One long day...

Today was hard... it was the hardest day in a long time. I have visible battle wounds that I haven't seen the likes of since before Winnie was diagnosed. And it all went down at school, during the busy and visible lunch hour.

It started out not badly - Maggie did fantastic at skating. She listened so well and was simply amazing, handling everything so well. But shortly after she went back to school, she quickly ran out of steam. Her ability to cope with something bothering her, or something she wanted, fell apart.

Just after I returned home, the phone rang. Expecting to hear the voice of Maggie's teacher or the school secretary, I was surprised to hear the familiar voice of the principal instead. Very quietly, but hurriedly, she relayed the condensed version of events, and could I come and get Maggie immediately.

After I got Maggie home and calm, I could piece out the full story of what happened, but the condensed version was – Maggie punched a girl in the face, lost her lunch time outdoor play, freaked out and was currently throwing pint-sized chairs around her kindergarten room.

When I arrived at school 15 minutes later, Maggie had calmed slightly. That gain was totally lost when she saw me and realized she was going home. 4 adults, a bloody face and hand later, I drove a screaming, crying, kicking 5 year old home from school. The heartbreaking part? She was screaming to go back to school the entire ride home. All she wanted in that moment was for me to turn the car around and take her back to school, and promised me the world to make it happen. And I wanted to. Of course, I couldn't. But I wanted to.

After getting Maggie wrestled into the seat and buckled, I spoke with the resources teacher about the situation, passing it back and forth between ourselves the possible reasoning for the outburst. So far as we can tell, Maggie is under the weather, possibly from allergies that we have her scheduled to be tested for. Unfortunately, she's not even scheduled to go to the pediatrician  who orders the allergy testing, until the 25th.  I asked the resource teacher if Maggie should be pulled from school until then, and she scoffed at the idea. By the way her behaviors are escalating, the 25th just seems too far away.

On the way home, I managed to pry some sob-filled and broken answers from Maggie to fill in the pieces of what happened this afternoon.

The children were lined up for something, and a little girl in Maggie's class was in line next to her. The girl got a little rambunctious and bumped into Maggie a few times in line. Maggie couldn't take this bumping and, after tapping her a few times to no avail, she punched the girl directly in the face causing her to need an ice pack  As a consequence for punching the girl, Maggie lost her outside time at lunch. Aaand the meltdown ensued. In her mind, the girl should have been reprimanded and not her. However, she seemed somewhat contrite when I reminded her that she forgot the “Tell the teacher” step in her logical process, and that she's not allowed to lay hands on another person.

Tonight, I'm not breathing easy. My hope for tomorrow is that when I call the pediatrician  I can get Maggie in sooner, and that Maggie has love and calm for her classmates on Valentine's day. We may have lost this battle, but the war still rages.

The lunch dilemma.

Winnie is the "Star of the week" at school this week - which means that she gets to do something special every day. Today is "The special lunch" - she gets to have a special lunch (brought in by a parent) with a special person or parent. Originally, she wanted to have lunch with me, and I said okay. Today though, she remembered something...

Every time I go to school with her, she wants to come home with me. Even though she knows she can't, its like a compulsion that she can't control, and it upsets her so much she starts to cry.

Its why, when there is something special that parents usually go to (aside from Christmas concert, because she doesn't get to interact with me, just wave as the class goes by), I don't attend. Skating? No. Field trips? No. Swimming at the pool? No. I *want* to be there, but we've discovered that its just better for her if I don't go.

So today, her face went white as she remembered the likelihood of an uncontrollable meltdown. Her solution, because she still wanted McDonald's, was for me just to give in and take her home. My solution did not involve that. Instead I'm sending her two Happy Meals, dropping them off at the office and she can pick a special classmate to have lunch with instead. When I asked her if she liked that plan, she calmly and quietly agreed. Then looked me in the eyes and said "But Momma, I still love you, okay?"

And that, ladies and gentlemen, was huge. And that's enough for me.

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.