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!

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.