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! :)

I Love You

After a full day yesterday of stressing out because I have lost my child care person who has been there for us since he was an infant, I was back in da Mama despair at the inevitable losses it will make in my life.  If I have no child care, those last few things I was able to do for work will vaporize, and then it's just me, and hours of nothing but him.  The tiny tyrant.  The monarch of misery.  HRH da Creature.

Then, this morning, on his way to the back door to go to school, a rare moment, a glimpse into the mind of the inexplicable child...

....he paused, reached up and touched the dangling glass no-no gently, softly, almost tenderly and quietly said "I love you."

Words fail me.  The compassionate, ever-faithful love of God himself stops the world for just a moment, and I am reminded that it doesn't matter if I never direct a choir again.  I have a job.   His name is da Creature, and he matters to God.

Mass is a Nightmare

Mass is a Nightmare.

I'm Catholic, and the thought of missing a Sunday Mass for any reason sends shivers of fear down my spine.  The confessions always sound like a laundry list of reasons that OTHER people would prefer I not take da Creature to Mass.  It was always bad, because I'd get reports from the nursery, even very early on, of the child who never quit screaming, who had bad chronic diarrhea, who would throw things at other children, and then, even before he had a chance to AGE out, there were murmurs of kicking him out because he was big and couldn't play nice with the other children.  Once people identify your child as a "problem" it's all they see.  Behaviors that go unnoticed, untended, and uncorrected in other children become the sole focus of the adult on YOUR CHILD and there's a snowball effect.  Especially if he doesn't feel good.  You're never gonna know he doesn't feel good, by the way.  NEVER.  He won't tell you.  I don't think he even knows himself.

Once they effectually got rid of him from nursery, I was faced with this deep-seated parental NEED to teach him about Mass.  I love the Church.  I LOVE Eucharist, and I have a deep devotion to the sacrament.  I want desperately to just go back to singing in the choir and being a congregation member.

All that has been stripped from me.  Every week, all Masses, we tried it all.  I tried daily Mass for a while in the summer in the hopes of banishing the "new" the "different" but to no avail.   He gets very overstimulated, becomes loud and all his ticks come out...clicking, popping, thumping, making random repetitive noises, and then when I TRY (God bless me, I've TRIED---stop giving me that LOOK Lady, I know he's doing it, you SEE me trying to make him stop, I'm NOT A BAD PARENT YOU JUDGMENTAL JERK...*sigh*) to make him stop he gets defiant and beligerent, and then the REALLY distracting behaviors make their appearance.

Meanwhile, I've completely been consumed by da Creature's behavioral crud and no longer have any spiritual focus or awareness other than him, the beauty and majesty of Christ's sacrifice lost in a sea of frustration, humiliation, embarassment, and fear that someone will suggest we just not come back to my face.  I cried a lot at first.  I went to confession a lot at first.  Then my priest (outside of confession) told me that da Creature was sick, and therefore, I wasn't under the obligation that others were....I'm sure he meant well.   It made me feel like such a complete failure. 

In the piece below, the nice lady recognizes the pain on the adults' faces.  I wonder some times if anyone here ever sees it on mine?  I've lost SO much to take care of this child.  I'm SO incredibly isolated and lonely and stuck in an impossible situation and I can't even go to Mass anymore in a way that makes sense.  Oh, I can hire someone to take care of him during Mass, but even the lady I hired doesn't want to be with him anymore and I'm out of humans.

Normally, I'm the amazing solution-girl.  Now, I'm the sad failure-girl.  Somehow, some way, there have to be some compromises.  I'd like to band together with the other isolated parents who can't bring their children to Mass because they can't be in there, and they can't be sent to "Children's Church" and they are too old for the nursery, and pool our resources to hire someone for a "disabled child" care person during Masses so we at least can go to Church.  However, the sad truth of that is all of us are so scattered and alone dealing with these children that we rarely come up for air, and organizing us would be a difficult task indeed.  Not to mention the problem that the Church would have with liability for a grouping of developmentally altered destructo's all grouped together....

Anyway, please read the article below.  We really do NEED more people like her in our lives.  The Nightmare gets better when the people around you are not all wrapped up in THE LOOK.

To read the entire article "Profound Lessons From Asperger’s Syndrome" By Samantha Keller by clicking on the link because we definitely    Need MORE People Like THIS! :):

The boy’s father came back to the table with an enormous piece of carrot cake for him.  He gently placed it in front of him with a plastic knife and fork and smiled at him.  In one fell swoop, the boy inhaled half the cake. The fathers smile quickly disappeared.  “Slow down bud!  Use your fork and knife!”

But the boy did not like to be reprimanded and he grabbed the knife like a dagger and stubbornly resisted his father. In a battle of wills, the boy reluctantly cut the remaining piece in two and shoved them both in his mouth in rapid succession.  Trying not to tremble, the knife only inches from my face, I dared not move an inch.  In lightning speed his father grabbed the knife, cleaned up the frosting smeared all over his face and sent him off to explore the church. His mom trotted after him, glancing back with an apologetic look.  The father collapsed into the chair and rested his head in between his hands, exhausted and embarrassed.

“You know you are doing a great job, don’t you?” I said.

His eyes filled with tears and he whispered, “I don’t know.  He’s better at home. He feels safe there.”

 Our eyes met, acknowledging a difficult situation at best, recognizing that sometimes there are no words.  I could see his fierce and unconditional love for their first-born son mixed with sadness, disappointment and struggle. His wife came back to the table and the little boys ran off to play and care for their brother, another reminder of how their whole family was affected by Apsberger's.

“Does he ever get lost?” I asked, noticing how he would become entranced by an object and take off at full speed only to have his attention caught elsewhere a moment later.

“Not usually," they said in unison.

I can relate.  So much, on every front.  I long for those moments when I brave eye contact with another adult and THE LOOK isn't there.  I'm not a big fan of pity, but compassion works.  Understanding.  Reading the implicit post-it note on his forehead and having a forgiving and compassionate heart about whatever offensive thing my creature just did.