Friday, January 31, 2014

3 for 30 Challenge

I'm giving myself another day!!
I got a ton of stuff done today, despite Kit not taking a nap, AGAIN! I just didn't get to the part of organizing for disposal.
But all day I kept remembering things I want to add to the piles, so I'm giving myself an extra day. A day when Daddy is home to help keep Kit busy,  and ensure she takes a nap so that I can kick some serious clutter!
So instead of  a picture of stuff I'll leave you with a little adorableness! Well, she's little, her adorableness is HUGE!!

Her outfit just couldn't have fallen together better, this was not planned, but ended up crazy adorable! Her shirt and shoes were the exact same colors and sparkles! And her little pink skirt over her black leggings! Ahhhh the cuteness!!

Thursday, January 30, 2014

3 for 30 Challenge


Day 25


1.) I cleaned out the sock box today. These are the ones that have been in there for close to a year and are still single. Now that I finally threw them out, their partners will finally show up looking for them!

2.) A nice pair of dress shoes that don't fit any of the guys here and so have been serving as a door stop fot too long. Time to find some feet guys.

3.) A candle wax warmer. I'm out of tealights to use with this and I don't have any plans to buy more anytime soon. One less thing to dust.


Day 26


1.) Giving back the borrowed guitar that we never learned how to play because our life is already completely nutty.

2.) This flannel blanket will help keep Nana nice and toasty on these chilly nights.

3.) More clothes. (But still not enough to find the floor everywhere we want to!)


Day 27


1.) A tv without out a remote is like apple pie without ice cream, sure it's still fun, but it doesn't quite give you the whole experience. The story behind this tv is long and mostly boring. Let's leave it at it's been in the closet for a year. Please, Honey! Let's give it a chance at adoption! 

2. and 3.) Clothes, clothes, and more stinkin' clothes! (Of course I'm not giving them away "stinkin", it's just a figure of speech.)  I'm still trying to figure out how we have this much clothing. I've come to the conclusion that clothes are like Tribbles...cute, but man do they reproduce at warp speed! (You might be a Trekkie...) (especially if you looked it up to double check the spelling! Ha!)

♡♡♡

We are reaching the home stretch! I'm actually a little worried, I really thought I had way more stuff to get rid of, but outside of mountains of clothes, we've cut out just about everything that we don't use and probably never will. 

Remaining items, even seldom used ones, either are waiting for someone to grow into them, or are specific purpose items, like household paint supplies, craft items, and extra comforters (I can't count the number of puky nights that I have been soooo grateful that I kept these on hand!)

Nevertheless, I WILL find nine more items to be rid of by tomorrow night! (Yes, I've given myself a grace-day. It's my challenge, I can do whatever I want!) Actually I already have a bunch I know of, I just have to collect them and take pictures. 

Here's to less clutter! (Without giving away children and old men.)

Zak's Sketchbook 2


One thing I love about cleaning house is that I find drawings everywhere. Most of them are Zak's and most of them are just doodles or practice, but to me they are little glimpses into his mind. And he has a pretty incredible mind. 

So here is a few things I found lately that made me smile...






He made a choose-your-own-story, speed story.
He has been majorly into cartooning this year, reading tons of books about it, and filling notebook after notebook with different characters, practice faces, thought and quote bubbles, scenery, and then of course making up his own  comic strips. He made up the one below, and filled a third of a notebook with his adventures. The Bravish Knight even made a star appearance on the anniversary card Zak made for us this year, it was very charming!




The last couple of months Zak has gotten more introverted. And his work has become much more artistic rather than cartoonish. He still cartoons regularly, but very often now his other drawings are more life based. And are full of amazing detail, lighting, shadows, patterns. I am amazed constantly by his talents, so different from my own, and without instruction.






I can't wait to see what comes next.

Wednesday, January 29, 2014

Right Brain, Left Brain... Part 3

Brain Dominance affects more than handedness.

We tend to think of our dominant side only in terms of right or left handedness. But brain dominance controls a whole lot more than that. 

As you probably know, the left side of your brain controls the right side of your body and the right side of the brain controls the left side of the body.

Typically, brain dominance not only determines handedness, but also which foot we lead with, which eye we focus with, and much less well known, which ear we listen better with.

Kit is extremely right dominant. To the point that I several times looked up information on cerebral palsy, though I have been assured she is fine. It's really a matter of communication in her brain itself.

Miss V explained to me recently that the left side of the brain is our logic center. It is very linear and pattern based, thus it is  where we process language and math. Whereas the right hemisphere is our emotion center. This is where we process music, abstract and spacial thinking, creativity, and emotional expression.


This does NOT mean, however, that right handed people are not musical or artistic, or that left handed people are bad at math. Not even close. Our brain hemispheres cooperate and communicate to enhance an individuals skills in a broad range of development and abilities. 

In some individuals though, some areas come more highly developed from birth, or can become so through training in a specific skill, such as music lessons. Did you know that part of the brain is physically larger in those who learned an instrument than those who haven't? It can actually be seen in images of the brain. So no doubt there are other parts that are similarly affected in areas dealing with other specialized skills.

In Kit's case, and likely Zak's also, though to a lesser degree, her left hemisphere appears more highly developed than her right for the time being. As a result, it's working harder than it should and there is an imbalance between her two hemispheres. They aren't communicating as well as they should to each other, and thus are not sending consistent signals to the rest of her brain and body, and they are not interpreting those they receive properly.

As a result, she has some somewhat disproportionate skills.

While her ability to execute speech regressed and was delayed for a time, her language abilities themselves are quite remarkably advanced. Her vocabulary is enormous, her pronunciation well above her age level, and her ability to use sign language and spoken language seamlessly is fascinating. I believe she has a brain for the spoken word and could easily learn several languages and speak them nearly flawlessly if provided good instruction to begin with.

Her ability to provide emotional expression is far less developed. It took her a very long time, and she is still learning that the words for emotions are specifically connected to and described feelings. This is a very abstract concept for her, and on her bad days completely eludes her, especially when her words fail to surface. She has a difficult time differentiating between any emotions that are not to the extreme, and even then can't tell the difference between someone who is pretending to express an emotion or is actually expressing it. Some of this is purely age related, but she is not likely to simply "pick it up" as most other toddlers do. We will have to explicitly teach her, and a great deal of her understanding may simply come from memorization rather than intuition. She is not without empathy, she is simply confused about when and how to show it.   

Her linear, pattern recognition (math and reading skills), and logic skills are all very strongly established. This can well be used to her advantage, as this lays a great groundwork for helping her develop other learned skills.

Her abstract thinking skills are much weaker, as is her ability to "pretend" or use her imagination. We have seen some improvement in these areas, but the majority of her play is still mimicked behavior, rather than spontaneous and creative pretending.

One of the most interesting things that Miss V shared with me though has to do with the way Kit hears. Kit displays and always has displayed an overwhelming preference to listen with her right ear. As an infant and still to this day, she primarily sleeps with her right ear exposed, listening even when she sleeps. When attempting to get her attention, she is more quick to respond when her name is said on her right side, whereas her response time on her left side takes her twice as long, if she responds at all.

I insisted on having her hearing tested thoroughly, because even though I knew she could hear, I wanted to make sure that she didn't have and impairment in hearing certain tones, either low or high, or that there wasn't a minor deformity that could cause distortion. She doesn't, her hearing is in fact impeccable.

She simply prefers to listen with her right ear. This is likely because she is such a logic and pattern based thinker that she can easier process things that primarily enter that ear better. It allows her to sort and identify and execute responses faster.

This means that her left ear is not processing proportional stimuli. To improve this we have been encouraged to engage the emotional side of her brain by way of humming, instrumental music, general sound effects, and emotional language.

Basically it boils down to, when we need her to follow instructions, understand a new concept or word, or identify facts or objects, we need to talk to her on her right side. But when we are trying to appeal to, or, express emotions, commendation, and bonding, we need to talk into her left ear.

An interesting side effect of Kit having such strong brain dominance on one side is that the right side of her body is much more developmentally advanced (she was clearly right handed from about four months old), it is also her most sensitive side and most prone to sensory issues . Her right leg and foot are enormously more sensitive than her left, she runs mostly only in circles to the right, she is much more willing to let me hold her left hand than her right, but she prefers to walk and sit with her right side next to me.

In order to help calm her right side, we always begin her OT protocols on her left side. This has a two-fold purpose. One, it helps ease her mind into the routine. And two, we are using her less sensitive side to "teach" her more overstimulated side. Even so, there are many days where we get through her left side work only to be very nearly kicked in the face when I go to work on her right side. I've learned to duck and weave pretty quickly, and this is where electronic distraction comes in especially handy. That, and the promise of lollipops if she lets me "work on" her legs.

***

Well, that is the general gist of the Occupational Therapy that we have been implementing with Kit over the last three months. We still have a long way to go, and her needs will grow and change almost as quickly as she does. But now, I'm beginning to have a better idea of how I can best help her navigate her daily disagreements that take place between her hemispheres!

We are making progress.

Some days more than others, but progress indeed!


Tuesday, January 28, 2014

Right Brain, Left Brain...Part 2

Reflexes are very important!

Have you ever been drifting off to sleep, only to suddenly jerk awake, slightly flailing your arms out, having a sudden, though brief, sensation of falling? That was your Moro reflex at work. Your brain for whatever reason felt that you needed to use it, so even though it's sort of been "dormant" in your system for a long time, it's still available in an emergency.

We are all born with reflexes, and as we grow these reflexes become integrated into our nervous system. In a way, they lay dormant until our body has a need for them again. This is normal, and vital to growth and balance of our complex body systems.

In some individuals, and very prevalent in those on the Autism spectrum, these reflexes do not properly integrate. They may however change their appearance and how they manifest throughout the body. This leads to a whole host of body systems that are getting mixed and messed up messages. It's not unlike trying to climb a ladder with entire sections of rungs missing or weak or running sideways! Makes it very hard to accomplish even basic tasks.

These un-integrated reflexes can be relaxed, however, and the brain and body can be taught how to properly integrate them and respond accordingly. We manually manipulate Kit's hands, feet, spine, and joints in order to physically make the brain and body feel what the normal response is. Eventually the brain begins to register these movements as preferable and safe, and the muscle memory of her body starts to work in harmony with the new information.

The result is a relaxation and integration of these reflexes so that the body can now move forward into the next needed sequence of reflexes and growth. New reflexes cannot emerge properly until the preceding ones have integrated.

We are using the Masgutova Method primarily to address Kit's sensory and reflex issues. Kit has a lot of reflex issues and these directly contribute to problems with other sensory systems, problems with emotional regulation, difficulty complying and following directions, play skills, and speech. In short, they are related to basically everything.

I will give you an example of how essential integrating these reflexes can be.

I have written before about Kit's excessive need to chew and mouth things well beyond the teething stage.

Turns out this tendency occurs in relation to an improperly integrated Babkin reflex. When this reflex is properly integrated, it allows the hands to relax and spread wide instead of wrapping into a fist like a baby's hand does. But this reflex affects more than just the hand. When integrated it allows everything from the fingers and palm, up the wrist, through the elbow and shoulder, following the neck line directly to the jaw, to be fluid and relaxed and allows each individual part to perform optimally.

When this reflex is not properly integrated it results in the storing of tension in the hands (think tight, clenched fists), the wrist (contributing to poor handwriting), the elbow (resulting in more jerky, less coordinated movements), and can be especially interrupting to proper use of the jaw, specifically in the areas of chewing, and speech. Symptoms can include excessive mouthing and chewing of non food objects, clenched or tight jaw, teeth grinding, and speech difficulties, among others. These symptoms become more profound when one is under emotional distress.

The way we work to integrate this reflex in Kit is to put direct pressure with a thumb in the middle of her palm, firm, but not squeezing, for seven seconds. Then we manually stretch the muscles in her hands in five different directions, holding each stretch for seven seconds.


The earlier in the day that we do this, the more effective it is, and this is one that needs to be performed a minimum of three times a week, but she could really benefit from it daily.

For a while it was unclear to me if it was really helping her or not. The changes happened gradually so they weren't super noticeable. In fact, it wasn't until I stopped all her protocols, unintentionally, back in December that we started to see how much they really had been helping her. They didn't stop working right away either. It took about three weeks not doing them to start to see old behaviors and tendencies returning.

Then the storm hit. Over the course of the last three weeks, Kit has literally fallen apart. Even though I actively restarted our OT routine over a week ago, she continues to regress. She is doing things again we hadn't even realized she had stopped doing until it was smacking us in the face again. Quite literally some days. Her aggressive tendencies have returned, she's hitting, biting, pinching, kicking, and pulling hair again. Her seeking behaviors have intensified. Lots of jumping, spinning and running in circles again. She HATES to be touched more than ever before, especially on her head and legs. She is pushing on everything again, wants to nurse all the time again, has difficulty feeding herself, is back to chewing on her hand intensely, and will go through a pack of gum a day easily. And the worst parts of all, her sleep is a disaster, her eye contact is more fleeting than ever, and she is far less verbal than she was just a month ago.

Do I believe OT was working? I believed it did before. But I am now 1000% positive that it is essential to her being well regulated and able to stay our relatively calm, but very happy girl.

Why do I have difficulty performing these protocols with her everyday?

1.) Because four other people live here and need major portions of my attention and energies as well.

2.) Because she is not always a willing participant, and they won't work if she won't comply.

3.) To do just the daily essentials requires a minimum of 45-60 minutes daily ( 2-3 hours for all of them, not to mention all the other sensory diet activities we constantly work in all day!). That is a long time to keep Kit cooperative, and the only way to really do it is to buy her attention via electronics. I'm still really struggling to put together a daily routine, but this is on the top priority list of daily events. I am determined to make a routine that benefits us all, but is as smooth as possible!

4.) A good portion of it takes a physical toll on me. Many of the protocols require odd positioning for me, mainly because she is a toddler and cannot help me more by following more directions. It can be exhausting to administer these to her when she is cooperative, when she is not, it can be...much harder.

Nevertheless, we are getting back on track, and now I feel like I have seen the jewels that make all this worth it. Her smile, her songs, her glittering eyes, and her "I love you, Mommy", are worth every minute and drop of sweat I put in!

Stay tuned for Part 3...it gets even more brainy!



Monday, January 27, 2014

3 for 30 Challenge


Day 24
 (I know, I'm behind, several days have attacked me at once lately)


1.) Used to be a cute purse, now it's a mess. Actually, now it's gone.

2.) So hard to decide that our precious disc spin is simply beyond saving. Good bye dear friend, we love you, but it looks like we will have to eventually replace you. For now though, your are taking up more precious space.

3.) We are passing back our wooden puzzles to the littlest cousin. Hopefully with all the peices. Eventually :/

Right Brain, Left Brain...Part 1

A brain divided cannot stand.

Quite literally, in fact. When connections and synapses in the brain are not communicating well, one can have great difficulty with both simple and complex motor tasks. But it can affect much more than just that. The ability to perform multi-step actions, to interpret information received from the senses, to use more than one sense at once, and one of the most noticeable, the ability to execute speech.

One of the most obvious examples of this is when an individual suffers a stroke or brain aneurysm. It is part of what can cause asymmetrical paralysis. And occupational therapy helps to not only retrain the muscles, but also to reteach the brain how to communicate with itself.

This is the roll occupational therapy is playing for Kit as well. We are teaching her brain to communicate better with itself, and with her body. While many of her motor skills are actually quite advanced, there are many other areas that connections are lacking or need strengthening. Her sensory issues being the most obvious. Her inability to process and interpret the information to and from, and to regulate her own senses causes her daily distress. And when your two year old is in distress, everybody is in distress.

Like many with Autism, Kit's brain, operates differently than many other people's. We've had evidence of this since she was born, probably even before.

I am far from understanding the whys and hows of Autism, but I am becoming more and more enlightened regarding what is happening in her brain. So I am going to attempt to shine some light on it for others who may have similar struggles.

Our Occupational Therapist, the Incredible Miss V, or as Zak likes to call her, "the one who talks really fast" (she has to talk fast, she has so much to teach me in so little time!),  has educated me far beyond what I would ever have been able to dig up in my own research. Out of all the bleak and stress of this year, she has helped set up the fog lights that are going to help us until the sun starts to shine again.

Here is some of what I have learned so far and how it is helping Kit, and hopefully eventually Zak as well, and even Grace some also. I am breaking it up into three separate posts to make them shorter and more digestible. Here is part one...

7 is the key.

It takes a minimum of seven seconds for the brain to "reset" to any new sensation. That is how long it takes to get the brain out of "fight or flight", know as the sympathetic nervous system,  and allow the central nervous system to take over and regulate brain functions once again.

This is very important because when we are in a state of fight or flight our bodies are flooded with the hormones adrenaline and cortisol, stress hormones. In order to stop productions of these and send out the feel good hormones,  one of which is melatonin (the hormone that helps us fall asleep), the central nervous system has to be back in the driver's seat.

Learning this made me a  little sad when I realized that Kit has spent a very large portion of her first two years a little bundle of stress hormones, even when she slept, which was a major contributor to her terrible sleep problems. My poor baby.

As we do Kit's OT exercises, most of them consist of putting pressure on specific parts of her hands, back, legs, feet, and arms. And each pressure point, stretch, or movement must be held for at least seven seconds so that the brain has time to make the switch and discern that touch is acceptable, even pleasant and relaxing.

1...2...3...4...5...6...7...

3-6 repetitions.

Most of her protocols also have to be repeated several times. Some three times, others 4-6.

This gives the brain practice at receiving these new messages. Plus it helps to instill muscle memory.

As the body relaxes and her brain begins to properly interpret the new information, a transformation begins to take place. Stress hormones are replaced with endorphins, breathing becomes regular, muscles becomes less tense, the heart rate slows and becomes steady.

These are the optimal conditions for a brain to work in. Parts of the brain begin waking up and communicating better. Focus increases. Muscles all throughout the body begin to receive clearer instructions, and can respond with greater accuracy. All of these responses combine to create a more cooperative setting inside the body.

Sometimes the results are not immediately visible.

We are literally rewiring her brain and teaching it things that most people automatically learn. This can take weeks to months to really see results, and we will have to do regular maintenance and tweaks for years.




Friday, January 24, 2014

3 for 30 Challenge


Day 22


1.) The kitty house that the kitty destroys nearly everyday. It's too flimsy for our house. I'd rather get rid of it and get him a more sturdy scratching post since he sleeps on the couch or with Grace most of the time now anyway.

2.) This is only a partial picture of the many old and non-reusable school books, but mostly notebooks that we pitched this week. We buy 'em cheap and use 'em faster.

3.) Two closet organizers that don't work at all for our closets. They are just sitting around, and I think it's time they found a new place of work.

Day 23


I don't care if this officially counts or not. It's my challenge,  so I am making it count. And it's a HUGE weight of my list of stresses.

1.) We switched dance schools. Grace has been in dance since September and while they put on an impressive "show" at the end of last year, we have come to realize that instruction is not the priority of the establishment.  Nor is treating their patrons fairly. Why should I pay a full months tuition every month when, because my daughter's class is held on a Monday, every month at least once her class is going to be cancelled due to a school inservice day without the option of a make up class? And we are expected to participate in fund raisers that benefit my daughter exactly zero, and on top of that we are supposed to pay $70-120 per costume to participate in the show, totalling $514 if she were to perform all the pieces for both her classes? No thanks.  We're done. Found a much more reasonably priced class, that only closes for normal holidays, offers make up classes, is much more focused on real instruction, and should we decide to do the recital, costumes are much more reasonable.

2.) In switching schools we also were able to put Kit in the same schools pre-gymnastics class for Kit. I'm much happier with this as gymnastics works with her body's needs better than dance. The actual gym here doesn't accept them until they are potty trained though. So this is great! Plus it's a parent participation class, which is nice. After Daddy takes her the next couple of times to let her adjust, then I can take her and I hope it will prove to be a good opportunity to spend some bonding time together. 

3.) We completed several essential house projects, which included repainting the kitchen, and installing more shelves in there. A great deal more space has been created with more efficiency of the space used. I also have been going through loads of papers, old study magazines, broken art supplies, and numerous other odds and ends that I didn't stop to take pictures of because I was on a roll! 

***
Not exactly where I want to be at this point in the project,  but I always procrastinate. Deadlines are very useful to me. I'm still trying! This week kicked me pretty hard. But I'm about to kick back!  We will NOT be making an appearance on Hoarders anytime soon!

Conversation Vactation

Scene: Victor gave Grandpa corn with his dinner.

Grandpa : What's this?

Victor: Corn

G: Rice?

V: No, corn.

G: No, it's rice.

V: No, corn, maize, its yellow see?

G: No no, it's rice.

V: Ok, it's rice.

G: I like the rice, it's good.

Thursday, January 23, 2014

Still Trying

I'm trying very hard to find the silver lining in my baby not napping.

She still desperately needs one.

Her mind and body are completely dysregulated. She's litterally fighting a battle inside her body.

When she can't nap, the entire afternoon and evening feels hijacked. Nothing happens the way its supposed to. None of our goals for the day get met.

She doesn't get happier and calmer, but rather continuously more tightly wound, more oversensitive, and looses not only all emotional control but her words and ability to verbalize her needs as well.

Yesterday, the entire afternoon and evening I spent either trying to get her to sleep, or engaging her in soothing activities trying to prepare her body and settle her brain to be receptive to sleep later. She had a terrible time falling asleep last night. And she woke up at least five times in the first three hours of the night after she  fell asleep.

The big kids need my help and attention, but they can't get it when I'm consumed with trying to keep my toddler from hurting herself or me or litterally tearing things to  shreds. She has bruises today from throwing herself around and banging into things yesterday. I have bruises and sctatches from her. And the big kids are lonely and bickering because their lives are disrupted as well.

This is where it feels like I'm surrounded by storm clouds and can't steer my way out.

I really want to see that silver lining.  ASAP...

It Could Always Be Worse

Today was horrible.

This thought kept rattling around my head all afternoon and evening.

Not again

As I rocked and sang and did sensory integration therapy in what was quickly proving to be another failed attempt to get Kit to nap.

Argh! Come on!

As I hear the big kids bickering on the other side of the bathroom door.

Ugh! Good grief!

When Zak informs me that Kit has smeared chocolate on the dry erase board.

I just knew this was going to happen!

As I am cutting Thinking Putty out of Kit's hair because I couldn't reach her in time to take it from her, and of course she wouldn't bring it to me because today was just not a complying sort of day!

***

The list continues throughout the evening, and to my great surprise but wonderful relief,  stopped just short of me getting thrown up on.

In fact, nobody threw up today.

No one needed x-rays.

Daddy arrived home safely.

Kit did eventually fall asleep, despite having emense difficulty staying that way.

It's ok that the kids didn't do much school.

It's ok that they messed up our pizza, we ended up with two!

It's ok...

Because despite the hiccups, and derailments, and unexpected twists and turns, and even the tears...

Today was still good.

We smiled. We laughed.

We got a few chores done.

I hugged each of my kids today and told them I love them.

I understood my baby even when she lost her words.

I was here.

I was engaged.

I worked hard and contributed to the good of the day.

And we all went to bed content.

***

Today was good!

As I look back over the course of our day's events.

There were so many things that could have been better. But they weren't any worse, so that in itself is worth celebrating.

I made a difference.

As I remember that weathering the storm doesn't mean we don't get wet, but that we got to see both sides of it. That we experienced it.

This right here is life! From Thinking Putty to free pizza! I got to experience it all.

I'm ready.

As I think about tomorrow, but...

Please! Let them sleep in!

Wednesday, January 22, 2014

3 for 30 Challenge


Day 21


1.) Two toddler sleeping bags. My big kids outgrew these a while back, but I really resisted separating the pair. They were a gift at my baby shower for Grace, so I really wanted them to stick together and to help make many more happy memories for other little people. So, I'm giving them to Auntie. They will be there as the littlest nieces and nephews grow and get to make memories at Auntie's house. And in that wonderful way, I'm not really giving them away at all! (But they still count here. They did leave my house!)

2.) Nana went home with an extra blanket today. I'm glad it can warm her knees instead of sit on a closet shelf. :)

3.) I love the fabric and colors on this dress, but it is the most unflattering (to me) thing I may have ever put on. To even begin to hang right on me, I would have to grow about four inches. Ha! I'll get right on that. Or I could just give the thing away. Yeah, think I'll just go with that option. 

Tuesday, January 21, 2014

Do You See What I See?

When I look at my baby girl, I see a crazy, adorable, busy, growing, affectionate, smart, funny little girl. Other people can see that, too. She is a whirlwind toddler that does very toddler-y things, like throwing things, whining, fighting with her siblings,  playing with toys, and sharing her snacks with the dog. 

But what you can't see is how much work has gone into teaching her body and brain to do many things that other toddlers "just know" how to do. Like how to "play" with toys. Or tolerate clothes. Or sleep with a blanket.

What doesn't "show" is how overwhelmed she gets by being in new places or around a lot of people all talking and laughing. She seems fine. But all of those people don't come home with us. 

They don't have to physically wrestle her into her car seat as she screams because she wants to run in circles longer. They don't see the bite marks on her hand from her chewing on it. And they don't hear her cry when we pull into the driveway because she finally felt soothed in the car and doesn't want it to stop. 

They don't get slapped or pinched or bit when they again wrestle her out of the car seat and into the house, and be deafened by her shrieks when someone else is holding the cat by the time she is finally willing to stand up. 

Very few people are aware of her "prescription" activities. Especially if they are activities toddlers enjoy normally anyway. But her evening bath is an essential component to her being able to sleep, and her swing is comparable to an anti-anxiety pill. Others don't see the stretches, and joint compression, and reflex protocols we do often, and are supposed to do everyday, we're still trying to get there.

When people do see her, they have no idea that very often she is doing a sensory diet activity. We make almost every activity try to fill some need and maintain her delicate balance. Like me hanging her and swinging her upside down. Or having her carry a bag or backpack that is heavy, but not too heavy for her. Or toting around her sensory snake to help her stay calm and quiet. Or walking her, and walking and walking and walking and walking...

Not many hear how many times a day we tell her to say things so she can keep practicing her speech. Or how every game we play, and back and forth with toys is stuffed with words, all the time encouraging her to continue to speak spontaneously and not just echo our words. They don't see how quickly a couple of bad days reduces her ability to formulate speech and she becomes heavily dependent on signing again to express herself or get her needs met.  They don't worry about how fragile her gift of speech is and that at anytime her words could simply slip away again as they did before. 

Because she looks so much like other toddlers, and her hair is so blond with little spring curls at the bottom, people like to show their affection by petting her head or smoothing her hair. It's a sweet gesture. But... They don't feel her body tense, or see her eyes start darting. They might see her staring them down, but they aren't hearing her message..."don't touch me"...

They have no idea that in public and under emotional strain it's so much harder for her to find her words and that her silence isn't actually her consenting. But that she internalizes these anxieties and it comes out later through behavior, stimming, and unwillingness to comply even with activities she enjoys. 

Most of my regular readers already know, but for those that are new, she, and her older brother, have both been diagnosed with an Autism Spectrum Disorder, and are significantly impacted by their sensory challenges. 

Just like I didn't know before I understood my own children's diagnosis', many people often have no idea of the crushing power of their words when, after I find the courage to mention her diagnosis, though well meaning, they tend to say "she doesn't look like it" or even more heartbreaking, "are you sure?"

Autism and Sensory Processing Disorder are often called invisible disabilities. But in truth, it's only invisible to those who aren't looking, and to those unwilling to see. Because once you know what it "looks" like it's much easier to see. In fact sometimes we parents see it so much that we have to remind ourselves to take off our "autism/SPD glasses" and just soak up our kiddos. Because those of us living with it see it so clearly every day. 

We not only see it, but hear it, feel it, get worn down by it, get beat up by it, but also find ourselves amazed and inspired by it. We live it, plan our hours, days, weeks, months, and years around it.

Here's a few examples of what I mean:


  • You might see a toddler just playing around.

  • I see her avoiding putting pants on because even soft fabrics bother her when she is feeling tired or oversensitive, and also trying to get deep pressure by pulling her legs tight to her chest over and over. So I make a game of it to help fill her need so I can help her feel like a toddler just playing around.




  • You might see a cute little girl in a mismatched outfit having fun making the balls spiral down and assume I'm letting her pick her own clothes and that this is a regular, fun outing for us. 

  • I see my baby in the only clothes she would tolerate that day after several outfit attempts, stimming on the balls spiraling and me carefully watching for the right time to redirect her elsewhere because she is becoming obsessed and possessive and not interacting with anyone, much less the other kids we came with, BUT, considering the last time we tried an outing like this, seven months before, led to me avoiding taking all three of my kids anywhere by myself for months, this time is SO much fun and she is doing great!




  • You might see a cute little girl nicely playing with puzzles and adore her ponytail.

  • Absolutely! She is so cute! But I also see what a huge deal it is for her to be regulated enough to tolerate a ponytail and that it had been nearly a month since she last tolerated anything in her hair. I also am soooo proud of her for not simply insisting on dumping the pieces to every puzzle and then crying until I put them back together so that she can dump them again over and over. Instead she stacked them over and over. BUT! When her friend came in the room and started to do one, Kit not only allowed it, but helped, by handing her pieces! And then went on to settle into working several of them herself, thus transitioning herself  from a stim into a joint and interactive activity with both her friend and me, AND using the toy appropriately! 




  • You might see a cute little pink bundle, and might worry that she's cold.

  • I love this picture! She is so cute and it makes her look so tiny. But when I see her this way it also makes me sad. I see her so oversensitive that she absolutely would not tolerate pants or socks or long sleeves. And it is also keeping her from allowing a blanket to cover her. But she is desperately trying to self regulate, so she curls up into the tightest ball she can to create as much deep pressure input as possible. 

  • And, yes, I worry that she might be cold. I will try countless times to cover her, only to have her wake angry, shoving and kicking the weighted blanket, that took us months to get her used to sleeping under, away. If I touch her skin to feel her temperature, there is a 75% chance that it will wake her, so I make sure the heater is on and have pants ready to put on the second I feel she will let me. Obviously, I'm not going to get much sleep waking up constantly to check on her and be awakened each time she pushes off the blanket again.


***

My point is that like an iceberg, there is far more that can't be seen than can to the casual observer. That's not necessarily a bad thing. It's just a fact. 

When we go out and people see a beautiful, slightly shy, but energetic toddler, they are seeing my daughter. They may smile to see her chase or be chased by a pack of kids with a big smile on her face! I smile too!

If they don't "see" Autism and SPD when they look at her, it's a sign to me that she's comfortable and well regulated, and that all the work we are doing is helping. Not at all out of embarrassment, or because I want her to "be normal". But rather, because it's helping her feel the world a little less intensely, and to focus on just being a toddler, and to revel in her childishness instead of being driven by her body and mind in overload. Because, she deserves to get to just be a kid.

Many people want to be supportive, but are taken off guard when presented with the word Autism, and they are just not sure what to say. So, what do we want to hear when we reveal our kids' diagnosis or challenges? It's totally fine to say any of the following, obviously depending on the situation: 

"wow, I didn't know that" 
"oh! ok, thanks for telling me"
 "I imagine that has some unique challenges"
"I don't know much about that"

...and depending on time and circumstances sometimes the following are lifesavers:

"I can see how much you love your kids"
"he/she/they are beautiful/amazing/so cute"
"your doing a great job"
"is there anything I can do to help?"

...and we are happy to answer genuine questions, so do feel free to ask.

Most of the people I have told have responded with love and support, but I know of so many other parents who have been terribly mistreated, and it breaks my heart. Parents shouldn't have to feel like they have to hide it or, conversely, prove it to others, perfect strangers or otherwise. Especially since there are so many individuals out there who experience far greater impairment, difficulties, and anxiety related to their own or their children's conditions. In so many ways I have it easy, so I feel somewhat responsible to contribute to a kinder view of these conditions. 

And to clarify that if our kids are having more good days than bad, if they are hard to distinguish from their peers, if they are looking you in the eye, or acting "normal", it doesn't mean they have been "cured" or "misdiagnosed" or "outgrown" their neurology. And if they are not, and are having a bad day/moment, that it does not mean that they are "spoiled" or "stupid", or "undisciplined".

It means that every individual on this spectrum has different needs, strengths and weaknesses. It means that they are learning to work with their brain instead of against it. And that to get there took an enormous amount of work, time, energy, sacrifice, often money as well, and did I mention work? Work, work, work! 

A work that is ongoing, but mostly...unseen.

3 for 30 Challenge


Day 20!!!


1.) Threw away all the dried playdough, and the containers with out lids. I can't get rid of the empty ones with lids because these are Kit's "rainbow colors" that she stacks into towers taller than herself.

2.) Our cute little instrument set is moving to Auntie's house. She may regret accepting these when "the band" stages their next practice at her place! Just kidding, she'll love it!

3.) There once was a pretty sun hat...now it's old and ugly.  Nuff said.

Sunday, January 19, 2014

3 for 30 Challenge


Day 19!


1.) A couple of magnet writing boards the kids don't play with anymore. We had three, Grace insisted that she loves them, so I let her pick one to keep and the other two are moving on now.

2.) A cute supply box I got when we bought Zak's Kindergarten curriculum. It has served us well, but has been moatly empty and unused for a while, and its longer size makes it difficult to fit in the places we would prefer to keep it.

3.) Zak's m&m dispenser he bought at a garage sale. He thought he would like/use it more. I'm so proud of him for letting this one go voluntarily!

Ok, we're doing good! 11 more days, 33 more things. Coming soon...my bedroom. EEEKK!!!

Saturday, January 18, 2014

3 for 30 Challenge


Day 16 


1.) A bunch of learning cds we unfortunately never used and they have sat around for three years now. Part of me says you'll use them, you will! But the practical part says, we don't even have a working cd player anymore, just move on.

2.) A velcro toss game we lost the ball to a long time ago and these were buried At the back of the closet. 

3.) A couple of dollies who need a new mama, they are currently being neglected here.


Day 17


1.) If I had to give up my egg cartons then Victor has to give up his "back up collection" of plastic cutlery from various eateries. I saved a handful of the really sturdy ones but the rest are gone. It's ok, Babe, just rip it off, like a bandaid.

2.) A bag of Fuzzy Sticks that a friend of ours will enjoy more than my kids who have had these on their top shelf for months.

3.) A basically new dehumidifier that we bought in our camper days, but has been stored since we bought our house. To the pawn shop ye shall go.



Day 18
 (I admit, I'm pretty tired)


1.) Emerald Green Thinking Putty. I HATE this. It stains everything. I have forbidden the kids from playing with it. Good Riddance! (I LOVE all of the other colors of this brand of putty that we have though, it's a great brand, and I highly recommend it, and they may have since changed the Emerald Green to a new, non-staining formula.)

2.) A scattered deck of bent up spilled on cards that has been incomplete for many months.

3.) A puzzle which was enjoyed, but now sits idle, and so shall go forth to seek a new apprentice...in a galaxy far far away...

Thursday, January 16, 2014

We are Yellers...Hear us Roar

It's true. There is a lot of yelling that happens around here.

Yes, sometimes it's the result of grouchy people annoying or aggravating other grouchy people.

Other times it's because all my gentle pleas have fallen on deaf ears and I've lost my cool. Again. Not my proudest parenting moments.

But many times, so many times, it has a happy, silly, or hysterical wave that carries our voices to the crest of literally shouting with glee. By us I mostly mean them, as in the kids. Because that is usually the case.

A lot of times it feels like that is the default volume of my children as well, regardless of their mood. They are just loud all the time. A great majority of it anyway.

Victor and I can regularly be heard throughout the day issuing reminders to "talk quieter", "turn your volume down", "please speak softer". They do, for the remainder of that sentence or request.  Then the next time they open up to speak, our ears are once again under attack from excess decibels.

After the kids are down for the night, Victor and I, happy for the silence at last, are especially sensitive and gripe at one another about each other's volume. He tells me I'm talking too loud, only for me to tell him the same a few minutes later.

It makes me wonder if this too is seasonal. Whether in five years I'll read this and just nod my head knowingly but grateful to no longer be there, or hang my head and sigh because it's still all too familiar.

It's fairly amusing.  If it were a movie, I'd be laughing.  But here in real life, you might be surprised how many times you would find me covering my ears with my hands.


Wednesday, January 15, 2014

3 for 30 Challenge


Day 15!!!!


1.) A couple of bath boats that have simply been adrift for too long. Hopefully will get much more use in Gummy's tub than ours!

2.) More shoes! These ones are Kit's. Can't believe she's outgrown these already! 

3.) Kit's little pink wagon. :(  It's sooo cute, but she doesn't use it anymore. It's been housing naked dolls, several of which will be spotlighting tomorrow's post (fully clothed, by the way). Good-bye little pink wagon. Hello more free floor space!

I'm halfway there! Yippie!! Only 45 more things to go! 

Little People

Sometimes I look around and I see dozens of little clues scattered all around me of the people that my children are. Through the typical mess of childhood, I wonder how much of it is clues to the big people they will someday become. How much will they carry through from these days and take with them into adulthood? It's fun to think about.



My artist.


My scholar (and cartoonist).


My little gemologist.

Happy Wednesday Everybody!

Tuesday, January 14, 2014

3 for 30 Challenge


Day 14


1.) Fun little books that assist kids learning to read. We returned these to Lela since Grace is now reading like a pro!

2.) An old glasses case that has been buried under stuff for over a year. 

3.) More kids clothes. (And still the drawers won't close!)

Monday, January 13, 2014

3 for 30 Challenge


So we had a pretty busy weekend, most of which was spent trying to find studs to hang up our new shelves. Not even remotely kidding. Bob Villa himself would have been puzzled to say the least. Argh! So frustrating! 

But Us vs. Wall finally ended with us getting four wonderfully functional and space saving shelves installed without demolishing the walls, which was briefly considered at the height of aggravation. 

Nevertheless, the purge continues, so...


Day11!


1.) Wii protectors that we never use and have been sitting in a drawer since Kit ceased using them as chew toys.

2.) Some wax scent things that I bought about four years ago and have never used because they are too perfume-y.

3.) By beloved egg cartons. I hate throwing these away, but I had way too many. Victor commented that they may be the gateway to future hoarding. Bye bye egg cartons. 

***

Day 12!


1.) We have stuffed animals coming out our ears! So I told the kids to pick two each. Thankfully there were no tears, just grumbling.

2.) While it seems simple logic that a broken toy gets thrown away, that logic does not apply to Zak's attachment to his remote control car. I'm including this because it was no easy task to convince him to part with this irreparable part of that treasured toy. 

3.) We are passing on our neglected Flexies to some friends who always enjoy playing them when hanging out here. Happy flexing buddies!

***
Day 13!


1.) Nana passes on her National Geographics to me, and I will now pass them on to another friend.

2.) And when I finish my Reader's Digests, I pass them on to Nana!

3.) Our newest park has a feature I LOVE! It is a book nook! It's a community book trade. A little box in the shape of a library, where one can come to read a book, take a book, or donate a few! I will be donating a few to find new homes with happy readers!

Whew! Happy Monday!

Playing with Toys!

I'm very happy about this mess!


I'm happy because it meant she was doing this...





Playing with her toys! The way they are meant to be played with, mostly!


She still loves her beloved circles most and loves to stack them and line them up and organize the rest by color! But now...


She is finally interested in other things as well! Like nesting her buckets. A very age appropriate activity, even if she insists on separating them by color.



More circles. But...


She loves to play with the dishes now. ALL the dishes, not just the lids. She pretends to cook! And serve! And eat!


She still loves to line things up and count them. But now she's also willing to...




Match pairs instead of only lining them up!


She is a little less frustrated when things don't go exactly her way, like when the train tracks come apart. 


She still loves to sort things by color, but she's also interested in building now. She finally will build block towers instead of just sorting the blocks. 


She is beginning to actively use her imagination. This baby had a diaper rash, so she put diaper cream on her. Nice.  


She now actually plays with other toys in the bath besides just plastic hangers. In fact, her last two baths she hasn't even asked for her hangers at all!


This girl really loves to sort!

But now she loves to be silly too. Her sense of humor is really starting to show, and it is as adorable as the rest of her!


So, yes, I have a whole new appreciation for her messes around here. They are evidence of growth, and progress. Much welcome progress!