Thursday, May 23, 2013

This is why I advocate

This. This is why I advocate. This is why I go on and on and on about the right supports. This is why I get all worked up about accepting people who are different than us. 

click here to watch the video
My kids have another difference than these kids, but they live in the same society- one that holds such strong prejudices that these kids see themselves as different and therefore less and bad and ugly simply because that is what society tells them. This is horrifying. 

This is why I advocate.  Because when I fight for "disability rights" I am really fighting for human rights. Because when I stand up for justice for my kids I am also working towards making a change that will support all kids who are treated unjustly simply for not fitting the "norm". 

This is why I advocate. This is why I will never stop.

Wednesday, May 15, 2013

Hard lessons for my ego

My oldest daughter is 17, and was diagnosed with Bipolar last year. I do my best to be supportive of her, and to be helpful as she learns to navigate life with this new information. I am learning the hard way that intent does not always equal success. 

I organised for my daughter to attend a group therapy type activity after school one afternoon each week of this school term, thinking that it would be helpful for her. She went the first week, even though she was nervous and reluctant to go. 

She came home and told me she didn't want to go again. I began trying to convince her that this group was going to be great and helpful and that she just needed to give it a bit longer. 

As the week went on, I could tell she was becoming more and more anxious about going back. She felt like I was forcing her to go. She felt uncomfortable there, and the anxiety she was experiencing over it was far outweighing any possible benefit she could gain from being there. 

I was wrong.

It was tough to admit. But it was true. I had made a judgement on what would be good for her based on what had helped me in the past. And I had been wrong. 

I spent some time thinking through it all. I started with thoughts like "of course, what would I know?" and "I'm probably making a mess of everything and not being supportive of her at all" because I was feeling defensive and I was overtired at the time of the conversation during which I realised I was wrong. 

My thoughts gradually moved around to things like "well, fine then, if she thinks she can do this alone she can stop using me as her get-out-of-jail-free-card when she's not coping" because my pride had been hurt and I was thinking irrationally. 

Then slowly I became more rational. What if she is right? What if she can do this on her own? What if she is more like her dad than me in this regard and she actually doesn't find it helpful at all to talk things through with a group of people? Just because I do well with that sort of thing doesn't mean she will.... or should. I realised that she needed me to let her make decisions like this so she could own her support mechanisms. I had to concede that there is no point me pushing things on her that she doesn't want. I had to admit she is competent. She is capable of making choices like this and I needed to let her do that.

So I had to swallow my pride. I had to admit that it was not my decision to make. I told her it was entirely up to her whether she went back or not. 

It was hard to do. I really do like to think that I know what I'm doing. I like to think that I am helpful and supportive and can contribute positively to my daughters journey. It was hard to admit to myself that I may not be achieving this goal. But following her lead released her from a huge load of stress and was the right thing to do. I am glad I realised before I caused her much hurt for the sake of saving my ego. 

Maybe all she needs from me at this stage of her life is for me to be her get-out-of-jail-free-card when she realises she has been wrong. And I can be cool with that. 

Sunday, May 5, 2013

The one big worry

I'm a bit of a worrier.

I try not to be. I tell myself I am just being organised and planning for the future, making sure that if things all go pear-shaped I have a plan ready to go. Sometimes that's true.

But mostly I am just a bit of a worrier.

I can usually talk myself out of a worry session pretty easily. I just go through the situation I am worrying about and remind myself of how simple it would be to deal with. I have found this works better than telling myself not to worry because it wouldn't happen. All trying to convince myself my worry won't happen does is get me stuck in a circle of thought that goes something like
....  Somehow having a strategy makes me feel OK again, and I can think about something else.

There is, however, one worry that I can't shift. The strategy method doesn't work. I can't convince myself it is not possible. I tell myself I will just have to do my best and hope it works. But I still worry.

What if, despite my best intentions, I am making a complete mess of raising my kids?

I'm trying hard here. I'm doing what I think is my best. But I am very aware that intent to do right doesn't always mean actually getting it right. And, to be honest, I am actually always making it up as I go.

I don't really know if what I am doing to support my Autistic kids is the right thing to do. I am not Autistic myself, so I don't really know what life is like for them. What if I am making mistake after mistake and they will tell me later that they resent the control I had over their lives?

I don't know at all what it is like to be Bipolar. What if the things I say to encourage are just making things more confusing and inducing anxiety?

What if, in all my efforts to advocate for my kids who have disabilities, I am causing my other kids to feel overlooked and less loved? Are they going to tell me later that they felt unimportant?

Please, don't respond by telling me that you are sure I'm doing fine. I'm not looking for reassurance or compliments here. 

I know that the kids seem happy and pretty well adjusted. Outward appearances indicate that I don't need to worry about this.

I know that it's OK to make some mistakes, that it's inevitable and I just have to do my best. I get that.

I know that I just need to do my best with the information I have at the time and then live with the consequences. That no one can expect more of a person than that. I tell people that all the time. 

But I still worry about this. And I will worry about it. Probably forever. 

The thing is, I'm actually OK with worrying about it. 

Worrying about making a mess of parenting is what motivates me to keep learning, to ask questions, to seek advice and to get help from people more experienced than me. It's what made me swallow my pride and find an excellent psychologist to help me be confident to try new things and keep an open mind about what is important and worth putting effort into. It's what sends me into regular periods of self reflection that result in me changing the way I do things when I feel pushed to my limits. It's what causes me to make time to rest when I feel stressed so that I can keep a clear head as I make tough decisions. 

In this instance my worrying serves a good purpose. And, unlike the worry about what I'd need to do if a solar flare wiped out all our electrical devices, this worry serves my family well too because it works to help keep me in a state of mind that is conducive to self improvement. I make a conscious decision to keep learning, keep trying to do better, keep pushing through the hard stuff. 

I'll probably still find myself looking into at least one of my children's eyes later in life and apologising for stuffing up. But at least this worry has me making a plan for that, too.