Letter to Me: New Years Resolutions

Dear Me,
Last year was kind of a bust. Nothing really happened the way that you wanted it to and you were super stressed 90% of the time. You stopped doing all kinds of things that make your life better and fell into the pit of dispair instead of holding your chin up like you tell everyone else to do. This year, please accept the following as a list of criteria to be met on our next annual review:

Finish reading The BCG Genealogical Standards Manual that is collecting dust on my desk. Its something you're really really really interested in and will enrich your life. With each awesome thing comes a little boring crap.

Yell less. Breathe more.  You stress yourself when you yell - counting to 12 does you wonders. Keep doing that, and add some deep breathing to the mix. It will relax the bunched muscles that stress causes and make you feel *gasp* better. Amazing I know, how do I come up with these pearls of wisdom??

Walk more. Remember - Silas the Awesome Super Trainer says you can - so get off your butt and do it . You used to walk daily - and still can. Walking does not entail walking alone, nor do you need daylight. Take the kids, take the dog, go alone - you'll be surprised at how much better you feel afterwards even though you're panting like a track runner the entire time. DO NOT pat yourself on the back by eating the closest Mars bar. Have a drink of water and smile. That's a pretty good reward actually.

Play the Wii. Its fun. You remember this every time you do it. It also helps give you exercise. Seriously. Play.

Write one article a week. Don't let yourself stay in your writers funk because you're out of practice. Writing more articles on some of the things you belong to can actually give you income. You have a lot to share, you just need to organize yourself and let the words get out. Writing more smaller articles will help. Pick something and GO!

Mentally ground and imprint often - you're missing a lot. When you're overwhelmed you're in your fuzzy patch. You don't remember things, situations, what people say to you and are perpetually on auto pilot. Its bad to do that, and sad too, because you're missing things. Important things, silly things, awesome things - you're missing them. Keep your thought journal again. It will help you to see what you're missing so you can better keep your focus. You can remember every detail of random points throughout your life because you made a point to remember them. Practice that. Don't miss out. You can do this, and you'll be happier for it!

Listen to your doctor - eat less fast burners. Seriously, you don't want to be fat, nor do you want to be diabetic in the near future. The headaches you get when you eat fast burners suck. Your sugar  highs make your mind unstable. You feel better when you eat what you're supposed to eat. Cravings are natural - satisfy them. However, you probably want to stick with eating one reece cup and not an entire bag of them. Take it out, put the bag away and then eat the cup. If its out of reach, you're much less likely to go back for more.

All of these things together will help you throughout the year, but more importantly, they'll help you be more confident in yourself - so that when someone says something negative, or does something that hurts you, you will be better prepared to let it roll off you. Grabbing on to the thoughts that you're a bad person and holding them to you like a long lost teddy bear are pretty bad for you. Recognize that you do that. Recognize that you want to change your life. Once you take a minute to do that, make your plan. Its great for you that I've already done this. Here is your plan for the year, all written out in black and white. Now..

Do it. 

 Much love,                                             

              Me. 

Searching or Helping?

Its Christmas Eve and I've got something on the brain. Am I a searcher?

I've noticed that there seems to be an increasingly poor feeling towards mothers or families who search out help with regards to their children - whether it be medical advice or otherwise. It makes me sad. It also makes me scared, rethink myself, second guess myself and get myself to believe that my initial "helping" may actually be harming.

But is it?

Its so confusing and hard to judge... I guess the most you can do is get educated about your child, what's "normal" and what isn't.  Which I suppose is why I'm always reading and taking notes and seemingly like a woman possessed.

Why?

Because something is "off". Something doesn't "feel" right. My mommy sense is tingling.

Both of my kids have been diagnosed as being on the Autism Spectrum. My oldest is diagnosed as Pervasive Development Disorder - Not Otherwise Specified. She is now 6 and we've been living with her diagnoses since she was about 4. By completing the therapies, learning how to teach her and how she finds the world, we've been able to signifigantly improve our lives. I have no doubt, by her symptoms, actions, and what we've used to help her, that she indeed does have PDD-NOS. When I look at my oldest, I know that life still isn't perfect, and never will be - but I know that we've cracked the code with her - we can get her to understand us, and us her. We understand what bothers her, how she learns, what she can tolerate and what we can work on to improve the quality of her life.

My youngest was diagnosed shortly after my oldest as out-and-out Autism. At 2 years old you'd think it would be hard to tell, but after a few sessions with her, they came out with the diagnosis of Autism with an expectation that she would "maybe recover, maybe not". She is now 4 and after working with her, I'm still not feeling that calm that I have with my oldest. My mommy sense is still active.

So, I spend my time figuring out, charting, recording, and analysing. I NEED to know how to help her. Maybe there is something about Autism that I am missing.

Generally, after I write something down, I throw the issue into google. "How can I help my child who.. "

• Is so very happy, until something sets her off and she's suddenly freaking out like its the end of the world... 
• Likes to just NOT want to do whatever it is that you want her to do. It could be her favorite thing, and she will dig her heels in and NOT do it, JUST BECAUSE YOU WANT HER TO. 
• Is extremely distracted - unable to pay attention to someone talking to her for more than 3 seconds at a time. 
• Is extremely hyperactive
• is extremely impulsive - hitting, touching dangerous things or running away in an instant. 
• is unable to sit still unless strapped into something. 
• is aggressive towards others at random
• calls herself "a bad girl" or a "mean girl". 
• When sleeping, we're unable to rouse. 
• urinates at random - wetting on beds, couches or even right at the toilet. Just simply appearing to "not" go even though she is aware of how and has plenty of time and reminders. Sometimes she can potty like a pro, other times it appears she simply chooses not to. 
• Is bossy with everything and will have a behavoir if things are not done her way
• breaks everything when mad
• Will say she didn't do something, when she did and you watched her - basically lies so she won't get into trouble.

This seems like a lot.. but keep in mind I've been watching it for a while, and these things are completely common in my youngest. Its an everyday experience.

While I was researching, my searches seemed to point me in a similar direction... so now I have an idea of what the problem is. My dilema now is... am I searching? Or am I right?

Now that I have an idea of what it may be, do I take it to the Doctor? Will I be ridiculed for pressing for more when she already has another diagnosis of something severe? Do I live with what she has now, or do I press to have her tested for the potential that she has the issue that my gut tells me she has? Will having another label help? Will having medication help or make things worse?

Do I stick with the devil I know, or press on and see what's behind door number two?

Of people I've talked to about it in my close circle, they are of both minds, and so am I. Do I want to give her another label? Am I simply seeing something that isn't there? If I dig will this help or hinder her progress?

I grit my teeth as I say this, but I have made the decision to contact the pediatrician again in the new year and ensure my youngest's follow up appointment - there I will bring up my suspicion and see what he says.
Maybe he'll think I'm crazy. Maybe he'll be willing to run some tests. Maybe he'll agree with me completely. I'll never know unless I ask. I can't stand by with all the "what ifs" when the screaming "what if" is "What if it can help her?".

After all, my hard work/potential paranoia is not for me, its for her and her potential well being and comfort of life. I won't be here forever, now is the only time I have to lay the groundwork for the life she will lead. Helping her understand herself and cope with things is just one step in achieving that. I have to understand her before I can explain her - and she needs to understand that she's not bad - she's wonderful.

Christmas Concert - Winnie's Big Girl Self Help

Winnie is off to school this morning - that in itself is a feat that was so incredibly difficult last year and this year has had some minor hiccups - but today, its her Christmas Concert. She's all dolled up in a very pretty dress, with her plain, but pretty and noiseless shoes in her backpack (no velcro, clips or hard soles to make unnecessary noise when she moves). Her hair is out of her face and her face is clean. She knows her song and will do her very best to make her classmates proud by doing her part - singing loudly, in a pretty (not silly) tone and remembering all the words.

For a child without ASD - she'd be ready! However, Winnie needs a bit of extra planning, and she knows this - so as we wait for the bus, with my hands over her ears because the sound of the distant (and passing by) cars and trucks seem to set her on edge in the mornings, we go over her "sensory plan".

I remind her calmly that today is her concert, and she laughs at me because, duh.. she already knows that! Check that off the list. Then I remind her that there will be lots of people and it may be very loud. Ah. There's that small look of panic that crosses her features. Getting down low and holding her close to me with my hands still over hear ears, I remind her:
"But that's okay. You can do this. Remember what you can do if you get upset.. what can you do Winnie?" and then she begins her own personal checklist of things that can help her when she gets overwhelmed.

Hopefully this little game of remembering will help her in that crutial panic moment later on in the morning. This is what she thought of, all things that help her, and were rehearsed this morning, standing on the side of the road as we waited for the bus.

1) Breathing deeply. This helps calm her heartrate and gives her something else to focus on for a moment instead of the overwhelming sounds, crowds or lights. We've taught her to focus on feeling (or seeing depending on the weather) the breath go in and out of her body and to do this slowly - although when she panics it is considerably faster than in practice!

2) Letting someone know whats going on! - We practiced this little script a few times this morning. It lets someone know that she's getting overwhelmed, why she's getting overwhelmed and what she's going to try to do about it.

"Excuse me, Teacher. Its so very loud in here! It is making me upset. I am going to hum a song. It makes me feel better."

When Winnie gets overwhelmed, she likes to block out all other sounds. Its why when we're in the car alone or after a bad day, she'd like the music as loud as she can get it. If she's not overwhelmed, she wants no music at all - because it gives her less 'interference' to have to tolerate. When she's visiting a friend and she's overwhelmed, we give her a headset and let her listen to songs or videos from my smartphone. When she's at school though, she sometimes has to improvise, and that's where the humming comes in!

Although, the trick here is getting her to let someone know she's going to hum and why, and to hum something that everyone knows so they don't think she's just that crazy girls that hums. Today, it started out as a song from the computer, but we got her to switch to something more popular that she liked as well -  it was "Rudolph the Rednosed Reindeer".

3) Ask for a break - Winnie's teachers are very good about letting her "take a break" when she gets overwhelmed and just needs a minibreak from other kids. By doing this, if at all possible at the time, she can go someplace quite away from others and let herself "regroup" or "recharge" for some more social time.

Big stuff like today our kids shouldn't miss out on. However, they require lots of preparation in advance. Letting our kids practice self help steps so they know what to do, what's appropriate and that just all out screaming their head off probably not the better option, then reminding them what to expect and how they can help themselves tolerate rough situations, is a pretty good recipe for success!

I have my fingers crossed for Winnie, but I'm already so very very proud of my little girl.

School Motivation and Distractions

I have so much that I want to share, I'm not sure where to start. I've been asked - repeatedly - to write a book. Some from people I know, and some just from people I've talked to with kids on the spectrum. My problem is not knowing where to begin.

There are a few forum websites that I actively participate on geared towards mom's. Some pages that have forum areas specifically for parents of children with ASD. Every day I go on and see if I can learn something new, or share some of my stories.

This morning, someone was having problems motivating their son to go to school. When he did actually get there, he wasn't able to focus and was having major problems at school because of this. It brought me to mind of Winnie at school and the problems we've had.

It was really hard for Winnie to get motivated for school and to keep focused while at school. So far this year though, we've had minimal problems that were easily solved. Here's what we did, and it may help you, or may not. Take its as you will! :)

Getting her motivated to even go was very very hard. It was way more fun for her to stay home where she could have one on one time with mommy than go to school where she had to compete with other kids for attention AND they made constant demands on her. Pfft.. I'd stay home too! That said, we introduced a series of rewards with her which we "shaped up" to the broader rewards we use today.

The first one was getting her to agree to go to school. This started as a daily thing and was given with an easy reward that we could do at home. "If you go to school all day today, you can play your favorite game right when you get home. But you have to go to school all day and if you don't, you don't get your game AT ALL today." - Once she went to school for a full week using this method (switching up the activity so it was still something she wanted to do something she didn't like to be able to get it!) - we moved to "if you go to school all week we can.. " and did small outings with animals or something (here we have a free petting zoo/farm, or we'd go to the pet store to look around at the animals etc). We also use motivators like going to her friends house to visit, going to the park to play on the monkey bars etc. We phased out those rewards for school as well, since now she doesn't have a problem going - its a part of the routine that she likes! Plus we use mini motivators like "Aren't you going to the library today? Don't forget you wanted to look for a book about dragons!" She also used to hate taking the bus. The school introduced a "surprise" motivator. If she went on the bus, she got a surprise (which was a dollar store lizard, or a piece of candy - she'd never know what it was, but was eager to see what it would be that day). If she didn't go on the bus, she didn't get the surprise!

The second thing we had to work on was her focus. This took a bit because we had to figure out what things were distracting her. For this, I still have to rely on the teachers at the school to help me out and they're pretty good about it. My daughter gets very distracted by light, so the teacher makes sure to help with that by closing the blinds on really sunny days and moving things that may be reflecting on the walls. She also noticed that when she would bite on her hair (just put her hair in her mouth while at school) she would be completely distracted and not listen to the teacher. After a note home when this was noticed, I started putting her hair in pig tails and that helped a lot. Now Winnie knows that if she doesn't want pig tails in her hair, she can't chew on it at school - so it lets her notice that she's doing something that distracts herself too!

Having a open communication policy with the teachers at school has helped her a lot so be sure to discuss concerns with them and ask them if they have suggestions as well. Being with our kids 6 hours or more a day, they're pretty decent at suggestions too! We've also used visual prompters too to remind her that she needs to focus on her work. A handheld sign, hand signal or verbal prompt can be very effective. I tap my finger to my chin at home and it lets her know she needs to focus on what I'm telling her and her teacher uses "Eyes up here" as a reminder to her class and it works well for her also.

Life with kids like ours is a lot of trial and error, because what works for some, won't work with others. "Intervention" though doesn't stop when they leave the office of the professionals. Lots of things we'll still have to intervene on to make life a little more comfortable and functional for our amazing little people.

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?"

"Yep"

"Why?"

"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!!