Halloween - trick or treat??

There was a last minute frenzy today while my son and I did a rushed grim reaper look for Halloween. I cut a scythe blade out of Hardboard and painted it with silver paint...(thank God I had some). We stuck it on the end of a branch that was nearly straight, and as long as a broom handle. He covered his face with some sheer black cloth that he could see and breathe through, and put on a hooded black top. It was pretty makeshift, but luckily in the sleepy little town where I live makeshift is OK. The standards are low on the costume front and the spirit of the whole thing rules. basically, it's about lollies! My son is 15 and nearing 5'10", his years of trick or treating are numbered, (but he still thinks he's a kid)... so I got the neighbors kids from a few house to accompany him. These kids spend most of the day roaming the street on their bikes, with little parental input, and they are all little midgets. Not literally, but they are small for their age. I notice that other families on the street tend to try to steer clear of them, maybe if I hadn't experienced first hand just how that feels, I might do the same...I hope not.

To me, kids are kids, and love is what makes the difference. So I spent the whole afternoon making Halloween costumes out of a huge roll of black plastic I'd had some vague plans for in the garden. Only the two oldest kids could come trick or treating, but I made batman capes for the ones that were left behind. It was all a bit rushed, but I sent them off with my son, the grim reaper. He's that strange mix of child and man at 15. I trust him to help keep them safe, he has great instincts for self preservation, but he's just a little kid on some ways. He benefited from having the other kids...because in his words, they were "great negotiators". (someone else may call them great "hustlers") . Not everyone in this town is all that flush with money, and not everyone had lollies, but apparently the enthusiasm of his little mates won over many a household, and those that didn't have lollies plied them with drinks, chips, and whatever else they could find in their cupboard. It was a match made in heaven, because my son made a great body guard for the two littler ones, and they supplied the charm.

Charm and manipulation are beyond the grasp of many people with aspergers. They say it like it is with little pizzazz, although sometimes their unique take on things can have people reeling with laughter. They don't wear the glasses that stop most people from seeing things as they are, and are surprised at people reactions when they state the obvious, obliviously crashing through taboos . They can only be totally utterly genuine, and that for me is their real charm. It's beyond them to pretend to feel one thing, and actually feel another. What you see is what you get.

One good thing about aspergers kids is that while they struggle to read our complex subtle communications, their emotions are relatively easy for us to read. If they feel uncomfortable...it's usually very obvious.

When he does give, it's absolutely genuine and from the heart. For a long time, I forgot that he had a heart...because we got lost in the struggle, but as the battle began to be won I have seen more and more, that he does have a heart, he does have a desire to give, and it's VERY important for me to give as much attention as possible to those times where he does come through, and as little as possible to the times when he lets me down, or doesn't measure up.

This has been the major shift I have had to make in my parenting style. Anyone who has been around autism for very long, will be able to tell you that some of the things they can come up with can be down right scary. And some of those things can give a well intentioned parent, visions of a very dark future if those traits aren't eliminated. And this is where I'm going to give one of my few quotes from the bible ...don't ask me exactly which verse it is?? if you know you can tell me.. "resist not evil" . This is a strange verse, but the way I read it is this...the more you focus your attention on what you consider to be bad , or worse disturbing behavior, it seems to me that "the MORE you GET. I'm not saying ignore it all together, but sometime the more your focus is on fighting bad behavior, sometimes the less you are actually appreciating and nurturing the potential for good in your child.

Potential is like a flower and what is watered grows. I see attention as the water, it can grow weeds just as well as prize bloom...it matters where you put it.

I came from a family where anything less than slamming bad behavior instantly and powerfully was seen as bad parenting. It seemed to work more or less for their kids, but I found that it didn't work for mine...at ALL. The focus on punishment, to promote conformity just didn't seem to work. Some people may say I just needed to do it louder and harder, believe me I had my loud and hard moments, and they just reinforced my conclusion that what I was doing wasn't working.

I have learned a different, softer approach has reaped rewards. It's not my families parenting style at all to be patient, to let go, to not focus too much on mistakes. But that's what has reaped rewards for me. I have to have faith in my son for him to have faith in himself. So I try to mirror..in a real genuine way my appreciation of the qualities he has that I want to encourage. It's become easier as time goes by. The 'trick' if you want the 'treat' of a great relationship with your child, and for them to develop some of the maturity we all desire for them...is to let a lot of stuff go. Our continual focus on the problems that worry us with our kids, can be just what is keeping them from having the kind of relaxed atmosphere around them that they need to grow and mature.

The kind of days like we had today, where there was very little stress, and everything flowed smoothly, with lots of kids running around, were unimaginable once upon a time. In fact for some years...there were no kids around, because he didn't want to be around them, and they didn't want to be around him.

For us to have a Happy Halloween go so simply and naturally, and to be able to share it with others, is a miracle worth celebrating :-)

unconditional love - the spiritual purpose of autism

I believe that autistic children come to us with 2 purposes. The 1st is to challenge us to the core of our being to examine and surrender all that is not really, truly important, the 2nd is to teach absolute unconditional love, and by that I mean unconditional.

A child with autism is hardwired not to conform to our ideas, beliefs and expectations as to how someone should behave to fit into their culture and society. A lot of the tension they feel and express that can make us so uncomfortable however, is the result of moving in a world that is constantly judging their "inappropriate behavior". That behavior may be causing no harm at all, but because society finds it inappropriate, if it goes against social norms (for example repetitive body movements, strange sounds or even honestly expressed opinions) it can be very difficult to socialize with ASD children. (or adults).

We can tend to see the only solution to the discomfort around socializing with Autistic children, to be to somehow miraculously get them to conform so that we can all feel more comfortable. But I am going to make a very radical suggestion, that perhaps it is not the ASD person who needs to change their behavior. Perhaps their discomfort in this world is partly because the rules that govern our social behavior have become so narrow. Perhaps our values around social behavior need to alter to encompass the phenomenon that autism is becoming.

There is a lot of focus in the ASD world on curing this condition. I've started this blog, partly to express an alternative point of view. I found in my situation that in my struggle to get my son to conform, a slow recognition emerged that unconditional love of my son, as he is, where he is now, letting go of all concerns for the future and being present in this moment with him, was the most important thing required of me. By doing this, I have seen miracles happen, with his speech and social behaviour. (I never thought my son would greet people and say "hello" and "goodbye" and "thankyou" and even shake hands, all of which he does now with a real genuineness). But the first miracle, and most important miracle is the one that happens when we let go of the tension and allow ourselves to relax with whatever situation we are faced with. The first and most important lesson I learned was that my son needed me to love him and accept him as he was, not as I or others wanted him to be. But equally important for our healing was for me to love and accept myself.

My question is: do we need to cure autism? Or are they here to cure us?? Perhaps the answer is a combination of looking within, going with the transformations that autism asks of us, surrendering to the lessons it has to teach us, and looking for the solutions that are physically and behaviorally based.

God moves in mysterious ways.

I've always been a spiritual person,( not always in my behavior perhaps ;-), but while my spirituality may not be as defined in religion as some, I've always had faith in God and a higher purpose to all that is. I've sensed or felt a connection that has given me strength during difficult times, and I honestly don't know that I could have coped as well as I have without faith. It's hard to explain or define, and I won't even try to, but I believe every lesson in our lives, however difficult or painful, has a purpose that is ultimately for the good.

When I say I've coped, I really mean that while there have been times when I haven't been coping at all with the sole responsibility of parenting a special child, I've come through this with a strong and mostly positive and deeply respectful relationship with my son, so that makes me feel like I've coped better than I could have done.

I don't take anything for granted any more. Anyone who's been through the experience of having a child who's onset of the problems associated with autism manifested after a couple of years of what seemed like relatively normal development, will know what it feels like to have your whole world turned on it's head. It's hard to know looking back, how much of the cause was biological, environmental, genetic, or physical. As a parent it's hard not to carry an enormous amount of guilt and overwhelming responsibility when you see your young child basically appear to fall apart. All you want is for that beautiful little soul that you started out with to come back...and they are just not there anymore...or that's how it appears to be.

Although my son didn't receive a formal diagnosis until he was 6 years old, he went through a major personality and behavioral change at just over 3 years of age. His 3rd birthday was the last time I remember, that was relatively normal. It was the last key event before everything fell apart. For his birthday I invited some adult friends as well as a couple of toddlers. I made a cake, and we shared a glass of wine, and the children ran around as children do.

Not long after his birthday, we moved house. Because my son had been diagnosed as potentially gifted not long before, he was attending a preschool recommended by the gifted children assoc. It's hard for me to look back at this time, because it's hard not to hold myself responsible for what happened. The staff at the preschool told me he had been throwing toys at the other children, and behaving strangely in other ways. His whole behavior towards other children changed virtually overnight. He treated them as enemies, and attacked first and asked questions later. I had to withdraw him from preschool. I had been playing in a band, and practicing while my son was in daycare, but I stopped that as well. For the next two years my son wasn't able to be around other children without supervision, as he would bite them or throw things, or tip them off their trikes.

Looking back now, I'm not sure why I didn't seek help then. I didn't understand what was going on, I felt an incredible amount of grief about the changes in him, but his behavior seemed so foreign and alien, that it just made no sense to me.

There are a number of things that I consider contributed to the breakdown, but looking back honestly I can see that even as a young baby he was hardly typical. I personally believe, and this is not based on scientific research, but my own conclusions from my experience, and what I've experienced, or read of others...that ASDs have delicate brains to start off with, and a combination of physical, emotional, genetic and other factors trigger the changes in what was perhaps from the beginning a highly sensitized brain..

In my situation my son had been through a number of major changes in his short life. His living environment changed more frequently than it should have, and though I was always a constant in his life, I could find no one that would love him as I did. At the age when young children begin to reach towards the other...the father ideally, or an aunty or grandparent, there was no one there. The people we did become close to, because they had no real commitment to be there for him, when he bonded with them, disappeared.

I had moved back to my home town when I separated from his father...(mostly because his father was unable or unwilling to share with the care of his son) so that I could be closer to my mother. However she made it clear that she had little time or energy for her grandchildren. She was still working full time and planned to spend more time with them when she finished work in a year or so, however this never happened as she died within a year of finishing work.

Both my son and I developed a viral chest infection that was very hard to shake in prior to his meltdown. I believe that this may have contributed as well. It came with a hacking cough that sometimes resulted in vomiting, and lasted for months. I had breast fed my son much longer than some, but a reaction to foods he couldn't tolerate may have contributed once I stopped. I've recognized now, that we both have a degree of gluten sensitivity and benefit from limiting gluten foods in our diet. Also my son was a premature baby, having been born a month early.

However putting aside the factors that were environmental, if I look at the adults on both sides of his father, and traits of asperges are obvious both in my sons father, who is is classically asperges and my father who also has those traits. Even my mother had the extreme oversensitivity that is associated with autism. She had an inability to take life lightly, and was extremely sensitive to sound, and had a very developed ear for music. She also had very sensitive skin and suffered from allergies. I will talk about my family more in a later post. At the moment I'm just going back to the point where I felt like I lost my little boy, because from that point, I couldn't socialize with him. He was in general, ok just with me, but would push anyone else who tried to get close to him away...at times violently.

There are so many things, as a parent, that in hindsight, I would do differently. For many years I went over and over what I would have liked to be able to change. I ask myself, was he purely autistic, or was he a gifted child who didn't get his needs met?? I don't have answer. The psychologist who assessed him at 6 felt he was definitely asperges. My friends who have known me throughout his life, often found him to have the classic unresponsiveness of ASD, but I could never let go of that one year old that was full of life and so precocious.

Prior to entering my son into the gifted preschool when he was 3, my son attended a local daycare for about 9 hours a week. Before going to the daycare, he would ask for what he wanted, although he was only two, his grammar was perfect and he used full sentences, but after 6 mths of so, he seemed to have learned that screaming was a more effective way to get what he wanted. It was because this and other concerns, (he seemed to have realized already at 2 yrs old that he was different from the other kids, and had started to withdraw), that I changed preschool, hoping to have a better experience at the gifted preschool, however even there he didn't fit like the other kids did.
He always stood out like a sore thumb, in his own world, playing next to but not with the other children.

I remember him at just before 2 yrs old, when he was just in daycare for a couple of hours at a time, as the children were all given their juice, and the other children were saying "juice" "cup" and he was saying "Shawn needs some juice, Janet needs a cup". At 16 months old he had spoken his first full sentence "here comes another ambulance" having only said his first words a few months before. I remember that a month after saying "bo" for book... he had moved onto "I'm frustrated". So for him to then go through a break down in his speech, and for it to become for years almost unintelligible was devastating.

It's only now that I can look back and see that God may have had a purpose in all of this. At the time, and for many years afterward my experiences were only the cause of deep and extremely isolating suffering that I felt I couldn't express to even with my closest friends. I'm trying to tell my story here because if I do, maybe someone else won't have to feel quite as isolated as I did. If there are even parts of my story that you can relate too, maybe it will help. My story is unique to me, but there will be elements that are similar to yours. Perhaps you may even feel better that maybe you don't have it so bad in some ways.

Some people have a powerful and obvious experience of God in their lives. My God is subtle, and speaks to in a language that at first I may not understand. I felt alone in my journey, but looking back I see that God was always there guiding me. Because that path led me to where I am now, in a much deeper and fuller appreciation of the unique gift that my son is. Most importantly of all, I have learned how important it is to treasure and live in this moment as fully as you can, because this moment is where everything that is important is. Dreams for the future may never happen, and the regrets of the past stop us from being present with our children now.

I'm trying to unravel the story of our life, not just for the reader, but for myself. :-) We're not out of the woods yet (another sentence an autistic mind might struggle with...can you imagine what it's like to be someone like me who loves the subtle nuances of language, to have a son who is so literal??) there are whole new challenges as adulthood looms. I try to just live it, one day at a time.

Tales to tell.

I decided when I started this blog, not to tell my story from start to finish, but to allow it to be told in a natural way, as memories and events, ideas and inspirations surface. I have a lot of stories, waiting to be shared, from when my son was a baby to the present. But they will be told in their own time, when they urge me to be told.

Being the parent of an ASD (I still don't like the D for disorder...perhaps it could be D for Difference instead?? i'll make it for now, "A Special Dude", he wouldn't like being called dude, but this is my story ) child has caused me to reflect deeply on many aspects of society, from the expectations of my own family to the broader community. It's made me a kinder, more forgiving, more compassionate person...and has made me re-evaluate much of what I formerly took for granted. I now see many of societies subtle rules through my sons eyes, and recognize the gaping holes in logic that we at times call "politeness". I've learned to be more questioning of what I once took for granted....and have learned to be braver in standing my ground when a social or cultural norm doesn't suit who we are as individuals and as a family.

I also learned to hide. To create a private world where we were free to relax. I learned to relish the gems of insights that come from my sons mouth. I've come to secretly prefer his rich world to the stifled social order of the day. I enjoy the freshness and pure novelty of his perspectives, and his ability to say what we all know...but no one had ever said before., in a way that the truth is undeniably laid bare for all to see.

For years, every time my son opened his mouth, he sent my brain spinning. His reality was so left of field of my own that I had to shift way beyond what was natural and comfortable to even begin to understand him. For years days and weeks went by when every conversation was a struggle. Just to hear what he had said was a challenge as his speech was broken, sometimes inaudible and idiocentric, but even having heard him correctly, to know what the hell to do with what he had just said, just about did me in?? He challenged my parameters, my conditioning, my upbringing and my values time and time and time again with nearly every sentence he spoke.

Because of this I am absolutely stunned that not only is his speech now intelligible, he has a clear deep manly speaking voice for a 15 yr old.....but we are now able to have conversations that are deeply stimulating in a positive way. I have no idea what the future with bring. He has landed me securely in the present. I have seen changes that I would have considered to be miracles, when there was a time those changes seemed absolutely impossible. I can only have faith in the daily unfolding of our lives.

Cast out to sea.

When you find yourself with a child with autism, it feels something like being thrown into the water far out at sea. The safety and security of the known and familiar, is all at once out of reach, and you know that if you do manage to make it back alive, you will never again be the person you were before.

If you're lucky, you may find a small, but isolated island on which to regroup and gather your resources for the long and treacherous journey back to society. There are some that won't make it, but for most the journey, if faced squarely & with strength and courage will be rewarded in ways that are deeply treasured by those who can look deeply enough into the abyss, to find the gems that it contains for those brave adventurers.

Those who have been given the label of "Autism" have as much to teach us as we are willing to learn. Many of them have been born, so sensitive to vibration that much of this world can be unbearable to them. And watching their attempts to control, what feels to them uncontrollable, can be unbearable to us. But as we learn to accept their needs, and learn to not judge them by the standards handed down to us by others, and to be kinder to ourselves when our children don't fit where we are taught they should, the world becomes an easier place for them to live in, and for us to share with them.

I have found it to be an absolutely fascinating journey from fear and confusion and powerlessness in the face of what was to me very alien behaviour from my son...to feeling absolutely blessed to have an individual in my home who I feel at times has more to teach me than I have to him.

However there are few that share the blessings my son brings me. He has never made it easy for any but the truly genuine to get to know him, and they were for a long time, few and far between.It's been a solo journey for much of the time, -(Although thankfully that has changed in recent years) but my son & I have over time developed a relationship of respect and trust. We are still both growing, and learning who we are. All the goal posts I had as a mother initially were torn down, until I found a place where we could rest in the moment, live each day as it comes, and allow the future to unfold naturally in it's own course.

Although you may feel that you have been placed in circumstances that are beyond your ability to cope...you are not alone. It has taken me a long time to see the guiding hand behind our lives. Even if there's no one there on a day to day level, (as there wasn't for me) , that there was meaning and purpose behind what at first appeared to be thrust upon me as a random and very bad throw of the dice, has become very apparent as time has gone by. I can only assume that the higher forces guiding me knew exactly where to place pressure upon me, because the slow...and at times very painful process of transformation that came with the isolation & exhaustion of mothering a special needs child has ultimately been a liberating one.

I painted the picture at the top of this page not long after my son had been diagnosed at age 6. I portrayed myself as the scarlet woman, isolated, on an island with her alien son. This was pretty much how we were treated by other parents during his early school years. There is a common understanding amongst many people who have had little experience with autistic disorders, that, especially at the higher functioning end of the autistic spectrum, the condition, and it's manifestations, are purely a result of bad parenting.

I have to say first, that my son is at the milder end of the autistic spectrum. Severe Autism, associated with little or no verbal communication, or connections with others of any kind, and frequent repetitive and obsessive behavior(for example wanting to watch a washing machine all day, or rewinding a tape back and forth) is at one end of the spectrum, and Asperges syndrome, a high functioning form of autism associated with social and communication difficulties, and a broader obsessiveness (for example with a particular area of interest, such as trains) but that at times can also be associated with very high intelligence or giftedness, is at the other.

The line between Autism and other diagnosis, such as giftedness, ADHD and even Schizophenia, is sometimes a fine one. In fact it's my experience that there are elements that are common to all. But the labels only ever offer indications that there our other people in a similar situation, experiencing similar challenges...(and opportunities ...I think to think there is something positive to be gained from every situation). I have friends who have refused to label their child ever...at all, when their child obviously would benefit from having their needs met and understood.

I'm hesitant to ever give labels too much weight though, and I believe that our responses to our children have a huge impact on their well being, their development, their future and their potential. So a label to me is only a signpost...this is where you appear to be now. It is up to you to be creative and challenge the boundaries, and go from there to somewhere that will surprise not others, but yourself!

But if your child is struggling with obtaining language for example, it's helpful to understand the kind of brain that is experiencing this delayed development in this area. They may be very advanced in other areas. I don't necessarily see lack of language as lack of an intelligent and highly sensitized brain...in fact the reverse can be true.

The special needs area is full of all kinds of information, and so called "experts" the experts in my area were not very helpful...so I left them behind and found my own way. However my son is 15 years old now. There has been a lot of work in understanding Autistic Spectrum disorders, since we first came across the mental health system in New Zealand, and because it seems to be becoming more common, a lot more parents are sharing their experiences and what they've learned. The world of mental health professionals can be overwhelming, and it takes courage to trust our own instincts as parents and guardians of our children. It may appear that a lot of money is required to access the resources that our children need to thrive. I never had this, I never accessed any resources that were much help, apart from regular phone calls to a very close friend who also had a son with a similar condition, who held my hand, day to day, week to week and year by year. But....there are people doing wonderful work with Autism, if you can find your way through the conflicting maze of information and resources to anything that works for you....go for it!!.

I used to think that more money would be the answer to just about anything, but my experience with my son over the years and led me to challenge even this. Even without the expensive programs, there is hope. I can only share what I know from my own experience. It may not be the right approach for you, and I encourage you to find your own way through the challenges you face...but maybe, just maybe you'll find something of value from my story, and I may gain something from yours.