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!!

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...

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.

When did the wading pool turns into an ocean?

I have started to think about what to do next... Maggie is getting into a routine, she's for the most part "handleable" in the mornings, Winnie is at school and Maggie will be out in the afternoon at her ABA therapy... so now the question arises - What else can Mom do to better herself and her family?

I admit, its a bit like I'm stepping out of high school and the world is opening up again, but I'm a lot older, a lot less gung-ho, but a lot more... driven. Its as though, when I was 18, I jumped into the life pool and flailed around, making lots of noise, but only getting halfway across the pool even though I put in a lot of effort. Now, it feels like I'm content to use my aged body's buoyancy to float across, with some quiet paddles in the direction I'd like to go. But the pool has turned into an ocean, and I'm not really sure what direction to take.

The downside is that I'm completely indecisive, the upside is that the world actually is my oyster. Do I want to go back to school and finish one of my degrees? Do I want to get a job? Do I want a full time job, or part time job? Do I get a job in the field I was working in, or do I want to do something completely different?

What do I want to do? The question has me baffled and thinking... a little depressed and a little optimistic... And surprisingly... free.

July 1st - The day of many emotions.

Yesterday I cried.

Yesterday was Canada Day. The day was filled with lots of things to do and the girls were excited from sunup to sundown. They knew it was a special day and Winnie hounded me to go from the time she opened her eyes. "Momma, I need clothes! We're going to the fair!" Yes, the full sentences, appropriate context and excited... normalness that I so enjoy! It was wonderful to hear, even at 6:30 am.

As we got ready and piled into the van, we went over and over our plans for the day "We're going to go watch the parade, then go get lunch, then go to the fair, then go to Grandma’s for cake, then go home, okay? Everyone understand?" This could not be repeated enough. This repetition may save the day. Preparation is essential, for us and for them.

Arriving at the parade route, we picked a spot on the grass, thankful that we’d found a good spot where the girls could see – the last parade we went to was very crowded. We laid a blanket out and they sat on it, getting up to run in the large grassy area behind us, Grandma and Momma at the ready to run and pounce if things started out of control.

And then the bands came. The girls sat wonderfully on the blanket and watched the entire parade, Maggie needing a break only once during a lull to roll and twirl, then coming back for the remainder of the parade. They tried very hard to remember to wave and say “Happy Canada Day” to the passers by, and accept the candies, flags and other objects given to them by the parade folk with a quiet and awed “Thank you” if they remembered. They tried so hard, and enjoyed it so much. The parade was a success!

Heading back towards the van, my heart stopped as Maggie and Winnie took off towards the van, relief consumed as they stopped at the van, then dread once more as the time it took to open the van was slightly too much, they ran into the busy parking lot. Dropping everything I ran to corral them, shuffled them into the van, buckled them in, and then sagged into the front seat and closed my eyes as relief once again washed through me. Breathe. In. Out. Breathe.

Lunch was much as it is every time. “Chicken in a bag” which sometimes actually comes in a bag, sometimes in a box, sometimes all together in one giant bag… luckily that’s not such a concern now as it used to be. Switching up a kid’s expected lunch from a box, to a bag, to no container at all might not matter for most kids, but for mine, it could be catastrophic, causing a meltdown of epic proportions. They just want what is expected. They want things the same each time. So they know what’s coming. They need that, but they need to learn to that some things they can’t expect, and thankfully our trips to McDonald’s weekly has helped them to understand that some things might not be exactly the same each time, and that its ok. Right now though, that only applies to McDonalds… the trick now is to stretch that to other things, ‘generalize’ the professionals call it, and we’re slowly doing that.

Next was off to the fair, blaring various tunes that Winnie gets to dictate along the way “Can I hear YMCH?... love don’t cost?... Rockstar?... We like to party?” Thankfully if you keep clicking ‘next’ she can tell you the exact one she wants, within the first two seconds of the song she knows if it’s right. They’re hard to figure out sometimes as the names she calls them are simply some of the lyrics, and perhaps not the correct lyrics, but she’ll sing a bit to help you figure it out. She’s good like that – she understanding that you might not understand her, and she doesn’t get as upset as she used to when you don’t understand what she wants at first. We’re all learning patience.

My mom, the savior, had tickets already for the fair. The girls waited as patiently as they could in line for the first ride, picking out the ponies that they wanted on the carousel. Maggie looked all around her, bewildered at all the sights and sounds, the colours and motion, her head swiveling around to take it all in, her attention constantly caught by things we don’t notice – like the colours twirling above our heads. More than once she forgot herself and let go of the horse, leaning back to look up, her eyes blinking as she tried to process the things around her. I have never been more thankful that I was there with her, my hand on her back ensuring she didn’t fall off, my voice by her ear reminding her to hold on, bringing her back to us, asking her questions about what she saw so that she just wasn’t in this by herself, in her own world.

More rides – Winnie came with an agenda – Ferris wheel, roller coaster and games were on her list. Grandma also came with a plan – rides first, then games, then take some candy to go home. If we did them all mixed up together, how would they know when it ended? They wouldn’t. Hopefully this plan would work.

Mom and Grandma standing close by and watching as the rides moved, ready to spring when they stopped. Carnies, not quite understanding why the Maggie doesn’t follow directions (or even notice that they’re there), stand by and chuckle, until we say “She has autism and doesn’t understand you.” They step aside so that one of us can skip in and get her attention, hold her hand and walk her out.

Winnie gets upset that her favorite toy and friend can’t come on the rides with her, her disgusted face and folded arms last only until the rides starts to move. Then the smile that I love lights her face as she grips the steering wheel with vice-like fingers until the ride stops.

More at ease as the day continues, Winnie starts chatting up the girls and boys around her, trying her best to make conversation. They seem to be responding to her and she smiles, happy to be able to talk to them, even a little. Just before we leave, she sees a classmate and stops to say hello, Grandma is bewildered at first, until Winnie politely introduces “This is my friend Purity from lower Lincoln. This is my grandma”. Grandma turns to me and beams happily “That’s Winnie’s friend Purity” she announces proudly.

Maggie and Winnie try their hand at popping balloons. 3 darts each, Winnie gets two! Hooray! Maggie tries one and falls short, Momma takes the second and pops one to ensure she’ll get a prize, Maggie tries the third after a bit of instruction, but still falls a bit short. The girl hands her a piggy which she grips happily, hugging and cooing at her new friend. Tucked under her arm, she comes away happily as we head for our last stop, cotton candy.

Momma and Grandma hold their breath we begin to leave the fairgrounds, our minds on last year. This was where the tantrums started. The long walk back to the car is met with success, excited girls talking about the fun they had, the rides, the colours, the candy… they had a good day. Snapping them into the car seats, momma once again sinks into her seat, and the silent tears of thanks prick her eyes.

Heading to Grandma’s for a bit, we have some cake and things start to break down a bit. To be expected, it was a long day and they have reached their point. The running, the crying, the hitting has started. The entire car ride home from grandma’s is filled with screaming meltdowns by both parties. We get them into the fenced in yard with complaints and screams.

A distraction helps, they sit down, still agitated, to watch a new movie. Calming down, they slowly fall asleep, bundled up together in a pile on the couch. The long day was fun, exhausting, overwhelming and awesome. Momma sits again and cries quietly, happy for the day, sad for the meltdowns, thankful that progress is being made.

Happy Canada Day.

A little bit of history

In honour of St Patrick's day, I'm sharing the story of one of my links to Ireland - my great, great, great, great grandfather, John Johnston and his emigration to Canada.

Born about 1815 or 1817 in Ireland, John Johnston grew up likely on a 7 acre tenant-farm in the township of Drummal, near Castle Archdale in the parish of Derryvullen (Irvinestown) in the county of Fermanagh, Ireland with his father John, mother Catherine and his three older siblings, Elizabeth (b. approx 1811) Thomas (b. approx 1813) and Mathew (b. approx 1815), and one younger brother, Edward (b. approx 1820).

(image of an example house from the area and time – borrowed from another blogspot blog)

John grew up and married a woman named Sarah HUNTER (Church of Ireland Marriage License) in 1838 when he was about 20. He also was a farmer, likely on a plot on his father’s tenant-farmland. They started having children immediately, registering them in Derryvullen. By the time the Great Potato famine hit in 1845, they had Thomas (1837), William (1839), Catherine (1841), Margaret (1843) and were expecting baby Mary (1846). One can only imagine the plight of a rural farmer in Northern Ireland at this time with 5 children and a pregnant wife dependant on them.


1847 in Ireland was the height of the Great Famine, being referred to as the Black ’47. Starting in the first of the year, the suggestion to emigrate to “The Northern Colonies” was promoted in Ireland as a relief measure to the starving population and by June, John Johnston and his young family are among the 1 million families that would make the desperate voyage to North America. John secured passage for himself, his wife, his mother and 5 children from ages 6 months to 10 years on the brig “Progress” out of Londonderry – about 55 miles away or what would be about an hour and a half drive today over rocky, mountainous terrain of Northern Ireland.

(An example of a brig from this time - borrowed from here)















The Progress carried 138 passengers for 48 days and arrived in Saint John, New Brunswick, Canada on June 5, 1847 with 5 dead. The passengers progressed through the Partridge Island quarantine facility, but it’s currently unknown how long they stayed there, if any passengers were diseased or ill and if any perished after landing at the facility. It is likely a rather uneventful voyage as there is very little record of it. The luck of the Irish was with this particular vessel and family in the trying times of famine and disease.

We can find little about this family until we see John and Sarah in the 1861 census. They have made it up the Saint John River about 70 KM to Hampstead, New Brunswick (which would be about an hour drive today) and are farmers in the community. 15 years after the famine, John, now about 45 years old, lists only his wife and two oldest sons, Thomas and William, as living with them. William is listed as 20 years old and still attending school, while Thomas is cited as being deaf, dumb and idiotic or mentally incapable. This year Margaret married James Donald, being 18 years or slightly younger. The oldest daughter Catherine, and two youngest, Mary and Jane, are not present in this census. Mary and Jane are both found at a later date, but Catherine is still missing. Its unclear where Mary and Jane are, but its clear that they’re not living at home. Perhaps they are in a neighboring farm, assisting and learning with the farm’s matrons.

In 1871, we find William married with his own children, but also still responsible for his older brother Thomas and his two youngest sisters, all listed as living with him in the 1871 census. The family appears to be close knit throughout their lives.

I will continue researching this particular branch of my family, but I thought due to the holiday I'd share what I had discovered so far. Enjoy! (if you'd like to know my research sources etc, please drop me a line and I'd be happy to share).