The Spoon Theory - or my n units of energy multiplier theory.

Explaining to my friends and family what having a chronic disease is like, has always been awkward and difficult.  However after I read this article at Butyoudontlooksick.com it has given me great hope in trying to explain to people in my circle of friends and family what I go through with Fibromyalgia.

The author, Christine Miserandino, uses the analogy of a handful of spoons that equal the total amount of tasks or energy that she has in a day.  

She hands this handful to a friend who doesn't understand her ordeal, and she tells her to count them.  Then she asks her friend to walk through her daily routine.  Soon enough the friend has to make some drastic choices in her day in order to still have spoons left.

I love this as a great tool to help our caregivers, family, friends and loved ones understand - just a little bit - the invisible pain that we endure daily.

The way I describe it to my family that for every 1 unit of energy I use, I need two units of rest to recover.  If I push past my energy unit limit, I tend to then need three or four units of rest.  And heaven forbid I get sick, you might just as well write me off for awhile.

I sometimes wish I could put a cast on so that people would see and acknowledge that "there really is something wrong with me", or some sort of beacon that would go off when people come near me "Walking wounded, living each day as it comes, please be careful as patient is fragile." Or something like that.

Any way that we can gently share a window into our lives can be helpful.  True friends want to understand. True friends want to help.  For me it seems that the barrier is the truly foreign concept of pain that those who are well just don't experience.  

I hope these links can be helpful to others along this journey.   How do you share your pain with your circle of friends and family?

Experiencing the Unexpected - An #Autistic Son Amazes his #Aspie Father

Most parents who have children with autism experience days of difficult communication, meltdowns, outbursts, inappropriate comments or behaviour, and various amount of other things that can get us on edge or exhausted, and desperate for any, even brief, moments of quiet, peace and tranquility.

Our days can consist of therapy, of daily life and routines that can be easily upset and throw us into reactive, problem shoving, crisis averting mode,  with a bit of PR if we happen to be out in public.

So, when the unexpected happens, and you see your child doing something you never thought he'd be able to do, it touches your heart and makes all the stuff above worth it.  Your child is worth it, because your child is amazing.

I had that moment again this week with my oldest son who has high functioning autism.  We had the week together mostly to hang, and we joked around together, went swimming, went to library and bookstore together, and got him addicted to Doctor Who.

He's 14 now, starting high school in just a few weeks.  He's come a long way from the little boy who could not speak more than 10 words, and spoke only in rote phrases. From a boy who got so upset and angry when the simplest things did not happen how he'd expect.

This week, he let me come into the world of his feelings, and told me things that really bothered him, that made him sad, and told me how he really wanted to see things.  It was amazing.  He had the time with me this week to get perspective on his life, and wanted to share it with me, and sought comfort from me. He really enjoyed our time of just hanging out and talking,

It made me so proud.  He is growing.  He is changing.  He is autistic, but his autism isn't a static thing. It grows and changes as he does.  He has many obstacles to face in his life, but I had a glimmer of hope that he can adapt to life when he gets older and faces life after high school, whether it is college or training, or whatever!  

I have to remember moments like this when I am dealing with the day-to-day stuff.  There is hope, and amazing moments to come.  Today is today, but tomorrow... That's unwritten!

Do you have moments with your children that you treasure, and hope for what could be?

Videos games and the ASD mind

I just finished reading an article about a Study on video games use by boys.

The study says:

"boys with autism are spending more than two hours playing video games. That’s nearly twice the playing time clocked by their typically developing peers"

The study also claims:

"These results suggest that children with ASD and those with ADHD may be at particularly high risk for significant problems related to video game play, including excessive and problematic video game use,” 

The final quote I will pull from the study is this:

"Attention problems, in particular, are associated with problematic video game play for children with ASD and ADHD, and role-playing games appear to be related to problematic game use particularly among children with ASD.”

I guess the question I have is which came first the chicken or the egg?  Does the prevalence of video games lead those with ASD to be inattentive, or are we boys with ASD normally inattentive, and video games and computers attract our attention, because it is a world full of rules that we can know and rely on?

I don't think that some people who run studies, like this one in Paediatrics, really understand ASD at all.  There have been guys with ASD a lot longer than there has been video games and tv.  There are many ASD boys and girls (like me) that get equally lost in books, card games, music etc.   I used to play lots of video games when I was younger, but before I had any Nintendo, etc i used to sit down on the living room floor and with a deck of cards I would create the most elaborate games, and play them, by myself for hours and hours, until I got hungry, or was told to come to a meal.  I needed that.  I always needed to do something.  Something I could understand the rules to, that didn't change unless I changed it.

I don't purport to understand the NT mind at all, but I know that we guys with ASD can find it a lot easier interacting inside the virtual world than in the real world.   I know that we need to work on our links in the real world, but we also need our oasis.

Sorry for the rant, but I got riled up when I read this, and felt I needed to get my thoughts sorted out, and do this best when I write.

What do you think?

Do video games cause attention problems with boys with autism? Or is it that these boys crave worlds that they can understand?

7 Ways I escape during an #Aspie Meltdown.

I was reading one of my favourite Aspie bloggers posts about how she deals with her meltdowns, and it encouraged me to write about my own.

1. Get on my iPad/iPhone/Mac and read news/twitter.

2. Cuddle any one of my stuffed animal bunnies, especially my 35 year old stuffed puppet FooFoo

3. Listen to music, classical, jazz, or ballad-y music or sing.

4. Write in my journal,

5. Get into my bedroom, with the blinds closed, the lights closed, and tightly under my blankets.

6. Go drive/walk to a body of water and just stare at it and think.

7. Watch movies/tv shows  - Current obsession: Doctor Who

These are all things that I do for and in myself, but I do sometime try to talk with someone too, like my partner.  I like to talk, but I'm not as easy a listener.

What do you do to escape/deal with a meltdown?

#Aspie Overload. How do I stop the World From Turning?

I grew up being like Fix-it Felix.  "I can fix it!".

Whenever something wasn't happening or looked like it needed to happen, or if someone I knew had a crisis (usually in my family), I would step up, and take charge.

I volunteered a lot, and did many things. Partially because I felt that it needed to be done, and partially because I liked being in control, and the high that I would get when I actually fixed things or solved a crisis.  However, I had a hard time saying no, or letting others do things. My focus and memory would get worse and worse the more I asked my brain to do, and then I would start slipping on meeting the expectations of someone, and I would start to lose confidence in my abilities, and then I would forget more things, and have more people upset with me.

The more I felt that I was disappointing people, the more I'd go into my turtle shell and my world would come tumbling down around me.  My health would suffer (which is one way now that my wife knows I am depressed or off balance), I would find it hard to sleep, and I would want to get away from everyone. I would be snarky.

Having fibromyalgia has amplified the health/depression reactions since even my body is letting me down from being able to do the things that my heart wants me to be able to do again.  My mind is certainly a lot less sharp (when it comes to focus and memory) than it was before I got sick 5 years ago, and its hard for me to get the energy to want to do things, plan things, take things on again.

I used to think that I was very outgoing, but still a closet introvert.  I surrounded myself with activities and busy-ness that kept me from focussing on any one activity or one group of friends until the last two years of high school. I recoil though at the memories of all the activities that I got myself into that ended so badly, and made keeping relationships even more difficult.

My Aspieness growing up manifested itself in a manic hyperactivity that gave me my nickname "Tigger", and it manifested in seeking the highs from being smart and figuring things out.  It's only now looking back that I see what I needed, what I ended up doing only when things fell apart around me.  I drew strength from the times I had alone, that I could think and talk to myself, and write things down.  I kept pushing myself into everything that required being outgoing, but I would burn out and bring the walls down around me.

Seeing this, looking back, I am starting to begin to see when I am now getting overwhelmed.  Pain is a huge trigger.  So is hunger, and too much sun.  And definitely too much noise (I really hate ambient noise these days).  I don't tend to volunteer to do too much right now, as I know my stamina and focus level is low, and not very predictable.  

I am beginning to feel the change in me as I approach burnout or high tension level.  I am beginning to be able to tell my family. "Warning! Aspie on Meltdown Alert! Take cover!"  And they are beginning to have patience with me to help remove some anxiety obstacles, and help me get my space.

Learning about my triggers and my thresholds of activity is helping me deal with my life better.  Each day is a brand new start, and I am so thankful for my wife who patiently is guiding me through this confusing neurotypical world.  I hope that I can help my Aspie daughters too.

Beginning the Journey - Discovering you have #Aspergers

I've had a hard life.  I've made more than my fair share of mistakes, and have had to learn many things the hard way. However, recently I've begun a new journey to understand myself after several insights have come to life after years of being in the dark, and quite ignorant  as to who I really was.

The first insight began in earnest when I got very sick 5 years ago with a prostate infection, that triggered a whole bunch of other things. It took a long time but eventually found a doctor who could identify the acute problems I had, as well as deal with the chronic pain which he diagnosed me with fibromyalgia.

The second insight began in my childhood, but was only in the last month that I have been brought to seriously look at my childhood. I am discovering more and more about myself and my childhood as I look through the lens of being an aspie, and having Aspergers Syndrome. I have just recently been diagnosed, and it makes so much sense than all the other labels that I have been assigned throughout my life.

The immense difficulties with reading body language, and subtleties and non verbal stuff that everyone seems to have except me. Being told constantly when growing up to "use common sense" to which I would frustratingly retort "if it was so common, than I would have it!"

I have a lot of analytical skills, I get obsessed with things at at a very deep level, I get so focused on my thoughts, that I totally miss people talking to me, or what they are saying when I am in the middle of a conversation with them. I tend to monologue instead of dialogue.

I think in pictures, and find it frustratingly difficult to retain things aurally. I map out in my mind everything that I am thinking about, and sometimes I find it difficult to use words to describe my thoughts and a wipe board is my best friend.

I am just sharing my thoughts as I go through this process, this journey into learning who I really am. Living with fibromyalgia effects my physical life, and living with Aspergers effects my neurological and behavioural life. The effects of both bear on my psychological life.

Now that I am aware of myself as an aspie, perhaps I can learn how to relate to others, but also understand that some things are just the way I am made, and that is ok.

I hope to write more as I go through my life and the journey of understanding and dealing with Aspergers and Fibromyalgia.

Aspie Alpha Squad - An #Aspie Insight into our attachment theory.

I had a reflection/realization of an aspect of Aspies that is very different from that of neuro-typical people.

We sat down with the school board social worker before Easter, and I listened as he laid down the latest pedagogical theories that he has been learning and is now trying to instruct teachers on.

You see, our Aspie daughter has been having issues in school with her behaviours (go figure), and her teachers just don't know how to deal with her and get her to move away from her rigidity, which comes across as stubborn, and disrespectful. It has been getting increasingly worse so they brought in the school board social worker to help us parent her better.

This social worker explained to us that over the last 50 years our society has moved from an adult-centred teaching/discipline style to a child-centred style. The concepts of time-outs and counting are some of the functions of this style. He told us that based on new evidence over the last few years of the way children's brains work, that every kid has an absolute need to centre themselves to an Alpha - a strong dominant person who they can be assured knows and has everything they need.

The problem he says now is that Alpha's (parents/teachers) in kids lives now are either deferring most things to their child's wishes, or are "discipling" kids by trying to "modify" their behaviours and having them spend time away to "get them to think of what they've done".

An example that this social worker gave us is when a child is acting up in class, the teacher will tell the child to stop, then if it persists, she will countdown to the child to stop, then next step is to take or send the child to some place in the class for a "time-out", and finally if that doesn't work, the child is remove from the classroom to sit in the hall or to go to the office.

Each of these steps is to encourage children to change their behaviours. This may work with some children, for others they get an experience of the teachers attention, which they are seeking. Each step rewards the child, rather than drives the child to "behave". And for these children, they learn that negative behaviour gets this attention that they are desperately seeking from their "Alpha".

I have to admit that I have used these parenting techniques with my children, and it has miserably failed with my Aspie daughter.

According to Gordon Neufeld, in his book Hold On to Your Kids: Why Parents Need to Matter More everyone has a built in need for attachment. If someone doesn't get it from one person, they will seek it from another. He believes that for children if it's not primary caregivers, then it will be peers.

However the more I thought about my daughter and myself as both a child and now as an adult, the more I thought that some of what he said may be right, but it just didn't hit the mark with my daughter.

My daughter doesn't attach to anyone, rather she ends up causing others to attach to her. She may seem at first to be a very engaging girl. Watching her go out and play with new kids that she has never met before at a McDonald's playland would make you think she has excellent social skills at first. But what is she doing? She is trying to get the kids to play games that are part of her created world. She seems fun and exciting, so kids are eager to play with her. But after awhile, she keeps playing but the other kids start moving away, or complain to her or their parents that they don't want to play her games anymore, or that she is being mean. It's not the kids that my daughter was attached to. She was attached to herself and pulled others to her.

It's the same with adults, teachers and even us her parents.

Now that is a big part of my problems parenting her. I am Aspie who feels the world revolves around me and my way is best and really should be followed for the world to work it's best... If I'm really honest I have to say that's a core belief that I have, as do a lot of other Aspies I know. It's not right, and intellectually know this ( as I have been occasionally been proved wrong), but my gut reaction to situations around me come from this innate feeling that I'm right.

I'm an Aspie. She's an Aspie. They say iron sharpens iron, but that means a lot of sparks will fly.

When I say that Aspies seem to self-attach (and my evidence is very limited qualitatively), I don't mean to suggest that we don't have any attachments or relationships with others including our parents or teachers. My interpretation of attachment means someone to defer to for having our needs met and having rules defined and enforced.

When I was a young kid, I loved my mom (I still do, Mom - don't worry), but I didn't really believe I had to follow her rules or the rules of others if they didn't make sense to me. I may have obeyed the rules sometimes (most times, right Mom?), but I intrinsically believed I was right so these rules were wrong. This has caused lots of struggles and consternation in my life as both a child and as an adult.

Only in my last year and a bit have I begun to see the cracks in my core belief, and even though I immediately react from my core belief, I am getting better at reflecting in these "outbursts" and rationalizing the correctness of my perspective. I can tell you it's not easy or natural for me to do this.

I asked my two youngest daughters tonight who was the most important person on earth to them. My older aspie daughter hummed and hawed and then said her fairy book. However in the background my youngest daughter  said "Mummy and Daddy". And that pretty well validated my theory.

Attachment Parenting - Are we knowingly causing our children to feel anxious?

The trick for me now is to figure out how I can take and use this insight to aid and guide my daughters along this treacherous path called life, and help the both of us learn how and when to attach to others outside ourselves.  It will certainly make life interesting...