Epiphany: It's all my fault. Again.

I don't know how I missed this before. I don't know why it surprises me.

Our government funded services have been changing the criteria for the therapies they provide. They have been in-home therapy only, for as long as we have needed services, which has its own pluses and minuses. (see this post My house, their rules) That hasn't changed.

The 'new' approach is called "family focused". It means that more and more emphasis must be put on teaching the parent how to work with their child, and the methodologies recommended by the specialists. The parent present during the daily therapy sessions is expected to be hands on for the whole session, involved in all the activities. 

Now, it has been bad enough that I have to open my home to strangers who tell me how to parent and who critique my housekeeping and manners. 

Now I am being judged on my mood and attitude at every single session.

I suppose I should feel grateful that services for my child are available at all, but I am really tired of being expected to grateful for the presence of people I am not comfortable with, doing things I am not comfortable doing, for my child, whom I worry is going to lose ground because I am not learning fast enough. 

Then it hit me. The government is funding, not help for my kids, but training for me to do the jobs of all the people who are being compelled to train me, so that they can provide less qualified aides, and fewer specialist hours. In short, they are giving short term funding to train parents to take over as therapists for their kids, so they needn't pay for those therapists as the children get older. They are making it harder to get services for so called "high functioning" autistic children. Integration is the only viable option for a child who is of average or higher intelligence, but has social and sensory special needs, assuming you want your child to get the curriculum that will keep them at grade level with their peers, but fewer supports are available for those kids. 

It is no longer enough that I am raising my children, now I am expected to be their occupational therapist, speech pathologist, physiotherapist and developmental psychologist. 

So if my child does not succeed to the best of her ability, it is my fault for not learning quickly enough, or working hard enough. It's all on me. Again.

What I learned in grade school

People often seem to look back at their grade school years as a time of carefree childhood joys and a lack of responsibilities and woes. Like that book "All I Really Need to Know I Learned in Kindergarten" (Robert Fulghum), we think of it as a time of simple rules and simple moral lessons.

My memories of grade school aren't like that.

I was bullied. I was abused. I hated myself. I felt guilty, afraid and worthless.

I didn't believe that the future would be any different.
I would never have believed anyone who told me it would get better.


If I could somehow transmit to that kid the wisdom of forty-some years of life lessons, stuff that really mattered,  it would look something like this.

1. Bullying isn't about you, and nothing you can or should change about yourself will stop a bully from doing what they do. You are bullied in grade school, you will be bullied in middle school and high school, and right into adulthood. The only measure that will help is to get away from wherever you are being bullied, and the bullies themselves.  You will find safe places and people, and hopefully you can avoid the worst of the abuse by getting out of the target range. Most of the time the damage it causes won't be bruises or scrapes, but inside, where you can't "prove" you are damaged. Telling adults won't help most of the time, because adults don't know how to handle it either. This isn't fair, but it is true. Try to find adults who will help to separate you from the bully, or remove you from the situation. It isn't your fault. You are not defective or wrong. People will not always like you, but they have no excuse for bullying you. 
2. Sexual abuse isn't about you either. It is not your fault. None of it.You didn't ask for it. You don't deserve it.  No matter how old you were, how you felt about what was done to and with you, how you acted or didn't act, it is not your fault.
3. You aren't going to be good at everything you want to be good at. Don't let it stop you from enjoying what you do. Don't let the expectations of your parents or friends define your worth. If no one is paying you to do it, you answer only to yourself. 
4. No matter who says "you can be anything and do anything you set your mind to", there will be things you can't do. Don't hate yourself for trying hard, but not making the cut. Don't hate yourself when you realize you can't do what you wanted to. That kind of thinking leads to believing you are a failure, because you have failed. You will find you are good at some things that you hate doing, and bad at some things that you love doing. You will find things you can and want to do. Work at those. Play with the others. Take what joy and learning you can from everything you do, even if you suck at it.
5. You will never be better than everyone else at something. There is always someone better, and there is always someone who will lord it over you.You will find that being in the top 10 when you didn't have to work for it will never give you the satisfaction that being in the top 25 at something you have to try your hardest to get good at will give you. How you compare to others really isn't important. 
6. Try to set goals that you can control, not to be better than everyone, but to get better than you were. Don't let anyone tell you that you should give up because you will never be the best. If you are as good as you can get, and better the more you work at it, then you have accomplished something. If you take joy in what you can do, what you can't won't matter so much. 
7. Find work that you like, but don't worry if you don't love it. Not everyone can make a living at what they are truly passionate about. That said, don't settle for work that you hate, just because it pays well. Don't let your job define your character, or your wage define your worth. If you do manage to make enough at something you love, count yourself lucky. 
8. Nothing good lasts forever. Enjoy the moment, let go of it, keep the memory. Nothing bad lasts forever. Learn what you can, then let it go too. Time moves, things change. Don't focus on the reward, or dread the punishment. Live through it. Move on. Don't focus on the past either. Learn, but don't let it control you. You make mistakes. You do amazing things. Neither is a reason to stop enjoying and working at what you do.
9. You can't make the past go away. Trying to pretend it never happened is not helpful. Denying the pain is denying yourself any way of easing it. You can't find help without admitting you are hurt. 
10. The damage that has been done to you is not your fault, but no one can help you until you are ready to work at repairing the damage. Really. If you need to set blame, go ahead, but blame won't really help you heal. Forgiving the bullies and abusers isn't necessary either. Make them unimportant, take away their power to harm you. Accept that terrible things have happened to you, and it isn't your fault, but the burden is on you to seek out and to accept the help you need. It isn't fair. It just is what it is.
11. Take your share. Enjoy your accomplishments. Being humble is good, but being self-depreciating is a bad habit. Take credit when it is due. Take sincere compliments gracefully, even if you have trouble believing them. You  are worthy. You are deserving. You matter. 
12. It really will get better.  It will never be perfect, but it will be better. 
13. You will find people who don't want to change you, but will love and accept and even admire you for who you are. They won't care if you are awkward or uneasy. This is your tribe. They will be few and precious, so hold on to them. Some will be easy to find, and some will take a little time to recognize as kindred spirits. They will, in time, be closer to you than family. 

I know these things, but have trouble living them. I ache for the child I was. I fear for the pain my children will inevitably feel.

I'm still a work in progress.  I wish life was fair, but I know it isn't. I can't change that. What I can do, hopefully, is heal. Be an example to my kids. Try to show that my scars are not what defines me, but are a part of me just the same. That I have nothing to be ashamed of. 

Purposeless Functioning Levels

Several times recently, people who are not directly connected with autism have asked me about "functioning" as a term to describe how severe a child's autism is. One was about how "high functioning" Monkey was, compared to Kitten. One was to ask if another child on Monkey's school bus was "lower functioning" than Monkey, because the kid had noise cancelling headphones on the bus, and some more obvious odd behaviours when he was picked up by his mum. The third was from a teacher who has not taught any autistic kids before, about what level of "functioning" an autistic child had to have before they could be integrated into a mainstream classroom, as Monkey is.

I don't like the terms "low functioning" or "high functioning" in relation to autism. For one, it is hard to quantify a meaningful measure when the spectrum has broad as well as deep criteria for diagnosis. Is a child who is friendly and interacts well with adults,  has poor or no language capability, many sensory sensitivities that limit ability to be in high stimulus environments, and can also draw or paint exceptionally well, "high" or "low" functioning? How about a child who communicates with language, is very good at academic work, but has significant problems with social situations, can't write with regular writing implements or play any kind of sports due to apraxia, and has constant and noticeable stims?

When people use this measure, you can see that they want to sort children into "boxes" to make thinking about them easier and less complicated. At best, they see "functioning" as a sort of range of values from 0, unable to function within society at all without assistance, to 100, virtually indistinguishable from "average".

The worst part of these terms as they are used isn't just the assumption of a single measure to apply to a whole range of symptoms, behaviours, and sensory processing disorders. It is the whole concept of "functioning".

Because what people seem to mean by "functioning" is "how well does this child meet our expectations of normal?" and "how well does this child fit in with peers?", which boils down to "How well can this child hide the differences that autism creates, and fake being normal?"

My kids are whole beings. Kitten is more at ease socially, but has little practical language. Monkey has come past being non-verbal, but has a significant speech impediment, and suffers socially. Kitten has more frequent and easily recognized stims, but Monkey has more disruptive stims that are often misunderstood to be deliberately annoying behaviours. Kitten has more violent behaviours towards herself and others, Monkey has crippling anxiety and low self-worth. Some of these things are going to be "treatable" and certainly some of them will change over time. Does a child with "high functioning" autism who later exhibits more unusual and socially awkward behaviours become "low functioning"? Does a child with "low functioning" autism who learns to effectively use language suddenly become "higher functioning"? Autism is a part of brain function, it doesn't go away just because the child learns and grows.

Are we really more interested in how a child manages to pass for "normal" than how to help them find their own ways to adapt and thrive, and to find their own place in society as their own authentic autistic self?  

                                                                                           

Victim shaming

Rape culture. Bullying. Positive thinking. Self defense. Disease survivors. Empowerment. Bootstrap economic strategy.
All of these things, good, bad, wrong or right, have one thing I can't bear to stay quiet about.
Victim shaming.
The irony is not lost on me, that some of these are supposed to be beneficial, even preventing harm to people through their own actions.
That is what bothers me.

Rape culture is an obvious evil, and one of the worst for the brand of victim shame that involves blaming the victim for motivating the crime. This normalizes a criminal act that does terrible harm to the victims. The same can be said for bullying. The idea is that if the victim of these acts would just take actions to prevent or counter the perpetrator from committing the acts against them, these injuries would not take place.

So a rape victim should have been less provocative of a sexual reaction, by dressing less provocatively, or by changing their attitude or demeanor, or by not being in places where a rape might take place. If they had to be there, wear that, or act that way, they should have been expecting to raped, and if they couldn't defend themselves, it was their own fault.

A bullying victim should stand up for themselves, defend themselves, fight back, or stay with people who can defend or deflect the bullies. If they continue to be bullied, it is because they are weak, or poorly taught, or too cowardly to ask for help.

Diseases are for the weak, too. If you would just think the right thoughts, eat the right foods, behave properly, worship a god in the correct manor, abstain from dangerous behaviours, you wouldn't get the disease in the first place, and if you did, you could fight it off, and be a survivor.

If you think positively, then, all things will come to you. This myth says that if you visualize success, you will succeed. Fake it till you make it. Believe that you will triumph, and victory will be yours! If you fail, you didn't try hard enough. You didn't have faith. You didn't genuinely believe.

The whole thing boils down to being in charge of your own life, your own destiny. This is positive, right? Empowering? We really want to believe we can control everything.

Except if it doesn't happen. Then everything that goes wrong is your own fault. You are sick because you have a "victim mentality". You were raped or bullied because you set yourself up for it. You failed because you are stupid, or you didn't try hard enough. You are poor because you didn't work hard enough.

This is making the status of being a victim of the actions of others into a shameful thing. To the point that we change the language of being a victim, to being a "survivor". A "victim" is weak and pitiful. A "survivor" is powerful, admirable. This is said in good intention, to give the victim a sense of hope, that they have come through bad experiences, and are empowered to survive more.

Again, except when it doesn't happen. When you succumb to pain, disease, oppression. The blame shifts from the cause to the effect.

 Being a victim is a fact, not a choice. Bad things happen to people who do not deserve them.  There are things we don't have control over. How do we help to prevent the bad things? Well, we can teach that being a perpetrator is shameful, and being a victim is not. We can try to teach that no one is within their rights to bully anyone just because the target is powerless to stop or prevent the action.
When those who don't learn these things commit these acts, we can focus on helping the victims, not asking what they could have done to prevent the problem, but what we as a society can do to stop it from happening again. We have to stop expecting the victims and those in danger of becoming victims to take all the action, when the existence of those who do harm, as well as the opportunity to do harm, is something we need to tackle as a social problem. We need to recognize that when someone is suffering from poverty or disease, they deserve help and understanding, not pity, nor derision.

Being a victim is not a reason for shame. Ignoring or blaming the victim should be.

Deserving

I find that with the coming American elections (yes, we feel the effects even up here, the neighbours to the north), I am more and more disturbed by the political rhetoric of privilege and entitlement.It isn't so very different in Canada. The questions of who gets the "rights" of citizenship are always relevant issues.

I have a problem. Nothing new, just the reiteration of every problem I have ever had, playing through my brain on a loop.

There is a lot of talk about who deserves to be helped, supported, subsidized or assisted by the government (ie, the people. You. Your tax dollars.), and who should be told no. While corporations get bail outs and tax breaks, single parents get assistance cuts, homeless citizens get their shelters and housing options removed, working adults have to try to live on less than what a lot of the complainers pay for coffee, seniors and people with disabilities get shamed and marginalized, immigrants get ridiculed and reviled, people on welfare get drug tested and judgements based on what is in their grocery carts.

So who is deserving? Let me give you a clue - not the corporate entity.
Everyone else. EVERYONE. Every human being deserves to have what they need to live a healthy, secure, enjoyable life. And those who have this by whatever means they have achieved it have no reasonable cause to say otherwise.

But what about welfare fraud? What about illegal immigrants who are breaking all the laws to get here? What about drug addicts and lazy bums who don't want to help themselves?
Yes. They deserve to live and thrive and be happy. All of them. Even those who have committed crimes and are incarcerated deserve to be treated like human beings. There will always be people who will take what they are given and waste it, refuse the help they are given, or try to harm those who try to help.

There are people who are mentally or physically ill, who need to be supported and monitored, even though they may not want to be helped. Drug addiction and substance abuse are as much a result as a cause of poverty. There are addicts at every economic level. Are we really saying that only those who can pay for it should get help? That only those who follow a strict set of moral and philosophical views (at least outwardly) deserve our support? I guess I betray my socialist soul here, as I say that when we make these decisions, we are letting down our society, our fellow humans. Just because you don't like someone, doesn't mean they deserve to die. Because you feel someone is wrong, doesn't mean they deserve to be treated as garbage.

A person on food assistance should be allowed to buy cookies and treats for their kids now and then. And for themselves, too. Why is this so hard to take? A treat can make living in poverty less miserable. Of course, if you see poverty as a moral failing, it colours your perception of "deserving" to enjoy life. People don't generally choose to be poor, though, nor are circumstances always due to poor choices. We don't get to choose where or when we are born. We don't get to choose what our neighbourhood or school is like growing up. When we become adults, we can make some choices, but much of what we have depends on what our parents had. If we as a society can give people a better start, hopefully we can change some of these outcomes, but only if we start with that premise that everyone deserves that better start.

Just because someone is poor, doesn't mean they deserve to die of preventable causes, because they can't afford to see a health care provider. Just because someone has a long term or permanent health issue does not mean that they do not deserve health insurance. Medical procedures should not be based on whether the patient can afford them. Frankly, those who need to get themselves or their families medical treatment don't deserve to be reduced to poverty to get the help they need.

It comes down to feeling deserving, at a basic level. Feeling worthy of existence. Like a basically worthwhile human being, whatever our circumstances. 

I have never entirely managed this on an emotional level. I remember very clearly when I was 14, and talking to a school counselor. She asked why I didn't come for my appointment, and I told her it was because my teacher wouldn't let me go without a pass, and I had lost mine. She then asked why I didn't have the teacher call her and get her okay.
"Because it wasn't worth it. I'm not that important. I don't deserve special treatment."

Deserve. Special treatment. Important. Worth it.

Now I fight for my kids to get what they need at school. So they can be as successful as they are capable of, because I know they are worth it. Not because they are in any way more important than every other child in school. Because they are equally important. Because they need what they need, not what other people feel they are worthy of, but what all humans deserve. A chance to flourish. The means to enjoy life. The opportunity to contribute to human society.
They are deserving. We are deserving. We are valuable. We are worth it. All of us.