Monday, 13 July 2015

Welcome

Welcome to my blog. 

Actually it's kind of more of a splog. ("You know what a spudge is Owl? It's when your sponge gets all...")

It's a little sloppy, but I'm not going to apologize.  Same as I probably wouldn't apologize about the state of my house if you were to visit, unless maybe you actually tripped on stuff or had nowhere to sit.  It is what it is, and I'm not going to try and pretend to be perfect.  Ain't nobody got time for thatThis is real life.  Chances are I'm typing with a small child sat on my head, or with another one sleeping over one should while I carefully type with one finger and no glasses because reaching to get my glasses might wake the baby, and nobody wants that. 

So I don't do references either, mostly.  This is not an academic blog.  You've got internet, if you want to verify stuff you can use google. 

I'll do my best not to offend anybody, because I like people, and if you're reading this and I met you in real life I'd probably like you.  But I also won't make a habit of replying to comments, so please don't be offended if I don't.  It's either because I don't have time or because I forgot how to do it.  I'm not a real blogger. 

I don't know how this blog stuff works. I'm not going to promote my posts or anything.  My formatting is probably going to be dodgy and variable.  I just want to share ideas and spread understanding about what it's like to be wired up a little differently. 

I've never been quite what is usually called normal, though I guess I do a passable job of blending in, and I've got this little bundle of awesomeness who lives in my house and calls me "Mummy", and she has a combination of neurological conditions that is a little unusual and there's not much information floating around about how to deal with it, so I thought sharing our experiences might help someone. 
And also I want to encourage other people who might feel alone with stuff like this and who might be having a tough time.  Life is kind of hard for most people, in one way or another, you know?  So I talked to a couple of people who do blogging, and checked with my husband, and then asked my beautiful, big-hearted child if she would mind me sharing her story if it could help people understand children like her, and she said yes. 

So if you don't really like what I have to say, you can just close the browser window, but leave out the nasty comments, ok?

Or if maybe you don't agree with everything, but some things are useful to you, just take what works for you, and leave the rest. You know yourself and your own family best, and what works for one person might not be the right approach for another.  

I will definitely challenge certain ways of thinking, but you don't have to take it personally.  I can guarantee I am not writing this AT YOU. I challenge things not because I know everything, but because I think we need to be willing to question things in order to find the best way. 

So I hope you find some helpful stuff here.  Like Red Green always said, "We're all in this together."     


The Hardest Thing

What's the hardest thing about parenting a child with special needs?  Other People. 

In fact, I'd say Other People is the hardest thing about parenting full stop.

Other people judging.  Other people giving not-exactly well-meaning advice.  Other people assuming they know better than you do what your child needs because their child would never have dreamt of acting like yours.  Other people assuming, telling you, and telling all your mutual acquaintances that all the imagined problems your child has are your fault, or that you imagine all your child's problems.  Other people who are convinced that having raised 2, or 1, or no child/ren a decade or three ago makes them better qualified than the paediatricians and professionals you will meet on your journey. 

So, how does one avoid falling into the Other People category?  Step 1: Don't judge what you don't understand.  Step 2: Fully digest and accept the fact that unless you have raised a child like this, in a situation like this, then you can not understand what it is like.  Step 3: Even if you have a child with a similar diagnosis, children are different, circumstances are different, and parents need to raise their children according to their own values and beliefs, so chances are you still don't understand as well as you might think you do, so accept that, and see Step 1.

Remember that cute bunny in the movie Bambi?  If you can't say anything nice, then don't say anything at all.  One of my children would interject here and tell me I got that quote wrong, but I can't help correcting the grammar.  Anyway, it's the sentiment that counts.  It's pretty basic, and so often forgotten by grown adults who should know better.

So, if us 2e or SEN parents don't want to be told about all the things we're doing wrong and how to do it right (and trust me, Supernanny can't cure neurological disorders or developmental delays with a naughty step), what can a concerned bystander do? 

If you ever went to Sunday school, you probably heard that story of the Good Samaritan.  This guy gets beaten and left by the road, and some people make up excuses about why they shouldn't help and hurry past, but then this Samaritan comes along and helps the guy.  The moral of the story is usually given by asking the children "who was this man's neighbour?"  The answer, of course, is the guy who helped him. 

My point?  Be a neighbour.

Smile.  Say something nice.  Talk to the child like he or she is a real, live person, complete with interests, likes, and dislikes.  Offer to help. Therapy and appointments are stressful and take up a lot of time.  Siblings get less than their share of attention.  Offer lifts to appointments or take siblings to the park so they don't have to spend their afternoon in a waiting room, again. Children who are not keeping pace with their peers in terms of development are very prone to critically low self-esteem. Don't buy age-but-not-developmental-stage appropriate gifts.  Spend time on children, let them feel like they are worth time instead of money.  If you feel some thought about what the parents "really ought to do" creeping in, remind yourself that it is not your place to judge, and find some positive to replace that thought with. 

Be a neighbour, not one of those other people.

https://www.youtube.com/watch?v=Vtc7A67kZlQ




** Oops!  I hadn't realized that editing bumps posts up on the timeline, so this is actually an old one from last year, but I fixed some formatting and spelling. 



Sunday, 12 July 2015

The CTFD Approach to Autism

Heard of the new trendy parenting method known as CFTD?  I find it works quite well applied to Autism, too.
 
Here's how I got into it.
 
It started with a couple of phone calls to some local charities.  They offer support for services and families, so I wanted to know more about what is available in the area that might suit the Offspring.  Mostly what I found is that there are a few different organizations, and they tend to each suggest you ring the others, at least if you have any very specific questions. 
 
The next thing that struck me was the tone of voice. 
 
"Are you receiving any support?" 
 
Said like that. 
 
Well, obviously I can't type tone of voice, but if you have a child with an autism diagnosis you've probably heard the voice.  Concerned.  Empathic. Not quite offering condolences, but almost.  I'm sure they mean well, and maybe lots of parents really find it shocking to be told they have a child who is always going to be different.
 
I do get it.  I've read articles like this one.  And I did struggle with the Tourettes diagnosis at first, because I didn't want my child to be judged.  In fact, I wanted her to be able to pass for normal, but I have found my attitude changing about that, too.  But really, I have always hoped that I would never be disappointed about any child who is given to me.  How could I possibly want my child to be any different than she is?
 
I heard a story once about a mother who had a hard time bonding with her baby because she had been expecting a girl, and told the baby was a girl, and when he was born, well, they realised they'd missed a little something on the ultrasound.  I kept that in mind when I found I was expecting my first child.  I made sure I wasn't harbouring my own ideas about who the child would be, what they would be like - I know that is perfectly natural, but seriously, it is a little selfish, isn't it?  Right from the moment that little speck of life took up residence in my womb, I was offering hospitality, not creating my own person.  A child is a person, and a person doesn't belong to anyone but themselves, so who am I to decide what that person should be like?  Quite frankly, my daughter is a little spark of awesomeness in this universe, and I happen to have the job of looking after her while she is small and vulnerable, but who she is is not up to me.  How could I be disappointed? 

So that tone of voice irritated me.  It seemed to suggest that there was something too bad about the fact that I have an autistic child, like it's something to be sorry about.  On the other hand, the irritation did make me start to think about it, and examine just how I saw my daughter's diagnosis. 

Then kind of about the same time I started to think about that, I had some other conversations, with various medical and peri-medical professionals, about my other two children.  And the one common theme to all the discussions was the "don't worry" platitudes.  That really irritated me. 

First of all, the suggestion that my children's development is not something for me to worry my little head over, that I should leave that to their future teachers. 

There's a whole lotta things wrong with that attitude right there.

But then there is also the assumption that if I am asking a question about development, I must therefore be really worried about it.  Parents get a lot of "Of course it's only natural to be worried" lines.  Really, it's hard to get more patronizing than that.  But think about this: If it's ok to be different, if all abilities are accepted in our society, then why do people assume I would be worried?  In fact, the assumption that I am worrying about it suggests that I should be worried.  Humans are social creatures, we pick up on unspoken expectations and adjust our reactions accordingly, without ever even realizing it.  The implication is that if "there is anything there" then I would be right to be worried about it.

I'm going to be really honest here.  I think people who are into 'following' - but not playing - professional sports are weirdos*.  So how would you feel about it if you told me your kid was really into football, and had a favourite team and knew all the players, and I gave you that concerned half-smile with furrowed brows, and said with all the empathy I could muster: "That must be really hard.  Are you getting any support with that?"

*(Just kidding.  But it is true that I don't understand the attraction of spectator sports. And isn't it a little narrow-minded, after all, to think that if you don't understand it, there must be something wrong with it?  See the connection?)

So my kid is autistic.  She's going to need extra time and little more help learning certain things, and it's going to be tough.  Life is tough.  If she were more typical in her development, she'd have to take extra time and work extra hard to learn other things, and maybe she never would.  And maybe life would be easier, but maybe it would be less rich for her.  Autism comes with an intense awareness that most of us just never experience, and so can't even know what we're missing.  I'm not going to pretend it's all positives, but is anybody's life all just good and easy?  Is life about getting through as smoothly as possible, and making sure we hit all the milestones our peers do? Or is it about growing fully into the person we are, and living our (as in, our own life, as who we actually are in essence, not some cultural construct of what a person of our age/race/status ought to be) life fully? 

I don't want to make light of the difficulties and struggles of autism or of the problems that go along with it, but...

Is disability inherent in a person, or do they become disabled by the refusal of their community to accommodate and cherish them as essential members?

If we're going to talk like differences in ability really are just that - differences - shouldn't we drop the sorry attitude?

I'm not saying parents are wrong if they are upset by a diagnosis of autism.  It means a steep learning curve, altered expectations, and will likely call for a number of lifestyle changes - that's a lot of stuff to get your head around.  And there may be other difficulties that come along with it, and of course all parents do worry about their children being ok in life, and autism does give you extra of that sort of worries.  How to be the parent of a child who experiences the world in a  way you do not may not have been something you ever thought about, and it does take a lot of work that probably falls outside of what you imagined your job description would be when you signed up for having kids.

I'm just saying that maybe as a wider community we should try calming the f*** down about autism.

This person doesn't talk? No problem!  They aren't any less of a person for it - ask how they prefer to communicate.  And don't make the mistake of judging intelligence by verbal communication. Or depth of humanity by intelligence, for that matter.

This person likes to flap their hands and shriek when they like something? How beautiful is it to be able to enjoy something like that! Find a way to show them you share their happiness.

This person needs to rock back and forth and make odd noises when they concentrate? No worries! Respect their work and give them the space and time they need, like anyone else.  It's they way they are.

Kind of like how somebody might be stuck with a lifelong condition of having a Geordi accent.  Sometimes you might have to ask them to repeat something, and certain habits of speech might make you uncomfortable, or cause you to feel like they are not your kind of person, but they are no less a person, and with practice you can get to know what they mean.
(I'm not picking on this accent in particular, I just picked one to illustrate the absurdity of saying we accept everyone, but then acting like it's a tragedy that they're actually going to be like that forever.)

My child is always going to be autistic.  She is never going to be like me.  There are a lot of things she is never going to do.  But you know what?  She was never going to be just like me anyway.  (That's kind of the point of bringing new people into the world, IMO; you never know who they will turn out to be, but they're guaranteed to be unique and amazing.  If we let them.)  And there are many, many things she would never experience anyway.  Just like everyone else in the world.  But her life will be her own.  I'm not going to grieve over her being who she is.