Friday, October 31, 2008

Trick 'r' Treatin' w/ Dietary Restrictions..

QUICK UPDATE:
WE HAD A SPOOKINGLY AWESOME HALLOWEEN; WE COVERED MORE HOUSES AND STREETS IN OUR NEIGHBORHOOD THAN EVER BEFORE.

AND JUST WATCHING SALAMANDER BOUNCE FROM HOUSE TO HOUSE YOU WOULD NEVER HAVE GUESSED HIS "BACKGROUND". TO MY SURPRISE (AND SECRET DELIGHT), POTATEY WAS THE ONE THAT CALLED IT 'QUITS' FIRST, WHICH WAS A TOTALLY UNEXPECTED DEVELOPMENT!!!

ONCE HOME, THE BOYS HAPPILY TRADED IN THEIR COLLECTED LOOT FOR 'SAFE LOOT' AND THEN WENT OFF TO BED, WITH BOTH OF THEM SLEEPILY MUMBLING UNDER THEIR BREATH THAT THIS HAS BEEN 'THE BEST HALLOWEEN EVER'.
I CAN ONLY, WHOLE HEARTEDLY, CONCUR.....


So the boys and I will definitely go out 'spooking' tonite. And as always, they will trade in any and all collected loot once they get home for their own goodies


Here's this year's "loot-to-be":




Close-up of Potatey's:

And here is Salamander's:



Yes, yes, I know.. There are skittles and a couple of starbursts in Salamander's loot. Heck, trick or treating only comes once a year. And the few "oy's" in that bag of his will take him MONTHS to finish..

Happy Haunting...

Happy
Halloween


Go HERE for a good trick...

[I'll be posting pictures of tonite's haunting later...]

Oh, and if you haven't voted for Lend4Health yet (there are a few new kids who could use a "treat"), please, please do so today...

I just declined an invitation to a fancy schmancy dinner party for next week Saturday night. I've tried mixing with the particular crowd that will be attending this party many many many times before (most recently earlier this year.. things did NOT go well). I simply have nothing in common with these people, NOTHING (and I usually can find SOMETHING that will allow me to build a connection). I really don't get much time away from the boyos and, to be perfectly selfish, if I have to go through the trouble of finding care for the boys on a Saturday nite, I want to spend that time on something I am going to enjoy..

So why do I feel so d@mn guilty for having said 'Appreciate the invitation, but I am declining'?

To clarify, I have NOT turned into an anti-social recluse.. au contraire. An invitation I got to attend a Halloween party tomorrow afternoon with the boyos at a local Martial Arts school, with the potential for the 'adults' to run out for a quick dinner while the boyos run amok at said school, took me exactly 10 seconds to accept. I guess I have become 'selective' as to where and how and with whom I choose to spent my very sparse spare time...

Thursday, October 30, 2008

Once Again..

I find myself being stuck on the "well, Salamander's [xyz] symptoms are just not severe enough to warrant [investigation ABC]'" merry-go round.

SCREAM!!!!

I can't tell you how many times I've heard this line before.
And in an exactly equal amount of times, after finally finding a person with the required letters behind his/her name who WAS willing to conduct the necessary investigations, stuff was found. Stuff that would then provide another piece of the puzzle of Salamander. Stuff that would then trigger additional interventions that would have a profound impact on Salamander's health and daily functioning.

I am trying to get a local, big name hospital, to schedule a sleep study for Salamander (his pedi agreed and wrote the referral to said big name hospital). Today I was informed that my request needs additional medical review to determine if such a study is warranted.

WTF????

Salamander has been extremely tired (falling asleep in class, falling asleep on the bus, little to no energy). He is rigid as a board while he's asleep (his muscles do not relax). He has a history of sleep apnea as a little guy (TG that all went away after a complete dietary overhaul). He has a neurodevelopmental delay diagnosis and he is entering puberty (and he wouldn't be the first child with ASD to develop 'something seizure disorder related' in puberty). He has continued bed wetting issues. He has a history of severe night terrors. He has mitochondrial dysfunction and a history of "mystery" metabolic crashes. When I wake him up at night to go use the bathroom, he has no idea where he is, what he is doing, and where he's going (he's literally 'on a different planet').

Granted, there could be many, many underlying causes for all of the above. So let's start working down the list and cross off as we go, OK??

Look at this blib from said big name hospital's sleep clinic website:
"The Pediatric Sleep Disorders Program deals with all aspects of sleep medicine, including sleep apnea and nocturnal gastro-esophageal reflux and bruxism, difficulties in initiating and maintaining sleep and circadian rhythm dysfunction. As a neurology-based sleep disorders unit, there is a particular emphasis on the neurologic aspects of sleep disorders in both children and adults, with special emphasis on narcolepsy, idiopathic central nervous system hypersomnia, periodic limb movements of sleep, restless legs syndrome, sleepwalking, confusional arousals, sleep terrors, REM sleep behavior disorder and all sleep-related epilepsies. "

Ya'd think Salamander has enough going on to fit within this description somehow????

I am tired. I am tired of being told that my child is 'not severe enough.' So that makes what he's going through OK? I am NOT a neurotic over anxious mommy looking for attention, I am not looking for conducting unnecessary medical diagnostics on my child, I am not looking for more 'issues' to add to our already lengthy list of 'issues'. I do NOT make 'stinks over non-issues'.

I have identified a problem and I want for my child to get the necessary medical attention to investigate this problem further. But apparently that's too much to ask, as my child 'is not severe enough.'

[no, I am NOT giving up on this. I have never given up on anything related to Salamander. I will give them a few days to conduct their additional medical review, and then the real 'fun' will begin]

Today I am finding myself much, much, very much in need of this, this, and this.

It's been "one of those days", and I am finding myself perilously close to throwing a giant big "F#CK U" at everybody and everything that keeps throwing up stupid and inane roadblocks on my path to getting things accomplished. I am very much a 'work within the system' kinda person and I know that you get a hell of a lot more accomplished with 'playing nice in the sandbox', with 'catching people being good', and with 'making people feel like it was all their idea to begin with."

But today, I am just so NOT in the mood....

[yes, yes indeed, newsflash. I am human. Problem there is no space in my life for ME being anything less than super human.... Oh f#ck, somebody just send me the nicest email.. I am going to cry...]

Wednesday, October 29, 2008

Salamander Is Growing Up..

Fast Now.....

He has been spending more and more time with neurotypical boys as of late. And apparently the 10 - 11 year old NT boy crowd can perseverate quite a bit on a particular topic (did I just use NT and perseverate in the same sentence?? LOL). And you can all guess what that particular topic is (think glands that are starting to kick into overdrive...).
Yes, indeed.
Sex.

Salamander came home today with a few interesting expressions and interpretations of the 'facts of life'. Time to tackle THAT part of Salamander's education.
Never a dull moment around here....

[oh, you thought that the male parent would handle this??? Bwahahahahaha.. who do you think taught Salamander to pee standing up, as well as a few 'male anatomy related' personal care activities?]

MOAM...

[Mom On A Mission]

So I've got, give or take, 2.5 hours to get a slew of errands completed involving trips to 4 different stores along a 15 mile long strip of highway (that ended up being under varying degrees of construction.. Oy...). Trust me, this shopping expedition is being planned with military precision..

[and forgive me the sarcastic eye roll the next time somebody asks me if I am task oriented and can manage my time efficiently]

####

Mission Accomplished.....

Highlights of today's "Action":
"Outgunning" (hey, I'm a stick shift girl) a slickly dressed male in a shiny new BMW with a "Yeehah" license plate at a traffic light ("Yeehah" indeed .... Suckah..)

Being asked at the post office by another autie mom where I got one of my more, well uhm, "up yours", autism bumper stickers (needless to say, I gladly volunteered the necessary info - I DID edit my sticker to reflect the 1 in 67 families statistic)

Lowlight:
Having my parking brake go "SNAP" in a very sloped parking lot (ah well, parking in first gear works too..).


Off to play more "Round Robin" with the hospital to get Salamander's sleep study scheduled. I'm starting to think that robbin' Fort Knox is easier....

Sorry for not posting.. Lots going on, but no time to actually write about it!!

I am going to let my friend Kim do the talking for me today.. she very neatly sums up my issues with the current (vice)presidential candidates and their (all talk, no action; but we'll say anything to get your vote) (non)commitments to actively implement policies that will help our kids NOW..

Our kids are indeed "the misfits amongst misfits"; they don't fit neatly within the 'children with disabilities' box. Our kids need 'out of the box' thinking to develop a plethora of interventions (medical, behavioral, remedial, educational, etc) to allow them to reach their full potential. So these same kids are going to need representation in the White House, Congress, Senate, state governments, local governments capable of developing 'out of the box' policies, laws, mandates and procedures.

Haven't seen much from either contender (and their wing person) that supports that they have the capability AND the cohones to foster the much needed 'out of the box' approaches. They really need to be living our lives for a while to truly appreciate our kids' daily battles...

Tuesday, October 28, 2008

Lend4Health Voting Update..

OK, votes for the 6th day are in, and Lend4Health continues to run in 5th place.
We have 3 days of voting left. And an important thing to remember is that this contest on IdeaBlob is a 'one shot deal"; there are no 'you get another chance at it next month' redos.

If you have already voted, my sincere thanks.

If you haven't, please do... we really really really need your vote. As I've said before, not that we won't continue to do with Lend4Health what we are already doing, but just think about what we'd be able to do for the biomed community at large when we win that prize. Your voice can really make a difference here, so please go and VOTE!

Monday, October 27, 2008

Cautiously Optimistic...

Salamander has had two COMPLETELY DRY nights (no drips and drops of any kind; either in the bed, or in his clothes) in a row using THIS approach. I am cautiously optimistic.

I will continue to take the 'one night at a time' approach to this though, as this is going to be an intense week for Salamander. He is starting his transition from the Pragmatic Learning Center to the Resource Room today, AND we have started a new form of B12 over the weekend. And then of course there is all the Halloween excitement/anxiety....

Slow and Steady Wins the Race, eh?

Sunday, October 26, 2008

Cheeky, Cheeky, Cheeky ...

"Don't Let "Mommies" Drive" ... Those were the first words out of Salamander's mouth when he saw this display in our front yard.


Guess I am now the proud mom of TWO "Cheeky Monkeys" (as something like this coming from Potatey I would fully expect; this kind of stuff coming from Salamander is an absolutely delightful fairly new development...).

Saturday, October 25, 2008

A New Pet ...

Salamander and I were at Linens 'N' Things yesterday (yes, that one.. the one that's going out of business).

We had a blast just looking around (and you have to remember that, until fairly recently, Salamander and just browsing in a store did not combine).

We picked up some really nice stuff at very good discounts, including a new pet for the boys.
They are playing with "Reaper" right now and they are having a ball.

It makes my soul smile to hear lots of happy giggles...

Friday, October 24, 2008

What To Do?

I am getting the (unspoken) message/vibrations that there are parents within the same school that Salamander is attending, who have kids with similar neurodevelopmental etc challenges as Salamander is dealing with, who are resenting me/us for:
  • Having been able to obtain, over the past 5 years, the various services that Salamander has been receiving (but let's not forget that I have always done, and will continue to do, a ton of stuff for Salamander on my own time and own dime..)
  • The progress that Salamander has made, which is now allowing him to transfer from the, more behaviorally focused, Pragmatic Learning Center to the, more academically focused, Resource Room. Salamander has worked his butt off over the past 5+ years and he has every right to feel proud of his accomplishments. And yes, my heart does break for the other kids who are not progressing in quite the same way as Salamander has been progressing.

How do I deal with this? Nobody has said anything to me directly, but I am getting bits and pieces from Salamander, as well as some subliminal messages from school staff.

I think I'll "let it go" for now and assume that what I sense is a figment of an overactive imagination brought on by the fact that I am almost dead on my feet. It's been a crazy busy week (more on that when I am more coherent...)

Thursday, October 23, 2008

The Pee Alarm Thing

I wrote about here is showing PROMISE!

We just came out of our third nite using this approach, and the past two nights Salamander's bed has stayed dry. We have had some drips and drops in the jammies, but nothing major (and a heck of a lot less than before we tried this approach). So it looks like the "try to get the body/brain on a schedule" approach has merit.

To follow up on some of the prior discussions, Salamander's B6 supplementation level has not changed (and he has continued to take his usual enormous amounts of magnesium). It does like like he has started to USE his B6 supplementation more effectively. But I don't think that the bed wetting situation has much to do with B6 supplementation levels for him (but good thing to look into nonetheless...).

I truly believe that B12 has a lot to do with these issues for Salamander. I am about to increase his (and start a new delivery method - no, not shots) B12 supplementation levels again, so we'll see what happens.

In the mean time, we'll keep the "pee alarms" going. And I'll be floating my 'he is rigid as a plank during sleeping' concerns by his pedi tomorrow (but I am not expecting a whole heck of a lot of feedback; she's very nice and a great person for the routine stuff but she's way out of her league when it comes to the boys' complex of medical challenges)

Wednesday, October 22, 2008

Needed to GIve Myself A Reminder..

Some really asinine stuff took place tonite that was about to send me down a certain reactive pathway again.. a pathway that leads to nowhere, except for anger, frustration, sadness and an enormous drain on my precious emotional resources.

TG I remembered a comment left by Jeanne in response to this post. And instead of my usual %$!@!!!$#!$%$%$ reaction, I basically didn't react at all but focused instead on making sure Salamander (who was very much affected by said asinine stuff) got his emotional needs met so he could calm down.

I truly do not know how my non-reaction has (or will) affect the instigating party. And truth be told, I don't care; the instigating party's dysfunctional behaviors are not for ME to change.

Think Serenity Prayer, especially the bit about "wisdom to know the difference"...
Tonite I saw that difference. Crystal Clear.

Salamander is OK, Potatey is OK, and I'm OK. That's all that matters.

I Voted Today...

Did you?

Please hurry on over to IdeaBlob to vote for Lend4Health.

Yes, you do need to register, but it's a quick registration and all you need is a valid email address. Ideablob does NOT spam, in case you are worried about that (plus there is an unsubscribe link in every email you may get from IdeaBlob).

We need your vote; the concept behind Lend4Health is a sound one (and it's been working quite well), and we would love to get it to the next stage.

Thank you!!

Tuesday, October 21, 2008

Your Vote is Needed!!!!

BUMPING TO THE TOP.

VOTING ON IDEABLOB STARTS TOMORROW!!!!!!!


All of you that pop in here on a regular basis know how near and dear to my heart the Lend4Health concept/blog is. And as you can see from that Vote for Lend4Health button in the right hand column of my blog, there will be a contest on IdeaBlob soon that, if we can round up the votes, gives the Lend4Health idea a shot at $10,000!!!!!

My brilliant and amazing friend Tori put a video together about Lend4Health. You can watch it HERE (I would have embedded the video itself, but as this blog uses an older "template" version, I can't). Please go watch it NOW.

And then please click on the Vote for Lend4health button and pledge your vote. Pledging, and between 10/22 - 10/31 placing, your vote is FREE. And by taking this very small action, you can potentially make a HUGE difference.

Thank you!!

Am NOT Giving Up..

Thanks y'all, for your support and thoughts.. It helps to know that Salamander's struggle is not unique, and that it's OK to take a few steps back.

That being said, I have to take into consideration that Salamander is now 10.5 years old and very, very, very aware of what is appropriate and what is not. And he knows that you're supposed to stay "dry" overnite, and he has a 5.5 year old brother who is doing exactly that most of the time.

So he does NOT want to go back to the "pull up" stage (I haven't looked at the "almost like underpants" stuff that seems to have come out more recently; I will do that later today). In fact, Salamander was crying last nite that he does "not want to become a diaper baby again" (I swear, I never mentioned the diaper word; this is his own extrapolation from pull -ups).

So he and I did some brain storming and there are a few more things we are going to try- we'll have an alarm go off at every 2.5 - 3 hours during the night to see if we can get his body/brain on a "pee schedule". And the alarm will be placed AWAY from his bed, so he needs to GET UP to go shut it off. We started some initial experiments with this last nite, and we both learned a lot (as in, as soon as he gets up to turn off the alarm, that neurological feedback loop DOES kick in and he has to RUN to make it to the bathroom in time). So we'll make some tweaks tonite and will give it another go for a few nights.

Yes, it would be easier for all parties involved to just go back to the pull-ups; more sleep, less stress, less laundry. But I have to take the psychological/self confidence issues into account. Salamander is at such a critical stage in his development...

Plus, if this approach does not work, we can truly say "OK, we tried everything we can think of. It's just not working right now. Time to give it a rest and try again in a few months."

Will keep you all posted..

[off to do more laundry. While we learned a lot last nite, we did have a few more "oopsies"]

Monday, October 20, 2008

Am Giving Up..

on Salamander's night time potty training. Starting tonite he is going to go BACK into pull-ups.

This is a big, no a HUGE, setback. I really thought we had conquered this particular developmental milestone (Salamander was so excited and proud to get OUT of the pull-ups), but apparently I was mistaken. The issues are waaaay beyond "little drips and drops as he's slow to wake up". He has been SOAKING (as in dumping a completely full bladder) his bed every single night, sometimes two or three times a night, for several months now..

I just can't do it anymore, the panicky "I had an accident" screams in the night, the interrupted sleep, the pee smell that permeates everything, the enormous and never ending amounts of laundry...

I need a break from this (and I think Salamander needs a break too). I've tried everything I can think of to get things back on track. I know he's not doing it on purpose, I know he's frustrated too. I am sure the reason is physical/neurological, but I can't help but think that there is a psychological component to it too (when it comes to basic self care skills Salamander does tend to get complacent and rely too much on others to remind him of what he needs to do).

Thoughts, suggestions, ideas to explore all very welcome...

[yes, it's been a rough night, I was up for most of it ..... Off to take a nap; let's see if that helps me become human again... and help me find my positive outlook back..]

Sunday, October 19, 2008

Bumpy Day Yesterday..

Boys were definitely off.. Potatey had NO impulse control and was literally bouncing off the walls (typically not HIS issue). Salamander was extremely, extremely, extremely fatigued. And if the boys had been teenage girls, I would have said that BOTH of them were PMS-ing (lots of 'claws coming out', snarly, hissy fit interactions).

I took them to the movies yesterday afternoon (Beverly Hills Chihuahua.. fun and cute movie), and after we came out of the theater BOTH of them took off running helter skelter into a crowded and busy parking lot (and neither of them has done THAT in quite a while). So of course I ended up going full tilt boogie after them.. and stepped out of one of my shoes.. and twisted my right ankle (my ankles are my weak spots).

So now I have a right ankle that it taking on all colors of the rainbow, with a nice swelling around the ankle joint to boot. Yup, I sprained it.. once again.

NOT GOOD, as I am on my feet ALL THE TIME!!!

See, this is what happens every single time. Some things start going right for us (great IEP meeting for Salamander last week, couple promising PAYING work leads, my 2007 tax refund came in so I could pay off my credit card balances) and then I end up doing a face plant (almost literally yesterday..) in another area of my life...

I have a Bulls Eye painted on my back, and Lady (Mis?) Fortuna, that fickle little biotch, is becoming quite the shooter...
Ah well, I'm going to chalk this too up to "sh#t happens."

Hobbling off I go again....

(and yes, we continue to want your vote for Lend4Health..)

Friday, October 17, 2008

My Upcoming Respite..

Oh drat, and not drat... I may have to give up on the 'staying over on Saturday nite' thing..The boyos just got invited to a Halloween Party on that Saturday nite.. And I don't want them to miss out on a social invitation because momma decided to "check out"....


Going to attend THIS in a few weeks. Subject matter seems highly appropriate in light of some of Salamander's academic struggles, hmmm? (and I have enormous respect for Dr. O'Hara, so it'll be a nice bonus to see her speak again).

And even though the locale is only about 35 minutes from my house, I AM considering staying over in the area on Saturday nite. And that will then be my little escape/respite.. (bloody pathetic when you think about it.. the only time I get to go on an overnite [or more] trip on my own is when I'm attending an autism conference.. Sigh...Ah well, I take what I can get..)

And The Winner Is...

Commenter Number 4 - Ang Warner!!!

Drop me an email with your address, girl, and Da Suit will be on its merry way (I can't wait to see you run YOUR bit of the contest on the Autism Salutes blog..).

Thursday, October 16, 2008

IEP Meeting - Initial Thoughts..

Long (2 hours), intense, productive, cooperative, "all on the same page"..
Those are the thoughts and feelings floating around in me right now. My concerns were listened to, acknowledged, and then some incredibly positive, out of the box thinking took place.

I am pleased.

I have lots of decisions to make, thoughts to process and get on paper, and lots of good outcomes and positive feedback to share with Salamander, and lots of new things and approaches to discuss with him too.

Salamander is an enigma, and (from school's perspective) an anomaly - a spectrum kiddo who is showing such incredible progress in all those areas that are commonly perceived as challenging for ASD kiddos.
Don't get me wrong, all those social/communication/empathy/perspective taking/ transitions/need for structure/being flexible, going with the flow, etc., etc. areas are still hard for Salamander; but he is LEARNING AND APPLYING the skills he needs to become more confident and proficient in these areas.
I repeat, he is learning, applying and IMPROVING. And for so many kids with similar challenges in the exact same school and under the exact same in-school interventions that is NOT the case. The kids plateau, and that's it.

Salamander is a true example of plasticity; while it takes him a hell of a lot longer and a hell of a lot more effort to learn all those "monkey see, monkey do" skills that come so incredibly easy to most NT kids, his skills in these arenas ARE coming on line, he IS using them consistently, and becoming more and more confident as his social and communication successes are increasing (yes, all that stuff that NT kids learn in that 3 to 6 year age bracket? Salamander is learning those now. But the bottom line is that he IS).

All TEAM members (including myself) feel that when it comes to his current abilities in communication, social awareness, ability to transition, flexibility, perspective taking, self monitoring, self advocacy, self control, he has outgrown (and outpaced) his peers (and remember that for those areas, his peers are ASD kids, or kids with other neurodevelopmental challenges). It is time to change his peer group, to place him more and more in a setting where his peers are neurotypical, to give him that extra push to become fully proficient and fully able.

It is time to now put a lot more focus on academics and integration with the NT world (while continuing to focus and support the areas of weakness associated with a spectrum disorder as while he's getting good, it will never be effortless). And yes, it'll be a gradual transition.

To be blunt, it is time to get him OUT of a setting where several of his peers communicate through intense behavioral upheavals and tantrums, and get him into a setting with kids that have more self control and more awareness of the impact of their actions on others. I greatly emphatize with the "behavioral" kids, I do, and for the staff that works with these kids and for these kids' parents. I was "there" (and will continue to go "there" I am sure) for many, many years. But these behaviors are creating such an incredibly level of frustration and anxiety and even fear in Salamander, that is is impeding HIM for learning and progressing (yes, great teachable moments in tolerance and empathy, and that is exactly how I process a lot of the "bad situations with Salamander. But I HAVE to make sure that Salamander's emotional needs are taken care of too.

I am excited.

I am terrified.

Salamander is so so close in overcoming a lot of the spectrum disorder related challenges. So now it's time to help him overcome his academic challenges...

School is thrilled with his social/communications/sensory regulation progress, and more than a little surprised (as what Salamander is pulling off does not fit with their typical experience), and a tad unnerved (as none of the usual perceptions and expectations apply - he is forcing ALL OF US to rethink our believes and preconceived notions).

The secret? Does this particular school have 'the magic recipe of interventions, accommodations, and specific instruction" that would help any and all spectrum kiddos make such substantial progress? Far from it. There is no magic recipe/cook book here. It has (and is) taken a lot of hard work, a lot of negotiating, a lot of learning together, a lot of "out of the box" thinking, and yes, a TON of remedial interventions OUTSIDE of the school setting, to get to this point. And of course an extensive biomed program for the past 4+ years (the biomed piece is also the ONE intervention piece that is different between Salamander and his "similarly" neurodevelopmentally affected peers).

Persistence and Perseverance. And a lot of blood, poop, urine, sweat and tears.
And we're not there yet, we're not there YET. But we are on our way...

Off to compile my notes and thoughts of this annual IEP review meeting. And then we are looking at a complete rewrite of Salamander's IEP.
[my apologies, I am rambling. These are my rough impressions and thoughts. I may edit this post later, as I need to tie what I heard today, what I see in the social/communications arena with the stuff I shared in the prior two posts.. ]

More..

Similar observations (see yesterday's post) this morning..

Potatey had forgotten his school library book, so I had to race to our neighborhood school (both boys ride the same bus to the same school and then go their separate ways) to try and catch up. I got there just as the bus arrived.

Potatey BOUNCES of the bus, big smile on his face, grabs the book from my hand with a 'Thanks. Bye mom" and runs into the school gym to wait for the bus to HIS school.
Not a backward glance.
I hear him chatting with school mates, see him high-fiving other little boys that come rolling of other school buses...
He's comfortable, he's confident and he's enjoying himself tremendously (I realize that Potatey operates on the other extreme of the "social" scale; this one is an extrovert in every fiber of his being).

Salamander is one of the last kids of the bus.
Walking slowly, appearing slightly bewildered (sensory overload probably as it is LOUD and there are kids running helter skelter everywhere!) and *lost* (he had the "I've landed on an alien planet" look on his face, and the body language to match).
Meanders into the same school building, sees me, stops by for a quick 'body bounce', and then slowly, slowly walks into school.
Looking back over his shoulder at me at least 3 or 4 times.

There is a lot of stuff not going so good at school for Salamander right now (which will be a topic for discussion at this morning's IEP meeting), which is creating a lot of anxiety. He's already worn out and utterly exhausted BEFORE the school day even starts (and the current medical issues just compound that..).

Now I realize that both my boys are very different. Potatey is Extrovert Extraordinaire and Salamander is an introvert. And that's OK.

But what I want for Salamander is to feel good about himself and to feel confident that, whatever comes his way during the day, he'll be able to handle it (on his own terms, of course). And I've seen Salamander in plenty social/unstructured situations by now to KNOW that he can do exactly that.
But it doesn't come easy to him, and *the balance* is very fragile and easily disturbed.. (and yes, I am DREADING Middle School next year; 5th graders are tough on each other, next year will be infinitely tougher..).

And if he simply didn't care about all the social and human interactions, if he were happy floating around in his own separate little world, then I'd let it go. But I know that he DOES want to be smack dab in the middle of it all, he so wants to be able to do what comes so easily and naturally to Potatey. He WANTS to be a part of it all, not just *on the sideline looking in*....


Time to get ready for the IEP review meeting. Lots to discuss and I am going to have to triage and make sure the key 3 issues get worked out first (academics [reading, spelling, math]; stressful situations and atmosphere in the Pragmatic Learning Center [can't get into the details; what I described above is very much part of it all though]; use of candy as a reward system [so NOT!!; that was started, for whatever reason, this year as several other students have candy rewards written into their IEP; they don't want Salamander to feel left out. While I appreciate that sentiment, we're going to have to pick a different reward... Yes, it is *safe* candy, but still.. I don't want Salamander to have 2 or 3 pieces of candy every single day]).

More later...

Wednesday, October 15, 2008

Reality Check ...

Stopped by Salamander's school earlier, had to drop off materials for tomorrow's annual IEP review meeting.

It was recess time, so I had a rare opportunity to watch Salamander at play, with his class mates.

Socially, he's right smack in the middle of it all (GOOD).

But, OMG, despite the fact that Salamander has physically grown a lot, he is still tiny compared to his fellow 5th graders (maybe I am looking at this the wrong way, maybe his fellow 5th graders are all frippin' HUGE).

And Salamander is definitely having energy/muscle/mitochondrial issues again - he could not keep up with other kids running around and his stiff legged walk is back.
And watching him walk back to class when recess was over did put several more cracks in my heart. The majority of his class mates walk confidently, heads held up high. Not my Salamander.. his head hung low, shoulders were rounded (now it's very possible that he simply saw something on the ground that was utterly fascinating).

I know what Salamander's "I can do this, I believe in myself" walk looks like. And what I saw today wasn't it...(mitochondrial issues definitely make him very fatigued too).

We have traveled far and we have come far, no doubt about that. But we still have far to go ....

Baby steps, baby steps.

Houston... We Have *Main Frame* Coming On-Line...

This weekend I got Salamander an alarm clock.

Don't faint on me, please.. I know very well how old he is and that an alarm clock should have been part of the morning routine by now.
But he's not an "easy riser", and on bad days anything and everything will "set him off" (Salamander that is, NOT the alarm clock). Until now, I had little confidence that the alarm clock wouldn't get chucked THROUGH the window in a fit of rage on a bad morning..

We set the alarm clock together last night, 6.40 am (I usually start rousing my brood around 6.45 am, so I figured the extra 5 minutes would be a good transition time).

Imagine my (delighted) surprise when at 6.45 am, a fully groomed and dressed Salamander showed up in my kitchen, all ready to go.

No nagging, no endless "time to get up NOW", no tugging the blankets off his bed, no fights around taking a shower. no endless debates around what he's going to wear.

Alarm clock went off, he got up, he did his business, he got dressed, he came downstairs. Period. As simple as that.

I am PSYCHED.


Of course AFTER we went back upstairs together to get Potatey up, any and all of Salamander's executive functioning systems went straight back to *off line* again, as it was waaaay too much fun to torture a still very sleepy (and quite cranky) little brother (pay back for all those years that Potatey would be the one doing the torturing ..).
And of course little brother had to retaliate and we ended up with the usual "Cirque du Chaos".

Ah well, baby steps, baby steps.. I'll get Potatey an alarm clock too.. See if I can insert a little competition into the "getting ready in the morning" game.

Jolie-laid, Halloween (aka Fun with Da Suit)

[Bumping up one more time, originally posted on Thursday October 9th. Last chance to leave me a comment and to enter the contest.. LOL ..]

and all that....

It's been a crazy, discombobulated kinda week so far.. so be prepared for a crazy, discombobulated kinda post...


So exactly a week ago, some THING arrived in the mail, some THING so magnificently ugly that it is actually beautiful in a weird, twisted sort of way (my Froggy and Cannuck friends call this Jolie-laid... no, no, no, NOT Jolie got laid; get your mind out of the gutter; although I am not sure if La Jolie wearing this number would equal birth control ...LOL ).

I am talking about this THING. Yes, the traveling THING that became a hotly contested item within the *sisterhood*, and that, once Mrs. K *gave it up* first went here, and then ended up here...

Now I've always had a weird, twisted sort of way fascination with Halloween. Moving to the States from L"Europe back in 1993 was very hard on me at first.. despite both *continents* being part of Western *civilization* (and yes, the civilization part is very much debatable), there are HUGE differences. Differences that took me a long time to get used to, and truth be told? Some stuff I'll never ever get used to (the *Presidential Election Circus* being one example).

One *thing*, however, that I took to as a fish takes to water was Halloween. The whole weird, spooky, grown-ups having a legit reason to act exactly as crazy as they truly are gelled very well with my weird, twisted sense of humor. I've been a die-hard fan of Halloween ever since that first time back in 1993, and have been an active instigator/participant in many a wacked out Halloween party (including two preggo Halloweens).

Once the first kiddo made his entrance in to my life, I could not WAIT for that first Halloween to arrive. Imagine my disappointment when Salamander HATED Halloween pretty much on sight (and looking back, that instant aversion is now very much explainable - Sensory Overload Extraordinaire). So for the first five years of Salamander's life I really had to tone things down, to not add any fuel to the frequent freak-out situations we already were dealing with. And no, going Trick or Treating most definitely was NOT part of the plan...

Potatey on the other hand is very much a chip of the old momma block. At the ripe old age of 7.5 months, during his very first Halloween, he just could NOT get enough of it all. That particular Halloween was a very warm one, so I had Potatey outside in his Exersaucer with me, while I passed out candy to all the ghouls, goblins, princesses, dragons, Ninja Turtles, Power Rangers and what not floating around in the neighborhood. And the crazier the costumes, the more *bouncy* Potatey would get (Salamander on the other hand was inside the house on the couch with his face plastered against the window, hooting, howling, spitting, hissing and screaming at anybody that would climb up our front steps ... once again very much explainable ... the poor kiddo...I was so clueless at that time).

Now I am happy to report that, as Salamander started getting better (from a physical as well as a mental health perspective), he got much more into the whole Halloween thing (for us, it's never been about the candy.. and how I deal with the candy situation is a subject for another post). In fact, last year he was so much into it that he even wanted to go to the *Monster Mash* at his school. And OMG, we had a BLAST (and we did make quite a pair, if I say so myself; now Salamander has already announced that he wants to go to this year's *Monster Mash* as well, but I have a feeling that I'll be ditched at the door for a much younger and prettier girl.. LOL).

Potatey of course, very much stayed Potatey, and has continued to be an eager partner-in-crime in any and all things kooky and spooky.

Now what does all of this have to do with Da Suit, you ask? Patience, my dears, patience. I am getting to that.

This year, with two Halloween crazy boys, shopping for decorations has been a TON of fun. And while their tastes are definitely running toward the "juvenile, potty humor' side of things, they both have been very creative in coming up with silly and kooky gags for around the house.

Now remember my comment on Jeanne's blog that Da Suit would make one scary *Halloween* decoration? The boys agreed 100%. In fact they thought it was so scary that they begged me to never ever even consider ever buying (let alone putting on) something like it, as they feared that what you are about to see would happen to me (and this little gal is sitting in my favorite spot too).

(now note the horrified and stupefied look on her face.. instant and sudden death comes to mind..).
And as to this number and it's effectiveness as birth control, look what happened to this gal's poor fella....PETRAFIED!!!!

Oh, and Kim, DO note the wooden shoes... as well as the 'bound and gagged' significant other... Yes, yes, I remember the tulips request too, so here you go...

Happy now???


So now that I’ve fulfilled my end of the deal with the contest, it’s time to pass this little number on. Do you have a great idea for the KStag-Ugly Suit? If so, here are the original contest rules as per Kim Stagliano:

1) If you enter, you must agree to run a contest for this suit on your own blog within a week of receiving the suit in the mail. This gives you ample time to ogle its shiteousness before sending it along to the next soon-to-be disgusted recipient. You can photograph the suit on your cat, your Harley, a tombstone - it’s your call. Run the photo on your blog. Be creative. Tell your blog buddies where the contest began - and send this Lycra loser along to whoever wins your contest.
2) Leave a comment and an email address so I can reach you. Or email me at petra.c.smit@gmail.com, if you’d rather not leave your email address in the comments. But still leave a comment, OK?

All right - let’s see where this beautie is going to travel to next!!!

Tuesday, October 14, 2008

Serenity Prayer...

"God, grant us the serenity to accept the things we cannot change,
courage to change the things we can,
and wisdom to know the difference."



Thanks Jeanne (read the comments..).

Monday, October 13, 2008

I Lost It..

So I totally *blew up* at my kids about 30 minutes ago.. over some really stupid sh#t.. and I wasn't even mad at THEM.... what they said and did was simply the proverbial drop....(and no worries, boys and I have already talked through what happened and of course I apologized to them, and explained that I am a "cranky pants" today and should put myself "in time out").

I feel terrible for taking my anger and frustration out on them, while I should have directed it at the person I am really TRULY INCREDIBLY pissed at...Not that giving that person a piece of my mind would ever make a difference; that person has perfected the art of floating through life in a bubble of "none of this concerns me, none of this affects me, none of this is going to keep me from doing what I want to do when I want to do it".

How in the blazes can you not be affected by your beautiful 10.5 year old son:

  • Struggling academically and knowing that it has nothing to do with his intellectual capabilities, but everything to do with LDs and teaching methods that just don't fit so well with said child's neurology..
  • Needing serious academic remediation, which will make said child's regular day even longer and more intense than it already is (and Salamander is TIRED; when will the poor guy get a chance to just be a kid?)..
  • Having serious bowel and bladder issues again because of continued gut dysbiosis issues..
  • Struggling with a whole host of other challenges?

And how can you not be affected by how all of this is affecting your beautiful 5.5 year old?

How in the world can you just mentally and emotionally "shut yourself off" from all that the boys are dealing with (and just dump all the issues on me to figure out), and instead go off, either shopping and spend a sh#tload of money on stuff you don't need because "YOU just felt like buying it", or spending hours on the computer playing Solitaire???

What about what these two beautiful boys deserve????

Sunday, October 12, 2008

And more of the same today... More laundry, LOTS more poop.

Note to self: Do not EVER leave the house without extra clothes and wipes (and yes, my kids ARE 10.5 years and 5.5 years old. This IS the world of bowel issues for ya)

My motto? Sh#t happens...

Saturday, October 11, 2008

Woohoohoohoohoo!!!!

CORRECTION: Salamander is now a Bowman.. he skipped OVER the Junior Bowman rank (and as I was very casually informed just now: "No big deal mom."). He will now start working towards Junior Marksman.
Hey JH, if you ever end up here and read this, is this how your middle son got started in his archery endeavours???

Today, during his 6th archery lesson, Salamander achieved his next rank. He is now a Junior Bowman!!! And I swear he got back to the house 2 feet taller!!!!!

He loves, loves, LOVES archery. And it is doing miracles for his hand-eye/visual motor skills...

Off to make a big "to do".

Friday, October 10, 2008

A Rant..

You wanna know how many loads of peed in and pooped in laundry I've done in the past 3 days?
No?
Too bad, as I'm gonna tell you anyway.

Twelve full loads... TWELVE. Washing machine and dryer have been running pretty much 24 hours per day.

Yup, potty training issues have returned with a vengeance...So apparently here's my trade off. I put Salamander back on the gut bug protocol, and we have little to no potty issues, but we DO have a big bloated belly. I take Salamander OFF the gut bug protocol, and we have NO bloated belly and he's been in a great, great mood all week, BUT we have potty issues... Tough trade off. Tough trade off..

And then there is a little tail to this.. I am rushing out of the house tonite to make a mad dash to the pharmacy to pick up prescriptions and more laundry detergent.. And as I am driving, on the radio comes Cyndi Lauper's "Girls just wanna have fun fun". And all I can think is "Sh#t, I remember the time when a mad dash to the pharmacy meant an entirely different kind of *fun fun* ".. So what happened, and how the H E L L did I land here (rhetorical question..)???

So on the way back from the pharmacy, I made another quick stop and got myself a nice bottle of Chardonnay. I'll pour myself a glass, or two, after the boys are in bed, and I think I still have a few *girlie books* somewhere.. And that will be all the *fun, fun* I'm gonna get tonite.....

Sigh..

Tuesday, October 07, 2008

Yes, yes.. I know you are all waiting for Da Suit post... Working on it, working on it...

Past couple of days have been rough, and today is going to be crazy between work assignments and medical appointments. Please be patient with me for a bit longer...

Monday, October 06, 2008

OMG

Our local High School has just been closed for the remainder of the day because of a potential bomb threat....

I fell completely apart listening to town wide announcement coming in over my voice mail. THIS is my worst nightmare..

My kids are safe in their schools, their schools are NOT affected by the High School closure...

I, however, will not have a peaceful moment until my kids are safe and sound back with me...

On Hope, Lost and Found..

I wear two silver rings on the pinky finger of my left hand; one says "Faith", the other says "Hope". I have only had these rings for a short while, but being able to look down on my hand and seeing these words jump out at me has carried me through some bad moments.

This Saturday, I lost 'Hope". And not just the ring....

Salamander has been having a rough time with the whole bloated belly situation, and I ran out of ideas, things to try to make it better for him. The only thing left to try was to stop the majority of the natural agents he was taking to address the gut dysbiosis situation; the theory here being that the amount of die-off and detox these supplements are triggering are just too much for his poor inflamed bowels to handle.

I don't like to stop an intervention once I've started it. In the past, stopping (or temporary suspending) never worked out well for Salamander. It's like "once you hit the Rapids, you can't turn back.. all you can do is keep paddling."

But this bloating thing was really starting to worry me....

So Saturday nite, I stopped all *gut bug hunt* supplements, except for three basic ones that he has been taking for years. He also only took the basic ones yesterday.


This morning his belly was markedly flatter. He also wasn't stuffing his food like he had been doing over the past week or so (for Salamander, stuffing food can be an attempt to address gut pain). And I got an email that my ring has been found.


Hope.
Lost, and Found...

[I'll fix the pic when I have a moment..]

Sunday, October 05, 2008

Warriors...

My original post read that I was going to be "MIA until tomorrow... Too much going on, too much to figure out, too much to plan for...

(on a related and unrelated note, boys and I will be working on Halloween decorations this afternoon.... and yes, the activities WILL involve a certain swim suit....).

Oh, do pop over to CharlieinWonderland (Jeanne's blog) for the Cinco de Linco/Birthday bash Lend4Health fund raiser..
.
"

But then I popped over to AoA, and found this from that same Jeanne.
Jeanne, you ROCK!! And I am proud to be your blogger friend and I am proud to be your fellow Warrior Mom. And my boys are proud to call Charlie their Brother-In-Arms... (I just discovered the longer, much more RAW version of what was posted on AoA on Jeanne's site. Warning, it's not for the faint of heart. I'll be honest, I haven't been able to make it through the whole piece yet.. .hits too close to home... Know though that at the end of that piece, at the end of Charlie's journey so far, is HOPE)

To all those amazing warrior moms and dads out there. Keep fighting to get your children out of that prison that they are trapped in. And while not all kids can articulate as well as Charlie, or my Salamander, what is going on for them and how things used to be BEFORE they received the treatments they so desperately needed, don't ever loose sight of the fact that our kids fight as hard, no HARDER, to break out of their prisons as we all fight to pull them out.

And remember this by Sir Winston Churchill on the bad days, when you all think you cannot go on for one more hour, let alone one more day; you are in the fight of your life: "You ask, what is our aim? I can answer in one word. It is victory. Victory at all costs - Victory in spite of all terrors - Victory, however long and hard the road may be, for without victory there is no survival."

And to all of those that dismiss our stories that somehow something happened to our babies, and who say that we are all a bunch of anti-vaccine nazis and that we should *trust the doctors and the real scientists, and not worry so much but to just love our kids*, read this exchange of parent stories. We all DID trust the doctors and scientists, we all WERE good and responsible citizens and did what the doctors told us... and watched our kids deteriorate before our very eyes and nobody seem(ed)(s) to give a rodent's behind... So forgive us for never EVER trusting those same doctors (and the poorly designed inconclusive studies they rely on) or their ill conceived advice again.

And to the next person who dares to imply that I don't love my kids because of my audacity to treat their various challenges using alternative approaches, F#CK you. Come life in my house for a while before condemning me or what I do, sight unseen.

I fully accept that there are kids that improve significantly *on their own* (and implied here is, *without the voodoo interventions* ...), and if you are a parent of one of those kids, count your lucky stars.

However, I know in every fiber of my soul that what you are about to see would not have happened *on its own*, but is a direct result of all the various interventions, treatments and therapies Salamander has received and will continue to receive (I vividly remember the various ways in Salamander USED to interact with Potatey, and none of those ways ever involved a gentle or loving touch, let alone interactive play and belly laughter).





And Salamander most certainly would not have been able to pose for these ....

OMG, I see myself looking back at me....

And here is that same boy, 4.5 years ago and "freshly diagnosed"....



One of these days I'll write the whole story of where we were 4.5 years and what it has taken so far to help him break out of his prison...

Saturday, October 04, 2008

What She Said....

Thanks, Gina.

(the whole *popularity contest* voting thing between Jenny McCarthy and Amanda Peet is just too ridiculous for words.. apples and oranges people, apples and oranges...)

Thursday, October 02, 2008

(F)Ugly...

I am now the proud (but hopefully temporary) owner of the (f)Ugly Traveling Bathing Suit. It is so ugly that it is beautiful (Joli-laid, the French would say; magnificently ugly).

Stay tuned.....(Salamander has an Open House at his school tonite.. so I'm in a bit of a rush, otherwise I'd be posting more..)

I Know..

Too quiet from my side...

Not that I don't have anything to write about..

I have TONS...

Problem is focus, my thoughts are jumping all over the place.

So much going on.. in the world at large, in the autism world, in my own little world..

All connected and not connected...

I have a rush work assignment to get done today (it's another toughie, and the time pressure is not helping.. but as I can't afford to turn any work down in the current economic situation, I gotta suck it up and deal), so that needs to be my primary focus.

And then there is stuff around Salamander that I need to make headway on (the latest round of educational test results is only part of that; physically something continues to be *off* as well; he kept it together over the weekend while the *visitors* were here, but now he's falling apart. At least the facial and belly bloating are almost gone, but now he's deadly pale and oh so tired.. It's always something..).

And Potatey needs me too...

So much to tackle, so little time...

Time to get back on the work assignment and get that done by noon time. Then I'll have a few braincells to spare again and can move on to the next thing...