Triple Sponge Bob

I realized, when I posted a comment over at the amazing SPD Blogger Network that life had really wrenched me away from blogging, so I'll do a quick update:

• ILS (TLS) WORKS
• Taeksondo is definitely a double-edged sword
• schools don't follow IEP's like you'd think they ought to
• week day life without his big sister has been tragic and hard but we are managing
• weekends with his big sister are bittersweet but good
• PIANO IS THE BEST THING EVER
• Choir is really really really difficult to manage when you have to sit still for an HOUR with a bunch of unruly, poorly managed children, but it REALLY helps if your mom is the assistant director
• We found a church that is almost an acceptable sensory enviroment

Lastly, and to tie this little blurbblog post together:

WALMART HAS ENTIRELY TOO MANY SPONGEBOB THINGS.  THE INTERNET HAS WAY TOO MANY SPONGEBOB THINGS TOO. 

No, seriously.  I didn't even like Spongebob for the first ten years of its existence.  Now, I've become the Spongemom.

At the Taekwondo Halloween Party

The Things We Do for Love

HRH da Creature's Transport Device

In order to drive HRH da Creature all over the place this summer for various forms of therapy and testing, we could go no further without reliable, safe transport.  Being something of a Dave Ramsay girl by nature, da Mama was just crushed that we had to take out a *gasp* car loan, but there weren't a lot of other options, so here we are:  we now have safe, reliable transport, and Farnsworth is his name. 

It has been a God send, this new power I have to drive and not constantly fear that I will be sitting on the side of the road for three hours waiting on AAA to come and rescue us.  You can only imagine what it is like with an SPD child to have plans/routines profoundly disrupted while we all wait without any real idea how long on a tow truck to then be transported who knows where while Mommy spends a lot of time on the phone with grandpa and eventually we are given a ride to a rental car place, and well, you know the drill.... wait on repairs, find out repairs broke more things, empty your emergency fund over and over again while you regret ever owning a car, wondering at which point the cost/benefit ratio on ownership of the older car has PERMANENTLY exceeded its usefulness, etc...  ugh.

So, it has been an amazing blessing to just drive, da Creature happily in his new space in the back of Farnsworth, reading Pokemon guides, and watching his portable DVD player, or playing Pokemon with da Sister, who doesn't get as motion sick in this vehicle, just drive seven hours to and from OT, seven hours round trip to neurologist app'ts, just drive without fear or anxiety, fairly confident that my decision to go ahead and dive in the debt pool for a Honda was a worthy use of our resources.  It still irks me, though, when I write a check every month, but I'm so grateful it's getting less irksome.

The benefits of the better, higher quality OT and all the work we do each day are piling on.  He is calmer, better able to focus, better able to assimilate information and apply it in novel ways to new situations; he is less annoying (which apparently was always one of the proposed benefits, but since I didn't really care, I didn't notice until it was pointed out to me); he is thinner, which is strange but wonderful.  He knows it too, knows things are better.



Love is like this, I guess.  You move heaven and earth, you have faith, you cling to each other, and you risk more than you're comfortable with on the hope that good things come to those who work and wait and work some more.   ONWARD little creature, you are loved splendiferously.  :)

OT Exercises, LEVEL THREE!!!

da Creature is so happy, he has made it to LEVEL THREE.

So, he is doing his core exercises twice a day still, and we have added the following things:

SPIN REMEMBER GO

 

Spin Remember GO!

For this one, I call a number sequence (the little bean bags have the numbers 1-12 on them) and he spins for 20 seconds, then has to pick up the sequence in order one at a time and put the bean bag in the bucket.  Right now, the sequences are three numbers long, but he is getting better FAST, so we'll go to five number sequences soon.  You spin clockwise, then the second one is counterclockwise, and you just make sure you end on clockwise.  Again...see disclaimer:

NOTE:  all the exercises we are using were custom-chosen by da Creature's OT, and are specific to HIS needs as determined by lengthy (and *cough* expensive) evaluations.  This blog is about DIS CREATURE'S journey through the spectrum of fun, and not intended to address the needs of ANY OTHER CREATURES.  Got it?  MY Creature's stuff.  You can always tell your OT that you like the ideas and ask, but no theivin' and then gripin', OKAY?  Thanks, the mgmt.

We also added a few more ball games on BOSU ball... AND the target contraption arrived!!!

Catch w/ 2 hands, throw w/ 1

(It was so poorly engineered and not functional I had to go through and make rigid supports to fully expand it and get it to work, but hey, what do you expect from the internet?)

Paddle Thwap

The next paddle on bosu ball exercise is "Paddle Thwap".  He uses the non-sticky side of the paddle to hit balls back into the sofa.  This is how this goes... "You hit me" (da Sister)  "giggle giggle giggle" (da Creature) "Aim for the sofa" (da Sister again, patient as ever) "OUCH!" (not nearly as patient)  *giggle giggle giggle*  His aim is definitely improving.  (da Mama smiles secretly to herself)

No, really, the grey one IS the smallest, right?

The joys of internet roulette also brought us an interesting addition to our family of balance balls.  The packing slip says 53 cm.  The green one is 65 cm.  The grey one is 53 cm?  Seriously?  Yeah, right.  *eyeroll*.  I didn't return it, because what would have been the point?  So, now we have a giant ball.

Da Creature go SPIN! OT can be fun, too! :) :) :)

We are preparing to do our own spin work here at home, and I looked long and hard at available options, like the platform swing I could buy and attach to rafters in my living room, creating what appeared to me to be the largest giant dangerous object in my home ever, or, I could buy a tiny little poorly engineered board on a 12 inch lazy susan which was noisy and hard to work, OR----------

I could let the engineer make what he thought we ought to be doing, and apparently, it's ALL about the bearings.  This thing is AMAZING.  It's gonna double as a launch pad it runs so silently and effortlessly.  Now, warnings to the motion sick prone among my readers...this video might spin you queasy, but it starts with slow and then the last 30 seconds show it at FAST.  It moves like you wouldn't believe.

Da Creature and da Mama are both looking forward to getting his spin work started when we learn how tomorrow.   Once the headphones arrive, we're in BUSINESS.  So...here's my genius engineer's take on...Let's Go Round and Round:

OT Exercises, "Level TWO"

Da Creature was so proud this week.  As he put it..."I made it to Level TWO Mommy!"  This means that he survived the first awful week of core exercises and overcoming the initial refusal of every part of his body to balance or do anything it was told to do, and got MORE things to do for the second week on top of the original hard things.  Life's a video game for da Creature, that's for sure.

So, ride along with us for a bit, as I share what we are doing.  Next week we'll have the newly engineered and super-improved spin table (having a mechanical engineer for a grandpa is a wonderful blessing for da Creature) and more of the therapy room equipment will be delivered by then, too, so you can see Level THREE, but for now...here's his very proud Level Two! :)

NOTE:  all the exercises we are using were custom-chosen by da Creature's OT, and are specific to HIS needs as determined by lengthy (and *cough* expensive) evaluations.  This blog is about DIS CREATURE'S journey through the spectrum of fun, and not intended to address the needs of ANY OTHER CREATURES.  Got it?  MY Creature's stuff.  You can always tell your OT that you like the ideas and ask, but no theivin' and then gripin', OKAY?  Thanks, the mgmt.

Bicycle

 Bicycle...Da Creature's very lanky and uncoordinated but devoted sister is helping him learn his exercises...she's the giant fun house mirror to his tiny feet.  They do the bicycle for one minute.  We had to put dots on the tops of his knees so he could understand what "keep you knees together and pointed at the ceiling" meant.  He's all floppy in this pic, so it's still a real struggle for him. 

Elevator

Next is the elevator.  Legs up, legs down, ten reps.  Not a hard one, just have to stay on those elbows!

Pat-a-Foot

Pat-a-foot involves ten reps of each foot tapping the opposite foot on the giant funhouse mirror sister.  He's slacking in this picture, but admittedly, it was very distracting to have Mommy taking pictures.

Tick Tock

Tick Tock is very hard for da Sister.  Da Creature is beasting it out though.  He likes it especially when she's groaning and moaning at him because for some crazy reason he's GOOD at this one.  You go side to side and you can't flop your feet on the ground, and you have to keep them straight.  Pretty standard stuff, really, but still mysterious why this one is easy for him.  I'll take it though!

Wiggle In, Wiggle Out, AKA "the Butt Scoot Boogie"

After a brief respite of schooching forward and back they head back to the floor for one more ab exercise, and then, it's BALL TIME!!!!!  (These are really really hard for da Creature, but he's working hard and they are getting better every day)

Twist and Pat

Twist and Pat.  You thump your legs, thump left side with both hands, thump legs, thump right side, and do it for ten repetitions of the whole pattern.  The difficulty comes in that you also need to bounce as you're doing it.  This seems inanely simple to me, but I quickly discovered da Creature no bounce right.  He can't work that out.  It's very very hard for him.  So, he's having fun now trying to get all those parts moving at once.  Soon, I'm sure I'll have to hide the balls!

Out and Back

Out and back.  He's good at this one now.  The first week was hard.  You sit on the ball, then roll out, using your legs, then you roll back up to sitting.  This is now his favorite exercise.  :)

Crossover Claip

Crossover clap:  nightmare thing to teach.  Roll forward, legs straight and together, then opposite hands pick up from floor and clap the funhouse mirror hands.  Balance is so very very hard.  At first, I had to hold his legs.  At least now he can stay sort of on the ball.  This set of ten (in, then out) can take fifteen minutes with all the resets.  I'm hoping his rate of improvement will continue and this will get easier.

Catch w/ 2 hands, throw w/1

Catch with two hands; throw with one.   This would be difficult enough for da Creature on dry land, but on the BOSU ball, it's so very very hard.  He loves it, and there is a nifty thing on its way to throw balls into (a mesh tent movie themed ball goal that's super awesome) but for now, we're throwing the balls in a plastic bucket, which proves that one can do the same task with less nifty stuff.  My goal, though, is to duplicate the stuff as much as possible so that his brain only has to process the task, not the stuff every time.  Stuff takes a lot of processing space that the tasks need.

Paddle Pass on Mats

Paddle Pass on mats involves standing on the ever-shifting mats, balancing, and catching the ball with the suction-cup paddle.  It's a LOT harder at home, because we don't have mats yet, and are using the sofa cushions.  It's hard at OT, too, because any task that involves his gross motor lack of skills with balance is really difficult for da Creature, but it's still fun, because every so often, you hit Mommy in the face with the ball, and she has to smile.  *wry smile*

Bean Bucket Search

The last thing we do before letting him play with the therapy equipment is the Bean Bucket search.  If you'll look at his hands, you can see the avoidance of the feeling of the beans.  Not even the promise of keeping the quarters makes him particularly happy about this exercise.  He just doesn't want to stick his hand in there, and he gets VERY VERY VERY frustrated that he cannot tell the difference between the beans and the things he must find...marbles, bells, dice, paper clips, quarters, erasers, pocket things.  But then he's done and can play so the anger and meltdown pass quickly.

I cannot imagine how we will add the spin work with all of this, but I know we will.  Next week, I'll write another post about how that goes.  I know this is helping, but I want that music montage where we did the work and the progress is so wonderful and good that the day to day work is a distant memory, a fugue of triumphal moments, not a daily drudge.  Meanwhile, let's drudge it out some more for hope and light and life.  Later's from the therapy room.

He likes the BOSU ball a LOT

SPD, Sensory Integration, the LONG HAUL to competent Therapy and Parental Guilt

Da Creature has a GOOD OT now.  Of course, that means driving three & a half hours each way to get to her and doing all of his daily work at home, but I am so deeply grateful that I finally found someone who would actually address the sensory issues that I don't care about me anymore.

We had to buy a car to do this.  That was traumatic in itself.  Now we have a car loan, too, which my Dave Ramsey nature really abhors, but we needed it NOW, not in two years when it would have been done right.

So, we drive.  We do exercises.  We do sensory tasks,  We push and pull and work with da Creature.  He's doing so well at the work.  We know what a spin board and a BOSU ball and bean bucket do.  We know better than to listen to anyone who says "What you need is a pressure vest.  That'll about do it.  That's gonna be the best you can do for him."  NO.  If you are hearing that, keep looking.  They are wrong.  Just wrong.  Lazy and wrong.

His balance is finally improving, but it's taking a LOT of life to get us there.  I have every hope that his ability to write and listen will improve too as we go through the ILS work we will be doing.  The increasingly well equipped therapy room which has replaced my living room will be our touchstone to a better world.

So, now we work.  HARD.  No more luxuries like eating out when we're exhausted because now we have to mind the car payments.  No more lazy summer mornings.  The marathon is ON.  We have eight weeks to get him as ready as we can to take on second grade where the school system has just given up on everyone.  Special education seems to have taken the biggest hit in the budget cuts.  Thanks, Haley Barbour, you're such a gentleman and a compassionate leader.  <dripping lethal poisonous sarcasm>

I can't even get the district to give us an appointment for their crappy OT/Sensory integration "independent" evaluation which was written in to the IEP over the district advisors bloody corpse in May.  My advocate sends emails, they ignore her, and the routine goes on.  They are not going to help us, this much has become crystal clear to me.  It's up to me and my beautiful brilliant daughter and da Creature.  Failure is no longer on my list of things to mindlessly accept.

Should I have started this two years ago?  Probably.  But I trusted the district then, believed they knew what they were doing and would help us find therapy and people that would be good for showing us how to help da Creature.  I could not have been more wrong.  So, I feel guilty every time we are shown a new way to really make progress and can't help but look at the lost time as my fault.  Can we still rescue him from his brain?  Yes.  Would have it been better had we started sooner?  Yes.  My heart aches for him, and I hate myself most days.  What can be redeemed will be, though.  That much I can promise him.

Frustration, Negotiation, Reconciliation?

Well, I haven't posted in a while because things got quite, um, confrontational, in a quiet but very painful way for us.  Da Creature experienced deprivation, harm, and sorrow at the hands of what I will characterize as misguided but well-meaning people in charge of his life at school and we are now trying to work through all of that with an advocate in tow.

Advocacy is a complicated process, and hard for da Mama.  I like working collaboratively and creatively to solve problems and have noticed through the years that others, especially those in public service, often for whatever reason do not prefer this method.  Those in command seem to want to dictate terms that are the most convenient for them and their system, and depending on their level of authority, impose those terms upon all comers without regard for circumstances or individual situations.  Those who object strongly to the terms are then labeled in the most condescending and humiliating ways deemed necessary to silence any future brave souls who might raise their hands and criticize the criteria people are using to make decisions.

It's all okay if YOU provide, fund, and manage your solutions.  However, solutions to complex problems like autism are hard at best, and I have all I can do to manage my own.  Arm-chair management of  a bureaucracy at range without authority and the constant need to put in requests for accommodations to be made for one child (whether or not that child has a WHOLE HUGE peer group arriving on the scene in the not so distant future), is not really practical for this housewife.  So, I needed help from someone who speaks their language: the language of law and procedure and actual entitlement vs. perceived entitlement. 

As I've talked about this some with friends, it does, however, give me great joy to hear stories of how the original legislative protections for the disabled were created.  Someone I know from plurk who has an excellent blog of her own about her journey and life working with the giant machine that is society, was telling stories of the housewives and law students and disabled vietnam vets who gathered in small suburban kitchens in the evenings after the war, who drafted proposed changes to laws and fought to have better schools, better access, and in the end won better hospitality for the disabled from society at large...who fought to NOT have to sit in isolation and watch the world LIVE while you die quietly and out of sight for the convenience of others.

I will go back now to posting our day to day adventures, but will out of necessity no longer post the things which must be advocated rather than vented.  Hopefully, with the new help, I won't be so sad and mad and outraged all the time and you'll see posts about the new fire pit in the back yard and smushed marshmallows and "mommy, can I have a bank account NOW please"...you know, the meat and substance of life with da Creature! :)