|photo courtesy of Luke Hayne, one of my many muses!|
Way back when my own, now adult, children received their individual ASD diagnoses, there was precious little information out there. The Internet was in its infancy and so, to understand what AUTISM - a word I had only heard in Rainman and St Elsewhere- meant, I had to go to what was at the time a specialised, university run, psychological library ( I was young looking enough at the time to pass as a student- first time in my life I lied to 'authorities').
I was a techie. I had AOL and operated in DOS, heck I had used punch cards before I entered puberty.
But still, with that, back then the The Internet was NOT an option for information.
So the University it was.
I SCOURED the DSM IV ET ALIA.
I (and my children) encountered many , well, ummm, ok, yes, I'm going to say it, we encountered MANY ASSHOLES because the Internet was not as all encompassing as it is now. And people, and yes even PROFESSIONALS, were not as, ummmmm, AWARE, as they are now.
Back then we at least had the EXCUSE that knowledge of autism was only in university libraries (and was pathetic at that).
We didn't have the internet to provide us with information at a mouse click any time of day or night.
So how did that leave us knowing MORE then we do now? And What IS the FIVE principle?
Thursday, 25 September 2014
Tuesday, 23 September 2014
Tuesday, 16 September 2014
Human beings are built to be paired off. At some point you seek companionship, in one form or another. Getting out there for the first time after a divorce can be a difficult hurdle to overcome, and finding the right person may seem like an impossibility. Eventually though, at your own pace, you do get out there. You start living life again.
But how does that work in an Autism Household?
When you are the single head of an Autism Household, things are quite different. Routine is so important that you cannot vary, by even a few minutes. So how do you find time to get out and meet people? You cannot just 'hire a babysitter'. You need to secure a respite worker, at a bare minimum of $15-$20 per hour (and that's if you have an EASY kid). If your child is a wanderer, as most autistic children are, or non-verbal. the fear for their safety when leaving them in someone else's care can be overwhelming.
Family may be well meaning, but they can rarely cope with the challenges you and your child face each day, so those offers of help fade away
If you are able to get a break, perhaps the other parent gets them every other weekend, then there are other concerns. (sadly, this is not the norm in Autism Households. The 'norm' is one parent disappears off the map while the other parents alone, without a break)
IF you are able to get back on the market,
Just WHEN do you mention autism?
I personally have tried every approach.
Right from initial contact, which usually does not work as it tends to push the prospective suitor away. They end up seeing a label, not people.
I've tried later on in the mating dance. Rarely does this work, nor is it fair, as the person has developed feelings for you but may not be up to the challenge of dating (or more) a person with autistic children. They will never admit to this, of course. Maybe not even to themselves. It actually isn't because they're a bad person. Everyone has limits to what they can and cannot deal with in a relationship. Psycho ex-wives are one of those limits for me, but so is living further apart than public transit will facilitate (even though I drive) because it just ends up becoming a chore to see each other. That doesn't make me a bad person, its just knowing myself well enough to know there are certain challenges within a relationship that are difficult for me to get past. For some people, a life as unique as that in an Autism Household is so foreign, and therefore so intimidating, that they just can't do it. No matter how they feel about you. Waiting until feelings have developed before bringing up the fact you live in an Autism Household quite frankly isn't fair.
So where does that leave you?
I have found the BEST way is when it comes up naturally in conversation, and it will. For me it is often when talking about chatting on the phone. I will message that I have an autistic son who makes happy sounds, and can be quite loud, so I will call after Xpm when he is asleep. This explains WHY I can't call before that time and sets the stage for any conversation.
It takes a tremendous amount of patience to date someone heading an Autism Household. Your developing relationship is different from anything they have experienced before.
It takes much longer for a parent in an autism household to bring an outsider into their home, let alone introduce someone to their children. Our kids need routine out the wazoo. If something messes with that routine they don't just get pouty, it can send them into a terrible tailspin. So not only is it a MAJOR transition to bring you INTO our lives, but we also have to think about what will happen if you EXIT our lives. We will have no time for ice cream and wine after a break up if you have had any interaction with our children. We will be too busy with wilbarger protocol and sensory diets and keeping our child's anxiety in check, anxiety thrown into a tailspin from the change in routine with you gone. That's not fair to them, or us, and once you've been through that you are quite hesitant to go through it again. So you likely will not be interacting with our children, or coming into our homes, for a considerable length of time. This is why most relationships in the Single Autism Household fail to get off the ground. Because we either cannot accept the risk of introducing someone to our home then losing them, or they cannot understand our hesitance.
And with very little warning.
Perhaps the neighbour parked their car 2 feet east of where they normally do. Perhaps there was a fire drill at school. Perhaps someone rang the door bell. Perhaps Perhaps Perhaps.
All of these seemingly innocuous events could bring on a full on meltdown for our child, and we will not be able to keep the date
Meltdowns are a complete loss of control. They ARE NOT a temper tantrum. It is anxiety spirally down to a horrible place or pain from sensory overload that is very difficult for an autistic person to get out of. They cannot 'just stop' . It is terrible for the person in meltdown, and for those who love them and seek to help. A meltdown is not for the uninitiated.
It is not easy for us to deal with that, it hurts, even though we are used to it. So imagine just suddenly being dropped into that scenario. To be helpless. To not be able to help you or your child, to not know what to say or do. Most prospective partners, if they lasted this long, grow distant under the strain.
Eventually they find a reason to leave.
And then we're alone again
The only unions I personally have seen succeed (other than something casual) are those wherein the new mate has autism in the mix as well, or has a child with a developmental or physical challenge of their own. I have yet to meet a single autism parent in a long term relationship or who has remarried where the partner did not fall into one of those 2 categories.
Most of us go through a period of thinking 'what's wrong with me?', and then 'what's wrong with all of THEM'. Eventually you come to realise you will spend your life as a single parent until your autistic child is no longer living at home. At first that makes you angry, very angry. Not with your child, but with the world. Bitter that the world cannot see past the outer layer of the challenges of an Autism Household and see the beauty and joy and love that we have in abundance in our homes. The wonderfully unique window on the world, and the knock you off your high horse learn what is truly important kinda life we lead. Eventually, once you see how prevalent long term singledom is amongst Autism Parents, once you see that it is not just YOUR situation, you come to terms with it. It is just another of the many commonalities unique to Autism Households.
Yes, human beings need to pair off, that need does not just disappear simply because you are heading an Autism Household. Most of us however, will go decades or longer without that companion in our lives. Some see that as a tragedy but it isn't. It is what it is and that is all. Just another aspect of our autistic homes. Our lives are filled with learning each and everyday. Without the pressures of managing a relationship you will get to know yourself extremely well. Something most people strive for, but rarely achieve. You, and your view of life will grow considerably during your un-partnered time. Remember also that you are not truly alone at all. Not even CLOSE to being alone. Divorce rates in Autism Households average in the 90% range. And yes, once there is a split, no matter the intentions of both, the non-custodial parent often ends up fading out of the picture completely. That means that there are a LOT of people out there in EXACTLY the same situation as you. Search them out. Find others who are single raising autistic families. Laugh with each other. Cry with each other. And know that even though you often get lonely, you are never alone.
In the end what it comes down to is that our children and the lives we lead are uniquely beautiful!
Don't fret over the lack of a partner.
Just sit back and enjoy the ride!
Sunday, 14 September 2014
Its a Small World After All : How People Around the World are Uniting to Protect Autistic Children from being Poisoned
|photo courtesy of Photography by Wayne Pollard|
SO instead, today, I want to talk about something that is UNITING the autism community, worldwide.
But I have to start by way of bringing up a controversy.
I have to use a four letter word, well two actually.
Now whatever your opinions on the matter, I would like you to put them aside, because although this story has at its route horrible abuse happening in the name of a 'cure', it is in truth about those fighting to protect our children from being poisoned.
And that is something that should not be attacked. This worldwide movement should, and will, be lauded.