Monday, November 21, 2011

Moved from Facebook - A Crash Course in ABA...

Originally posted in a note on Facebook - Thursday, April 22, 2010 at 7:23am
Yesterday my brother came over to help me out - this was his day two in his help crusade and I was grateful to have his assistance. Winnie had gone to preschool and Maggie had gone to her therapy - when I picked them both up, I could tell they were a little tired. We went to my Mom's house and I let the girls run around to blow of some steam. They ate sandwiches and then it was time to go.

Maggie did her normal behavior where she didn't want to go and basically had me chase her around the yard, then put her in her car seat while she's screaming, crying and doing her best to land a right hook or a good boot to the face.

When we got home, there was a small hiccup when trying to get the girls inside, but eventually we got in with very little issue. Once inside, I asked Winnie to take her coat and boots off, to which she started to whine. So, I reduced the command to one thing at a time - incase she was feeling overwhelmed as is often the case. "Winnie, Boots off please" - Small phrases as I was taught. Winnie replied with "No, I don't wanna take boots off". She then proceeded to flop around and whine some more. I walked to the kitchen and made some coffee.

My brother, not knowing the function of this behavior, tried to do what any normal parent would do - convince her to take off her boots. "Oh, come on Winnie, its easy and you want to make Mom happy, lets just take off our boots..."

While making coffee, I looked at Winnie once and said "Winnie, boots". She whined and cried, but took her boots off. She then asked me for some chicken nuggets. I said that she could have some if she put away a particular toy. Of course, she didn't want to put it away.

Again my brother tried to help out by attempting to convince Winnie that it was no big deal to put the toy away.

The poor man had no idea what he was getting himself into. Winnie then started to cry, then throw things, then scream and become inconsolable. What started out as a behavior to escape the task I was asking of her, quickly turned into a way to gain attention.

As I heard my brother in the hallway with a very worked up Winnie, I could hear his bewilderment in his tone as he begged and pleaded with Winnie - Anything to get her to stop crying as he didn't understand what was wrong or how to help her. I remember this feeling of helplessness.

As he was getting his very first crash course in what can happen any given moment of any given day in our lives, I wrote quickly on a large peice of paper I had posted to the fridge, preparing for when I would see his flushed, scared and frantic face come around the corner of the kitchen for my help.

What was I writing? The 4 reasons an Autistic child (or any child really) has "a behavior" - not necessarily a good behavior, not a bad one - anything can be one.

Those reasons? Well, lets take a S.E.A.T :)

S - Sensory - They can be doing a behavior because they like how it feels or makes them feel (flapping their hands, spinning around in circles, hopping up and down etc).

E - Escape - They don't want to do whatever you asked them to do - their behavior is to make it so they don't have to do it.

A - Attention - Their behavior is so you'll pay attention to them.

T - Tangible - They want something from you.

Tangible can sometimes be a hard one and my brother didn't quite understand it - so I gave him this example - If Maggie throws her cup and you pick it up and ask her "Oh, you want some juice?" then give her some juice, she will learn that when she wants juice, she can throw her cup and you'll get it. Every time she wants juice, she'll throw her cup.

So as my brother stood in my kitchen, I taught him the fundamentals of behavior - with Winnie behind us screaming and throwing things at me - with me calmly ignoring the bits of paper and small toys that were hitting my back.

"So you're just gonna ignore her doing that?"



"Because the function of this behavior started out as 'Escape from what I asked her to do' and is now 'I want your attention'. But Winnie knows this is not an appropriate way to get my attention..."

"Well what do I do if I don't know which one she's going for?" he asked, looking a bit nervous, but calmer.

"Oh that's easy!" I smiled, "If you don't know what to do, just ignore it until we figure it out." He nodded his understanding, looking like he was feeling a bit better even though Winnie was still screaming her lungs out behind me and throwing the odd toy.

We both calmly walked to the living room and he nervously sat down as he waited for my lead. Winnie quieted down almost immediately when we left the room and it became obvious that Uncle Pete had been schooled now and would not be giving her the attention she was seeking.

A very short while later, Winnie was calm and "stimming" a bit - doing a movement that provides her comfort - like when a child sucks their thumb. This is like a neon light for an autistic parent to let them know that their child is overwhelmed (Which really, at this point I didn't need!). Pete was calmer too, although looking like he'd just discovered something huge. I smiled to myself, happy in the knowledge that I'd helped my kids - and I'd helped my brother too - and spread the awareness.

Moved from Facebook - When your little kid seems so big

Originally Posted in a Note on Facebook - Friday, March 5, 2010
The other day we were having a disagreement in our house - The girls wanted to play, and Momma wanted to clean. Correction: Momma needed to clean before pigmies took root in the hurricane disaster area that was the livingroom. The girls had also decided that nap was not an option - which happens sometimes, but last week happened more than most as a result of the changes in the girls' schedules because of March Break.

I tried in vain to pick up overturned toy boxes, crayons, bits of paper and other small things that got spread over the carpet in the last few days. Filling a box invited Maggie to dump it out, which got Winnie excited and they all started running around making more messes because, well that's just funny.

I stood in my livingroom watching them, getting more upset by the second. I kept nagging at them "Don't do that! Oh gosh! Can you pick that up??!! No no, not that thing I just put away!!". Finally, Winnie stopped and looked at me, realized that I'm not actually playing with them and having fun. And she began to cry. Not a fake "oh this is not fun" cry, but a "OMG I RAN OVER MY KITTEN WITH MY BIKE AND THE WORLD IS ENDING" cry.

Probably when this happens, a normal parent would want to coddle their child "Oh Suzie! What's wrong!! Don't cry!!!' But my kids can't usually answer to "What's wrong" especially when they're upset. They just can't find the words. I turned off the vacuum, took a deep breath, walked calmly over to the couch and sat down. I told Winnie (who was still bawling) to come over, and I calmly picked up her and put her on my lap, so that our faces were level. "Winnie? Are you frustrated?" I said. She took a huff and in between her sobs she said a heartfelt "Yes!". I nodded solemnly. "Yes, I thought so. Momma is frustrated too. How about we try our big breaths together?" and she said "Yes". So we started, taking our big cleansing breaths and blowing them out so our cheeks puff out and the air blows our hair around - which, to Winnie is the funnest part. Just this action takes our minds off our frustration for enough to let us rein ourselves in a bit.

After our breaths I said to Winnie "Winnie, do you want to play?". "Yes!! I want to have a party." she said. Now that she was calm, she could tell me a bit more of what she's thinking. I nod again and say "But we aren't having a party today. Momma has to clean today." to which she replied "Yes. A party. Just us. At momma's house." Oh good. A party that I don't have to invite people to. This I can do. Translation: Winnie wants to play, and she wants to play with Maggie and Momma. That's enough of a party for her. I told her "Ok. We can have a party. But first, Momma needs to clean.".

She jumped off the couch and said "No! You stay there Momma."

Feeling like I'd lost my hard fought battle and was not going to get the compromise I was hoping for, my shoulders slumped. Apparently seeing this, Winnie stopped and tried again. "You stay on the couch Momma. Winnie." and tapped her chest.

Confused, I made to get up. She comes running back "No momma, stay couch!" and runs back over to the vacuum cleaner "Winnie. Winnie this.". She stops and starts again, very obviously having trouble to say what she wants - to make me understand what she's trying to tell me. "Momma. Stay on couch. Winnie do! Winnie help! Winnie vacuum!" and starts to pick up the vacuum.

I ask "You want to help momma and vacuum Winnie?". I am greeted with the biggest smile and look of relief I've seen in a while. "Yes Momma, Winnie vacuum".

The next 20 minutes were a game, with the vacuum. Winnie helped vacuum the whole livingroom with me helping pick up straggling toys and Winnie doing her best to direct my efforts to where she needed them. When we were done, we were rewarded with Popsicles and games - and momma needed a small time out to breathe in and out and not cry at the wonder of her own child.

Understanding is one of the many things we all learn as we grow up. How to understand ourselves, others, their feelings and our feelings - and to know that your child understands what you feel and wants to help just as you want to help them is an amazing feeling. That feeling, and one of supreme gratefulness has flooded into the past few days for me. And brought to light once more how a seemingly small kindness and act of understanding and acceptance can have a gigantic effect on another human being.

Moved from Facebook - A thank you

Originally Posted on Facebook in a Note - Friday, July 10, 2009 at 9:47am

My Mom has announced that I've finally become a mother. I've discovered that in order to get any real work done around my house I have to get up before my kids do. Apparently that's something that the mothers in the rest of my family had already figured out. Thanks for sharing...

I can not rave enough about the changes in Winnie since she started Autism Intervention. She's like a completely different kid! Ok no, wait. Back up. She's the same kid. But she's *HAPPY*. Why? She can communicate better. Not fantastic, but better!! When she needs help, she says "Help" instead of just crying or freaking out. When she wants something she doesn't drag us in front of the fridge and point, wait for us to pick up the wrong thing, get frustrated, point some more. She says "I want drink of milk". Plain. Simple. Something that she couldn't do before. Laughing, giggling, playing, hugging and snuggling are now part of our everyday. Tantrums and behaviour issues are rare instead of the every day (or every hour) occurrence that they once were... I am so grateful to the staff at the centre, and for all of those who made possible the service.

Her support worker asked us "What would you like us to work on next?" - We were like.. uhm.. well.. you've done such a great job that you do whatever you think! We're so tickled pink we wouldn't even know where to start!

On Canada day, I took Winnie to the fair in Oromocto. We went, we got in rides (winnie got on a lot by herself too!), we had food, we went on some more rides, and we left. We did all that without any tantrums. *Once* and once only Winnie started to get worked up. She caught herself - and you could see her struggling to maintain control - and avoided a catastrophy. It was... AWESOME. Or as we all announced that day (Winnie included) - "That was Super Awesome!!".

I was never more proud. Way to go Winnie!!

Moved from Facebook - A good start

Orignally posted in a note on Facebook - Sunday, October 25, 2009 at 8:34am
Usually, I get up before my girls do. But on the weekends, I tend to lay in bed and listen to them play in their rooms, running from room to room - the pitter patter sort of calms me before the begin of the rushing weekend.

This morning, the playing began, just like normal. Except this time a little head popped into my room, smiled and said "C'mon momma! I made animals! Lets play!".

Smiling, I got out of bed, went to Winnie's room and sat down on the bed, waiting to see what kind of "animal play" we had in mind today. She had set up a little room for the dino's and we were just walking the dinos around. "Here momma, you have the giraffe". Not a dinosaur, but good enough for me. I take the giraffe, smile and do the walking around. Lost on the names of them (again) I ask "What's this one?" - Winnie proceeds to paitiently explain each of the animals names (some she actually made up herself!).

We play like that for a while, the animals going around and around and at one point one riding the other one - "Look momma, the little foot is riding the giraffe!".

Eventually I politely ask, "Winnie, momma needs a coffee, is that ok?". She turns to me, smiles and says 'Ok, thanks for helping me play momma". Flabbergasted I say "You're welcome honey, that was fun!".

Its amazing the things we take for granted and also the things that hit us hard when we're not watching. 6 months ago Winnie wasn't able to talk to me like that, and now that she can (although there is still much work to be done), I am so grateful. Its a good start to a Sunday.

Moved from Facebook - Waiting for the Juice to Spill

Orignally posted in a note on Facebook -  Monday, November 23, 2009
Last week Maggie and I went out for a little girl time while Winnie was in therapy. We went to the mall, looked at toys, looked at shoes - basically - we had a ball! Maggie loves toys AND shoes. Watching her in the shoe store with the bright red glitzy size 8 womans pump on was just priceless. Her shoes were almost more flashy than her smiles - almost, because nothing can outshine them.

After all of our exhausting shopping, we decided to have a drink and a snack. We got muffins and apple juice and sat down at the table (with Maggie in her stroller). I was concered with preventing Maggie from spilling or dropping anything so I arranged everything just so - Her juice on the table within reach, her muffin in my hand so I could give her small pieces... So concered was I that I forgot about myself. I sat down, still looking at Maggie, checking to make sure I had nothing out of place. As I turned around my arm caught my drink and it went flying, spilling all over the table and the floor (and even getting a little on Maggie!).

We laughed and cleaned the whole mess up, giggling and eating and wiping. But it occurred to me how often in life we do this. How often we're always watching for someone else do to do something, watching for someone else to do wrong, or someone else to make a mistake, when we should really be doing our best to watch ourselves.

My plan is to work on changing the focus from outside to inside - do what I can to be better, to be more prepared - removing the external focus, while still holding those items in my range of vision...

Its life's little moments that just make you stop think...

Wednesday, November 16, 2011

Moved from Facebook - A good explanation on Stimulus overload

Originally Posted to Facebook as a note on Tuesday, December 1, 2009
The best explanation I've heard yet...

To understand [autistic children's sensitivity to simuli] further, have someone lead a game of "Simon Says" with you with the expectation that you must remain mute throughout but participate and attend fully. The catch is, while that's occurring, someone else needs to rapidly flash the lights in the room on and off at the same time another person is drowning out your leader with static and loud music from ever-changing radio frequencies. After less than a minute, you'll feel like giving up, throwing a "tantrum," or running out of the room because of the way in which your senses are being assaulted. This is how a person with sensory sensitivities may feel. If you were a child with autism and acted out those behaviors in a classroom, you'd be called "noncompliant" or a "behavior problem."

From: The Autism Answer Book: More Than 300 of the Top Questions Parents Ask
by William Stillman
Sourcebooks © 2007

Moved from Facebook - A Gamer Mom's Analogy to Children

Orignally posted in a note on Facebook - Thursday, December 31, 2009
(Note: my kids are now 6 and 4, so.. we made it another two years, and it DOES get better!)

Now that I'm a mom of a 4 and 2 year old, I find I'm prone to giving advice to new and soon to be new Mom's. From a generation of video gamers, this is my analogy for children...

Babies, are relatively easy as they have so few wants. Babies are like level 1 parenting. If you can handle that, you get Level 2: toddlers, if you can handle that, you get Level 3: school children, if you can handle that you get The Boss Level: teenagers. After teenagers you pretty much beat the game and get the perks of winning (even if its just that they move out ;)).

That being said, level 1 never seems that easy! You're too busy learning about the controls and how to navigate the game!

The good thing is, they DO come with a help manual (most hospitals provide the free children's encyclopedia), 24 hour Tech support hotline (your parents and friends and the nurse's hotline), and some interesting quests to complete (The Quest for Less Gas is always a challenging one..).

So get ready - you're in for an adventure!

Moved from Facebook - 300 Words is Not Enough.

So I've been getting a few requests lately about sharing my experience of raising my princesses and I went through this blog and realized that its missing some of my first posts, which were made to Facebook directly. The next series of posts will be backposts with the dates they were posted on facebook. I hope they help.

It all started because someone asked me to write something to be shared at an event about Autism Awareness. They requested that it be 300 words or less... unfortunately 300 words were just not enough.

Originally posted to a Facebook note - Wednesday, December 30, 2009

The good thing is that I know everything that she’s done all day; the bad thing is that I know everything she’s done all day. My daughter has delayed echolalia, which means that she repeats whatever she hears, only not immediately. It used to be random. She would start talking and say entire dialogues from movies, or what her grandmother told her that day. But ask her if she’d like some waffles and she wasn’t able to say “yes” or “no”.

Now, she has learned to play with toys in “imaginative” play, and can say "yes" and "no" to simple questions, but sometimes she floats back and simply repeats and entire day’s worth of dialogue that she has overheard.

Movie dialogue used to be the only way she could communicate. If she was sad, she would say something “Franklin” would say when he was sad. If she was happy, she would say something “Dora” said when she was happy. She still sometimes repeats dialogue that she has heard, but thankfully now that is not the only thing she can say.

We had a cold night last night and I snuggled under the blankets to sing her to sleep. She likes her back rubbed and so I started to rub and sing. She looked up at me, not completely looking me in the eye, and said “Momma, your hands are cold!”. I beamed at her and we joked about my cold hands. Inwardly I was singing. She has known my name for a while, and has known what “hands” are. She is just learning about “Me, my, You, yours” and she is just learning “Hot and Cold”. Putting all of these together to form a complete sentence with meaning and context has been months in the making. So much practice, scripted play and long hours and my oldest can finally say a sentence. This may not last but I glory in the moment. 5 minutes later I may be greeted with frustration, “jargon” instead of real speech, and a good right hook or two. But for now, this moment is ours. We’ve worked so hard to get it.

My everyday is filled with slaps, screams and tantrums. My daughters are 2 and 4 and both are “on the spectrum”. One is verbal, one is not yet. Both developed normally until about 12 -18 months. Both are constantly frustrated about not being able to properly communicate with the outside world.

Most people, when they see me with my children, say that I have the patience of Job. I don’t, for sure. And it didn’t always seem that way either. But it’s amazing the things you can do because you have to, the things you’ll do for your children.

The struggles we have involve things that most parents do every day. But we do it to an amplified degree. We keep them safe, we teach them, and provide them unconditional love. Keeping them safe is harder, teaching them takes longer, and the love – while no less than the average parent – puts “unconditional” to the test on a daily basis.

Keeping them safe for us is not letting them bite themselves, bang their head on walls or let them run away from you when they are frustrated, because they are not aware of the world around them and may get lost.

Teaching them for us, is showing them for the (literally) 200th time how to do “simple” tasks, like sit in a chair, with patience and love in a way that they are never allowed to fail and become discouraged.

Unconditional love for us is ignoring when your child bites or slaps you and immediately responding with a hug and a kiss when she stops.

In our house, we call them “The Hurricanes”, “The Divas”, “The Ladies” – all characteristics that they posses for sure.

The Hurricanes, because you always know when they are around - everything is a mess. The Divas, because everything must be a certain way or tantrums ensue. The Ladies, because they are indeed little ladies who like frills, cuddles, kisses, feather boas and pretty shoes.

Life is harder for them than it should be. All we can do is help to make it better.