Saturday 8 December 2012

We matter.

Strange week. Had my first troll, and a message from a Facebook friend that made me feel the need to write this. Yeah, both of them did.
This is for the young, autistic blogger who messaged me and told me that she feels like she has no effect on the world, that her voice isn't heard.
You matter.  You are the inspiration for your peers and the kids growing up and their parents who are all affected by autism, society, and intolerance. Your effect is immeasurable, you touch even one life with your posts (and I know there are plenty more than that who have read and felt the power of your words) and there is an amazing ripple effect that is a force for positive change. You have lifted my spirits and made my journey easier. Never stop speaking, never think that your existence hasn't touched more lives than you will ever know. You matter.
This is for the belligerent jerk who told me that my opinions don't count and no-one cares about my life.
You matter. I don't know what bitterness or anger is under your words. I know you are frustrated, and I know you feel that you are ignored, dismissed and rejected. I hope that you find some kind of outlet other than trolling my blog, or others. I know that you have, perhaps inadvertently, strengthened my resolve to keep trying to reach those angry, bitter people with kind words, kind actions, and smiles when you look like you need one. I don't expect gratitude, nor do I feel that you are doing it right when you bully or belittle others. You do have an effect though. You are not being dismissed or ignored, and I hope someone will reach you, because you can be a positive influence on those around you. You matter.
This is for the kids who play soccer with my son.
You matter. Most of you are also on the spectrum, most of you are older than he is. You are so encouraging, supporting, and accepting my little guy, putting up with his distractions, laughing when he goofs around, teaching him about soccer when he is open to being taught. You also teach him that the world is a friendlier place than he might otherwise think, that being autistic is another kind of normal, that his way isn't something to be constantly suppressed or overcome, but to be celebrated and enjoyed. There are lots of people who don't make the effort, who don't get involved, who let the perceptions of other people define them. You are amazing and I hope you never get told otherwise. You matter.
This is for the kids who attend school with my son.
You matter. Some of you will never speak. Many of you will have trouble communicating with others for most of your lives. Most of you will face difficulties and challenges that "typical" kids will never even know exist. Even the most disconnected and isolated of you have changed the way I think about being human, being important, being accomplished. There is not a single individual among you who has not made me realize that every life touches every other life, and that every human being is connected to every other, no matter how they communicate. You matter.
And this is for me, for us, for the autism parents, families, friends, bloggers, artists, writers.
We matter. We are moving forward, we are trying hard, we share our successes, our failures, our heartache and our pride. We find a way to reach the people who don't get it, so that our kids, our family and friends, ourselves, have a better, more inclusive, more accepting world to live in. We matter.
We forget sometimes that every person matters. It isn't a competition to see who gets the most likes on Facebook, or who's blog is the most popular, or who says the things we are all thinking in the most eloquent way, although all of these things have their place. I often feel myself drifting into despair, fatigue, apathy, thinking, I am just another blogger, no one special, no particular reason to think I am at all important. But I am. For all the ridiculous self affirmation parodies and self depreciating lies, I am important. I affect other people's lives. I care.
I matter.

Wednesday 28 November 2012

Restless

I have the desperate need to get out of my life and out of my head for a few hours, days or something.
Most of my life involves cleaning up after, taking care of, or trying to entertain my family. I feel like I am losing some of the things I like best about myself.
I want to do my thing without worrying about the rest of the household for a bit.  To do my crafting thing without one kid trying to eat the beads and wire, and the other trying to take off with them. To get some 'me' time without being afraid that the Monkey is painting with poop or dumping every bottle, can and bag of food and cleaning product he can scrounge into a big sludgy puddle to drive his cars through. That the Kitten is destroying another book or important paper that was somehow left within her ever increasing reach. That I am being neglectful or forgetting something important that needs to be done RIGHT NOW or disaster will ensue.
Yeah, I had another life once. I went to live rock band nights at the local bars. I spent hours playing with my beads and wire and clay. I stayed up late reading.
I am not sorry to be done with the remarkably stupid decisions, the crippling self esteem issues, and the debt producing spending habits of my misspent youth, but I really would like to find the real me somewhere in the mix. I feel slightly lost and afraid that this is it.
I will never have a chance to find out what I could really do with the business and art of jewelry making. My hubby is a good man, but he never really had much confidence in my ability to make money with my "hobby". He still talks about me getting a job when the kids are both in full day school. I should say to him that I want to do more with the jewelry, but when I rather tentatively bring it up, it becomes obvious that he doesn't believe in my little dream. So I drop it, not wanting to get into the inevitable argument over money and saving for a house of our own, a new car, stuff for the kids. I get that, I really do, but I end up feeling resentful and deflated just the same.
I still haven't figured out the whole balance thing. Kids, relationship, household, my stuff. Maybe I just never will. I really need to get over the restlessness, though. My temper is not helping. My patience is really shot.

Thursday 22 November 2012

Give a little bit

 This was my Facebook status on my page yesterday:

Today was busy. I managed to get to Michaels and the Petsmart after the Monkey got on the school bus and I dropped the hubby off at work so I could use the car today. Got home, put the Kitten in the living room to watch a little Treehouse TV, and went outside to shovel the walk.
My back is behaving itself today, I don't have a migraine, and no joints aching.
The weather is snowy but not too windy, so the cold isn't unbearable. So.


I started shoveling the sidewalk, and finished the 20ft or so that fronts our house in about 5 minutes. Then I noticed our neighbours hadn't made it out to do theirs yet, so I did that too. And I kept going. To the corner. About 8 houses down. It felt good. I have had a lot of people do me small kindnesses that made my day a little brighter, and I don't want to take that for granted. I know I notice the little things when I am deep in a low, and a smile when my mood isn't so good can make all the difference.
So today I shoveled a few people's sidewalks. I know it isn't much, but I hope that when people see that someone has done a little something for them, that they think about it when they have the opportunity, the ability, and the time to do a little something for someone.
 
It was nice because I was feeling good enough physically to do it. I like that I was able to be the giver today, because I so often am on the receiving end.

I am putting this here, because I realized what I was feeling was a need to connect to the world as a human being. To go beyond the special needs mom, stay at home housewife role, and feel like a part of the big wide world again. 
What I want now, and what I hope you will help me with, is other people's stories. If you have done some little thing for someone without expecting recognition or reward tell me about it here. I need to renew my belief in human beings. Whether you think of these as Random Acts of Kindness, as Paying it Forward, Karma, whatever. Tell me something nice you did for no particular reason. If you can't think of anything, then do something today, and tell me about it. You have helped me so much with your kind comments and support. Who else have you helped?

Tuesday 6 November 2012

Resenting normal

I have been reading a pile of blogs about who has the right to talk about autism, and who autistics and parents and caregivers should and do trust on the subject. I feel like a wanderer in the wilderness. Apparently, I am the NT person who cannot be relied upon to describe autism. I am "normal". Terrific. I am doomed to never understand, nor relate to, nor assist any autistic person, presumably including my son, possibly also my daughter. Perhaps if I defer to an authority who is autistic, I may be permitted to assist, ever keeping in mind that I will never be able to truly understand what my children are going through. It is similar to the concept that a man can never understand or be an authority on women's issues, a straight person can never relate to GLBT struggles, a Caucasian can never put themselves in the place of a person of colour.

So I can talk about my own, personal experiences as a white female straight married atheist depressive. I can never be an authority on any other condition or person. Do I sound resentful? Frustrated and upset? Do I even have the right to feel this way? After all, for the most part I am a part of the privileged majority that the autistic person feel excluded by, aren't I?  I don't want to sort my friends by their differences, into categories of opposition. I don't want to be ignorant, or hurt people by assuming I have some idea of their trials and triumphs. I feel useless and weak often enough.

Are they right? Am I just a condescending, delusional and misguided NT who is doing more harm while trying to help?

Thursday 20 September 2012

I have failed.

Monkey's therapy provider cancelled his therapy yesterday without any real explanation. I assumed someone was sick or otherwise unable to make it, and didn't think too much about it, other than reorganizing my day around other activities.

My son's therapy provider called this morning and asked if I was available for a visit this morning. I am home all morning, so I said yes, and tried to tidy up to get ready.
The program coordinator and the family worker came to the house today to meet with me. They talked about setting up services and respite care and whatnot. All very polite and kind. Then the PC told me what I gather was the main reason for coming to see me today, at short notice.

 Apparently, his therapists had complained that the floor and carpet in our living area were not clean, and because they work mostly on the floor, they were getting crumbs and cat hair and "stuff" on their clothes. They noticed the smell in Monkey's room, where he has been indulging in fecal smearing of late, and the carpet in there isn't very clean either. They talked about the mess from having pets and possible issues with cat boxes and contact.

The FW made some offers of pamphlets and contacts, and then some pointed remarks about how if I got some respite care for Monkey, perhaps I could take the time to take care of the hygiene problems they had pointed out. She mentioned that they wanted to help me get the situation under control before it became a crisis. That they wouldn't want to involve child protection services. Unless absolutely necessary.

The PC then asked if I was okay with all this, as she knew I was feeling overwhelmed before they told me this. She assured me that they didn't want me to feel threatened or upset, that they had to make sure their people were in a safe working environment. That she wouldn't send anybody out today either, but that they were sure I could  get the place up to standard and ready to go for Monday, when she would be dropping by to see if all was done.

I managed to stay in control while I told them that I would get it done. That I was fine with it. That I would take care of things.

I can't seem to stop crying. I am a failure as a housekeeper, and I know I suck at it. I knew that before. I have tried really hard to get the place clean and comfortable so that his therapists could work with him here. I guess I am just not good enough. I have failed. I have failed so badly that my ability to provide a safe environment for my kids is in doubt. My in-laws are right. I am a lousy housekeeper, a lazy, unmotivated, incompetent person, I don't care enough about my kids to make more of an effort.

I want to shrivel up and die. I want to give up, even more than before. I haven't lost it completely yet. I met Monkey's bus, got Kitten cleaned up and fed them both lunch. For their sake, I am going through the motions of being a useful person. But I feel like I have already lost the game. Once again, I am judged and found wanting. This time by people who I need to please. I am a failure.

*Update* Thank you to everyone who posted in the comments with your support. I am doing better this morning, and dealing with what needs to be done. I am so glad to be a part of this community of bloggers. My husband reminded me of something: none of Monkey's therapists or workers have kids, let alone kids with special needs. While they work with these kids, most of them are fairly young, and they really don't get it. I got my feelings hurt because they don't seem to see the challenges, or that I am doing my damnedest to keep everyone happy, healthy and safe. Hopefully, this will pass. Worst case scenario is that we will be looking for a new service provider. I would rather stay with the one that Monkey knows, but we will do what we need to. For me, the worst fallout from all this is that my boy lost two days of his therapy because they didn't approve of my housekeeping. Whatever my hurt feelings are, that is a tangible loss from what is at the root a service that we pay for. So, I take a deep breath and move on. I am going to take the cleaning advice and see how it goes, maybe get back on the FlyLady wagon, and enlist my household to give me more of a hand. Thanks again to you all. It really is good to have people I can vent to who really get it.




Tuesday 18 September 2012

Liebster Award Winner! Yay me!

   So, Tree the Snake has honoured me with the prestigious and exclusive (I am assured) Liebster Award! This means I have to post some stuff. Thankfully, there is a protocol established here, so lets line it up.

  1. Thank the Liebster Award presenter(s) on your blog.
  2. Link back to the blogger who presented it to you
  3. Copy and paste the award on your blog.  
  4. Present the award to 5 or 11 blogs that deserve to be noticed.
  5. Let them know they've been presented with the Liebster Award.
  6. Answer 11 questions posed by the presenter. 
  7. Eat some dark chocolate.  It has anti-oxidants in it.  It will cure what ails you.  Unless you are allergic to chocolate.  Then skip 7. 
Number one: Thank you to treethesnake.blogspot.ca for presenting me with this incredible honour and a kickstart to getting a blog post written.
Number two: I am pretty sure I did that. I hope. Twice. 
Number three: see number two.
Number four: Lemme see, who am I gonna pick?
Bacon and Juice Boxes
Parenting with Asperger's Syndrome 
Holdin' Holden 
Confessions of an Aspergers Mom 
My Life With my "Au"some Son
I will admit, I partly chose so as not to copy Tree the Snake's list, but all of these blogs are awesome and well worth reading, written by awesome people who deserve the recognition.
Number five: Okay, working on it.
Number six: Hm, I believe this is an add on question, but what the heck.
  1.  What, if anything, is completely off limits as far as blog topics for you?
  2.  What is your favorite sound?
  3.  If you could go back and talk to your 15 year old self, what one piece of information/advice would you share?
  4. How did you end up doing what you do today? (If you're a SAHM, what made you choose that vs. going back to work? If you work a paying job, how did you end up in the field you are in?)
  5. What is your guilty pleasure?
  6.  What's your favorite candy?
  7.  What prompted you to start your blog?
  8.  Do you have a favorite food? If so, what?
  9.  If you had to pick 1 thing to change about yourself, what would it be?
  10.   What physical attribute do you like most about yourself?
  11.  Do you still live where you grew up? If not, how far away are you from your hometown?
 1. I try not to get involved in politics, and I try not to get caught up in the controversies of Autism treatments. That said, I wouldn't call it off limits. There are topics I don't bother with, because I don't think it would be interesting or useful to me to blog about them. I try not to over censor myself, but I rarely use curse words in my writing. I do enough of that in real life.
2. Wind chimes. Almost any wind chimes.
3. Tough one. I was suicidal and isolated during my teen years. I would love to tell myself that the high school years would be the worst of my life, not the best. That there are tough times to come, but there are wonderful things too. It gets better.
4. Well, you see, when a man and a woman love each other very much, they might decide to have a baby... Child care is just too bloody expensive, and I worked mostly assorted menial retail wage slave type positions. I am fortunate to have a husband who makes enough to support us without the second income, and housemates who share the rent with us. I have a little jewelry making business on the side, but I wouldn't call it an income, per se.  At least, not yet.
5. Watching Hoarders. 
6. Reeses Peanut Butter Cups
7. When my son was diagnosed with autism, I started looking for online support and advice, and found the ASD and SN parent blogger community. Homestyle Mama  and Parenting With Asperger's Syndrome were and still are my inspiration and heroes.
8. Is ice cream a food?
9. I would like to like myself. 
10. Is it bad to say my boobs?
11. I have moved way too many times. I was born in Regina, Saskatchewan,  and lived in several cities in my early childhood. From age seven to twenty I lived in Calgary, Alberta. I spent fourteen years in the Lower Mainland, mainly in Vancouver, BC. This was followed by a nightmare of moves for school, my husband's work, and family.  I live in Calgary again now. And I am hoping to only move again when we can afford to buy a place of our own.

So, the challenge and awards are passed on...



Wednesday 5 September 2012

Singing in the rain, or something

So, it's raining today. My little Kitten decided that 4:30 am was a great time to wake up. I left the boys in bed (the Monkey evidently joined us at some point last night) and got up to turn on the TV to Treehouse and deposit Kitten in her accustomed place with juice and some Cheerios. I did the dishes, made the coffee and waited for the sun to rise, feeling cranky and tired, wishing I could sleep all day.
Then I went to the living room to join my daughter, and she gave me an enormous smile and pointed to the TV, saying "doa doa, bapa!" (For those of you who don't speak toddler, this is "Dora, Dora, Backpack!") Her smile was irresistible. I went in for a cuddle and she said, "Ticka ticka!" so I tickled her and made us both giggle. The sky lightened and my mood began to improve.
Then Monkey came out, cranky and wanting to go back to bed. He got a cuddle and a tickle too, and settled down with a Pop-tart after rejecting the peanut butter sandwich I had ready for him. Par for the course, at least he ate something, never a sure thing in the morning.
My hubby emerged from the bedroom, ready for work, with clothes for Monkey. I got our boy dressed, then looked at the clock. 7:25. I begged my Hubby to let me get a shower, and he graciously gave me 5 minutes. He doesn't have the one to two hour commute anymore, having switched to school about fifteen minutes away, although still teaching the same category of students. It is so much easier in the mornings this way. So I got my shower (bliss, even hurried) and felt almost human by the time I was dressed and brushed and moisturized.
Monkey was already at the door, champing at the bit, dressed in his Thomas the Tank Engine boots, and his shiny yellow slicker that his Gramma got for him. He was so excited about going out in the rain that I found myself smiling again. He loves the rain, puddle jumping, mud pies, the sound the rain makes on his hood. The bus came a little late, but he didn't mind.
So here's the thing: I hate mornings. I hate getting up early, I can not stand the groggy feeling and lack of cognition that plagues me, having to function when I just want to sit and stare at the wall until my brain wakes up, having to act cheery (for the children! phbbbbbt), make conversation with Hubby. And I hate rain, the darkness and gloom, the wet, the mess.
 But today, I stepped into my kids' worlds.
My daughter, the morning baby, the early, happy riser.
My son, delighting in the prospect of rain, school, and the bus ride.
I am not by nature an optimist, although I do try. Today, though, today I feel like the world might be a good place to be after all. If my darling girl can greet the day with enthusiasm, if my awesome little man can love the rain, maybe I can be a part of it, can learn to see it through the eyes of these crazy little monsters that I adore so much.
Today, depression and the dark side of autism will be overcome for a while.
Today, I will sing along with Dora and Kitten.
Today, I will go jump in puddles with Monkey.

Saturday 11 August 2012

Home to the heart of chaos...

Well, the vacation is over and I am beginning to realize some things.

ONE: I am not cut out for camping trips without showers that last more than 3 days. 6 days of filth, smoke and bugs is just not within my tolerances. Not just me, but my children smelling like used diapers and lakeweed laced with goose poop is enough to drive me nuts.


TWO: The generosity of my in laws in taking my Monkey Man for a week must be balanced with the incredibly difficult recovery of schedules. I am not the most organized person, but keeping Ewan on at least a tentative wake up/mealtimes/bedtime routine is vital, and the in laws are just not interested in attempting to keep him consistent. That it is a challenge is not something I contest, but he is so much happier and easier to be around when he has a decent sleep schedule, even if it does take major effort to get him to bed on time. We really need to work on meals again, too, as his eating habits have slipped again. I am tired of having a six week minimum recovery from vacations.

THREE: I am slipping into major depression again and need to find a therapist again. I get so sick of first visits, though. I hate explaining my history, my present issues, my meds, my family, my kids again to yet another doctor, only to find that I can't work with them, or that the doctor is retiring, moving, or for other reasons won't be around for the long haul. I hate changing medications and going through the withdrawal/side effects/evaluation cycle again and again with little or no gain.

FOUR: I really don't like myself much, and I don't want to pass this to the next generation. I feel like a whiny little brat. I always say I get tired of the screaming and crying, but these days it is coming from ME.

None of this is new. I just can't seem to cope with anything and it is driving me crazy. Crazier. Whatever. I can't seem to recharge, and I don't know what to do about it. My house is an appalling mess, and Monkey's in-home therapy starts on the fourteenth. I am not ready. I don't have two clear areas for him to work in, nor is my kitchen set up for his OT. I want to sit in the closet and scream and cry and have a little meltdown of my own.

I can only hope it passes. I need energy, dammit. I have people counting on me. I have me counting on me. I can't give up, but I really really want to.

Thursday 12 July 2012

The In-Laws and outs of vacation for Monkey

Sent the Monkey off to my husband's parents for a week alone with them before we join him with the Kitten. They have done this several times, with reasonable success. He is generally good with adults, and loves his grandparents dearly. I worry a little of course, but not excessively. They accept his diagnosis, even if they don't fully understand what it means. Hell, I don't either, but we all do our best to help him with the tough bits, and get him where he wants to go. It is also nice to have a break from the constant supervision my little man requires, and the cleanups that my lapses of attention inevitably lead to. I feel vaguely guilty about feeling relief, but mommy guilt is a specialty of mine, so I am used to it. I appreciate that my in-laws are willing and able to take him for these times, and he really enjoys the attention.

There was a call from the SiL (Hubby's sister) soon after Monkey and Gramma were supposed to arrive, with the urgent tone she is so good at, telling us that there was a delay getting off the plane (a door was jammed) and Monkey was, in her words, "freaking out". So Hubby called his mom on her cell. What exactly he was supposed to do was a mystery to me. Maybe he thought he could talk to Monkey on the phone and distract him. At any rate, by the time he called, Monkey had finished his meltdown, and was fine. It turns out he had a relatively minor meltdown because he thought, when they made him sit down and put his belt back on, that they were going to fly back home, and he wouldn't see Granpa. Gramma had called Granpa to let him know there was a delay, he had heard Monkey having his meltdown, and for reasons I just don't understand, he felt the need to call SiL, who felt the need to call us.

This is exactly the worry I have about visits with Hubby's family. His dad can be bitter and manipulative, and often tries to stir up trouble between the siblings and tends to stretch the truth or twist it to accomplish this. SiL takes everything he says and reacts exactly as he expects, in turn she works herself into a frenzy of nerves, then usually calls her mom or Hubby to proceed to work them up into overreacting with them. She succeeds with her mom far too often. I can usually talk Hubby down if she gets him stressed out, but it is wearying to both of us. She doesn't limit this to her father's influence of course, and still stresses over her own kids and life, and passes this to her family, who spin it back and everyone panics or gets angry or whatever else. She believes she has all of the solutions to our problems with Monkey, too, most of which she gets from the internet. This drives Hubby up the wall as he is a special needs teacher with a master's in special education, and works with severe ASD kids every day. He doesn't claim to know the answers, but he has heard most of the alleged cures and treatment, seen most of them tried by the parents of his kids, and is pretty well informed of what is solid and what is bull or snakeoil. She also has plenty of more general parenting advice for us and never hesitates to tell us her concerns over our kids' development. Sigh.

Don't get me wrong, I understand that she believes she is helping. I try to be polite and not too dismissive of her when she voices these concerns. And Hubby's family loves Monkey and would never deliberately say or do anything that would hurt or belittle him. I don't know how much he understands or takes in of the drama that is going on around him. My concern is that he will be made to feel less than perfect as a person because he is ASD, and that his delays are somehow his fault. I can live with the frustration that comes with the criticism and oh so helpful advice from his family. I won't tolerate anything that belittles or marginalizes my son. Hubby's dad is a bully. I won't have him bullying my son. SiL is a drama queen. I won't have her making my son feel like he is a tragedy or broken. Hubby's mom is a good person, but is very much an enabler for her family as she tries to keep everyone satisfied.

I don't think I am a perfect parent. Hell, I can only hope to be an adequate parent for my amazing kids. If I need help I ask, and sometimes even take the advice I am given. I worry plenty, and overreact occasionally, but overall, I try to remain calm and focused for my kids. It doesn't always work out, but it really doesn't help to have well meaning (or not) folks fanning the flames of panic and frustration.

I just hope I am not a bad person for hoping he has a few really good meltdowns for Granpa.












Monday 4 June 2012

It's the good kind of contagious

The sun is shining today. I have been trying to become a little more positive in my outlook, and the sun is a good start. I am trying to distance myself from memories of hurts and mistakes, and hold on to the compliments and happy times. The negative always seems to stand out. One nasty comment can negate a thousand pleasant remarks. I am making an effort to let go of the unpleasant stuff, remind myself that I earned the compliments and kudos as much as the criticisms and reprimands.

I have depression. It is with me all the time, even with medication, the dark cloud in the clear sky. A storm is always looming. I am inclined to self harm and emotional meltdowns. I can't stop the cycle every time. I get into states of suicidal despair. I do my best to fight through, and I have good people around me to help me. I am fortunate in that. I have had people tell me that they can't believe I am depressed, because I seem pretty cheerful. Most of the time I can say that I am cheerful. I work at it. But it is a conscious effort, and I fight with my emotions every day. A single negative comment can send me into a black pit. A bad decision, a minor accident, a clumsy moment, and I can spiral down into misery far too easily.

I have thought a great deal about the why and the how of my thoughts, read a great deal about how to change thought processes, work through emotional overload, how to be less self deprecating, less self destructive, less self critical. This is where I have come to my current philosophy of how to treat others, and how I want to be treated.


I have a strong belief that people are generally good. When I am upset with someone I give them the benefit of a doubt, because everyone has bad days, bad moments, bad decisions, or ignorant reactions. I am not expecting perfection from anyone (except maybe my hubby, and then only when I am feeling especially cranky). I think, though, that the world would be a better place, if people put a bit more effort into their interactions with all other humans.

I like people. I don't mean that in a sarcastic way. I really do like most people. I stuck that qualifier in this time, because I am not a sweet, optimistic, rose coloured glasses type person, and I do admit that there are people I find unpleasant to be around, people whose behaviour I disagree with, whose motivations disturb me greatly. They are the minority, however, and I try not to let them get to me.

It is a cliche to say that everyone has a story that you don't know. They do. I think most of us have got that, but we forget too often that other people have those stories, have those reasons for being less than pleasant. We get wrapped up in our own stories, our own drama, and wonder why people are not being nicer to US. It doesn't always register that give and take is the trick, that you have to care about other people's stories and you will get more sympathy for your own.

So start with being polite. No matter how unpleasant or rude other people are, it really doesn't cost you anything to say the words please, thank you, excuse me, I am sorry, you're welcome. It costs you nothing to hold the door for people, give a wave when someone lets you in in traffic, apologize for bumping into someone or getting in the way, even if it wasn't deliberate. The real trick is to mean it. If you can genuinely express manners and mean it, you win. Even if you don't like what you are given, if it is given with good intention, you can say "thank you" with sincerity. If you can't be sincere, try to fake it well. Nothing disarms a rude, cranky person like someone who responds with manners. That is what being civilized is all about. If you don't think you have to be polite, then you are not a civil person.

Next, be kind. Yeah, most people seem to think you can stop at polite, but that is the bare minimum standard, not the best you can do. Be kind because you need other people to be kind to you, because it makes others think about what they are doing, because you acknowledge their story, and maybe someone will acknowledge yours. If the service person isn't smiling, and you smile at them and offer a "rough day?", they may or may not respond, but maybe they will hold on to that little act of kindness, and just maybe they will find their own smile for the next person having a rough day. Spread the kindness, and it will multiply. Not everyone will pick it up, but it pays you back. It makes the world better, ups the positive energy content, and it feels pretty good, too.

The gold standard from my point of view is to be joyful. That sounds kind of funny and new age-y but it is absolutely the best way to make the world better. Look at our kids. When they are joyful, smiling, genuinely happy, we are happier and feel better. When we do the same, we can spread the joy, and increase the happiness for everyone we come into contact with, and they will be able to do the same.

That is the biggest part of all this, the reciprocal nature of  treating others well. Not everyone will respond positively, but those that do will help make even more people feel better. It spreads. A joyful contagion. Not an original concept, but one that bears repeating, especially when we are having trouble finding our own joy. A kind word from a stranger, a smile to remind us that we can, too, and can make the bleakness that seeps into our lives a little less. This comes down to being all of these things to ourselves, too. I seem to forget sometimes that I need to be polite, kind and joyful to myself, in order to have a supply to start the process with other people. Again, it's a cycle. The more people I use this with, the more who will be inclined to use it with me, the more I will have to give.

So be polite. It costs nothing.
Be kind, and it pays you back.
Be joyful, and we are all richer.

That's it.  So if you are having a good day, make sure you spread it around. If you are having a bad one, here is a little joy from me to give you some comfort. Fighting the good fight, spreading the happy.


Friday 25 May 2012

Lets play "Brat or Autistic"

Every day is a guessing game. Not a fun, play with your kids, 20 questions type game, but a frustrating, confusing, confounding game of  "is this behaviour Autistic, or bratty?".

I worked with kids many moons ago, but in the challenging, stressful and at times hilarious adventure that is raising my son, I seem to have forgotten what normal looks like. I honestly don't remember how the average, NT, regular kid type 4 year old behaves.

Now I know that regardless of whether a behaviour is deliberately bratty or because of Autism, if it is dangerous, inappropriate, or just plain irritating, we will take steps to try to reduce that behaviour.  The trick is to try to figure out what steps are actually going to be effective to do that. Autistic behaviours don't respond well to punishments that reduce the bratty behaviours. Bratty behaviours need to be addressed as such, because they are behaviours the kid has chosen, not ones that his differently wired brain has forced him into. Also, as parents go, I tend toward the permissive, and indulgent, so he is probably a bit spoiled. That is as much my problem as his, but I still need to know what factors are at work for a specific behaviour.

So, when his iPad runs out of power unexpectedly and he pounds it on the table and screams, is that Autism, or spoiled brat? (Whoever designed the heavy duty cover on this device, I thank them a thousand times)
When he jumps on the couch, throws himself down, over and over until the couch breaks, or he injures someone (usually me) is that Autism, or brat? He does this when there is something especially entertaining on TV.
When he dumps a large container of ice tea mix, a bucket of baby formula and a bin of sugar together on the kitchen floor, then drives his cars through it, is that Autism, or brat? It is sure as heck expensive.
When he throws his juice cup at me if I don't respond quickly enough to his request (verbal or point and grunt, depending on what kind of day he is having) is that Autism, or spoiled brat?
When he breaks down in tears because he has to interrupt what he is doing to go to school, eat dinner or go out somewhere, is that Autism or spoiled brat?
 When he gets off the potty and pees on the floor, is that Autism or spoiled brat?
When he poops in the tub, then smears it on the wall, is that Autism or spoiled brat?
When he refuses to eat anything but watermelon, cheese cut into triangles, and Triscuit snack crackers, is that Autistic, or spoiled brat?

Sometimes it is more obvious than others. Sometimes it seems to be a mix of reasons and explanations. Sometimes I try to figure out what a "normal" 4 year old might do. Or a two year old, for that matter, since that is where a lot of his functioning is at.

We get through, one way or another. I love this kid, no matter what the challenges, and I don't want to do him a disservice by assuming his behaviour is Autistic, or just him, testing boundaries and experimenting with the rules.

I need to learn. I need to figure this out.

But first, I need to clean up the mess on the kitchen floor. Sigh.

Thursday 17 May 2012

How can I miss you if you don't go away?

I am an introvert. Essentially this means I need time by myself to recharge my batteries, and be able to cope with my responsibilities and enjoy being around the people I love. I also suffer from clinical depression. I am on meds, and am mostly stable, provided I take care of myself.
The trouble is I am not taking care of myself. I don't eat very well, and am a bit of a stress eater when it comes to dealing with the day to day stuff. Fat, sugar, salt, and caffeine are my food groups lately, and that really isn't helping me maintain my equilibrium, emotionally speaking. I am overweight, and gaining again after losing a fair bit of the pregnancy weight last year. Sigh. I haven't been getting much exercise, other than chasing the kids around. I don't read for fun as much as I used to, and I haven't been doing my jewelry crafting. My house is a mess, even after hours of cleaning, so I have been getting that apathy derived from the futility of my actions. I have been crying too often, for trivial reasons, and I really hate that.In short, I am in a funk.

I don't want to be a drama queen, nor bring people down by wallowing in my own misery. My family have their own problems and I don't need to add to them. My kids need me, my husband needs me, and I need them. My amazing, challenging, and very high maintenance little boy is running me ragged. My daughter is sweet and growing more curious and adventurous every day. I worry that I don't do enough for my son, that my daughter is showing signs of developmental delay that I am not worrying about enough, or worrying too much about. That I am neglecting one or the other. Or that I don't respect my hubby's needs because I am too focused on the kids, or my own misery.

The trouble is, I also need me. Alone. I am not getting the me time I need to keep steady. I don't know how to remedy this without feeling like a whiny baby, or an antisocial jerk. My husband is more of an extrovert, and is not happy being alone. He knows, at least in theory, that I need that time, but he also has trouble doing anything alone, and I am the person who fulfills that sidekick role most of the time. My children can't be expected to understand my need to get away from everyone, they are really too young to get it, and when I do try to get those times away, my hubby doesn't get that I need him to keep the kids away. He works outside the house, and to him, having the kids around is a treat, so he has told me. I don't know that he understands entirely how tired I get of having to serve the needs of them and him.

How do I carve out a space for taking care of me? All of the books, resource people, even family and friends say I need to take care of myself in order to take care of others. How do I do that without being selfish? How do I find time without depriving my family? It isn't that I don't love them or want to be with them, but it remains an issue that I can't be with people, even the ones I love, all the time without going over the edge. In a few weeks, my son and hubby both will be home for the summer. Then what? Will I get more time, since Daddy will be around more? It doesn't usually work out that way. He has his own plans and priorities, and although he tries to be helpful, a lot of the time he seems to want to schedule me for plans that suit him more than they do me.

So how do I make this time for me that I need? Most of the stuff I want to do with that time is at home. I feel guilty when I wish he would take the kids somewhere by himself, but when I try to lock myself away in the spare room for some crafting, or work in the yard on my gardening, the kids or the hubby always manage to guilt me into coming out to do something for or with them. How do I change this? I seem to have advice for my friends, but I just can't seem to come up with anything for myself.

Okay, done whining for today.

Friday 11 May 2012

Hello, my name is Carmen and I am an...

This was posted by a well meaning person on my blog yesterday.
" the word atheism may be turning people off......unless u make a point that u are AGAINST IT! "
Okay, I suppose it is as good a time as any to address this. I hate defending myself to people. I don't really do it that often, but I hate being judged and it makes me feel like I am somehow validating the judge's opinion by responding to it. I don't have the greatest self esteem, frankly, and it really bothers me when someone doesn't like me. Silly, of course, not everyone is going to like me, agree with me, or understand me. Still, I want to reply to this one, because it is a topic I have been thinking about a great deal lately.
I feel like I am admitting to a terrible character flaw, or a disgusting personal habit. I know there are people who will decide I am not worth talking to because of this, and people who will try and save me from myself, or advise me to keep it under wraps, because all of these reactions have occurred in the past. But enough. Let me just come out and say it.
I am an atheist.
Yep, I freely and of my own will admit that I do not believe in a god (or goddess). I am not agnostic, because I have pondered, reasoned and decided that I do not believe there is or was a creator, or that there is or was anyone directing human lives or civilization other than the other humans involved.
That being said, I am not a rabid anti-theist. I believe that all people have the right to worship, believe, and take comfort in their personal belief systems. I respect that people will speak of their religious beliefs and affiliations.
I take exception, however, to those who use their beliefs to pass judgement on me. I also have little tolerance for those who insist on promoting their faith as the one true way, and who denigrate those who believe otherwise.
I am not amoral, nor do I think that anarchy is the way to go. I believe in human beings as generally good people, with some blind spots and  problems, but basically good. I base my moral code on the concept of creating as much comfort and joy in the world and as little suffering and anger as possible. I also believe in treating most people as individuals with needs as valid and important as my own. I  I believe that all human lives are valuable and that everyone matters and has a place in the world that is important, no matter what their abilities, potential, religion or worldview, including those I don't understand or necessarily agree with. I think that those who use their beliefs to try to bully or abuse others into agreeing are wrong. I believe that those who hurt or subjugate others in the name of their beliefs, or doing what they are told and not thinking about what is right, are dead wrong. I don't say that they are worthless or stupid, I say they are careless, lazy, and often willfully ignorant.
I believe in giving people the benefit of the doubt, and in treating everyone well, for no other reason than that it is no more difficult than mistrust and selfishness and that when you treat others as you want everyone to be treated (including yourself and those you love) you make the world a better place to live in. Because everyone is connected, every living thing is connected, and you never know how your actions will affect others. So I do what good I can. I take joy in what I can. I try not to let bad stuff make me miserable or bitter. I don't always succeed, and no one is perfect, but I do try.
If people feel they are morally obligated by their religious beliefs to tell me I am wrong and to unfriend, unfollow, or ignore me, I respect their right to do so. I am not going to get into debates about this, and I am not going to change my mind, be saved, or any of the other euphemisms for religious devotions. I am happy as I am, and I don't believe that my stance is harmful to anyone. Be at peace. I do not profess what I believe in order to offend or insult others, but I am not going to pretend I believe otherwise to appease others.

Wednesday 2 May 2012

A Valuable Life

Tough day for my hubby yesterday. He teaches low functioning autistic children at the elementary school level, kids with tons of co-morbid conditions and intellectual disabilities. Well, one of the children passed away during a seizure Monday night. The teachers and aides were all affected. He had to call the parents of the other children to let them know what happened, as most of the kids he works with are non-verbal and wouldn't be able to tell their parents why they were upset. And they were upset. Even those who didn't understand or know what had happened were reacting to the grief and upset of the staff.
I appreciate that the parents and others get some comfort by believing that he is in a better place, in heaven, or whatever afterlife they believe is appropriate. I don't believe that. Being an atheist, I don't believe in an afterlife. When someone dies, they are not in a better place. They are dead. Whatever made them a person is gone.
That said, I also believe that this little boy is still with us. Every person he touched, every contact, every smile, every high five (and he loved to give high fives), will carry him with them. He was an individual, an amazing human being, and he will be remembered.
That, to me, is eternal life. No matter what, no matter how short, or limited, or difficult a life is, it matters. We are connected to every other life on Earth. We all have that intrinsic value, every life, every person, everyone makes an impact. That whole "Six degrees of separation" concept is true in that every person who is connected to even one other human being is connected to all of us.
This little boy is gone, and that is a shame, and he will be missed. But he will live in memories, and in the actions of every person who remembers him, and in the impact that they have on everyone who knows them. He mattered. Nonverbal, severely disabled, limited, he still mattered. His life was worth living, and worth having.

Wednesday 25 April 2012

Talking for (or to) myself


I can’t keep to the sidelines any more. I need to speak my mind, and not on someone else’s page or story or post. I am getting more and more frustrated finding people to speak for me, and have finally realized (yeah, I am slow like that) that only I can speak for me.
I am a stay at home mom of a 15 month old girl (let’s call her Kitten) and a four year old boy (let’s call him Monkey). I have battled major depression for most of my life, and am on meds.
 My son was diagnosed with Autism Spectrum Disorder (ASD ) a few months ago.
He is functioning socially at roughly a 2 year old level. His speech is a little better, but still delayed at least 18 months. He attends a preschool that provides him with some speech, occupational and behavioral therapy. We are immensely lucky to have found this school. They can take him for kindergarten as well, so we won’t have to deal with the trauma of changing schools for this year at least.
The thing that got me writing today is my reading of so many blogs and Facebook posts about the causes, treatments and cures for ASD, including current, debunked but somehow not dead, and promising possibilities.
I have been pitied, lauded and disdained in my parenting of Monkey. I have felt judged (and been judgmental and defensive in return) when reading blogs by ASD adults and parents. I doubt that was the intention in most cases. I can’t blame anyone else for my gut response to what I read. I am a grown up, at least in theory, and I try to keep a level head and an open mind (not so open that my brains fall out, though).
I recently have thought about the debate on whether ASD is a condition to be treated, pitied, cured, celebrated or whatever else one might consider as a response to what is a very confusing and sometimes scary, sometimes astonishing, range of traits and symptoms.
I don’t celebrate my son’s ASD. Maybe I should. It is harder when he poops in the tub, then paints with it, or has screaming meltdowns and slams his head into solid objects at bruising force.  I can’t celebrate his struggle to communicate or his frustration with those things that other ‘neurotypical’(NT) children find simple, for the most part. But his fascination and focus, his lively sense of wonder and humour, and his affectionate nature are a joy to me. I don’t know if he would still be who he is without the ASD, and I am not likely to find out. This I accept. I embrace the child and human being he is.
I want to help him. Not cure, not change, just help. I want to be a good mom, to direct him, to love him, to reassure him, to enjoy him. I don’t know how to get past the behaviours and the thought processes, whether dysfunctional or not, that separate and isolate him.
I want him to lead a happy, fulfilled, productive, independent life, in that order. If he requires some kind of meds, I will go there. If he needs anything from me, I will do my best to give it to him.
Happy, I think he can be no matter where we get with the various therapies and approaches. Fulfilled follows from happy, I believe; I want him to go as far and live as fully as he is capable of. Productive is secondary in that he will never be less or more valuable for what he contributes to the world. I would like for him to feel that he is a valued person and member of the human race regardless, but I could hope for him to contribute as much as he can and wants to, without limiting himself because of his ASD or anything else. Independence? We will see. He certainly has a strong will and a sense of himself that is sometimes surprising, and that is a wonderful thing. I want everyone to see and celebrate the amazing person he is.
My son. Himself. He is not Autism. He is autistic. It is an integral part of him, but not all of who he is. I want for my son what every parent wants. I have learned to let go of the hope that he might have an ordinary life. I guess we will have to see what we can do with extraordinary.