Daisies in the Walkway

Today was a rough day for both girls - its the day after Daylight Savings. Where the rest of the world is an hour earlier than their little bodies are. Maggie's internal clock went off today right on time, and she roused me awake an hour earlier than she needed to be. Confused and getting angry with me, I finally conceded and got up to feed her breakfast an hour earlier than normal, taking everything as slow as possible so as to not upset her morning routine more than necessary.

Winnie tried her best to stay in bed, but just couldn't, and followed us out to the kitchen shortly after.

The rest of getting ready went much the same, slow paced, but something a little "off" and I knew they'd be fighting the whole day to keep it together, and by the end of the day they'd have had it - their bodies having given up an hour earlier than school let out.

At 2:30, when the bus backed into my driveway and the doors squeaked open, the driver's face told all as she turned to me to impart that they'd both had a rough ride. She wasn't sure what was wrong, but they had a hard time getting either child to get on the bus at all.

Both girls quickly bounded off the bus, although their movements let me know they were certainly exhausted. Winnie flopped on the grass and waited for me to clear the bus steps, then lept at me, clinging to me and growling like a little beast - I hugged her tight and held her too me as Maggie loudly began her neverending speech about anything and everything - a trait she has to try to keep under control all day at school. I looked down at Maggie and nodded as she spoke, then whispered to Winnie, asking her what animal she might be pretending to be. Normally when she was upset or had an angry emotion, an animal is what she turns herself into - prowling and growling with gnashing teeth and extended claws. Usually asking her about the animal she's portraying calms her and gives her something else to think about - Not this time. She ignored me a few times, and then growled out that she wasn't an animal, she was just a Winnie, and an angry Winnie.

My heart sank. I wouldn't be able to help today like I usually do. I wouldn't be able to snap her out of this as before. It was a rough day, and it wasn't over yet.

After some prodding, Maggie let me know that she was just tired and cranky, and Winnie had a new "teacher helper" that didn't do what she'd expected. And anything that doesn't go as expected, is pretty catastrophic in her day. She can tolerate someone new usually, she's learning to cope with that - but working all day and not getting the expected result, she pretty much flew off the handle.

Winnie's greatest desire at this moment was to go to the Dollarstore - and Maggie just needed to be alone.

We went to the Dollarstore, while Maggie stayed home with Grandma to try to calm down. Winnie and I also ended up getting some chicken nugget supper at A&W (a big step from the days when it was only McDonald's that was acceptable.). As she sat there reciting an entire episode from a Netflix documentary about reptiles, I was reminded of when this was all she said. Doing this, repeating, reciting, being lost, was all she did.

My heart ached and I wanted to cry. I sat in this public place, looking at my child with love and affection, nodding as she spoke as though I was listening, and all the while, my heart was breaking. We've come so far, and yet, days like this can set it all back. Days like this make me realize that although she can hide it, she will always be autistic. She will never be cured, she will only learn to cope. Just like everyone, she will have hard days where her defenses and guards and coping skills will be lost to her, and she'll be lost to us.

Maggie is the same, in her own way - her defiances are her own way to keep order in her world. When she's struggling hardest, is when she is most defiant.

Some days we glide through, always conscious of the hurtles and the issues - but some days are like a shower in ice water and I struggle just to breathe. And then we get through it, and they smile at me again, the far away look gone from their eyes. A moment of clarity that makes all the difference and almost erases the bad day. Some days Autism is like the meter maid that's fining you for getting back to your car late. You're mildly annoyed. Some days, Autism is like the Repo Man who puts the lock on your house - you're overwhelmed and devastated  And some days, Autism is just that funny quirk that your child has that makes you smile - the screen that their personality shines through like a happy daisy creeping through the stones in an elaborate walkway.

Somedays. Someday. Today. I'm glad its over.

Winnie and Maggie ended the day splendidly and seem no worse for the wear, just tired. It was a hard one, but something we've overcome before, and will do again. I'm happy that days like today are fewer and farther between than in the past. :) 

Maggie Starts Kindergarten!

Its been a good while since I've posted anything other than various kid quotes or quick situations on my facebook page. If you've been reading those, I'm glad you've enjoyed them. My lack of posts certainly hasn't been due to lack of things to say, but rather, the time to say them properly. This last little while has been hard. Lots of changes throwing the girls for  loops and my exhaustion level so high that I really didn't feel like writing.

But today, is the start of something new. Today is Maggie's first day of public school. My little kindergartener shuffled off with excited hops, bobs and random squeals to her first day of being "a big girl". Months of prep, for her to be ready to go, and for the school to be ready to recieve and accomodate her needs, are put to the ultimate test today.

The school has had two years to get used to Winnie's nuances, and they were excited at the prospect of Maggie joining the ranks. Putting them on their guard was an interesting task - because with Maggie and Winnie, the old saying familiar to those in the autism field comes into play... "if you've met one child with autism, you've met ONE child with autism." - because Maggie is completely the opposite. Everything they used to deal with and help Winnie in her learning, will in no way be applicable to how they help Maggie learn and adapt to the school environment. Although they've been cautioned, warned and educated on this - today, they'll see it first hand.

I remember when the girls were babies and imagining what it would be like when they went to school. I remember dreaming that I wave as they got on the bus and sat down, then slumped back to bed with a smile to catch some extra hours of much needed sleep. I could never have imagined that I'd have to hold hand so tightly so that my kids wouldn't bolt in excitement as the bus arrived, or hop on the bus to buckle my rambuncious 5 year old, unable to sit still on her own, into a 5 point harness in the front seat, or that I'd sit here, on pins and needles waiting for the phone to ring, praying that everything goes well and they come home safely.

As Maggie smiled up at me, and Winnie did her best to coddle her little sister on her new adventure, and show her all the things that she enjoyed about the bus, I burst with pride. Look at them go! They're so amazing! They've come so far!

I drove to the school after setting them on the bus, just to reassure myself that everything went smoothly and the school was prepared. Its days like this, the big days that are big for everyone, that I tend to be more glad that my kids are special. Not that all kids aren't special, but my kids have "the label" that no one wants to give. I like that people understand that my kids may not "get" what's going on - they may need things explicitly explained, they need an extra eye to make sure they don't wander and they just need... more. Because they need more, I need more. I like knowing all the people involved in their day. I like that they know me. I like when they explain things, and I love when they ask questions.

And, oddly enough, I like that my kids are special together - that they understand one another and, although they can sometimes use this knowledge to annoy eachother, they can also use it to comfort and help. As Maggie hopped into the school, always in direct contact with her EA, happy and bubbly - and Winnie, reassuring me that all would be fine as I waved them inside on their first full day together in school - I breathed a sigh of relief that the day started well. I need this breath before the edge of anxiety creeps back up to claw at me as I wait to hear how their day went.

I've done all I can to prepare everyone. I have confidence that all will be well, but anxiety over the actual outcome. But I know, they need this. They can do this. I can do this. Just Breathe.

The Stranger

The last few weeks there has been a bit of a scare about a stranger lurking in the town where my oldest goes to school. Many memos, notices and bulletins have been broadcast about the individuals and we've been cautioned to remind our kids about the dangers of strangers. "Stranger Danger" and wagging fingers abound in my neighbourhood. But for kids like mine - "Stranger Danger" may be sending the wrong message. Well, perhaps not wrong, but confusing.

Our kids have a hard time making friends, and tend to prefer adults who may understand them better than children. That said, they don't always have the instincts that tell them something might be wrong, or they do, but aren't able to express them appropriately. We've so often forced them out of their comfort zone in an attempt to get them to socialize, that suddenly telling them that all strangers are potential child snatchers and to assume they're all bad until you know them, may actually be sending a mixed message.  I say "suddenly" even though we've tried to teach them that some people aren't good for them, but they've likely rarely come across someone who was really bad - instead of perhaps just didn't like them.

My kids have problems understanding that if they stand in the street, they could get hit by a truck let alone that some people may be out to do them harm. I struggled with how to explain to them to be wary of others, without them leaving with the understanding, and perhaps added confusion, that strangers are usually bad.

So, without any further adieu or explanation - here is my home grown social story about Strangers: What are Strangers? - A PowerPoint (but printable) presentation. Enjoy and please let me know what you think, or if I made any errors. Comments are always welcome.

The Autism Mom's Divide.

I was checking Facebook today and saw this posted to an Autism group. Its apparently an "Autism For Dummies list of dos and don'ts" taken from a website. Sometimes I find I disagree with some other mom's on some fundamentals and this is just an example of that.The post read as follows:

AUTISM FOR DUMMIES...
Here are a few things you need to know when dealing with kids with autism. Those of you that have typical kids, or love someone with autism, please take note:

1. Please don't say to the parents, "can't you just". No we can't just give him something else to do, distract him, blah blah blah. If we could, don't you think we would?

2. Please don't tell us to ignore his behavior. "Have you ever tried ignoring it when he tells you something repeatedly?" Well I challenge you to hear "I can eat dinner at 6" every 30 seconds for five hours. Seriously. 

3. Please don't ask us "why do you think he is having a meltdown or why is he so upset?" when it seems to be for no apparent reason. Um because he has autism, that's why. If I could get that info, I would.

4. Please don't say the following, "wow you have so much on your plate", or "oh you are a saint". We have our plate and it's no bigger than anyone elses. I am far from a saint and pity is really offensive. Everyone has life and parenting challenges.

5. Offer to help and mean it. If you want to help your friend or family member, babysit, come over and engage the kid, or just listen if we need someone to talk to. We don't expect anyone to solve our problems, we just need empathy and action.

6. Don't ask us if our kid is going to college, going to drive, or going to live on his own. We would have a better chance of drowning in the bathtub than knowing that.

7. Never give up on our kids. Never look at them and think they have limitations. They may be different but they are not less!!! (TG credit there).

I am sure I can come up with more. Just like autism, nothing is as we expect it to be, so this is not a top ten list, it's a top seven!- via autisable.com

So... I have to say I don't agree with the majority of this list... let me explain why... besides the impression I get from the article that the writers are angry with the general populous and have given up with "That's too hard" and "Its Autism" for excuses, the explanations are below correspond to the "rule" numbers above:

1) You can distract or calm depending on the issue and the child - Know your children, what they need, how to help them and what they can handle. 

2) Ignoring a behaviour may actually help - its annoying, its hard, and sometimes its ALMOST impossible - BUT it ISN'T IMPOSSIBLE and its a CHOICE YOU MAKE. If you feel its not worth your time/patience/sanity to ignore - then that's you're decision. But coming from someone who's had to ignore biting incidents that nearly drew blood... you certainly can "Just ignore that".

3) He/she is NOT having a meltdown "because they have autism". They're having a meltdown because they 1) are overwhelmed 2) can't communicate 3) are disturbed by something in their environment 3) are experiencing pain, sickness or something else and can't tell you why (see 2). Their meltdown is not simply "because they have autism". If you choose not to get to know your child, that's on you. Don't blame autism because you don't want to pay attention. 

4) Pitty is not offensive, however, lack of compassion is heartbreaking. Everyone has their own challenges, and you never know the true story of what someone's life is like. Don't judge me, I won't judge you. 

5) Don't offer to watch my kids - that's not helping me, that's stressing me out. Come have coffee with me, ask me questions, learn about my family and I and keep an open mind. If you want to help me, start with that. Everything else will either embarrass me, or stress me out. 

6) Its actually quite easy to drown in a bathtub. That said, don't rule out things just because they "might not happen." If the possibility is there, then its there - no matter if its realized or not. And with our kids, the possibility is always there. 

7) I totally agree with this - but add, don't give up on yourself, don't sell yourself short - You're a mom, and an amazing mom capable of great things and your child will shine through you.


What do you think? I welcome your comments!

Diary of a rough day

Yesterday was a helluva day. Today is nice, calm and quiet - I almost don’t want to ruin the lull with an outing that was promised. But I promised and so it shall be done.

Yesterday’s routine was jumbled for both my girls. Winnie had a doctor's appointment and Maggie had a field trip with her class. For most kids, these changes would be a welcome distraction from the every day. For my kids, they’re a nightmare of uncertainties.

Like most parents, I’m sure - I try to schedule doctor’s appointments outside school hours so as to not disrupt the day too much - and this time I did as well. However, last week I got a call that the appointment was to be in the afternoon, just before school ended. From then, I began preparing Winnie with the reality that she was leaving school early. And so began the explaining, reassuring, and mini quizzing that goes along with getting her to understand that there’s a change in the everyday, and that she can handle it. So far so good - she seemed to be handling it very well and was excited that I was coming to pick her up from school.

Then of course, the day before the appointment, the doctor’s office calls again - change of plans, her appointment is first thing in the morning instead. As I tried to explain this to Winnie, I could see that she was going to have a rough time with it. There was just not enough time to check and reassure - and she was upset at the potential of missing her favorite school activities. She was going to miss the quiet bus ride to school, where everyone is sleepily saying hello and the bus is too crowded to do much but sit and look out the window. She was going to miss the morning message and song - and, she assumed she was going to miss PhysEd. No amount of me talking to her was going to make this better and she let me know that she was pissed off and freaked.

She tried her best to get her day to go the way she wanted. While I was in the shower, she had gotten up, dressed, packed her own lunch and got her coat and boots on. When I still said she couldn’t go on the morning bus, she tried a different tactic. She wanted to tell the bus driver herself that she had a doctor’s appointment. Believing this to be a reasonable request, we waited for the bus to come. But as she got more and more agitated and anxious, I could see she had more in mind. Asking her a few focused questions revealed that, indeed, she was planning on running onto the bus after she told the bus driver about her appointment. When I explained that she still couldn’t take the bus to school she simply ignored me. When the moment came and she finished her chat with the driver, I had to physically remove her crying, kicking, struggling body from the first step of the bus with the driver watching in shock.

I got her calmed down enough to get her to the doctor’s office - the doctor arriving into work 30 minutes late. Winnie, although complaining about the time, was relatively calm, and quietly scolded the doctor for being late, to which he pointedly ignored. They spoke about Angry Birds and school. When I explained to Winnie later that the doctor said he didn’t think she should be playing video games like angry birds (or anything for that matter) she replied with a quiet “But I like Angry Birds”.

Ms. Anxious Winnie watched the clock the entire ride back to school, complaining about being late and missing things - stiff and rigid in her seat as she frantically counted the minutes until we arrived at school. Running up to her classroom, her shoes were missing from the spot on the wall and  that seemed to be the last straw. Avoiding my grasp, she burst into the classroom and ran to her seat - standing in front of it she began to cry in front of her entire class - breaking my heart and wishing I could have made this day better, I turn to her EA to explain the events of the morning and she frowns down at me “Well if we had’ve known, we could have prepared her..”

Yah, my thoughts exactly.

But then, at the same time, I know I can’t prepare them for everything - it's where adaptability comes in - a skill she’ll have to learn if she’s going to avoid a lot of days like yesterday. I just wish I knew how to teach that another way than the current “sink or swim” method that life throws our way.

Maggie got to see the fire station - she has decided she wants to be a bus driver and a fire fighter. She’s got plans that one. And although the outing was very overwhelming, she did really well and fought her sensitivities and rigidity with plain old sleep on the way home - the notable difference now being increased reactions to things that bother her - more screaming, more tantrums and more crying about the small things.

There were no reports of anything happening at school, and Winnie seemed very happy getting off the bus. Just before supper she let us know the day was rough though - acting out, screaming and being nasty - basically begging for a time out and the quiet alone time she needed. It was satisfying to see her calmly curling up next to her grandma at bedtime - the extremely rough day behind her. And us. For now.

I can’t protect them from everything, I can’t prepare them for everything and I can’t always be there to soften the blow - but I can listen, and learn, and teach the skills that will help them next time.Next time, they’ll have this time to fall back on so that next time will be easier. Next time.

A Collection of Advice

I had a question from a friend tonight - okay a series of questions - about what to do for a child whom is having meltdowns during various things - transitions, outings, getting dressed etc. And honestly, my reply was a complicated one with various suggestions. It reminded me of a reply I made a while ago to a mom with a similar question on a "Mom website" that I frequent. Although this child was on the Autism Spectrum, the suggestions I had weren't necessarily for only Autistic individuals.

My suggestions will seem like a lot of work at first, but trust me, if you stick with it its very likely that it will help and later you can look back on this time with a sigh and "Remember when it was that bad?? I'm so glad its not like that anymore." Also, I use any suggestions relating to parenting or autism the same as 12 steppers - Take what you need and leave the rest. Not everything is going to work for you, or in your personal situation. Here is a combination of efforts that work at my house.

A visual schedule generally helps autistic children see what's coming. And that's a big deal when you don't understand a lot of what you see other people around you automatically getting. Its a key to helping them be less frustrated. This can include a daily schedule, or even a visual timer of some sort (like a circular cooking timer you can find at your Dollar stores or whatnot. The digital ones with no circle on them generally don't do much. I've even downloaded a timer for my phone so I have one wherever I go.).

Let your child know, BEFORE agreeing to the activity how long they'll have - and stick with it! Its easy to say "oh fine, have 5 more minutes" because they're screaming their heads off... but next time, they'll remember that they screamed and got more time - so why not use the same tactic this time??

Remind them (Verbal or visual prompting the professionals call it) when its getting close to the time they need to be done playing. Make sure they're paying attention to you when you do this. My kids were taught during their early intervention that when I tap my finger to my chin, it means "I'm saying something to you, pay attention and acknowledge me". It only takes a second usually to get them to say "Okay mom, 10 minutes" or something to that effect, to let YOU know that THEY heard you. Because when our kids are doing something they like, lets face it, they can be completely zoned out to you, and you screaming at them about something they're not interested in, is not gonna do a lick of good!

Praise him when he's good! The first time he gets off his game when you ask him to, dance a jig, give him tickles, make him laugh and smile any way you know how. At first he's not going to do what you want him to because it gives him a warm fuzzy feeling to obey you. There has to be something in it. So, if he gets off his game and you have a 3 minute mini celebration... He's thinking "hey... wow... that was pretty nice... I like that better than meltdown... "

Whenever he has a meltdown, try to write it down. This is tracking the behavior so you can figure out what's causing it. If you can figure it out - it will save you potential headaches down the line. Took me FOREVER to figure out that there's something in Blues music that drive my kids insane. They'd be climbing the walls and having meltdowns left and right - I saw no pattern, until I recorded what happened just before, and during, and after the meltdowns or behavoirs. Now, I know that my kids just can't handle some of the sounds in music, but other types calm them - that milk hurts my youngest's tummy and that my oldest gets into the syrups in the fridge because she gets a bath out of it. "UGH! Why are they crying, freaking, getting into things?!" is a common exasperated cry, but by charting it and using a little analaysis, you can avoid things in the future.

Until you figure it out, do your best to ignore it (if its possible, and sometimes, it just isn't!) Generally, you don't want to give any attention to a meltdown until you figure out the cause of it - because YOUR reaction MAY be the reason they're having the issue to begin with. I know from experience that sometimes your reaction can be 'controllable entertainment'. If they freak out, and you make that crazy face that is honestly hilarious to onlookers - that's pretty good entertainment - that they controlled the start of! And seriously, in a world where they don't control hardly anything, they want that control. So, when its a behavoir I'm tracking, I walk away (usually to the fridge where I keep my behavior charts) and write what's going on (Which is also why my handwriting on the forms looks like Satan wrote it, I'm angry, silent and trying to keep my cool!).

Keep your speech simple. I never want to feel like I'm talking down to my children. But at the same time, we have to remember that what is a regular room to us, can be like a flashing loud discotheque for our kids! If you say "Hey, can you go to the door, find your boots, put them on, grab your coat its time to go!" They may have heard one or two things.. which is why they grab their coat and wait at the door for you, and then have a meltdown because you insist they put on their shoes first! They may have actually only heard you say "Hey! ... Get your coat its time to go!" because of all the other distractions going on for them. Its not necessarily that they don't understand as much as... well... frankly they got a lot goin' on!

There are a lot of other things we use in our house too, because it really is a combination of things that tend to work for people. I'm sure I'll post another bit of suggestions at a later date. And sadly, it WILL probably get worse before it gets better. But after that HUGE and TRYING episode, you'll notice that it will get better.

Keep Calm and Carry On!

Making up for lost time

I've been awful about keeping my new years resolutions - but oddly enough, in the last few days I've been on a writing kick! I think that spring is on the way and I'm already feeling upbeat, bubbly, happy and I have more energy! Hooray for the sun and warmth that springtime brings!

With my writing, I've been a bit all over the place, and set them up on HubPages - so take a peek if they interest you!

• Oatcakes - my story and the recipe! Oatcakes - the plain treat that your kids will love!
• How to disable your multilingual options on your PC - Locking up the Keys - Disabling Multilingual Function on a windows 7 PC
• Sensory Sensitivity at School - a follow up to an older post - My daughter and her dislike of school

I also joined a support website for parents or people affected by autism, and I really enjoy it so far! Its called MyAutismTeam.com and they've just started adding Canadians to the site! If you're interested, give it a peek and feel free to add me to your team!

Of Shades and Sparks

When people whom are not in my life every day or whom do not know me and my family very well find out that my children have Autism - the immediate images that they conjure are generally of "Rain Main" - however, he was a fairly severe case of Autism. "Autism" in itself is not a diagnosis, because "Autism" is an umbrella term, like many things in our lives: Meat, alcohol, Christian, Holidays, colors, shoes, chocolate etc...

In fact, I'm going to  relate Autism to a color palatte... only because I like to design things and hopefully it will help prove my point.

Think of the human brain as having a color. If we go to, say "Benjamin Moore" to pick out a paint color, you can imagine how many colors there are to choose from, so first we start with a very very broad perspective. If we look at "all" the colors generalized, we might see something like this:

Each color may be thought of as a generalized view of how someone's brain works, how how they think. Someone might have a red brain or a blue brain and can see themselves clearly on this view, or at least the general area where they fit.

Once you figure out what color your brain is it tells you a little bit about yourself. We're always doing this with various tests, IQ, personality etc etc -  how many times has your boss sent you on a team building exercise that has these types of things in  it? As humans, it helps us to quickly understand something if we can classify it, and we do so with just about everything - ourselves, others and things! Once we classify something generally we decide if we want to learn more, or move on. For instance - a vegan, once they classify something as a meat, will 'toss it' - they don't want to know more because its not useful to them. It says MEAT on it and they look, blink, and keep walking. This is a pretty common response to a generalized classification system that we give EVERYTHING.

So, what does this have to do with my explanation on Autism? When you say the word "Autism", the knee jerk reaction is to think "Rain Man". That's the same as the Vegan's reaction to the word "Meat". (I'm not picking on vegan's - I could have used "A dog's reaction to the word "bacon" because they don't care what kind of bacon it is, if its bacon, they want it.)

A woman painting a room asks her husband "What color should we paint it?" and he says "green".She goes down to Benjamin Moore to buy the paint and she says "I want to paint my room green" and they say "Okay, which green?" and give her this:

Normally, for her green is green. It may come in light green, dark green but she's never really thought about how many different shades of green there are. Our brain does this all the time - it generalizes and we don't realize that we do until we take a closer look. We don't take a closer look until it affects us, until we need to.

If you went to the doctor, and he told you that your child's brain was green - think like a painter, a designer, and ask "What shade of green?" - Autism has many many shades.

Generally when we see puzzle piece pictures, we see them in many colors. It tries to reiterate the "spectrum" by showing colors in the rainbow and the diversity by showing the many different colors there are -

However, our brains don't see it that way. We see Autism as"Green". Just like Vegans see "Meat". If we want to know more, its up to us. Green can be just green, or it can be like this:

By taking notice, we can learn that Autism can actually be more of a  subtle "minced onion" green (1A), a more encompassing green like "central park" green (5C), or a full on lush green like "vine green" (6D).

This is the umbrella that most people see when they are told that their child has Autism.

Parents are generally told "Pervasive Development Disorder" or "Autism" long before their child is fully diagnosed as their particular shade of the spectrum. Its a pretty good literal translation of an umbrella term and helped me understand why my child was classified as ASD generalized - and where she fit among the others. That's a pretty good clinical sort of explanation.

Once I got to know more about Autism, the parents and families that are affected by it, the less the "umbrella" seemed to fit.. The more I needed to define further.

All this said, my daughters both have Autism Spectrum Disorder - Under the umbrella, Winnie is classified as Pervasive Developmental Disorder - Not otherwise specified, and Maggie is classified as Pervasive Developmental Disorder - Autistic Disorder.

But for me, and anyone that knows us - Winnie is a lovely shade of Richmond Green (5D) and Maggie is a bright and funky Garland Green (3C)! I'm not sure where Bill Sackter (aka "Rain Man") is in the shade of things, but perhaps he was a thought provoking Forest Hills Green (6C).

So much we miss without the spark - which is why I'm constantly out there with my "autism candle" of awareness - trying to light the spark for someone else - the spark of desire to learn more. I wonder what other shades of life there are that we're missing!