Saturday, January 31, 2009

8.15 pm - Potatey in bed and sound asleep (despite being 'under the weather')_
9.15 pm - Salamander in bed and about to doze off.

Difference with the total insanity of last nite? The 'usual' bedtime routine was followed... to the letter.
Sure, I do the things I do because I'm a control freak... [NOT.. I do these things because they WORK]

Off to make Chili for our own little Superbowl party.. If it turns out good, I'll post the recipe.

D#mn.. Potatey may be coming down with the flu next. He's running a 100 F temp, complaining of sore throat, his cough has gotten worse...

Better get mentally prepared for another episode of "The Flu Chronicles".

Please send some positive vibes into the universe that this is just a quickie, fast moving, viral thing (I've already bumped up his antiviral & immune system supports).

Memories (some good, some bad)

Apparently it's been quite cold in 'ye ole country'. My mom send me this beautiful picture of a pond in a park about 10 minutes from the house I grew up in (where my parents still live).


Thanks mom, for the beautiful pic, and the 'trip down Memory Lane' [my butt and the ice on that pond have had more close encounters than I really care to remember. Ouch. But I was actually a pretty decent ice skater. It's the 'coming to a stop' part that I had difficulties with.. LOL].

It's been a long time that it's been cold enough out there for enough ice to form to skate, and I've been told that certain family members were a bit overconfident getting back on their skates.. with the resulting, predictable, results [you know who you are.. GRIN.. Hals und Beinbruch, eh? Minus the Halsbruch..]

Yesterday's 'during the day' respite was good. I dropped a sh1tload of money at the WFM (less good), and then had lunch with two girlfriends (thanks EG and KG; I had a lovely time.. and it's so nice to be able to drop the good ole' 'F' bomb in conversation without anybody battling an icelash & hurling da bomb right back).

And it's a good thing that I took that break, as all hell broke loose from about 3.25 pm on (yeah.. funny how that time coincided with the arrival of the school bus in my street, eh?).

None of the 'hell' was triggered by the little boys... you can guess where I'm going with this. It just blows me away that after 5+ years of seeing me interact with and parent the boys (well, maybe that's the problem.. I don't think that what I do is 'seen' at all), certain 'basics' still don't register (here's the "unhinged" version. WARNING - not for the faint of heart):
  • Don't make promises you don't intent to keep (and then come up with some phony baloney excuse as to why you couldn't).
  • You cannot expect a not even 11 year old boy with an autism spectrum disorder and bipolar tendencies, and on the edge of puberty to have 'complete control over his emotions' all the time. On bumpy days, yeah, the claws come out. And sometimes 'choice words' get spoken. But things weren't escalating (Salamander was simply expressing his frustration in an appropriate manner; and I'll take verbal over physical any day), at least NOT until somebody started yelling at Salamander to 'knock it off'. That's when things got ugly in a heartbeat (especially as Salamander hadn't processed the previous 'disappointment' situation properly yet). And as I was in the throws of a pounding migraine.. well, my reaction speed wasn't what the situation required.
  • Routines and the need for consistency are SACRED. PERIOD. There are times that that absolutely sucks, but it's part of the package. Doesn't mean that spontaneous things can't happen, but you need to gauge the situation and then go from there. When things are already shaky, don't F#CK with the routine. Especially NOT the bedtime routine. Took me until 10 pm last nite (with my brain oozing out of my ears due to the migraine) to get the monkeys calm enough to be able to go to sleep.

UGH...

Friday, January 30, 2009

Going "Unplugged"

for today..

Taking a break from blogging, blog reading, email, Internet access and all that jazz.. I need a breather, I need to be 'out there , 'in the physical world for a little while.

I am going to make a shopping trip to my favorite Whole Foods Market (45 minute drive away). I am running out of all kinds of stuff, and I need inspiration for new meals and snacks (yup, it'll be a $$$ trip). I am going to take my time today (typically I try to get in and out of that store in under 45 minutes, as with the drive back and forth, that still makes for a 2 1/4 hour thing), the boyos are going to get picked up from the school bus by their dad today (well.. that's the plan anyway..). I am bringing my iPod and am going completely 'antisocial' while I'm food shopping (I don't typically do this.. I'm a people person and get a kick out of interacting with people in any place and setting..)

And when I'm all shopped out, I'm going to meet a friend for lunch.

Have a great Friday y'all. I'll be back later...

[and thanks for all the comments on my 'I'm loosing it' post.. much, MUCH appreciated..]

Thursday, January 29, 2009

Did I Do The Right Thing?

QUICK UPDATE: Salamander is doing OK in school (teacher just emailed me). He is quietly settling in, his class mates are all super excited that he's back.

[totally unrelated - did any of you see the repeat of "Law & Order -SVU" last nite, the episode where Det. Stabler goes to visit his mother to ask her to help him help his daughter? Both Stabler's mom and his daughter suffer from bipolar disorder. When grandma and granddaughter started talking about how they feel during their ups and downs, how they experience the world, how they experience other peoples' emotions and energies...Let's just say that this episode hit very close to home]


Well, Salamander went back to school today. And I don't feel good about that decision AT ALL. He didn't look good this morning, he clearly didn't feel good. I do think that nervousness and anxiety are big components to this - he was quite agitated and distressed last night. He actually threw up just before leaving the house - I don't think that was illness related, I think this was 'pure nerves'. It's not that he doesn't want to go to school, he does. It's just that he's been out for quite a while, so it'll be a big transition getting back into the swing of things..

Time will tell if I made the right decision.. He has to transition back into the usual routine at some point..

And Potatey is starting to drive me batty..
So yesterday, a day that school was cancelled, he bounded out of bed at 6.15 am, rearing to go. Never ever once mentioned that he was 'so tired, mommy.' Refused to go back to sleep, would NOT let me sleep a bit longer.
This morning, on a school day? 6.40 am - "I can't get up mommy, I am soooo tired."
Yeah, right (he does this exact same thing in the weekends). And with him too I don't think it's that he doesn't want to school. He LOVES school, he loves being with his class mates. and friends.

But fact is that both my boys rather be home. And while that, in a weird way, is flattering, I need to put my foot down and get everybody back in the regular school routine. That is, as long as the weather cooperates and we have no illnesses...

This was definitely the morning of 'd@mn if you do, d@mn if you don't'..

Well, off to tackle the skating ring that my driveway turned into. The rain that fell yesterday afternoon and eve froze up over nite. BLACK ICE everywhere...

Wednesday, January 28, 2009

"Matter" Over Mind....

This day has been a tough one (for me, the boys have been doing great).

This has been a day of wondering if I do enough, if what I do matters, if I do what I do right or wrong.

This has been a day of wearing too many hats, juggling too many balls, having too many responsibilities, worrying too much about things that I cannot control, worrying too much about 'will [..] ever change?', thinking too much about 'will I ever find [..] or do [..]?'

This has been a day of operating too close to tears, too close to keeling over in exhaustion.

I don't know where to go for the answers, I don't know what to do or change to not feel this way. I don't know what to DO, period.

But maybe, just maybe, I need to stop searching, DO-ing, worrying, wondering.
And let just being with what matters silence that ever churning mind....

[of course getting a break from it all for a couple of days would go a long way too]


[I still can't help but think that I am failing my two beautiful boys somehow..]

I Don't Do..

accepting help well... I don't know HOW to accept help, I don't know WHAT to say or do when I get help..

I went outside around 12.30 pm, to shovel away approx 3 inches of snow just as the freezing rain started. My neighbor T was outside too. I cleaned up my back deck, my back steps, dug myself a path to my garage, then walked down my driveway to the front of my house.

I started shoveling the side walk in front of my house. As I was about halfway done, I heard a snowblower behind me. Nothing unusual - as 75% of the male population in my street owns one, and they all come out in force when it's snowing. The noise got louder, the noise got closer.

I turned around, and there was my neighbor T, working on his part of the sidewalk. But when his part was done, he kept going over onto my part. And then when he got to the entrance of my driveway, he looked up, pointed at my driveway, give me a thumbs-up sign and turned his snowblower into my driveway.

He cleaned off my entire driveway. Just like that. I never asked him for help, he never asked me if I needed help. He just did it.

We crossed paths as I was walking back to my back stairs and he was walking out of my driveway. I said "Thank you so much." He said: "You're very welcome. Now go back inside and have fun with your boys."

Just like that.

Now how to express to him how much I appreciated his help, and that by doing what he did he made this tired mom's day a little bit easier? "Thank you so much" just seems so inadequate.

But maybe I don't need to express this. Maybe nothing else needs to be said. Maybe he already got it...

The Flu Chronicles - Day Eleven (uhm.. no.. I mean SNOW DAY)

Well, so much for Salamander going back to school today. School called a Snow Day at 6 am this morning. Of course I had already been up since 5.25 am to make breakfast & lunches etc, but ah well....


I stopped what I was doing, snuck into the boys' rooms to turn their alarm clocks off, and went back to bed.

For exactly 15 minutes, as then Potatey decided to wake up. Grrr.. I've had trouble for almost 2 weeks now getting the sprout out of bed at 6.40 am as he is "so tired mommy. I need more sleep.", and then on a day that he can actually sleep in , he's up at the crack of dawn (he does this same exact thing in the weekends). Twisted... very very twisted...


Salamander slept a hole in the day.. didn't wake up until 10 am. I made both boys a nice big breakfast and then they went off to play together (I overheard them say to each other "Let's play President Obama in the Oval Office." Got no idea what that is all about, but it did make me chuckle..). Salamander still looks tired, I'll have to make sure he rests today.


Snow wise things are messy.. but nothing we can't handle. I have a few work related things to get through, and then we'll bundle up and attack the accumulation. It's supposed to change over to sleet and rain around mid afternoon, which will make for an incredible soggy mess, and then it's supposed to get cold overnite. So we're gonna have to get rid of as much as this stuff as we can.


Catch ya all later..

[oh did you all catch the brouhaha around mercury contamination in corn syrup? Second time in a month that I am glad the kids have certain food intolerances; first salmonella in peanuts and now mercury in corn syrup. I got rid of all things corn syrup when Potatey was about 3.5 years old. The stuff is POISON (for more than one reason obviously). If you have ever read about how it's actually MADE, you will never want to feed it to your kids again.]

Tuesday, January 27, 2009

The Flu Chronicles - Day Ten

Well, I can officially declare VICTORY over the flu bug. Salamander IS still coughing, we're working on that.

We worked hard on school work again.. I realize that I can't get him completely caught up BEFORE he returns to school, but we can do the best we can in getting the work that was sent home done.

His color is getting much, much better; facial bloating is still a come and go kinda thing (but it was that way BEFORE he came down with the flu). I got almost all of his usual supplements into him, so that's progress too.

His sinus infection is starting to respond to the combo of nasal flushes with Xlear (nasal wash with Xylitol) and Pleo Rec drops (a homeopathic his DAN! doc recommended) in his nose. He is also taking 1/2 tablet of Mucinex (another DAN! doc recommendation) to help thin out the nasal and bronchial mucus.

Salamander does still get easily fatigued; not much I can do about that. Except for making sure he gets all his supplements, good food, plenty of liquids, and sufficient rest.

Bottom line - we survived the flu. Salamander will be going back to school tomorrow (and he's excited about going back.. he missed his friends..)

Would I do anything different next flu season? Yes, I would. I should have doubled his antiviral and antibacterial supplements when Salamander first told me that classmates were coming down with the flu.

Holy Sh#t!!!!!!

My "goosebumps, chills ALL over, I cannot type through my tears" moment of the day...

Somebody by the name of "Tommie Lee" just made $1,550 in loans on Lend4Health!!!

Tommie Lee - whoever you are and where ever you are, you ROCK!!!! You just played a HUGE role in changing the lives of two little guys (Dazmen & Joseph T). You are a true HERO!!!! My faith in humankind (which had taken a few serious hits over the past weeks) has been restored...

Another kind soul immediately stepped in and funded the remainder of Dazmen's loan. If my brain is still working properly, I believe that Joseph T is now within $150 of the loan amount requested (to start his HBOT treatment).

Each and all of you who have pitched in on loans in the past and are pitching in now.. will you join me in getting Joseph T's loan funded??

TIA

Monday, January 26, 2009

The Flu Chronicles - Day Nine

Salamander is definitely over the flu bug itself. But of course there's some residual stuff. He's still coughing a lot, and his nose is now draining grey/green goop.

We worked on school work from home; I may have worked him a bit too hard.. LOL.. He told me we got more work done in about 4 hours at home (with breaks) then he typically does in 3 days in school... Not sure what to make of that.

The nurse from Salamander's DAN! office called me around 12.30 pm, asking me if I still wanted the Zithromax script, and if so, that I'd have to take Salamander in. We talked about what had been happening over the past week, his current symptoms etc, and we made the decision to come in.

So as soon as I had grabbed Potatey off the school bus and the boys had had a snack, off we went for our 4.30 pm appointment (yeah, at the end of the day.. and of course we got stuck in rush hour coming back.. so we ended up being home really late.. which made dinner really late.. ).

I'm glad we went though. Salamander's DAN! hadn't seen him in a while, and she was quite pleased to see how much he had changed/improved. And she got a tremendous kick out of seeing Potatey too (who is a patient of her's as well) and to witness the interaction between the two.

She agreed with me that Salamander is over the worst flu wise. His lungs sounded clear, no signs of pneumonia. He does have a sinus infection (that we will treat with natural and homeopathic agents for the next few days; if things haven't cleared up by Thursday, then we'll do a course of Zithromax), and fluid in his ears (tied to sinus congestion). Overall, keep doing what we're doing and we'll get to where we need to be.

We talked a little bit about Salamander's remaining three BIGGIES in the health department - gut issues, B12, mitochondria. We also talked a little about Dr. Boyd Haley's OSR and my hesitation in wanting to try it with the boys (OSR is sulphur compound - boys have transulphuration pathway issues), but as it comes in a powder and as especially Salamander still has far to go in lead and aluminum detox, I'll keep it in the back of my mind. I DID go for a script for injectable hydroxyB12 - God knows that Salamander is taking every other conceivable form and route of B12, but that we continue to struggle with keeping B12 levels steady, and the injectable form is really our only option left. I will wait a few more days with filling the script, as I need to talk Salamander through the how, what, when and why.

I certainly wasn't as prepared as I like to be when taking the boys to the DAN! doc (as I'd like to get my money's worth out of the visit.. LOL), but overall I got out of it what I needed to get out of it.

I will make a follow-up appointment with her for both boys for much later in the year. I do need to go pull all of the boys' test files and make sure HER records for the boys are up to date (I'm so used to going it on my own that I sometimes forget to keep all members of the boys medical team aware and up to date..)

To Parents of Kids With Significantly Impaired Communication Skills..

I wrote this a few days ago.. needed some time to decide as to whether I was going to post it or not...

[to borrow a phrase from the lovely Ang Warner ]


I SALUTE YOU

I thought I was tough, that I could handle anything. And life so far has certainly thrown me more than its fair share of curve balls, which I have all been able to catch and lob back…

But I realize now that I have only scratched the surface of ‘tough’.

My beautiful oldest boy, who has an ASD diagnosis + the usual alphabet soup of co-morbid diagnoses, came down with the flu about 9 days ago. And for about 4 days, he lost his ability to communicate.

One morning he woke up with a severe case of laryngitis – all he could utter was this little squeak that you would expect to come out of the love child of a cat and an owl.
Then he lost his ability to read due to pounding migraines, and his visual-sensory systems going on tilt.
And then he lost his ability to write due to extremely low muscle tone (he couldn’t even hold a pencil, let alone make it move across a piece of paper) and other neurological issues that affected his ability to remember and then form letters and words. He could not even draw a stick figure.

The flu rendered him mute, not able to express himself in writing, not able to read.

For four days I watched my son struggle to communicate to me what he wanted and needed. Neither of us knows a meaningful amount of sign language (plus with the muscle tone and visual motor issues, I doubt he would have been able to use his fingers sufficiently to form the signs), I do not own a PECS system. Watching him like that, mute with hardly any other avenue available to him to communicate, it tore me apart - it was brutal.

I never before experienced what it feels like to see your child, with his mouth open wide, soundless, with tears streaming down his face, and not knowing whether he was laughing or crying, and not knowing what to do to ‘make it better’. I hope to never experience that feeling again.

I have a bruise on my chest from where my beautiful boy dug his head into me to try to relieve the headaches, finger patterns on my arms from where he grabbed on to me in his attempts to make me understand, to ‘hear him’. I have pillows on my couch which now bear teeth marks, testimony to his frustration. Shredded paper from a notebook everywhere over the house. Pencils snapped in two, and thrown after the shredded paper.

What kept me from going places in my mind that I do not ever want to go is that I knew that, for my beautiful boy, this was a temporary situation. And that my son has the cognitive awareness to understand that this would not last forever. And that, by now, he has enough control over his temper and his moods to not take his frustrations out on other people. And that he at least was able to sleep at night..

There are so many of you out there though for whom what I described is NOT a temporary thing. It has been YOUR reality, YOUR CHILD’S reality, for many many years. And it very well may be your reality for many more years to come.

All I can say is YOU HAVE MY ENDLESS ADMIRATION. For continuing to look for ways that could help, for not ever giving up, for staying in this fight, for working through situations that I only had to experience for a couple of days,… again, and again, and again. [And for showing restraint in not ‘braining’ the next person that comes along and leaves a well formulated and somewhat sanctimonious comment telling you that ‘Really, autism is not such a bad thing. Why the negative take on things? Why this urge to want to cure your child? Just love ‘em and all will be well’.]

To parents of kids with significantly impaired communication skills, I am in AWE of you. Those 4 days have been a reality check. I will never ever take my son’s ability to communicate with me for granted. And you have my unwavering support in pursuing any means you deem necessary in helping your child improve his/her ability to communicate, and as an extension of that, in finding a cure for what ails your child.

This past Friday morning, my son regained his voice. And I broke down in tears when I heard him say: “I love you, momma. I feel much better today.”

Sunday, January 25, 2009

Quick note to Silk (you, sneaky you) - I just realized that you've left comments to quite a few blog posts!! Sorry, not ignoring you. Love your comments. Keep leaving them!

The Flu Chronicles - Day Eight

Definitely a relapse day today.. Salamander has been doing so-so...
He didn't look good when he got downstairs this morning - facial bloating was back, grey/yellow skin, zonked out look in his eyes.. and cough, cough, cough...[so yes, pneumonia watch is continuing..]

I think he overdid things a bit yesterday as he was definitely feeling better then. It is so hard to explain to a 10-year who wants to move, move, move, that he really needs to rest, rest, rest so his body can use its energy to get stronger...

I made him go back upstairs to his room for a while after breakfast. His room is on the sunny side of his house and his bed is right next to a set of huge windows. So he laid down for a while, on his bed, in a nice and warm sunny spot (I could hear his Vit D receptors go "Halleluja".. LOL). He ended up snoozing for a while, like a big lazy cat. And when he came downstairs after about 45 minutes, he looked a TON better. Facial swelling down, pink skin, 'roses' on his cheeks, bright eyes..

He ended up playing with Potatey for the remainder of the morning, but then had another dip around 1.30 pm. Lunch helped a bit, and then he went outside in the nice cold crisp air for a while. Came inside ready to keel over. He's stretched out on the couch now, dozing...

It's gonna be a while. The flu is a major illness (but not as scary and deadly and devastating as certain organizations would like for us to believe), and his immune system and overall energy stores have taken a big hit. And of course what isn't helping is that I have only been able to sporadically get Salamander's usual vitamin and supplement regimen into him (we did the best we could) - in fact, he has 'missed' most of his usual B12 and mito supplements for almost 5 days now..

We'll get there, we'll get there. I am going to keep him home from school for at least one more day, but I will be working with him on tackling that mountain of school work we have to get caught up on. And then Tuesday will bring what Tuesday will bring...

Saturday, January 24, 2009

Things that made me happy (or laugh hysterically) today..
Hearing Salamander chatter up a storm (I really missed his sweet voice these past several days) and watching him play with Potatey.

Seeing Potatey come bouncing back into the house after having had a blast at his classmate's birthday party.

Hearing from the mom of said classmate how much she enjoyed the fact that Potatey came as "[..] is talking about [Potatey] all the time." (turns out the sister of said classmate has Celiac's disease..).

Having Salamander ask me "who are all these kids" when he 'catches' me on the Lend4Health site, listening intently as I explain and having him say "that's really cool mom. Can I help too? I'll give you my allowance."

Having Potatey ask me, as I am bending over to lift him off the toilet after he did a HUGE poop, "Mom, why do you have a butt on your chest?"

Watching Potatey skip through the kitchen while singsong-ing: "Mommy's got two butts, two butts, two butts.."

Things that made me sad/mad today..
Having a barrista at the Starbucks ask me about the Autism Puzzle Piece I wear on my sweater coat and then as soon as the word "Autism" rolls out of my mouth, getting 'that look' from her and having her rush me through my order without another word.

Leaving the house for not even 45 minutes to go buy a bday present for Potatey's classmate and coming back to a completely trashed house and two hysterically crying kids (yup, I left them with you-know-who.. BIG mistake).

Seeing you-know-who 'roll his eyes' as I am explaining to Salamander what Lend4Health is all about.

The Flu Chronicles - Day Seven

Well, looks like Salamander is through the worst of it. Still keeping him under 'pneumonia watch'.
His voice is back, his color is much much better, and so are his energy levels. Hard part is going to be to get him to continue to take it easy for a few more days.

I will be blogging more later .. gotta go get lunch ready (yes, I'm running late). Potatey has a birthday party to attend later this afternoon (such a wonderfully 'normal' thing to do), and I have snacks to prepare for that ('we'll attend, with our own food' has become my standard reply to invitations of any kind) and I need to help Potatey to wrap up the gift for the Birthday Boy.

Potatey's dad will be taking him to the birthday party, so Salamander and I will be just hanging out and resting this afternoon...(and to be honest? I could much use a nap; I've had a killer headache for the past 36 hours, I have a slight temp and a dry cough.. I pray that I'm not the next one felled by the flu.. )


And this one is for all you parents out there whose kids are seriously impaired in their ability to communicate. YOU HAVE MY ENDLESS ADMIRATION. For about 4 days, Salamander wasn't able to communicate - he had no voice due to laryngitis, he could not read as his head hurt so bad, he could not write due to low muscle tone and other neurological issues that messed up his ability to remember and form letters and words. He couldn't even draw a stick figure. Neither of us knows a meaningful amount of sign language and I do not have a PECS system. It was heartbreaking to watch Salamander struggle so hard to get across to me what he needed and wanted. And the frustration that built up inside him...

I thought I was tough, that I could handle anything. I now realize that I haven't even scratched the surface of 'tough'.... Let's just say I had a reality check, and yes, I so GET IT. You have my unwavering support in pursuing any intervention you deem necessary to help your child improve his/her abilty to communicate...

[and I am counting my lucky stars that Salamander's inability to communicate was a temporary thing, and that HE understood it was a temporary thing, and that, despite feeling utterly and completely lousy, he kept a pretty decent reign on his temper and moods, and that he SLEPT AT NIGHT...]

Friday, January 23, 2009

Sad... and MAD!!!!!!

TOOK A HUGE LEAP OF FAITH AND SENT THIS POST INTO THE TWITTER SPHERE.
And I'm sure I'm going to get flak for what I wrote.. Ah well...

BE FOREWARNED - Comments telling me that "Autism is beautiful, that it's just another way of being, that it needs to be celebrated' or telling me that I just need to 'love my child and all will be well' or telling me that I need 'counseling to deal with my anger for not getting that perfect child' WILL be deleted.

Are the kids that suffer from autism beautiful? Absolutely.
Do the kids that suffer from autism have many beautiful gifts and traits because of their autism? Absolutely.
Do the kids that have autism suffer? Do they miss out on many things because of their autism? Absolutely
Do kids with autism have a RIGHT to all those things that 'just happen' for NT kids? Absolutely
####

Please, go over to my friend Kim's blog and look at this post.



And then contrast THAT with how President Obama's girls are able to express themselves.

There is NOTHING pretty about Autism, NOTHING..
And I'm talking Autism the Dysfunction, Autism the Disorder, yes, autism THE DISEASE here.

I have met Kim's girls - all three of them are beautiful, especially Mia.
My neighbors have three girls, three beautiful NT girls that I've had the pleasure of watching grow into young women over the years. My neighbors' youngest is 15, just a little older than Kim's Mia. I KNOW what girls that age are supposed to be doing. And what you see in Kim's post is NOT what girls that age are supposed to be doing.

Yes, I am angry, very angry. But not about whether or not what happened to our kids was preventable, is caused by X, Y or Z, or whether "the AAP, CDC, FDA, NIH f#cked us over" (I truly believe that there are many many factors at play, not just overvaccination or thimerosal; nor do I believe that the organizations mentioned are 'the axis of evil'....)

I am ANGRY that nobody (beyond those that have kids that are affected) seems to give a d@mn. Where's the outrage, where's the demand for finding out the truths about what is making our kids so sick, and where the HELL is the support, money and research needed to get our kids well?? Where the HELL is the urgency to help girls like Kim's beautiful Mia to get to a point that they can live a life like my neighbors' beautiful girls? Where the HELL is the drive to find a cure, a treatment?

What happened to our kids is NOT SUPPOSED TO HAPPEN!!!!!!

Off to give my beautiful Salamander a hug (who I very much realize is one of the few lucky ones)...


Added at 5.25 pm: I got this article from across the pond and I hesitated as to whether I was going to link to it. It's very harsh, even crude. And the reporter is asking questions regarding in utero screening for autism that I cannot, no will not. consider... For this particular family though, what is described IS their reality, their truth.... WARNING - NOT FOR THE FAINT OF HEART...

The Flu Chronicles - Day Six

4 pm UPDATE
Salamander is definitely feeling better. We actually spent some time outside this afternoon, which was absolutely delightful and much needed. The fresh air and sunshine made us GIDDY!!! I took some great pics of Salamander romping in the snow.. I'll post them later..

####
Salamander seems a little bit better today.. I don't want to get my hopes up, as it's only the beginning of day. But his voice is back, he wants to talk more, he is asking for solids (as opposed to pear sauce or apple sauce or just drink water), AND he's talking about wanting to go outside (okay... slow down bud, let's first see how you do for the next hour or so).

[he just devoured an almond flour muffin, and is now asking if he can take an Epsom salt bath after breakfast.. ]

He continues to cough.. a lot... and he has a history of double pneumonias (although all predating diet changes etc), so I'm going to keep a close eye on things. In fact, I may just try to get a Zithromax script out of one of his docs.. to have on hand, just in case (and trust me, I will only use it if I see things 'go south'; and yes, I KNOW that antibiotics do nothing for viral pneumonias.. but with Salamander's ongoing sinus congestion and strep levels, if we do end up with a pneumonia, it won't be a viral one).

His spirits are definitely up.. he's restless, he wants to DO STUFF. So it'll be a bit of a challenge to get him to take it easy for the next few days..

I'll be spending time today on sanitizing my house. So far, Potatey shows no signs of coming down with anything. Yes, he's had a cough for a while now, but it's a loose and productive one, and he's had it since well BEFORE Salamander came down with the flu.

Me? I am EXHAUSTED.. so I better keep my supplements etc going; otherwise I'll be next..(yes, I am pitching in extra immune and antiviral supports..)

Thursday, January 22, 2009

What's The Simplest Way..

To Protect Yourself from
colds?
flu?
diarrhea?
Hepatitis A?
SARS?
Wash your hands
Wash your hands
Wash your hands
Wash your hands

[from a little guide that Potatey brought home from school earlier this week. The school nurse even went to each classroom to instruct the kids on proper handwashing .. and then of course Potatey had to instruct us.. LOL]

Very timely, considering the 'fun' ongoing here..

Pretty cool.. and so much better than the 'we can give you a vaccine for that' stuff...

New Recipe

Yes, I have sorely neglected my recipe blog. Here is a potato & hazelnut flour pancake recipe I came up with this morning...

The Flu Chronicles - Day Five

And Salamander and I are perilously close to loosing our minds...
We have been couped up inside since Sunday afternoon (all outdoor times I've had is my sneak in/sneak out 2 minutes in the am, 1 minute in the pm to the school bus stop w/ Potatey).

I get that he is miserable. I so get it. And I would give my right arm to speed the 'body destroying flu bug, clearing flu bug toxins from body' process along. But Momma Nature needs time.. (I am supporting Salamander's body in all possible ways to facilitate the healing process.. rest, fluids, good food, vitamins, supplements, as needed OTC medications, the works..)

Salamander is bored out of his skull. His voice is still very impaired (but a bit better today), so talking with me is not an option. His head hurts too much for reading. All he wants to do is watch TV. which I don't mind for an hour here or an hour there - but I will NOT let him watch TV the whole day. But that is not stopping him from asking, and asking, and pleading, and asking, and demanding, and asking again...

He was a little bit better this morning. He slept like a log from 8.45 pm until 7.40 am; only got up once to go pee. Didn't cough ONCE. Had some color back in his face. But from the moment he got up, he has been hacking and hacking and hacking. So now he's looking quite grey/yellowish again. What he really needs to do is curl up on the couch with a bunch of blankets and his favorite stuffed toy, and sleep, and sleep and sleep. Which HE does not want to do as he wants to watch TV....

Ugh..



I told him he couldn't watch TV. Told him to go lay down on the couch with a Comic Book for a bit. To give his body the rest it needed.

About 5 minutes ago, the book hit the floor with a dull thud. And my baby is sound asleep on the couch... not coughing, breathing softly.. Sleep, baby, sleep. It's the best thing for you now...


I hope he stays asleep for about an hour or so. And then I'll have to get some vitamins and fluids into him and then I'll have to drag him with me to the grocery store (as I am running out of all kinds of stuff) and then to school to pick up the work he's missed over the past days...

[and maybe I can even do a quick trip through the Starbucks drive-thru...Yes, I am totally pathetic, I know...]

Wednesday, January 21, 2009

What IF...

the First Child had Autism??

My friend Kim's latest HuffPo piece.. it's not easy to read....yes, I cried...

One of the many parts that hit me head on?

"... her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperament, ability to manage the input and to anticipate a meltdown."

Ah yes.. the autismometer.. it's always on.. 24/7/365. Once you develop it, you can never EVER shut it off....

If you're lucky, like I certainly have been over the course of the past 5 years, you may be able to downgrade your autismometer; from DEFCON 1 to a more comfortable DEFCON 3, maybe even an occasional hour or two at DEFCON 4...

Oh, The Frustration..

Is Palpable...

Not wanting to take anything away from the previous post, but due to his laryngitis Salamander has been almost completely non-verbal these past few days... He can barely even squeak out a whisper.. So he and I communicate by gesture, pantomime, pieces of paper and pencil and any other means we can think of..

And Salamander is getting SOOOO frustrated, to the point of soundless crying (which is heartbreaking to watch), throwing things and punching/biting pillows and blankets, as it is taking 3, 4 sometimes even 5 tries for him to make me understand what he wants or needs... And this is not just happening every once and a while, it's happening a lot...

At least Salamander has the cognitive skills and stamina to keep trying to 'make his voice heard', despite feeling completely and utterly lousy and being in pain ..

So many of the non-verbal kids do not...

Oy...

There is always, ALWAYS Hope..

Mama Mara over at Mama on the Edge has a great blog post up this morning. It talks about the, albeit frequently painfully slow, progress that IS made by our kids. She's asking that her readers share their stories about how far their child(ren) on the spectrum have come over the years.

Here's a clip from her blog post
OBAMAMAMA MARA'S HOPE CHALLENGE:
Do you have a story about how far your child on the autism spectrum has come over the years? Inspire hope in your readers by sharing it on your blog, and provide a link to your post in my comments.

I'd like to pick up on her idea (but full credit does go to Mama Mara). Do you have stories of hope and progress that you want to share? Feel free to do so in my comment section, or by linking to your own blog. Or, as this IS Mama Mara's idea, you can leave your stories on her blog. I would love to see a large web-wide chain of Hope Stories started..

I'll put up some stuff about Salamander a bit later today when I have more time (although there is already plenty on this blog that talks about the progress he has made.. LOL). In the mean time, you all have 'the floor'...

GOING TO HOG THE FLOOR:
You all familiar with the Autism Treatment Evaluation Checklist, or ATEC for short? It's a pretty nifty (but granted, a subjective) scoring checklist to see if the treatments you are pursuing are having an effect on symptoms and presentations that are so frequently part of the "autism package." I am a scientist by training, I like to see data. I stumbled on this checklist early on in Salamander's diagnostic and then treatment process, and I have completed this checklist at various time points over the course of Salamander's journey.

I first completed the ATEC in, I think the Feb - April time frame of 2004. These scores reflected where Salamander was at prior to dietary changes, prior to any substantial educational supports and accommodations, prior to any remedial therapies. So these scores are a reflection of Salamander in his 'wild and feral stage'.

His initial score was 101 points (and the higher the score, the more impaired the subject) - a very HIGH score considering that Salamander had an Asperger's Diagnosis and therefore, by default, was "high functioning." But of course, as we all know the "high functioning" bit is very much tied to an ability to speak.. Salamander has always had speech, and as you can see, Salamander did score 'best' in the category for speech/language/communication. But we made up for that plenty in the other categories.

Total Score: 101 - At Age 6
I. Speech/Language/Communication: 7
II. Sociability: 24
III. Sensory/Cognitive Awareness: 20
IV. Health/Physical/Behavior: 50

I'll give you the actual breakdown. Reading through these still, to this day, hits me like a freight train. Salamander was in bad, bad shape.

**I. Speech/Language/Communication
["very true" is reflective of being LEAST impaired]
1. Knows own name: Very true
2. Responds to `No' or `Stop': Somewhat true
3. Can follow some commands: Somewhat true
4. Can use one word at a time: Very true
5. Can use 2 words at a time: Very true
6. Can use 3 words at a time: Very true
7. Knows 10 or more words: Very true
8. Can use sentences with 4 or more words: Very true
9. Explains what he/she wants: Somewhat true
10. Asks meaningful questions: Somewhat true
11. Speech tends to be meaningful/relevant: Somewhat true
12. Often uses several successive sentences: Very true
13. Carries on fairly good conversation: Somewhat true
14. Has normal ability to communicate for his/her age: Somewhat true

**II. Sociability
["very descriptive" is indicative of being MOST impaired]
1. Seems to be in a shell - you cannot reach him/her: Somewhat descriptive
2. Ignores other people: Very descriptive
3. Pays little or no attention when addressed: Very descriptive
4. Uncooperative and resistant: Very descriptive
5. No eye contact: Somewhat descriptive
6. Prefers to be left alone: Not descriptive
7. Shows no affection: Somewhat descriptive
8. Fails to greet parents: Somewhat descriptive
9. Avoids contact with others: Somewhat descriptive
10. Does not imitate: Somewhat descriptive
11. Dislikes being held/cuddled: Very descriptive
12. Does not share or show: Somewhat descriptive
13. Does not wave `bye bye': Not descriptive
14. Disagreeable/not compliant: Very descriptive
15. Temper tantrums: Very descriptive
16. Lacks friends/companions: Very descriptive
17. Rarely smiles: Somewhat descriptive
18. Insensitive to other's feelings: Somewhat descriptive
19. Indifferent to being liked: Somewhat descriptive
20. Indifferent if parent(s) leave: Not descriptive

**III. Sensory/Cognitive Awareness
[very descriptive is indicative of being LEAST impaired]
1. Responds to own name: Somewhat descriptive
2. Responds to praise: Not descriptive
3. Looks at people and animals: Somewhat descriptive
4. Looks at pictures (and T.V.): Very descriptive
5. Does drawing, coloring, art: Not descriptive
6. Plays with toys appropriately: Somewhat descriptive
7. Appropriate facial expression: Not descriptive
8. Understands stories on T.V.: Somewhat descriptive
9. Understands explanations: Somewhat descriptive
10. Aware of environment: Somewhat descriptive
11. Aware of danger: Somewhat descriptive
12. Shows imagination: Very descriptive
13. Initiates activities: Somewhat descriptive
14. Dresses self: Not descriptive
15. Curious, interested: Somewhat descriptive
16. Venturesome - explores: Somewhat descriptive
17. Tuned in - Not spacey: Somewhat descriptive
18. Looks where others are looking: Somewhat descriptive

**IV. Health/Physical/Behavior
["serious problem" is indicative of being MOST impaired]
1. Bed-wetting: Serious Problem
2. Wets pants/diapers: Moderate Problem
3. Soils pants/diapers: Moderate Problem
4. Diarrhea: Serious Problem
5. Constipation: Serious Problem
6. Sleep problems: Serious Problem
7. Eats too much/too little: Serious Problem
8. Extremely limited diet: Serious Problem
9. Hyperactive: Serious Problem
10. Lethargic: Not a Problem
11. Hits or injures self: Minor Problem
12. Hits or injures others: Serious Problem
13. Destructive: Serious Problem
14. Sound-sensitive: Moderate Problem
15. Anxious/fearful: Moderate Problem
16. Unhappy/crying: Moderate Problem
17. Seizures: Not a Problem
18. Obsessive speech: Moderate Problem
19. Rigid routines: Moderate Problem
20. Shouts or screams: Moderate Problem
21. Demands sameness: Moderate Problem
22. Often agitated: Moderate Problem
23. Not sensitive to pain: Not a Problem
24. Hooked or fixated on certain objects/topics: Moderate Problem
25. Repetitive movements: Not a Problem


It is now early 2009, so we are almost 5 years further in our journey. I just redid the ATEC once again. I'll let the numbers speak for themselves. Now these changes didn't just happen; an enormous amount of work and effort has been put in by a lot of people, most importantly by Salamander himself. Salamander has come far over the years, very very far.

Are you ready? Are you siting down?

Total Score: 8 At Age Almost 11;
down from a 101 score at Age 6
I. Speech/Language/Communication: 0; down from 7
II. Sociability: 0; down from 24
III. Sensory/Cognitive Awareness: 1; down from 20
IV. Health/Physical/Behavior: 7; down from 50

[I am not going to post the actual breakdowns, I DO have them..]

If this is not progress, I don't know what is... Now this didn't happen overnite.. it's been a long and difficult 5 years. But it DID happen...
And frequent visitors to my blog KNOW from my stories that these changes in the numbers are also reflected in Salamander's daily life, in his quality of life.

Progress is possible, never EVER give up hope. You just have to keep on looking for the right combination of 'things' that will help YOUR child the most..

Tuesday, January 20, 2009

To New Beginnings...

and Better Times and True Change...

Go HERE for the text to President Obama's Inaugural Address...

Parts that gave me goosebumps (and I can honestly say that I have never been this affected by words spoken by a President of the United States before..)

"But our time of standing pat, of protecting narrow interests and putting off unpleasant decisions — that time has surely passed. Starting today, we must pick ourselves up, dust ourselves off, and begin again the work of remaking America.

For everywhere we look, there is work to be done. The state of the economy calls for action, bold and swift, and we will act — not only to create new jobs, but to lay a new foundation for growth. We will build the roads and bridges, the electric grids and digital lines that feed our commerce and bind us together. We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost. We will harness the sun and the winds and the soil to fuel our cars and run our factories. And we will transform our schools and colleges and universities to meet the demands of a new age. All this we can do. All this we will do. "

[...]

"Recall that earlier generations faced down fascism and communism not just with missiles and tanks, but with sturdy alliances and enduring convictions. They understood that our power alone cannot protect us, nor does it entitle us to do as we please. Instead, they knew that our power grows through its prudent use; our security emanates from the justness of our cause, the force of our example, the tempering qualities of humility and restraint.

We are the keepers of this legacy. Guided by these principles once more, we can meet those new threats that demand even greater effort — even greater cooperation and understanding between nations. We will begin to responsibly leave Iraq to its people, and forge a hard-earned peace in Afghanistan. With old friends and former foes, we will work tirelessly to lessen the nuclear threat, and roll back the specter of a warming planet. We will not apologize for our way of life, nor will we waver in its defense, and for those who seek to advance their aims by inducing terror and slaughtering innocents, we say to you now that our spirit is stronger and cannot be broken; you cannot outlast us, and we will defeat you.

For we know that our patchwork heritage is a strength, not a weakness. We are a nation of Christians and Muslims, Jews and Hindus — and non-believers. We are shaped by every language and culture, drawn from every end of this Earth; and because we have tasted the bitter swill of civil war and segregation, and emerged from that dark chapter stronger and more united, we cannot help but believe that the old hatreds shall someday pass; that the lines of tribe shall soon dissolve; that as the world grows smaller, our common humanity shall reveal itself; and that America must play its role in ushering in a new era of peace."

Tonite we celebrate.. and tomorrow, the work will begin. It's gonna be hard, tough choices and decisions will have to be made, and it'll take time, more time than we'd all would like, to see change. But at least now we have a Commander-in-Chief who is facing up to reality and WILL make the tough decisions....

Been Neglecting an Old Love...

UPDATE ON JAN 21:

The twins' loan has been funded. And Julian's is getting closer and closer...

###
't Is no secret that I've been more than a tad preoccupied with my own stuff...


And while I have been checking in on 'the lend4health kids, I haven't written about them, nor have I kept track of the recent Cinco de Linco days...


What better day than today to put the spotlight on a couple of brave little warriors, to spread a little hope?


Hope is what today is all about. Hope and New Beginnings. Won't you give a little hope and a chance for a new beginning to these cuties?


There is Kostantinos, an adorable 4 year old boy with autism who is only $140 away from being able to have some much needed medical testing done.


Two adorable twin brothers need help in paying for Defeat Autism Now! appointments and testing

Then there is cute as button 5 year old Julian with autism, whose daddy is currently on tour in Afghanistan, and whose mommy is trying to pay for an appointment at an autism clinic in the UK.

And then there are 7 year old Dazmen and 5 year old Joseph.

Please, take a moment to read these kids' stories. These little warriors deserve all the help they can get.

TIA

Winter Wonderland....




What's In Your Medicine Cabinet??

[cheap shot at the "What's in Your Wallet" commercial..]

Yesterday, as I had the shear stupidity of going to a store shortly after roads were clear enough to venture out and my entire town had been trapped indoors for almost 36 hours (yes, total murder and mayhem; as the whole friggin' town was out and about), it struck me again how much unnecessary CRAP gets put into OTC (over the counter) medications. I mean, why in the blazes does even a simple cold remedy need to contain FD&C yellow this, FD&C blue that, artificial flavoring this, maltodextrin that? It's MEDICINE, for goodness sake, it's supposed to taste BAD (and actually, most the regular OTC stuff now tastes really bad to me and the boys - yup, we reprogrammed our taste buds..)

And then of course most cold remedies contain acetaminophen (aka "Tylenol".. NOT for MY boys), or corn or dairy derivatives.
So what's a mommy to do, because Salamander truly is miserable and he needs a little 'somethin' to help him fight whatever this is off.

You try to find stuff that is "less bad".

So here's what I stocked yesterday for my 'sniffles, coughs, cold, croup, laryngitis, etc' cabinet:
  • Benedryl - Dye-free; yes, that one still contains 'stuff' I don't like. But it's a MUST have here, in case of allergic Shenanigans.
  • Motrin - Dye-free: Yes, that one too contains 'stuff' I don't like. But sometimes you've got no choice.
  • Boiron Coldcalm homeopathic tablets
  • Hyland's Cold 'n Cough 4Kids Syrup
  • Hyland's Sore Throat homeopathic tablets
  • ZICAM Homeopathic No-Drip Liquid Nasal Gel Cold Remedy
  • HerbsforKids Temp Assure Temperature Support Herbal Supplements

Now please understand that I know very little about homeopathy. But the homeopathic stuff I listed above I have used myself, with decent success.

For Salamander's current "congestion, stuffy, croupy cough, laryngitis" thing, the ZICAM nasal spray, Hyland's Cold n' Cough syrup and Sore Throat tablets seem to give him relief (and this is of course on top of his usual antiviral & antibacterial & immune system support stuff). And yes, I DO give him Motrin at bed time, and even during the day, if the headaches get too much to bear (we do the 1 to 10 scale. He gets Motrin for anything over an 8).

For the rest, this thing will have to run its course. So good food, lots of liquids, plenty of rest.

Salamander looked better this morning when he get up, the cough seems to be a little more lose. Still no voice (he has a 'mouse squeek', poor kid).

I am still planning on running a UTM as soon as I have more test kits..

Monday, January 19, 2009

Just a Wee Bit of Snow...

Give or take 14 inches, by the time the storm moved out....

[consider the image above a little 'appetizer'.. I have several more, but I have trouble uploading.. internet access is slow as a slug...]

Long day here, long "DEFCON 2" kinda day. Poor Salamander is just miserable - croup, laryngitis, fever, aches, muscle pains.. I haven't seen him like this in quite a while. He is trying very hard to keep his 'snarlyness' on a tight leash (and I give him huge credit for that), but not always succeeding... And Potatey is just confused, as he hasn't seen his brother like this in quite a while either.

Not 100% sure what is going on.. There are all kinds of 'bugs' doing the rounds.. My bets are on increased detox.. can't confirm, as of course I ran out of UTM test kits..(should have more kits come in tomorrow)

Hoping that Salamander is well enough tomorrow to go to school. But if not, then I'll keep him home...

I LOVE my boyos, I do, I do, I do.. But I'll be honest.. I am BUSHED and looking forward to bedtime (and "24" tonite). I am so out of "DEFCON 2" practice.. (which is a GOOD thing).

Sunday, January 18, 2009

Hey Shorty, Hey Fatty - Continued

Silk left the following response to my very long "Shorty, Fatty" post, and I was going to respond in the comment section. But my response got kinda long, so I decided to give it its own post..


Silk wrote:
And that is why I home educate. I cannot stand the thought of my aspie getting tortured by those who discover how sensitive he is, even his friends. And why do teachers get to decide that Shorty isn't an insult, but Fatty is? It would piss me off. Your creative solution would have never occurred to me. And the puberty thing coming up, I don't even want to think about it. Hormonal changes and communal showers are often traumatizing for N.T. kids well into adulthood, I would insist on lack of communal showers in my son's IEP or 504 in the same way that he gets one on one testing for state standards instead of the sensory overload of group testing. Of course he may not have either of those tools by then, but public school social policy sucks.


Silk, you are a stronger person than I am. I thought about home education, especially during the, socially very difficult, 2nd, 3rd and even first 2/3rds of 4th grade. But I know myself, I know my limits. I can do a lot, I can handle a lot, I can teach and model a lot on the social, how to get along, how to play, how society-at-large works front. But I am NOT cut out for imparting academic skills. I learned THAT during homework times with Salamander...

Have I thought about enrolling him in a school more geared towards his particular complex of needs, so that he'd be amongst similarly inclined kids, with staff more sensitized to these kind of issues? Absolutely. But these schools I cannot afford on my own, I'd have to fight for an outplacement. Plus enrolling Salamander in a 'special' school would go against what I have always wanted for him, what HE wants for himself. And that is to be amongst the 'regular' kids, to be part of larger society, to NOT be kept separate.

It's a tough balance and a tough battle.

I can tell you that even as recent as a year ago, the conversation between Salamander and I would have gotten stuck at the "But it's mean, mommy. So because he's mean, I am mean back and call him Fatty" point. And no matter what I would have said, how I would have said it, the conversation would have circled around this.. again, and again, and again, and again, until we either both ended up in tears or screaming at each other.

The really sad part of the whole situation is that T is a fellow spectrum inhabitant. And it makes me profoundly sad to see these situations occur between T and Salamander (what I relayed is just one example). If anything, these two souls should have found common ground, should have a unspoken understanding for each other... But it shows you that, once again, kids are kids, regardless of what their 'complex of challenges' may be. Some are gentle, some are sensitive and some are susceptible to 'negative programming'; which is what I suspect has happened and is happening to T. T has been taught by his environment that going the 'negative attention route' (e.g. teasing, whining, complaining, tattling) gets him what he wants (and I'm talking much bigger environment than school here.. school has swung the other way in that T will always be accommodated.. even if that is not in his best interest... as the school environment does not want to deal with the backlash when they decide not to, and I think that the school staff feels sorry for T). I wish I could help T more, I wish I could help school and the rest of his environment understand that they are not doing T any favors. This boy is already pushed to the outer edges of 5th grade society, it's gonna get infinitely worse in Middle School, and then later on as this boy grows into an adult. My heart really does break for this guy, but I need to focus on what is best for Salamander...

And Salamander is no longer on the edge looking in, he's part of things, so it's my job to give him all the tools he needs to continue to be part of things. And yes indeed, who gets to decide that Fatty is an insult, but Shorty is not? It's totally arbitrary.. but unfortunately, that's real life. And while my first instinct always is 'to protect', I also need to allow for Salamander to learn, to grow, and yes, to learn a few painful lessons. If I can impart at this point in his life on Salamander a few tricks and scripts and methods to deal with these types of situations, then hopefully it will carry over into Middle School and beyond. Hopefully I can set the stage now for dealing with grown-up challenges; as to how to not let a difficult boss or co-worker get under your skin, how to deal with rejection, how to deal with all of life's disappointments.

Salamander has known since the beginning days of the various diagnostic processes that his challenges have names, that his challenges result in X, Y or Z being more difficult, results in him doing A, B, or C. I don't believe in not disclosing to a child what is going on.. and I realize that's a very personal choice. Until recently Salamander probably didn't fully understand or comprehend, but that is changing. He is reading books specifically written for children regarding Asperger's, regarding anxiety, regarding bipolar mood storms, regarding angry outbursts, regarding his physical ailments. And of course it's triggering a ton of questions and initiating conversations that are difficult to have (the hardest questions are always "Why did this happen to ME, mom?", and "Will I always have this?"). But these are conversations and thought processes that NEED to take place, to help Salamander eventually grow into a confident and well adjusted adult. An adult who will not avoid the difficult situations, an adult who will advocate for himself, who will try, try and try again.

I am not a big believer in 'avoidance', but I am also not a big believer in 'down playing'. Salamander knows that a whole bunch of things will always be more difficult for him, that there will be things he'll have to do for the rest of his life (diet, supplements, lots of sleep, lots of outdoors time, etc) that will set him apart from others. And that this is, and will continue to be, very hard and d@mn unfair.

What I will NOT allow him to do (and he knows this too.. and trust me, we DO have confrontations and fights about this) is to use his challenges as a reason to give up, to NOT try, or as an excuse to hide behind, or to use to blame everybody else for his life not working out the way he planned, or to justify that everybody else is 'out to get him' (we have enough of THAT going on on his father's side of the family; but truth be told, I too have family members that are guilty of this). If there is anything I want to teach both my boys is that you meet challenges head-on. And it's possible that both my boys will resent the hell out of me as they get older for making them fight, for making them work through their challenges, for not taking the easy way out. And that is something I'll have to come to terms with if that happens...

I realize that I drifted pretty far away from Silk's original comment. And I also realize that I got on my 'yes, society needs to accommodate our kids' challenges, but at the same time we DO also need to teach our kids how society at large works' soapbox...

Take my musings for what they are worth. I so do realize that each child is different, and that each parent knows their child best and, therefore, makes the decisions that are best for that particular child. I'm just sharing where I am coming from...


HERE'S the link to the original post..

I think I'll live.. LOL...

Boys survived my 'absence' yesterday.. well, physically at least. All fingers and toes and other body parts still attached. Supplements happened kinda loosy goosy and they had more 'junkie type food' than I typically allow, but at least they are at a point that they can handle a day of less than ideal support for their bodies.

Mentally/emotionally, Potatey came through things with flying colors - he will always find a way to make things work. Salamander, however, was in a rough spot last nite, and he's also not doing too good today. Time for some dedicated and intense TLC...

Oh, and to any of my readers in the DC area? I hope you make it out there to catch some of the Inaugural festivities. I am with you in spirit and will be living vicariously through you (and I promised my boys, that we WILL be in DC for the next Inauguration - they'll be almost 10 and 15 then...). This April it'll be 16 years that I've lived in the States, and it'll be the 4th Inauguration I get to experience.. none of it ever caught my interest.. until this one....

Saturday, January 17, 2009

I had some weird allergic and/or sulphate reaction last nite....
My entire face and upper chest turned bright bright red, I got itchy all over and I started coughing and wheezing. I was able to put a stop to whatever was going on with a couple doses of Benedryl (and if it had not, I would have used an Epi-Pen followed by a 911 call - TG that wasn't necessary...as the boys would have had to come with me in that case - yeah, major freak out would have ensued).

Today I just feel totally weird - very lightheaded, I have the chills, I am aching all over, and I am still wheezing (no fever, no congestion, no pukeys - so I don't think it's the flu or something like that). In fact, I feel so lousy that I had to resort to asking the boys' dad to 'take care' of the boys for me (a decision I may regret later, once I rejoin the living; plus you can all imagine how well my request was received....).

I'm crawling off back into bed now.. I hope that a few hours of sleep will put a stop to whatever is going on...

Friday, January 16, 2009

Salamander is going to graduate from Lindamood-Bell!!!!! The staff has done an incredible job in teaching him and helping him remediate his gaps in reading and math. He is much more confident, much more solid, much more automatic and fluent.. in a variety of areas. There is not much left to actually teach him.. it's now a matter of practice, practice, practice and more practice.. (I can't wait to see the 'retest' results... and, oh evil me, I can't wait to share those retest results with school....)

I'll write more about it later.. We'll continue to go to the center for a while longer (probably end of school year), but we are going to start tapering down from the intense schedule. We have another 8 hour instruction week next week, and then we'll probably drop down to 4 hours until February school break. And after that we'll go to 2 hours, but mainly focus on study skills...

It's been a very crazy, hectic, oh I lost track of how many (three?) months, driving back and forth 5 days a week, time (but oh the conversations we have had during those long car rides..). I have no regrets.. this continues to be in the Top 4 of 'big wows' for Salamander (diet, AI/OT, Dr. Amy Yasko, and now Lindamood-Bell)....

Expensive? Yes. Price-less? YES!!!!!!!

Hey Shorty, Hey Fatty

[how to explain to my kiddo with an autism spectrum disorder when a comment on a physical attribute is just a comment and when it becomes an insult.. And as an extension, how to break negative response patterns]


So Salamander, while growing overall like a weed, is still rather short when compared to his classmates. And as Salamander is the product of two 'midgets' (I'm not too tall, and neither is dad), well, he'll probably never become 6 foot 2. And quite a few of the other kids in Salamander's class are products of GIANTS, so there you go.

But Salamander is at a tender age - any comment about your physical attributes (0h the fun we will have once he fully enters puberty and this whole 'all boys taking a shower after gym' thing starts in school...) can, on any given day, become a HUGE BIG FAT (pun intended.. please read on) insult.

There is another boy in Salamander's class with a similar complex of neurodevelopmental delays. Unfortunately for this guy (and my heart does break for him), he is so not getting the social nuances that play out between the average 5th grader. This guy is very much left out of a variety of social interactions within the class room, he truly is left 'on the side' in many many situations. And as I said, while my heart breaks for him, I do have some issues with the way this guy has been taught to go about getting his share of attention.

He WHINES (yes, capitalization is appropriate here), he COMPLAINS, he DEMANDS that the teachers intervene in every single situation ("I'm gonna tell the principal if you don't help me."). I can't stress enough that I understand how this guy feels (hey, it wasn't that long ago that Salamander was left on the side looking in), I understand that the constant rejection must be unbearable. However, I can never accept or condone (heck, I don't accept it from my two, and they KNOW it) demanding attention by going the 'negative' route'.

I also realize that it is probably NOT a conscious behavior on the part of this guy - it's a learned and re-enforced behavior.

This guy is big, really really BIG. Early puberty and all that; and the Standard American Diet. I think the kiddo outweighs ME with at least 15 lbs (and I am not exactly petite).

This kiddo, I'll call him T, has fallen into this 'trading insults' pattern with Salamander. T calls Salamander "Hey Shorty." whenever they cross paths (which is all the time as they share a class room and many of the same pull out services). And right now, being called "Shortly" just isn't sitting so well with Salamander. So Salamander, as his feelings are being hurt by being called "Short", replies in kind with "Hey Fatty.". Of course T then runs of to the school staff and complains that Salamander is being mean to him and calling him names (point granted).

Salamander replies with a 'Well, he started it. He called me Shorty." (and in his wonderfully straight laced, rather black and white Asperger's mind, there is NO 'severity of insult' scale. Shorty and Fatty are insults. Period.).

School staff of course then tells Salamander that being called Shorty and calling somebody Fatty in return are two completely different things, and that Salamander better not ever use that insult again or he'll be punished. Salamander of course gets P.O'd. And T has accomplished his mission, which is 'get attention from the staff, and get attention from Salamander." Yes, we all realize that it is NEGATIVE attention. I don't think T understands the difference.

So here I am, having to explain to Salamander why it is that HE got into trouble for name calling while another person started it, and WHY there is a difference between "Shorty" and "Fatty".

I acknowledged to Salamander that really, when your feelings are getting hurt, it doesn't matter what the other person said. Just because your feelings got hurt by being called something, it becomes an insult. For example (and Salamander did have to laugh when I said this), there may be days that Salamander's feelings get hurt by being called "Freckle Face." While on other days, especially if that comment is being made by a cute girl, it's not an insult at all!! However, regardless of whether or not a cute girl says it, being called an "Idiot" is always hurtful.

So whether or not a comment is an insult all depends on the receiving party's feelings and perceptions, as well as on society's definitions. While Salamander gets the 'how it makes you feel' part, the societal piece is harder to grasp, as it all seems very arbitrary to him (point granted). I agreed with him that what society at large thinks is hurtful or not is ever changing and not very logical, but that if you want to get along and not constantly get into trouble, you are going to have to learn to follow "those silly rules." And as Salamander very much wants to get along and be liked, he is putting enormous effort in learning the rules and applying them appropriately.

I explained to Salamander that, from most peoples' perspective, being called "Shorty" is just a silly joke, a 'no big deal, get over it' kind of thing (regardless of whether or not it's a big deal to the person on the receiving end of the comment). For the teachers, having a student be called a "Shorty" is not something that lands in the 'must be addressed by adults' category. It falls in the 'teach kids to ignore this, to toughen up a bit' category. However, having student be called a "Fatty" does fall into the 'must be addressed by adults as it IS an insult' category. Hence, whoever says "Fatty" gets into trouble, regardless of what preceded the Fatty comment.

Salamander thought this was all grossly unfair (and I agree). And he said: "Well, I'm going to continue to call him "Fatty" when he calls me "Shorty", and I know I will continue to get into trouble and I don't care, because it is just not fair."

"OK, kiddo, take a breath. So what do you want to accomplish here? Do you want for T to stop calling you Shorty? Or do you want to continue to get into trouble."

"I want for T to stop calling me Shorty. But I explained to him many times that I don't like to be called Shorty but he says that the teachers say it's no big deal and that's why he can keep calling me Shorty. And I HATE that."

"I completely get how upset you are. So let's think about what we can do to stop him calling you Shorty. Is he calling you Shorty all the time, or is he doing this in certain situations."

"He's doing it when he's calling my name and I won't respond because I am busy with something."

[Ah, as suspected, T wants Salamander's attention. T can't get Salamander's attention. So T goes down the path of what has worked in the past to get Salamander's attention. Sure, the result is negative attention, but it IS attention]

"OK. Thanks for explaining that. So I don't think that T is trying to hurt your feelings by calling you Shorty, he's trying to get your attention. And he's learned from the 18 million times that he and you have gotten into this situation before, that calling you Shorty gets your attention."

"But it's mean, mommy. So because he's mean, I am mean back and call him Fatty"

[tune of 'And the wheels on the bus go round and round' starts playing in my head]

"Peanut, we need to find a different way to still give T the attention he wants from you, without getting into this whole Fatty, running to the teachers, Salamander gets in trouble thing."

[I'm thinking, how do I explain to him the concept of "Insanity personified is doing the same thing over and over again and expecting different results." But that is still too beyond Salamander at this point]

"So how about the next time he tries to get your attention and calls you Shorty, you take 3 very long deep breaths and say to him "Hey black hair.", or "Hey brown eyes,." or "Hey orange shirt".

Salamander's eyes get as big as saucers and a little giggle escaped. "That's totally silly, mom"

"Yes it is. And it also a response that T doesn't expect. So by responding that way instead of launching into your usual response, you are going to force T to think about what to do next. And two things might happen. He may burst out laughing and call you 'blue eyes' in return. And you'll call him "Green pants" and you'll both end up with the giggles and that's OK. Or he goes to complain to the teachers that you just called him "black hair". And for the teachers being called "black hair" does not fall into the "must be addressed by an adult because it's an insult' category. Now the teachers will think "Well, T, you need to learn to deal with these things on your own. And hey, what did YOU call Salamander to be called Black Hair in return. Oh, you called him Shorty, well, that's not very nice."

And you can see the wheels in Salamander's head starting to turn. And voila, this incredible smile blooms on his face, followed by an "Oh!!!".

"Now peanut, this is something that you are going to have to practice. As your instinct is going to be to call him Fatty. But try very hard not to do that. Keep reminding yourself 'three deep breaths and call him black hair/brown eyes/orange shirt.' And I am pretty sure that soon T won't be calling you Shorty anymore."

"OK. This could be fun, mom. I will try this. But what about when he calls me by my middle name?"

[Salamander has an unusual middle name - it's a name that has carried over from generation to generation on his father's side of the family to the first son of each generation. I know, I know.. it's kinda stoogy, but you can't escape or do away with all traditions.. Now Salamander's dad happens to have this unusual name as his FIRST name.]

"OK, sweetie. Next time T does that, you stop what you are doing. You start looking all around you. You look confused. And you say to T "My dad is here?? You just called my dad's name..."

"Oh mom, that's just too funny [fit of giggles]. T won't know what to say."

"Exactly. What I am trying to show you is that you can 'win' in these kind of silly situations. By not even entering a fight. Just by saying something unexpected..."

Now to clarify, T and Salamander are friends, they are GOOD friends, they have been friends since Kindergarten and they really clung to each other for survival during 2nd through 4th grade. But what is putting serious strain on this relationship is that Salamander has matured in his social skills, he has made many more friends, he is part of the '5th grade crew' now. But that is not happening to that extend for T. And while Salamander understands that this must be hard for T, and he wants to stay T's friend and help him, he also feels held back and smothered...

Salamander and I have talked about writing a social stories type letter to T to explain some of what is happening. I think we'll work on that this weekend...


Growing up is hard.
Growing up with an autism spectrum disorder + other 'baggage' is triple hard.

Growing up while recovering from an autism spectrum disorder + other 'baggage', and trying to slowly catch up to the rest of your NT peers (who've had years of practice at this stuff) and not drive yourself bonkers in the process?
Almost Mission Impossible.

But I know that Salamander is up for the challenge. And I'll help him anyway I can...

[and as you may guessed from this conversation and others, I am NOT a big believer in the 'Well, it's OK. Just ignore it. It'll stop. It'll get better. It's not big deal." type of response.
First, it completely and utterly invalidates the child's feelings that what they are experiencing is a BIG deal for them (kiss of death to self esteem - especially if it's already fragile).
Second, it teaches the child NOTHING. Well, actually it DOES teach the child something. That what they are feeling, that THEY, don't matter...]

Thursday, January 15, 2009

In Awe...

Riley will have her service dog....

So Today...

Salamander is home from school. He wasn't feeling good getting up this morning (and he was EXTREMELY clumsy), complained of stomach pains as we were walking to the bus stop, and then, just as the school bus arrived, threw up all over the sidewalk (poor guy - but hey, I'll be honest, I'd rather have the mess outside than inside...).

He took it real slow this morning, definitely withdrew into himself. Little to no voluntary speech, and what speech he has is more at a 3 to 4 year old level. Little awareness of his surroundings, little presence to basic safety (look before you cross the street, don't leave a store/house without letting me know), spaced out. clumsy, poor balance, very low energy.

All in all, he's very "mito" and much more "autistic" than I've seen him in a long time...

He'll bounce back, I'll get him back on track, I have enough experience with this phenomenon by now to know how it's gonna play out.

And "autism" is just another way of being, eh??? Well, maybe for some. So NOT for Salamander... His "autism" and the intensity of the presentations and symptoms are directly tied to his metabolism not functioning the way it is supposed to.

All In A..

(give or take a few hours) 24 hour period....

Did you know that elaborate and decent size Lego structures can really inflict injuries when they fall off the table and hit you square across the knuckles and mid part of your hand? Yup.. I was attacked by one of the boys' Lego structures yesterday - two split knuckles, a gash and lots of internal bruising of the tendons. My hand looks like I tried to deck somebody (wishful thinking.. LOL).

It hurts like hell. I use my hands ALL THE TIME. I am right handed. I drive a car with a stick shift. Guess which hand is busted up? Yup... (so I do apologize for any and all typing errors.. I am not as quick on the keyboard as I typically am).

Salamander thinks my hand looks cool ('looks like you are a good fighter, mom'.. Uhm.. OK...). Potatey is just totally freaked out.

Two additional work projects landed in my lap yesterday. Just like that. Separate from the two leads I am actively pursuing (still trying to finish up that one project.. of course with my typing speed down....). Funny how this business goes - feast or famine. And as I'm been 'starvin' for a bit (with unexpected and undesired expenses cropping up everywhere), it's good to have some 'feastin' up ahead.

The dental hygienist and school nurse at Salamander's school have been at it the past few days. Lots of talking about the wonders and necessity of vaccines (did you know that apparently a vaccine against cavities is in the works/available? Couldn't get complete clarity on the status of this one out of Salamander. But really - how about just cutting out the majority of all the sugary and cornstarch based crap out of your kids' diet? Will do wonders in reducing cavities...). Salamander, being the still somewhat literal minded person that he is, and combine that with a very strong sense of 'you have to follow the rules' came home all worried and upset.

"But mom, the nurse said that I had to have vaccine X."

"OK, honey, did she specifically say that you, Salamander, need to have this vaccine or was it a general statement to the class."

"A general statement to the class, mom, after she asked if we could raise our hand if we had had vaccine X. And then because me and some of my friends didn't raise our hands, she told us that we needed it."

"OK babe. Next time a situation like this happens, you smile very politely and say "Thank you for the information. I'll talk with my mom about it." And then you and I will talk about it, as we are talking now."

"However, if she ever starts asking YOU specific questions as to which vaccines you have had, and which you haven't and why not, then you reply to the school nurse that this is 'private' information and that she should call me, your mom."

"OK mom"

Oy - it's flu season and all, and kids in school have been dropping like flies with the pukeys, head colds, the flu and what not, so I am not surprised that as part of health classes there is a push for vaccines as 'the miracle prevention against illnesses'. That whole stance of course is annoying as heck, but ah well....

Salamander and I had another, very interesting conversation in the car earlier that day (we definitely do our best talking in the car) - I'll try to write it up later.
He continues to be a bit on the short side compared to his class mates (I know he'll catch up), so this one boy (a very LARGE boy, if you get my drift) has been calling him 'shorty' (which really hurts Salamander's feelings).
Salamander has been replying in kind with 'Hey fatty', which of course has gotten Salamander into trouble, as the boy goes to complain to the teachers. And even though Salamander is trying to explain that for him 'shorty' is as much of an insult as 'fatty', the teachers haven't been looking at it that way.
So I've been coaching Salamander to reply to this boy, the next time he says 'Hey shorty', with "Hey brown eyes", or "Hey black hair." Or "Hey orange shirt." To try and break the negative response cycle. And if the boy decides that "Hey black hair" is an insult and goes to complain to the teachers, well, they should then be giving him the same response as they have been giving Salamander on the "shorty" comment.
The conversation grew from there, and I don't have time to write it all up now.. It was a very interesting one and definitely a great opportunity to teach a larger 'live lesson'...

Well, I got to save SOME strength and endurance in my right hand for work related keyboarding.. Catch ya all later...

Wednesday, January 14, 2009

We're OK..

Lots of interesting stuff happening.. but no time to write about it. Trying to wrap up one contracting job, about to start another, actively pursuing leads for two more jobs. And then of course there is the usual stuff...(cooking, supplement mixing, driving to Lindamood Bell every day, grocery shopping, cleaning, laundry, bills, helping with homework, working out situations that arise at the boys' schools, blah blah blah..)

Salamander is doing really great with his math tutoring at Lindamood Bell - the effects are now starting to show at school as well. He is spending less and less time in the Resource Room/Pragmatic Learning Center for math assignments and more time in the regular classroom (as his working speed has gone up, he is better able to get his work completed in the allotted time and he's better able to keep up with what is being taught).

Oh.. and I LOVE the Hyland's Earache Tablets. Salamander has been quite congested these past few days, and on Monday afternoon visited the school nurse several times complaining of 'stuffed ears and a bad head ache'. Nurse reported that Salamander's ear drums looked 'pink' and that he should see a doctor as he 'may have an ear infection.' I know he had some fluid in his ears but I don't think we were at full blown ear infection stage yet. So I started Salamander on the Earache tablets to address the discomfort while at the same time boosting his immune system, anti viral, antibacterial supplements. He reported this morning that his ears 'feel much better, and are no longer stuffy'. YIPPIEIElE. Of course I'll keep a close eye on things, and of course if symptoms return or get worse, then I'll take him to a doctor. And then, if absolutely necessary, I'll put him on an antibiotic...

Gotta go now.. Later...

Sunday, January 11, 2009

At Home with Chef Z - Continued

As promised, the vids.

Here's the first one:

Now I wasn't planning on adding any commentary.. after all, how about just enjoying a good thing as it happens eh?

But I HAVE to comment. Did you all notice how HARD Salamander is working at peeling that apple, and how he maintains focus, despite me asking him questions? And that the apple peeling using that peeler is not always going so smoothly for him?

But he keeps at it, does NOT give up, does NOT get frustrated. Even as recent as a year ago, he would have hurled that peeler through the kitchen after the first time he had a less than successful 'shave'. And truth be told, even as recent as a year ago, I wouldn't have felt comfortable letting him handle anything that was sharp and could be used for less than 'tranquil' purposes. And there continue to be days that I won't let him get near anything that's sharp, and I am still apprehensive about letting him use any tools (like a hammer or a saw). And I continue to fight his dad on letting Salamander have a pocket knife. And I am not admitting to that to have you think less of him. But to simply be honest about his less than 'tranquil' tendencies.

See, I don't see the need (anymore.. and I don't think I ever did feel that need) to sugarcoat the fact that Salamander DOES have aggressive tendencies. It always irks me to no end when a certain persuasion within the autism community gets all 'huffy and puffy' at the mere suggestion that kids with an autism spectrum disorder can be violent. They immediately go '"but that's not true. Kids with autism are these kind and gentle souls, they wouldn't hurt a fly."

Bull Sh#t...

That to me is as ridiculous as saying that every child that's battling childhood cancer is 'brave and courageous and strong.' Well, some are, and some are not. Just like some kids with autism spectrum disorders are violent and others are not.

That doesn't mean that Salamander as a person is a violent psychopath hellbent on inflicting hurt and pain. He's not. When he is in his good space (and TG he resides more and more in his good space these days) he is an extremely kind, gentle and emphatic soul.
But on days that a mood storm strikes? Well, that's when his frontal lobe packs its bags and takes a vacation, that's when all those executive functioning skills deficits hit full force. Once his emotional processing hits a certain threshold, the volcano simply blows (you'll actually find a lot of references to 'lack of emotional filtering' or 'they have no emotional filter' in books that talk about kids with bipolar disorder and bipolar tendencies). And there are plenty things that have happened here during 'eruptions of the anger volcano' that are pretty horrific.

This is, however, part of Salamander's package. And it has resulted in the early days after diagnosis in him being refused admittance to the well known, specially geared for Asperger's, HFA, NLD kids, camps and social skills classes in this area. It's a lot of fun to be told by professional and well known and well respected organizations that you turn to for help, that they won't touch your 6 or 7 year old kid with a 10 foot pool, despite claiming being 'specialists' in how to work with affected kids. At least the Challenger Camp in my own town was not run by a bunch of sissies - they were willing to take Salamander on, and have done a beautiful job over the 5 years he has attended that camp. There have been outbursts and situations, absolutely, but we have always been able to work through things.

At least these days, he has a lot more self control (and all the vitamin D, vitamin K, rosemary, sage, 5-HTP and a whole bunch of other supplement tweaks have helped a lot too). But I do not take for granted that it's going to stay that way, especially with puberty now entering the mixture.

Which is why I am enjoying moments as reflected above even more. Because they re-enforce that, when Salamander's metabolism (especially the neurotransmitter piece) works like it's supposed to, amazing things happen. And they also re-enforce that, when sh#t hits the fan again, that it's not as simple as 'well, he's just a poorly adjusted, mean kid that needs more discipline'

Off my soap box now.

Here's the second vid. This one could have been great, but the batteries in my camera died....

Off to take the boys sledding for a bit.. we now have TWO snowtubes (hopefully that'll cut down on the back injuries..)

T minus 3.5 hours....

Saturday, January 10, 2009

At Home With Chef Z....

Salamander is enormously interested in experimenting in the kitchen, preparing meals, coming up with new recipes these days.. I am THRILLED, as not only will his interest help tremendously in preparing him to continue to stick with his dietary requirements once he 'flies the coop', I also LOVE having the company in the kitchen as well as an extra pair, of increasingly capable, hands.

We had a blast 'messing around' in the kitchen last nite. I even shot a few videos of him (after I asked his permission of course). Unfortunately, the batteries in my camera died only a few minutes into the second video. I will post them both as soon as I have a moment to download them off my camera.

Salamander has announced that he wants to 'prepare THE meal' again tonite.. and that he is ready for taping another episode of 'At Home with Chef Z'..

He's been talking about taking cooking classes, going to cooking school, opening his own restaurant... And it is so NEAT to hear him talk about his future, his likes, his plans. Of course we'll have to see if it all sticks.

But boy, wouldn't that be something? If he manages to become a chef, have his own restaurant, cook foods that fit his particular dietary requirements - especially considering his 'history'??? You betcha that if this turns out to be his dream, that I'll do ANYTHING to support it...