question: do you have questions?

alright, this is a quickie:

i'm doing up a new "autism card" for Xander.  since we know so much more now that we did even 6 months ago, we are due for an update.  we feel like we've really pin-pointed some things and can be more helpful in giving people the tools to help him.

so basically the card will have some information about what autism is for Xander, and some tools that can help you navigate him successfully.  

i've been putting it together and it popped into my head that maybe there are some obvious questions i am missing that i could answer on the card.  so i am putting it out to there: are there any questions that would be helpful to answer and add to Xanders "autism card"?

i would pleased as punch if there were any i could answer.  i would be just as pleased if i didn't have any, because maybe that means i'm being informative enough.  

hahaha, i just realized: my kid actually does come with a manual...

we have a road!

so i'm probably going to start posting more about our house progress.  this is partially because i would like to document it in some way.  

but mostly i'm just excited and want to show off!

here is the latest development!  a road!  i know it doesn't seem like much, but i think it is a pretty big deal!

the road

have you ever seen a cuter girl?  i didn't think so!

giving up? or growing up?

i used to think that if i could just get Xander to bend to my will as "the parent" he would eventually figure out that i'm the boss and he has to do what i say.  that he would stop whining, quit being defiant and just start being more flexible.  

indeed, we are most likely all products of this type of parenting style.  it's not a bad thing.  this was my philosophy: my kids should to adapt to my life, not the other way around.  

but what happens if your kid lacks basic skills in adaptability and flexibility?

knowing what i know now, i have no doubt in my mind that Xander would be doing well if he could.  

this is important.  kids do well, if they can.  

if Xander had the skills and tools, don't you think any he would use them so he could stop being so miserable?  and Xander is lacking many skills allowing him to do well.  and that is the first step.  recognizing and appreciating the fact that your kid is lacking and has not developed certain skills.  

if you can't appreciate and accept that fact, then things can never progress.  you will be stuck.  and misery will persist on all sides.  

so, am i giving up?  or am i just growing up?

is it giving up to let your kid do things "his way" most of the time?

have i given up by becoming more flexible and bending to his will instead of mine?

is it giving up to be constantly problem solving with your kid when all you want to say is "you're fine, you'll get over it!"

Xander will always require a different parenting style and concessions will have to be made.  so why don't YOU get over it?

he is a black and white kid living in a grey world.  can you fathom the idea of seeing only black and white, but having grey shoved in your face at every moment of every day?

you can't expect a kid to stop drowning without teaching them first how to swim.  telling a kid to "stop drowning, or else!" won't keep their head above water for long.  

Xander has spent most of his life just trying to survive and keep his head above water.  and we've all been the idiots at the side of the pool yelling "quit drowning, or else!"

interesting perspective.

so, am i giving up?  yes.  but only my pride.  

which leads me to believe that maybe i am growing up after all.  

blogosphere doldrums

i am in blogosphere doldrums.

Xander is experiencing his own doldrums.

and i, in turn, am also in the doldrums.

(don't know what the doldrums are?  look it up.  thanks mom, for teaching us kids about the doldrums so i can be more interesting in my conversation.  maps in the kitchen people, that's all i'm sayin')

i guess i should actually re-phrase.  we are just coming out of the doldrums.  the wind has picked up and we are all on our way again.  but february thru april were straight up doldrums.

Xander had a tough winter.  we came to a point where things just weren't working like they used to.  old strategies that used to do the trick were no longer getting us by.  as soon as things started to stop working, it didn't take long before we were sliding pretty fast down to the bottom.  and we hit the bottom pretty hard.

i wouldn't say things were going backwards, per se.  it's just best described as things not working anymore.  i don't know why it took us so long to figure out what was going on.  i guess it's true when they say sometimes you have to hit the bottom before you start climbing again.

the best way to describe it: frustration.  for Xander.  for his family.  and probably for his teachers too.

but i think i've figured something out.  my inflexibility directly effected his inflexibility.  talk about showdown of the century (only it was every day).  i need to change before he can change.  i can change easier than he can.  it's still hard though!  but i will be able to do it easier than Xander.

so we are on a new path.  and things are working again.

but it hasn't been all bad (far from it in fact).  Xander and Judy still continue to amaze me.  Xander will often surprise me with an insightful comment, and Judy is basically a crack up.  we are truly blessed.

the most exciting thing is that we are building a house in Mountain View.  we've got some land, and things are happening!  we are so happy to be putting our roots down in Mountain View.  there is no where else i'd rather be.  (okay, well maybe hawaii would be nice)

Our land!  Digging a well!

one last thing.

i've had an image in my mind for the last few weeks.  a memory.  some of my siblings may remember this.

many of you know my mom had cancer, and thus through her treatments lost her hair.  so during that time she wore a wig.  i remember sitting out in the car one sunday morning, waiting for my mom to come drive us to church.  we were all waiting.  it was a VERY windy day.  i remember as she came out, hands full carrying her church bag, the wind was gusting.  and every time the wind would gust we would all go "whooah..... whoooooaaah...." thinking at any moment the wig would be blown right off her head and never be seen again.  but she made it to the car without losing her hair.  we all exhaled in relief.  i'm convinced that out of sheer determination, my mom willed that wig to stay on her head.

and to contrast that image, almost the exact same setting.  waiting for mom to drive us to church and her emerging from the house without her wig, it being the first time going out without it.

thanks mom, for teaching me.  even when there was no lesson.  i love you.  

Happy One Year!

Xander has been going to pre-school for a year!  hooray!

at one of our first meetings at the school, they asked me what i wanted my goals to be.  i told them, something to the effect of, "i want to be able to ask Xander how his day was, and have him be able to respond."

prior to his pre-school days most questions were responded to with a yell/scream, or a lengthy string of garbled-up-gook that was very hard to understand (if not impossible).  and if he did have anything coherent to say, it was usually "scripted" phrases.

now, a year later, he still may yell/scream at times but we are understanding 90% of what he says and he will generally respond to questions when asked.  (i can even ask him "what did you do today" and get an excellent response!)

two days ago, i asked him to tell me a story.  and this is what we got:

maybe you won't think this is as big a deal as i do, but to me this is a huge success.  

independent thought.  creative thinking.  100% unscripted.  

thanks to all of Xander's "ladies" who work so hard for him!  you know who you are!

am i boring you?

you must think my life is pretty boring around here, since i haven't posted in over a month.

well, life goes on even if i don't post every tid-bit to the interwebs.  

Christmas came and went.  and so did the New Year.  there was no stopping them.  shocker.

we all got sick a few days before Christmas, which is always a treat.  fortunately for Xander, Judy, and Rob they were all on the mend by boxing day.  UNfortunately for me i was sick for 2 weeks.  i had such a bad head cold that one night i took too much cold medicine and thought i was going to die.  that stuff was crazy.  then i couldn't smell/taste/or hear anything because my body did a pretty nifty job of plugging up everything from my shoulders up.  good times.

but really, we had an excellent holiday.  it was so nice to see new babies and play games and eat good food (well, i'm only assuming on that one since i couldn't taste anything).  Xander is getting really good with crowds and parties, so the holiday's were especially enjoyable.  

The Van Orman grandkids (minus Scarlett, who was sleeping)

Amy and Xander.  good play-mates

Scarlett.  get a load of those cheeks!

ooh Duncan

so far we've been having a pretty good 2012.  

Xander has had a fairly rough start to the new year (he's been sick a lot) but he handle's it pretty well.  school has been going really well for him.  all our "goals" we set for him at the beginning of the school year with his teachers have become obsolete because he's more or less accomplished all of them.  go Xander!  now we'll meet in a couple weeks again to set new ones.  

Judy is just growing up like crazy.  some of her favorite things are in her "princess" box, loaded with bead necklaces, a purse, and a princess crown (from Grandma B).  she loves sunglasses, and shoes and hats (which she call's "yee-haw"s).  she is talking more and more, and thinks she calls the shots.  she is still pretty much fearless when it comes to climbing.  she also knows where all the candy is, and often pushes a chair over to the counter so she can climb up and get in the secret cupboard.  it is also where we keep the medicine, so we may need to re-think where we are stashing our goods.  

a big girl already

through Xander's eyes

taken by Xander over the last few months.

naturally, i think we may have the next Ansel Adams on our hands.

WIN!!

and by win, i mean HUGE WIN!

Xander got a haircut last week with NO tears!  this may not seem like a big deal for some kids, but for Xander this is a big deal.

usually we have to negotiate for about 3 weeks leading up to the hair cutting event.  there is no amount of bribery or coercion that can persuade him.

so i set it up so he would have to get a haircut before Christmas.  that was the deadline.

ME: we're going to have a haircut BEFORE Christmas, okay?

XANDER: um, but i won't have time before Christmas.

sometimes he is too smart for his own good.  so in the meantime i made him watch Rob get a haircut.

then 2 days later i mentioned the haircut again and BAM, he was ready to go.  like, RIGHT NOW ready. like, take off my shirt, get the stool and the clippers, we gotta do this now, kind of ready.  there was also the condition that he got a chocolate egg (kinder surprise), chocolate beans (reese's pieces), AND ice cream.  i was willing to do anything.

it was flawless.  no tears, no screaming.  i was stunned.

WIN!!

sometimes you just have to stop reading

as per usual, i've been reading more and more about autism and different strategies used to help with... well anything!  the latest has been Temple Grandin's "The Way I See It".  all in all i think it is an excellent resource.  but i only got about halfway through and decided to put it down.

i found myself becoming really hard on myself and starting to doubt everything i was doing.  not only that, i was becoming really worried about Xander and his future.  it was starting to feel like everything was just coming down and a future where Xander could enjoy friends or a career, etc., was looking bleak.    even though i know now that that is a totally crazy way to think.

so i decided to stop reading.

i know he will have a hard time socially.  it tugs at my heart when i see him trying to talk to other kids and not see anything in his face or eyes beyond a script he reciting.  but he tries so hard and wants to do it, and that will be all the difference for him.  it is hard to watch him not understand simple social nuances that most other pre-schoolers understand.

but at the very core of Xander is a sweet, gentle and loving little boy who is truly trying his hardest to cope with his autism.

it is nice to receive a vote of confidence, but i am not a perfect mom.  i am harder on Xander than maybe i need to be and have high expectations, so there are days that can be really terrible.  there are some things that i don't tolerate at home.... PERIOD.  so some days it is a battle of the wills from the moment we get out of bed.  Xander may be totally inflexible at times, but so am i.  we use the phrase "bendy brain" to let Xander know he needs to be more flexible.  so now Xander is starting to tell me to have a "bendy brain" when i'm not allowing him to do something.  touché.

now it is Xander's turn to type something.  we are going to "take turns like team work" at Xander's request.

sqweeytxandersvccxczszswswesssssszmomvcfderfdaddynbvcxzlkjjhggffddssaapoiuytrewq

good teamwork.  that was all Xander.

teaching in a way Xander understands

its been really hard to try and get Xander interested in drawing/coloring/writing.  he doesn't know how to hold the pencil right and has a really hard time with the fine motor skills involved.  Rob and i decided LONG ago that our children would learn how to write well and will never be allowed to hand in sloppy work.  funny how those kind of statement seem to blow up in your face.

Xander will have a harder time than other kids in this department.  even Judy can pick up a pencil and hold it right.  for crying out loud!!  so we know that we will have to work on this a lot with Xander.  he will hate it, but it is a point we aren't willing to move (much) on.

the problem has been that:

1.  he doesn't know how to hold a pencil right.  it doesn't seem to make sense to him

2.  he is such a perfectionist that it literally will panic him if what he does isn't perfectly lined up or in the lines, etc.  to have the across line on his "H" go beyond the uprights is enough to send him over the edge.

i found that the main issue was that he didn't know how to pick up the pencil so it would rest in his hand the right way.  he would actually pick up the pencil a different way almost every time.  nothing was making any sense to him.

so one morning we were working on it and i was trying to get him to pick up the pencil with his thumb and first finger and "put it to sleep" in his hand.  but telling him to "pick it up with your thumb and first finger" or even showing him hand-on-hand wasn't working.

and then it came to me!  "T fingers"!!  at pre-school they do visual phonics, which is doing a hand gesture that corresponds with a letter and the sound it makes.  Xander eats that stuff up and is really good at remembering them.  then while sitting there i realized that with the letter "T" the hand gesture is flicking with your first finger off your thumb (basically like flicking a booger...hahaha).

so i asked Xander to show me the letter "T" which he did immediately.  then i told him that those where his "T fingers".  then i asked him to pick up the pencil with his "T fingers", and he did it!  it finally was able to make sense to him!  sometimes you just have to work at finding out what makes sense to him, and that was something that was totally clear and easy for him to grasp.  talk about HUGE WIN!!

i took a video of it to show his teachers at school so they could use the same strategy.  here is the video: