Thursday, 21 August 2014

Presume Competence, In Me.

The idea of presuming competence is a good one, and often the first thing parents new to this journey are told, but it is also often misinterpreted. As the parent of a child on the severe end of the spectrum (and that is not simply because he is non-verbal, he has high support needs beyond communication), it can be really frustrating to have "presume competence" said to me as a throwaway line. There is so much more to it than that. Presuming competence in my son is presuming that with the right supports and understanding he is capable of learning and developing to his full potential. That potential is totally different to most children of his age. Anything is possible, but it is a fairly likely that Bubbly will require care for the rest of his life. But his potential is the best that he can be, and the best at what he wants to be. That may not include independent living, and it may not include holding down a job one day. The usual benchmarks for "success" don't apply here, and to be honest, I really don't care about that. I know of many adults who live independently and hold down jobs who I would not consider successful human beings (emphasis intended). What is important to me for my kids, is that they are respected and valued for who they are, not for what they do.

Stereotypes abound in the autism world. As autism parents we are frustrated by them, we can be angered by them, and sometimes, they can even be a source of humour. We love memes ridiculing the whole Rain Man stereotype. We joke about our kids' collective genius at wreaking havoc (usually in very messy form), and we rave together about the ignorant things people say. We all have stories of the assumptions made of our kids based on their diagnosis, and so often they lead to people underestimating them- and underestimating us.

That's right, it's not the stereotypes of our kids that are bugging me today, it's the stereotypes and assumptions made of so many of us as autism parents. There are so many schools of thought about parenting, about autism, about disability; and within the autism community these philosophies and attitudes seem to take on a life of their own. It's safe to say that we, as a community don't do anything by halves, but I think that often, that can cause a lot of hurt, despite the good intentions that most people have.

Which brings this back to me, and the frustration I'm feeling at the moment. Actually no, I've felt like this for a while, but today I actually felt strongly enough about it to dust off my laptop and write something. I've been in a real funk the last couple of weeks. I've had stuff going on (independent of autism and my kids), and when I'm not in a great place, everything seems hard, including doing everything that my kids need. The guilt for letting a lot of things slide for a couple of weeks is brutal, but I took some time out, while The Little One had his nap yesterday, and I opened Facebook. I caught up on a lot of blog posts I had saved, I perused some pages, and when I finished I felt like I'd been put through the wringer and heard that everything I was doing or thinking was wrong, and the worst part was, that it was well-meant pieces of writing which made me feel like this.

I often come up against people making assumptions about me as an autism parent, especially as a stay at home autism parent. I confess that I'm quick to give my resume of 12 years in the disability world, management experience, and my university education (see what I did there!) so that people, especially professionals seeing my children, take me seriously and acknowledge that I know what I'm talking about. At the same time I get frustrated when old colleagues think that I know exactly what I'm doing with my kids because of what's on my resume. My doctor asks me how I'm coping, and I get annoyed that my kids could ever be considered a burden, but when people imply that I have it easy because I don't work and receive government assistance it makes me furious. Yep, I'm a walking contradiction. But while these assumptions are challenging, and upsetting, I find the assumptions that so often come from within our own community downright hurtful, and often less easy to shake off.

Anyone who knows me, knows that I never stop trying to learn how to be the best mother I can be for my kids, and I really listen to those who've walked before my kids. I love the insights that autistic adults give into things that my children can't articulate for me. I read a lot, and I listen. I love to learn, and I like to analyse the good and the not so good as it applies, not only to my kids, but to those I used to work with. I like many of the principles of "gentle" or respectful parenting, but I'm also fascinated by behaviour psychology. I'd never heard of sensory integration until my son began OT, and again, I can't learn enough. There are some truly gifted and compassionate professionals out there who I've learned much from. Likewise, other autism parents have a wealth of knowledge within them which simply cannot be obtained from a book or a website. There are so many voices out there, and most of them have something good to offer if you listen long enough.

I've been in the autism world long enough to know that lots of different approaches have their merits, but that the individual needs to be at the centre of whatever you do, and I believe that if that individual feels safe, valued and empowered as they learn, then you are on the right track. It was very easy to stand by this when I was a professional who went home at the end of each day, but as a parent, you never feel like you are doing enough, and there is always someone (usually with great intentions) who will confirm that feeling for you, and I'm really tired of that. I'm tired of seeing great, loving parents, who never stop looking for ways they can do better for their kids being beaten down, and feeling like they can never be who, or what their children need.

I like to think that I am teachable, that I am open to different approaches to raising my kids that will instill them with confidence, and which will make them feel valued for the individuals they are. But so much of what I read lately, while emphasising the value and worth, and the affirmation of that in my children, pretty much says that I don't deserve this myself. My needs are no longer important, my views are not worthwhile simply because I love and spend my life raising my children. I've read that I couldn't possibly have my child's best interests at heart because I send him to a special school, or because I take them to church, or because I take them to therapy. I've read that I've given up because I limit how much therapy we do and because I don't drill my kids every waking moment, and that my children will be a burden to society if they are not independent one day (and heaven forbid if they still need help with personal care). I'm told that I am selfish for bringing another child into the world knowing that he too could have autism. I'm also celebrated because I wasn't disappointed when my second child was diagnosed as autistic, but I can't dare suggest that I sometimes have to speak for my kids (believe me, we're working on AAC, but it doesn't happen overnight). I'm so tired of reading that I don't share my children's neurology so I couldn't possibly know them better than anyone.

Let's go back to that idea of "presuming competence" for a moment, and indulge me- I mean no disrespect but I'm about to hijack the concept for a second. Let's presume that if I am given the right supports and understanding, then I may be able to learn and grow and develop to my full potential too- as a person, and as a parent. Again, I mean no disrespect, and no, I'm not autistic, though those online quizzes all say I'm not quite neurotypical either. I have struggled with depression and anxiety at different times in my life (and I'm not in the minority). There are times where my self esteem and confidence sits around the floor- never more so than since I started this parenting gig! Being an autism parent also doesn't exempt us from facing tragedy and hardships in other areas of our lives which affect how we cope, or function, as people and as parents, and it also doesn't exempt us from needing to feel valued and receiving affirmation for who we are and for what we do, in the same way that our children need it regardless of where they're at.

The problem is though, that we autism parents often shelve our own feelings. We ignore our own need for support and help until we reach crisis point. We soldier on, though we're told that playing the martyr doesn't help anyone (and that's true), but when we want to cry out for help we listen to the voices that scream that we're letting our kids down, and that we are blaming them when we acknowledge that we're struggling. We struggle to accept compliments, or encouragement as parents without feeling obligated to be offended on our child's behalf, when usually all the person is saying is, "Hey, you're doing a great job, keep it up" without meaning anything derogatory about our kids, or about autism for that matter. I say that all the time to my friends with neurotypical kids, because parenting is hard, and their response is usually 'Thank you, I really needed to hear that today.". So why is it so wrong for us to need and accept the same validation as parents from others?

We are our own worst enemies in this community. We have so much to learn from each other, and we have so much to offer each other in terms of support. We can be a real support for each other in this journey, and as I catch up with friends who are going through tough times at the moment- with their kids, their partners, or within themselves, and as I deal with my own struggles, I see that happen every day, and I'm so thankful for that. But on a bigger scale? We need to be valuing the person on the receiving end of the message we're so passionate about just as much as we claim to value their kids, and that's tough when they're not right in front of us.

We endeavour not to make our kids feel worthless and wrong as we teach them, so how about we approach parents the same way, because at the end of the day, most are just trying to do the best they can for their kids. Whether they're our friends or not, whether they ascribe to the same philosophies, or approaches as we do, or not. Whether they're new to this world, and grieving heavily, or they're further along the road to acceptance and even celebration, let's try to provide the understanding, the supports, and the encouragement that that parent needs for where they're at right now- and if you can't do that, perhaps help them to find someone who can. It's a big internet, an even bigger world, and who knows, you might even learn something yourself.