired by your success in keeping up a breastfeeding relationship with your baby through all of this. Even if she can’t exclusively feed from the breast at this point, she’s still growing and thriving exclusively from your breastmilk, and your dedication to providing her with what you feel is the very best for her is definitely to be applauded!

      • admin says:

        Thank you! And for the record, I agree. Comments about someone’s looks are unnecessary regardless.

      • Anonymous says:

        I’m sorry, that was really uncalled for. I posted when I was angry and that always shuts down my “if you can’t say anything nice” filter. In 27 years I still haven’t learned to stop and wait before saying anything when I’m irritated. So Jennifer, if you’re still reading the comments, that was me being spiteful and it’s unbecoming. I’m sorry.

        I will give her this, though–she knows her stuff. She’s obviously spent years studying this stuff, and given what you’ve said about doctors and their attitudes regarding posterior tongue ties, that’s impressive. It’s like she jumped on the boat before anybody else even realized it was at the dock. So, knowledge, impressive. Drive for results, impressive. It’s her attitude that’s somewhat repulsive (and “repulsive” isn’t exactly the word I’m looking for, because of the negative connotations. Off-putting? Repellant? Irritating? Is that better? Sorry, I was sedated for a medical test this morning and my brain is still fuzzy). Anyhow, I’m sure she does wonders for her patients, she just came across as mean on the internet, and that’s what prompted my mean comment. An eye for an eye makes the whole world blind, and all of that. So…my bad πŸ™

  • The first thing I thought of as I was watching that video is “No wonder her gag reflex is so bad!” I wanted to gag just looking at the way she deals with swallowing liquid! I’m so glad that OT is working and that she’s progressing and starting to get better. Even if you lived next door to the guy who could do the procedure doesn’t mean he’s going to do it for her. Like you keep saying … she’s getting better. The non invasive measures ARE working. It’s like cutting off your foot off at the ankle cause you broke your toe. Wait and see what happens, let the therapies do their job, and then reevaluate. That’s WHY we have OT and PT!

  • crunchynurse says:

    Problem behaviors in children

    Have you ever watched the 1,2,3 Magic parenting DVD’s? My husband and I watched them recently and we implemented some of what was recommended. We are finding it helpful for stopping some of the problem behaviors when they are in progress. I have a 9 year old son with Aspergers and a 7 year old son with a giant attitude (and some non-ASD issues without a clear diagnosis). 1,2,3 Magic is supposed to work well even with special needs kids, as long as they have a developmental age over 2. The 2nd of the set has lots of ideas on how to encourage good behavior, such as with charts as you are doing. It might give you ideas to expand on what you have already done. I didn’t buy the set but was able to get them on interlibrary loan, so you may be able to view them without cost. There is also a book, but I thought the DVD’s were awesome because they showed role play of various scenarios.

    • admin says:

      Re: Problem behaviors in children

      I haven’t watched that, no – but I’ll look for it in the library!

      • crunchynurse says:

        Re: Problem behaviors in children

        Some of what he suggests seems to be such a simple thing, like it couldn’t possibly work. But it’s pretty amazing when I can stop a problem behavior without having to send one or both of them to time out. Or waste a lot of time and breath trying to reason with them. The guy that speaks on the DVD’s is very humorous too, so they were fun to watch.

  • Wow, I read your post summing up Zephyra’s feeding fairly early on, before all of those comments, and I’ve just gone through and read them. Christ on a cracker. The word ‘piranha’ comes to mind in some cases. Illiterate piranha, given that they obviously didn’t read your entry properly before composing their ‘helpful’ responses.

    You’re doing wonderfully, both of you. Given what you’ve said about babies with Zephyra’s issues ended up on NG tubes, the fact that she’s going on five months old without having ever had that happen (even theoretically), AND she’s so gorgeously chunky in spite of it all is a testament to your drive to do the best you can for her, and the fact that she’s improved and is still improving is brilliant. I hope that she reads all of this one day. She’s a very lucky little girl that she has a mother who has the drive and the determination to work as hard as you have to MAKE it work instead of just giving up, and to hell with the peanut gallery Boobzillas’ opinions on the matter. No doubt they are still reading away, so I direct this next comment to them: it’s not ‘help’ if you’re ramming it down someone’s throat. Not everyone has the same circumstances, and you are not there, so no, you don’t understand, even if you are firmly convinced that you do. Neither do I, really, but at least I understand that sometimes you make calls that not everyone agrees with – but it doesn’t make them ‘wrong’ calls. Ask yourself how you would feel if you were trying to say something that someone else was continually misinterpreting and responding to as though that misinterpretation were the actual truth of the matter. It might be ‘your opinion’, but that doesn’t make it the only course of action.

    Heather, I know this all sounds very cliche and prosaic, but sometimes I have to come out of the woodwork and comment, and I’m sorry if I start another argument with the aforementioned peanut gallery on your LJ.

  • Wow. I just read some of the comments on your last entry… Who the hell do some people think they are? Wow.

    It doesn’t mean much but I wanted to tell you that you are doing a fantastic job. A lot of other people would have given up on breastfeeding and trying to make it work. You are doing wonders for your daughter. You know this but it’s nice to be reminded when others pretend they understand and will try to bring you down.

    I don’t think it’s right that anyone try to judge your financial situation, or any other part of your life, really. It’s your journal and you are sharing your experiences with us- to vent, for encouragement, for support, for commiseration. Not to be judged or torn down.

    I hope you didn’t take to heart what others were suggesting, in terms of you not making enough sacrifices. You are a great mother and it’s quite obvious that you love your children and do the absolute best for them.

    I’m so glad that Zephyra is improving! πŸ˜€ I hope you have a better week with Xan and Tempest. :/ You’re doing a great job, mama. ::hugs::

  • comitto says:

    Damn, I read the last post before all the drama somehow. That spiraled fast.

    Have you heard of a functional behavior analysis or tried to do one for Tempest?

    Basically you can look at the target behavior – stealing – and take notes on what the antecedent was (what happened right before the behavior), what the specific behavior was and how long it lasted, and what she accomplished from engaging in it. Also, you can write any consequences she received and if they helped. Hopefully after recording the instances like that you can sort out some sort of pattern and figure out what the stealing is doing for her, be it self-regulation, attention, having candy that is tasty, or whatever. Sometimes it’s easier to figure out patterns when they are laid out on paper, in a consistent way, than just through conversation.

    Link about it – http://www.polyxo.com/fba/

    If you want more in debt information feel free to ask. If not, that’s okay too, I don’t push practices on families *cough* πŸ™‚

    • admin says:

      We have, and we do a modified take on that.

      It often doesn’t quite work the same way with kids with autism, as their motivations and ideas and even the way they think from one thing to another is… not the same.

      • comitto says:

        Yeah. I have used that method on kids on the spectrum (I’m a school psychologist). However, even if they have a clear reason for doing something, it isn’t always clear to adults and they aren’t always able/willing to logically explain it so you can rectify it. I’m sure you guys are already trying to minimize positive reinforcers for the behavior and everything else. Hopefully soon something will click somewhere so that it reduces. *hugs*

        • admin says:

          Yeah, absolutely. Being totally hyperaware of how we speak, act and enforce boundaries is… draining. But it’s necessary when dealing with problem behavior with an autistic child. I mean, you can’t even *smile to yourself* in a corner of the room for a split second. πŸ˜›

          Part of the problem is her complete inability to understand her own motivations, or be willing (or able) to explain to us what they are. No matter how we go about it, the answer is always the same: I don’t know.

          • chem_nerd says:

            For what it’s worth (which may be nothing) – a little perspective from an adult Aspie

            And that, at least, is probably the truth, or at least as close to it as she is capable of putting into words. I’m twenty years older than she is, and am only within the last few years beginning to be capable of properly putting words to abstract emotional concepts, and even now, it’s hit or miss, and often requires my (also Asperger’s, but with different strengths and weaknesses) husband to translate.

            As for the stressor… it might well simply be the stress of a new baby. New siblings always disrupt the routine, it’s the nature of these things, and I’m sure a high maintenance (for lack of a better term immediately after waking up) baby like Miss Zephyra only more so. If that is the primary issue it will likely settle down as Zephyra gets older and improves the feeding issues – routine will return. And as much as Tempest loves her baby sister, I’m sure she’s glad for her, stress and all. It might also be worth checking down at the school (if you haven’t already) to see if she’s been hitting a lot of stress there – other kids giving her more crap than usual, or something. Does she tend to cycle up or down at specific times of year? Seasonal affective disorder tends to throw me for a loop in the fall and winter, and can make me somewhat more impossible than usual.

            My apologies if I’m way off base, am even more tactless than usual first thing in the morning, or just haven’t been remotely helpful. Either way, I hope things get easier for all of you soon.

            • _delphiki_ says:

              From another aspie: icon love!

            • admin says:

              Re: For what it’s worth (which may be nothing) – a little perspective from an adult Aspie

              She’s been fine with baby, and was fine when Xan came along to. To be honest she barely seems to notice when new babies arrive. Some autistic kids go totally bonkers with a new baby, and others don’t seem to even be present for it at all… she’s always been the latter.

              I’m in contact with the school counsellor and un/fortunately I can’t pinpoint anything at school, either. πŸ™

              I appreciate your insight. FTR, I’m diagnosed as well, but underwent extremely intensive therapy and am a little more removed from that point of my life.
              Also, I appreciate your commentary and support in regards to the rudeness.

              • chem_nerd says:

                Re: For what it’s worth (which may be nothing) – a little perspective from an adult Aspie

                It’s weird – when my first baby sister came along, I was close to Tempest’s age, nearly seven. Apparently, I became somewhat more difficult than usual (though with different behaviors, I tend to be withdrawn and incredibly asocial – it’s extremely difficult to get me to tell anyone what’s bothering me), but none of it was directed towards Meg. I love baby sister, baby sister is awesome – it’s all this other stuff that is giving me trouble. Then, when I was nearly thirteen, Emma came along. Six year old (neurotypical) Meg got her nose out of joint, and occasionally groused at the baby, much as she adored her the rest of the time. I, on the other hand, absolutely adored the baby, tried to help Mom and Dad out around the house as much as I could – but again, I was more difficult than usual. Directed occasionally towards Meg (we’re best friends now that we’re both adults, but we did not get along well as kids – I think it would have been easier if she had been the older one; she has a far more dominant personality, so leaving me to babysit didn’t always work well), but never towards Emma. Weird, huh? Wouldn’t life be easier if we would all respond to given situations the same way;-P

  • Anonymous says:

    You’ve certainly persevered where others might not, and that is pretty amazing. You have a lot to be proud of, and you should be!

    But here’s the thing… The fact that your little one has improved tongue mobility does not mean that further intervention is unnecessary. BELIEVE ME, i totally understand about not being able to pursue a TT lasering right now– I’m not judging your choices or situation. I just want to make sure that those who read your blog understand how very beneficial the treatment can be.

    My oldest has a posterior tongue tie, and we weren’t able to have it clipped when she was small. Hell, we couldn’t even afford to call the IBCLC to have her evaluated. She ended up being fed pumped milk in a bottle, and we didn’t see any other issues, so we assumed it did not matter. But now she’s 5, and has poorly placed teeth, multiple food allergies and gut health issues, inner ear problems, etc etc. She can fully extend and raise her tongue and has no obvious issues, but it is still causing a variety of problems for her.

    So, for the sake of spreading the best information possible, can we all at least agree that having the TT lasered would solve many problems before they begin? It might not work for your life right now, but someone else could really benefit from knowing how helpful the treatment can be.

    • admin says:

      No one has disagreed with that. Not at all. Even a little bit. the idea that someone disagreed, or fought that, or found it “unnecessary” is pure contextomy.

      What people are disagreeing with is the insinuation that not being able to afford to drop shit and run to Albany, NY is “neglectful” or “screwed up priorities”… particularly when equal progress is being made in this unique case through low intervention, local, free services.

      • Anonymous says:

        I really don’t believe that is what anyone was saying, exactly. Your comments to and about Jennifer Tow are beyond out of line. I’m truly shocked that you would publicly speak that way to anyone, especially someone who has put a fair amount of time into getting the best information possible to you. In a pretty respectful way, actually.

        But besides that, I think the point is that your daughter’s progress is not “equal” to the progress she would make if she were clipped. Wonderful and empowering, yes,but not equal. If the measures you described were enough, then my own daughter would also be equally as well-off as she would be with surgery… which is not the case.

        I’m truly thrilled for you that you’ve accomplished what you have, and I hope you continue to make progress. I just want others to know how utterly life-altering the procedure can be. And that, so long as the tie exists, problems will remain.

      • Anonymous says:

        1. *I* am the ~poor policing~ anonymous person from the last post. For the record, I was making a point about being dismissive and acting as if everyone should know your situation before telling you anything, even their own experiences, so I acted as if I knew your situation. I thought you might figure that out from the content of the rest of my comment.

        2. I am not the anon that said you were begging. I am ALSO NOT A MEMBER OF THAT BREASTFEEDING GROUP. You keep putting quotes around things like “screwed up priorities” when I said jacked up, and then attributing them to other people, or a group you think I’m a part of. And, nobody used the word neglectful anywhere. I also specifically pointed out that you SHOULDN’T drop anything to go anywhere. You should know that twisting people’s words like that doesn’t really work on the internet.

        3. You need to get off your goddamn high horse about ignorance and privilege. SJ is not a fucking pick n mix so until you address your permissive attitude towards, participation in and then ignorance of misogyny in your journal, you need to sit the fuck down and stop calling people out for privilege you perceive because you don’t like what they’re telling you. Oh oops sorry I guess I’m just being mean like all those other catty cunt bitches. Also making a Native American caricature into a pumpkin is still racist jsyk.

    • bluealoe says:

      Directly from the above entry: For anyone who has concerns about their babies and PTT, there are a ton of resources on the internet for information about it. Dr. Jack Newman has some, as does Dr. Kotlow, and you can find PDFs with slides showing functionality, symptoms as well as pre/post treatment and how it changes a baby’s ability to eat phenomenally.
      We’ve been fortunate that a less invasive route has been making huge improvement, but others are not so lucky and/or the tie is more severe, so please do take the time to read more about it if your baby is being affected.

Leave a Reply