Monday, June 23, 2014

An Insider's View

Here is a link to a wonderful post about sensory seeking written by an adult with Asperger's. I love how she talks about how the activities made her feel.

I had so many seeking tendencies growing up, and so did Victor.

Every day at recess in fifth and sixth grade, my best friend and I would swing as high as we could, then jump off. Then one of the boys showed us how to back-flip off the swings and we were hooked! The first couple times was terrifying, but after that it was pure exhilaration! Until my best friend broke her arm, not even from a high jump or a back-flip, just a little jump! And the only person who would ride the Zipper or Eggroll with me at the fair was my Uncle Joe (who was kind of like a big kid himself) because I couldn't get enough of the rolling and plummeting toward the ground upside-down! I did manage to talk my older brother into riding the ejector seat with me one year though. Oh the blissful ignorance of potential injury and steel stomachs of youth!!

Victor once rode The Mindbender, an indoor roller coaster in the Edmonton Mall, 68 times in a row!! He was nine years old! His parents finally made him stop because they were afraid he was going to get brain damage! And he loved rides like the Hurricane and Teacups that spun super fast. He spent uncountable hours on the trampoline every summer, grazing his hair across the fabric with flip after flip. Not to be left out, his dad had built a literal sensory extravaganza as a backyard, complete with a skateboard half-pipe, slide from the top of their two story house to the ground, and zip line.

At any rate, it's really no mystery where our munchkins get their seeking tendencies from!

Funny thing is, after months of pregnancy nausea with each of my kids, just riding the Ferris Wheel now makes me feel like I'm going to loose my lunch! So much for mother-son bonding on roller coasters and fair rides. Just have to leave that to Daddy, and eventually sensory seeking siblings!

Wednesday, June 18, 2014

I'm Sick

Since Monday afternoon Kit has been up and down with a fever.

Yesterday, we were hanging out on the bed together. She was playing on my phone, and without looking up, she said very matter-of-factly:

"I'm sick again."

"Where in your body are you sick again?"

"My eyes."

When I asked to see her eyes, sure enough they were teary, red-rimmed, glassy, feverish eyes. They were indeed sick again. Her fever and crept back up.

"I'm so glad you told me where you were sick! I'll get you some medicine."

While I'm never glad for my babies to be sick, this was a humongous breakthrough for Kit. To be able to tell me that she didn't feel well.

While she's never been completely unresponsive to pain or discomfort, she has been seemingly under-responsive. Often even seeming to enjoy what many others would consider painful or unpleasant, such as having an ice cube put down her shirt, by laughing and shouting "again!"

For a long time it seemed like it was not the shots that made her cry during vaccinations, but rather the being held down, because she would stop crying immediately when she was released. She'll just stand in an ant pile watching the angry insects biting her tiny toes. Nor did she register that what she felt when she put weight on her sprained ankle two months ago was pain. She would say no, when I asked her if it hurt, even though she would cry.

And we haven't started potty training because she hasn't shown signs of being able to identify the feeling of a full bladder or an impending bm. The handful of times she has actually peed in the potty have been circumstantial and she always looks thoroughly surprised.

A year ago, she couldn't point to a scrape as a source of discomfort, though she does finally do this. Almost obsessively in fact, asking repeatedly for bandaids, then pulling them off to look at it then crying for a bandaid again. But even this, I think is driven by her idea that it is supposed to be covered, though I think the pulling off part might be a response to feeling discomfort from the scrape.

I honestly believe that very often she doesn't register pain as pain. She is confused as to what she is feeling. Though she is finally begining to sort out pain from pleasure. And I think it has everything to do with her sensory issues.

She still requires much deeper tactile input than the average person. She still bites on her own hands and fingers as a seeking mechanism. She actually sticks her fingers into the cat's mouth trying to get him to bite them. We have to supervise constantly the two of them, because she will not only bite him and lay on him trying to get deep pressure input, but it often takes several bites from him before she registers that it is hurting and unpleasant. She litteraly used to laugh and giggle when he would bite her, she enjoyed the sensation, and would get mad at us for taking him away.

I believe that this underresponsive reaction to pain is the same inside her body as out. She still doesn't tell us she is hungry, but she does more often ask for specific foods (mostly candy) rather than just collapsing into a crying heap of hot mess!

She has never complained of a tummy ache! I learned her about-to-puke look after having caught it with my shirt several times without any other warning. She wouldn't even cry.

With this bout of fever, and likely the sore throat and cough that her siblings have been complaining about, she just wants to nurse and be held all the time. Until the medicine kicks in, and then she wants to repeatedly watch YouTube videos about playdough...and nurse. And she's a collapsing mess every time I won't let her nurse or we take the phone or tablet away. In fact, had her eyes not been tearing due to her fever and tiredness, I'm not even sure she would have said she was sick at all. The tears were making it hard for her to watch her videos.

But she did have some kind of recognition of the connection, and I'm so glad. When I began to notice her apparent lack of ability to recognize pain, I started deliberately using specific related language over and over. When she bumps her head, gets a scrape, or other injury,  I name it and say "that hurts" over and over.

I also say where it hurts first, then ask her where it hurts. "You have an ant bite on your toe. Where does it hurt?"   The idea being to help her recognize what that sensation is and to provide her the language to label and identify when she gets hurt. And she is doing better with external injuries.

This is important not only for her to recognize when she is sick or hurt, but also to discern when others are, especially if she has been the one who hurt them. She so rarely displays any understanding of how her actions have hurt someone else that it is difficult to dicipline or guide her behavior. She doesn't seem to make any connection at all, except that sometimes she can elicit a scream from her sister with a pinch or fistfull of hair and tries to repeat it.

She is truly lacking in an understanding of what "hurt" feels like and means for herself, so she is all the more ignorant of what it means for someone else to be hurt.

This is definitely a skill we will continue working hard to help her aquire. And yesterday was a welcome step in the right direction. But I hope she doesn't have to tell me "I'm sick again" for quite a while.

Friday, June 6, 2014

Ice Orchestra

This is one of the coolest things I have ever seen or heard!

A little ice for some summer relief!

Wednesday, June 4, 2014

Wishy Washy

So, one of the hiccups in our laundry process is that when the kids try to wash a load, they become paralyzed when it comes to the settings and knobs.

We have a stacking unit, so all the knobs are on one panel. Convenient for me. But baffling for my children.

And each knob has no less than five settings to choose from.

My kids go cross-eyed looking at them, and brains shut down.

Me telling them which settings to put it on does not help. And going in there to show them partly defeats the purpose of them doing it themselves.

And even after they seem to have figured it out. A week or more goes by until they wash clothes again, and everyone knows, kids don't remember what settings turn on the washing machine. They can recite 112 different episodes of Sponge Bob word for word, in multiple character's voices,  with full descriptions of background and costumes, BUT, they will forget where to turn the knobs to turn on the washing machine every time. Priorities, you know.

Sooooo...







I fixed it! 

Tuesday, June 3, 2014

Transition

We had our transition evaluation with the school system today. Kit's occupational therapy right now is provided through Early Intervention. But the school system takes over when she turns three. So they must evaluate her to know what needs to be in place by then. Today was cognitive and speech evaluations.

"She shows no educational signs of autism".  Despite her not speaking, just using signs, until well into the evaluation. She scored so high on the intellectual tests that they believe she is probably gifted. One test they just had to stop because she never hit the six wrong answer ceiling. The material she ended on was well beyond kindergarten level. 

All of that makes me happy. Sort of. It  should make me happy.

Except it also means that she is not going to qualify for any assistance, which I already knew.

Intellect is her specialty. But she still can't make it through the day without major sensory adjustments, huge amounts of planning and redirection, and work work work. She can't answer basic questions like 'how are you?' that are based on identifying feelings or other abstract concepts. She can point out picture emotions and label them, but she cannot connect them as reactions to actions, especially not to her own actions.  

But according to them...She makes eye contact. She points. She can have back and forth interaction. She is not intellectually delayed, therefore no signs of autism.

But what they just don't understand is the amount of work and practice I have done with her over the last two plus years to help her communicate and be comfortable in her own skin, and less anxious. That without teaching her sign language, and sensory integration therapy through her OT, we would have completely lost her so deep into the void I have no idea where she would be right now.

We found her keys very early and were able to use them to build bridges and make huge progress in a shorter time than many others, but that doesn't mean she doesn't have daily struggles still.

It doesn't seem to matter that she lost all speech and was nonverbal for nine months. That because she can speak now, autism must not have been the culprit. Which makes no sense to me since the goal of most autism therapies is to get the child to the point where they have "few to no remarkable differences from peers" and that they become able to interact with little "interference". The goal is to be able to mainstream, and help these kids participate in life with less disruption.

If a child meets some or many of those goals, that doesn't mean their autism is gone, or never existed the first place. It means the therapy is working. The hard work and perseverance and coping skills are seeing the hoped for results.

Her intelligence is not a sign that she doesn't have autism, it is a key to helping her manage and cope with it. To be able to work with it instead of against it. Her eye contact, and back and forth conversation is proof that all of her tools are helping. That her brain is finally feeling organized. It's a sign that all the work we have put in has helped her before she sank into the void where so many on the spectrum end up.

Just makes me cry. It feels like we will always be troubleshooting alone. It brings me to tears every time to know that if I hadn't worked with her past my breaking point, that she would be manifesting all of the 'delays' that they look for, but she would also be miserable as would our whole family, but none of the "professionals" seem to ever really get that. Or how much work most days still are with her. How delicately balanced everything is with her.

That when I burnt out and stopped working with her daily, (just did basic life care like feeding, diapers, bathing, but no OT, no sensory diet) she regressed again. Her speech dramatically reduced, her reptative behaviors substantially increased, as did her anxiety.

We still have the offical Autism evaluation to go through. I'm not expecting her to meet that critiria either since it is very different than a medical diagnosis. I still can't understand why they are not the same critiria.

I wish there were more professionals out there who could see the scope beyond delays. That that is just one small, though for many kids, critical,  part of a much bigger picture. But it's too hard to test for the bigger picture. 

Our Occupational Therapy ends the day she turns three. And as far as I understand,  the school system offers no suitable alternative even if she qualifies for sevices. We will likey be back to all on our own. She's improved phenomenally over the last nine months,  a whole different kid. Hope we can keep helping her stay as steady as possible after OT ends.

How different it would be if those who do evaluations were required to come spend two solid weeks in our home, day and night. To see what we see, and what we do, and how she can go from having a great day to awful in just seconds. To glimps the subtleties and nuances that add up to big impacts.

***

They asked me today, when she grew up what I wanted her to be.

I thought it an odd question. Who am I to say what she should be? What I want her to be is of little value, it's she who has to choose to be anything.

What do I want her to be when she grows up?

Happy.

I want her to find her passion and pursue it.

And that's exactly what I told them.

And that's exactly what makes every ounce of effort we expend worth it.

Monday, June 2, 2014

Busy Boxes

So, I am going to assume that every family struggles with keeping their kids motivated and on top of chores, schoolwork/homework etc. Don't disagree with me, I need the comfort of the Sisterhood of Mothers Trying to Get Their Kids to do Anything Besides Stare at Us Like We are Speaking Klingon! 

In another attempt to breakthrough the blasé, we have implemented another new system of organization! 

And this one is definitely going to work! Forever!! 

Bahahahahahaa! (Wiping away a laughing tear...)

Ok, probably not forever. But for a long while let's hope.

Here are the kiddo's Busy Boxes:


Busy Boxes are the whole days scheduled activities in a box. It is divided into sections, Morning, Afternoon, and Night. Each section contains index cards with jobs written on them. When the jobs in a section have been completed, then a privilege is earned. This is primarily for the big kids, and sort of a training ground for Kit. 


This big kids each have five morning jobs that must be completed everyday. These cards stay in their box and are always the same. When both kids finish all five things, then they can watch a movie. We encourage Kit to complete her morning jobs, but we are keeping it only positive right now, no consequences if she doesn't feel like cooperating. But with the momentum and encouragement from the big kids, she had been happy to participate in at least a few of her "jobs".



Giving Kit some "real" jobs has proven a fantastic way to help her move through her day, hold her attention, and build in sensory diet activities and OT breaks right into the routine in a way that makes her more excited to participate! She makes her bed by pulling her weighted blanket up and straitening it out while climbing all over her bed. Carrying a big cup of water over an over to fill the dog bowl is great heavy work and focus activity. And I also put together a little cleaning caddie, just for her! I got a sectioned basket with a handle, a small spray bottle, duster, and mini-sweeper/dustpan, and cut up a towel into little cleaning clothes. All from the dollar store. She now cleans her mirror, dusts her toy drawers, and helps "sweep". She goes and gets her caddie herself from the bathroom cabinet, and puts it away with equal independence! The jobs provide her a focus, and allow me to accomplish more without her shadowing me, whining 'I need you to hold meeeeee!'


After their movie, they move on to their afternoon jobs. These cards vary from day to day depending on the jobs that need doing, some occurring only once a week or once or twice a month. School assignments are included in this section. The kids can pick and choose from their cards in their box and do the jobs in any order they chose, unless we request a certain job first, like taking out the trash for example. They have all afternoon on most days to accomplish their tasks. When all their jobs are done, they are allowed to have up to 2 hours screen time, not to begin before 3pm, and ending precisely at 7pm regardless of how little of their time they may have utilized. It's a use it or loose it system. It does not get carried over or saved up. Grace for example, dawdled a bit in getting all her jobs finished yesterday, she ended up not earning her screen time until about 6:30, which meant she only got to play for about half an hour. 






The cards are color coded. Red is for Kit. Blue for Grace. Black for Zak. Green is for jobs that anyone can do. In an average day, the big kids have their five morning jobs (one of which is breakfast), two to three school assignments, and two to three afternoon chores, along with going outside. A few days they have several little jobs, and a few days they have one bigger job and only one or two very little jobs. Showering around here counts as a job, because neither of them ever want to do it, so it has to be assigned!


Their  nighttime jobs are getting ready for bed in a timely manner. If they finish on time, they get their full amount of reading time, if they dawdle, they loose minutes of reading time and, depending on why they are running late, may owe cleaning time the next day.

Throughout the day, as jobs are completed, the cards are moved behind the Finished Fish in their boxes. Before bed, we examine the boxes to see if all the jobs have been completed. If they have, then the kids each earn their token, a specific laminated shape that they get to stick onto their chart. 





At the end of the week, we will count the tokens. Anyone who earned at least five gets to pick a prize from the Goodie Basket. If they earned all seven, they get a prize, and a special freezer treat. If they all earned at least five, then a blue fish token is velcroed to the Goodie Basket. at the end of the month, depending on the number of fish earned, we will do a special activity, like a trip to see friends, or a visit to the water park or beach.




I love this system so far! It is uniform for all three kids, yet flexible and personalized to their jobs. It fosters their independence and personal responsibility for keeping on top of their stuff. The consequences of not participating are natural and built in, so I don't look like the bad guy for enforcing the rules. Everybody knows what they are and knows what is expected, if you don't comply, that is your choice and your consequence. And the incentive to finish is also motivated by the fact that if you don't do it today, it will still be in your box tomorrow along with tomorrow's jobs.

It takes me less than five minutes a night to organize and fill in the cards for the next day. And no matter what time the kids get up, the boxes are ready and waiting. The kids don't need to ask what they are supposed to do, they just go check themselves, so I am not having to nag either. I do offer gentle reminders at times, but leave it to them to execute. 

I have noticed an immediate drop in squabbling between Zak and Grace, and Grace and Kit. Because they all know what to do, they are busy minding their own business trying to earn their rewards instead of rolling around on the couch annoying each other while I shout reminders from another room. (Grace still needs occasional reminders to let Kit take care of her own jobs, in her own way.) 

And bedtime has also become almost instantaneously smoother, which is a 99% reduction in my stress levels at that time of night!!

I'm sure we will run into snags, or that the novelty will wear off. But I'm going to be a blind, raving, optimist and say that this is going to work for YEARS!

And the system is super easy to set up and implement. I bought almost all the supplies at the dollar store, except the laminating sheets (the most expensive part, but also optional. I chose to laminate our tokens and token boards because my kids are rough on stuff and I really wanted these to last for a LONG time, so I viewed it as a worthy investment), the Velcro tabs to attach the tokens to their charts, and the patterned scrapbook paper which I lined the inside of the boxes with to make them unique an pretty! This system could be elaborately more personalized and prettied up, or simplified even more for cost savings. And it can work for one child to a dozen or more, since it is sort of a cross between classroom organization and Supernanny home routine/reward systems.






Happy Monday!