Saturday, 10 September 2016

Why I'm Not Worried About My Child's Development (More on the CTFD Approach to Autism)

I was writing before about how we, in the general sort of 'we', can calm the f*** down about autism.  This idea is based on adapting the CTFD Parenting method. 

I wanted to expand a little more on the topic of worrying about our kids.

My 3rd child has already flagged up some early autism markers on the development screening check.  Not responding to his name, not holding out his arms to be lifted, no two-way turn-taking in play or conversation, no imitated speech sounds, in fact no imitation of us at all.  These are some fairly definite delays in communication development in an otherwise bright and fast-growing baby.  But I'm not actually worried about it.

Why not?? Here's the thing:  There's a difference between tracking and supporting development, and being worried.  So he has some early autism markers.  So did my second child.  Oh no.  Panic, panic.  My children might have some autistic traits.  Oh, wait, so do I.

It only recently occurred to me that professionals who evaluate my children will, in their minds, be looking for something wrong with them.  I don't see my children as being broken.  They are different, not wrong or damaged or broken.  Different can be hard, but it's ok.  They don't need to be fixed.

So why would I seek a diagnosis or evaluation at all, then? Well, that's a good question, and one worth writing about in more depth some other day.  The short answer, though, is that I want to know more about their strengths and challenges, and I want to know as soon as possible so that we can support their development as bets we can, and try to avoid any missed steps in their development that will be harder to make up for later on.  But I see that as proactive parenting, not as worrying.

Everyone is so quick to reassure us.  "There's no need to be worried." "Some children just pick these things up later. " (Really? That's a fairly significant chunk of typical development to 'just pick up'.)  "Maybe it's just an atypical development pattern." (Yeah, like autism.) "We'll see what happens when he/she starts school." (Right.  Because early intervention isn't really that big a deal. - Oh, wait, what about all that research and the 'earlier the better' stuff?)

The thing is, all those people are talking from the point of view that I must be afraid that there is something wrong with my child.  I really don't think fear-based language has a place on child development screening questionnaires, and I don't think it has a place in conversation between parents and professionals or para-professionals unless a potentially life-threatening medical condition is involved.  I've never yet heard of anyone who had a fatal case of autism. 

Granted, I might be less casual if one of my children failed to begin speaking, or was really severely impaired in some way, or was self-injurious or violent.  And there are plenty of parents out there who do have every right to worry about those things.  Even the more everyday worries about "Will he be ok at school?" "Will she make friends?" "Will his teacher understand him?" "Will she ever hold down a good job?" are perfectly valid, and I don't mean to belittle them.  It's the contagious fear that there might be something wrong that I don't think fits.

I know some fantastic, intelligent, empathic, autistic adults.  They are some of the most deeply vibrant people I know.  Some of the people I love best in the world are on the autism spectrum.  I'm not afraid of my children being like them. 

So, this little child of mine is showing signs of autism.  I'm not going to sit back and see how things pan out, as those people who apparently believe that autism is to be feared would have me do.  Just like I'm not going to drop toilet learning and see if he one day starts using the toilet.  Or let him watch television all day and see if he learns to read by school age.  And it's not because I am worried about toilet learning, or worried about him being illiterate.  It's because I am a parent.  I do parenting.  I watch over my children's growth with delight, and notice when they seem to need help getting something, or when they need a little encouragement to go on to the next stage, or when they are ready for a bigger challenge or more independence. That's parenting.  Maybe he will pick up communication skills without intervention.  Maybe he would teach himself to read while watching Paw Patrol with the subtitles turned on. But reading him stories and playing letter games is not going to do him any harm, and neither will playing more face-to-face social games.  You could call it early intervention, but I would just call it parenting.

I won't do my child any harm by playing with him more, so why not do it? I can't quite get my head around why people who are supposed to be helping parents do their job would not suggest simple interventions to support social development through play and parent-child connection, and instead tell them "Don't worry".  Unless it's that they see autism as some kind of incurable disease that nobody would want to have, and not just a different way of being.  And that is actually something that I think is worth being scared about.


Progress and Hope

Once upon a time, we had a little girl who needed help to dress, go to the toilet, and eat.  A child whose daily rages broke furniture and left teeth marks.  A child who could not hold still, even to fall asleep; whose slurred speech consisted largely of repeated questions or phrases, or toilet words in a sing-song voice, punctuated by harsh vocal tics. A child who would learn a new skill or information only to have it disappear as if it never had been.  A child with whom it was becoming difficult to interact without triggering spitting, hitting defiance. 

It felt like we were losing our beautiful, precious, special child behind a screen of challenging behaviours, symptoms of her neurology.
I don't like to think about the reality of that time, much less describe it, and still less post it indelibly on the internet for all and sundry to read.
BUT ...and it's a big 'but'...
I want to give other families who are where we have been HOPE that it can get better.
Right now, we have a child who eats well, sleeps less than average but well enough, is growing and learning at a rate that has made up much lost ground, and who fills our home with joy every day.  There are still meltdowns, but far, far fewer, and with far less intensity.  She speaks clearly and eloquently most of the time, and can tell us about the wonderful creative ideas she has.  Tics are minimal, and mostly unobtrusive.  She plays and works calmly at her projects, absorbing information in depth and detail. She makes her own bed, brushes her own teeth, and is learning to help pick up toys.  She has performed on stage in a dance performance, and makes beautiful paintings.  It's been like this for so long now that it's hard to remember how it used to be.
We don't peddle chocolate-covered miracle pills here.  These changes were brought about by the grace of God and by this child's own strength of character; all we had to do as her parents was to love her through all her challenges and clear the path for her to make these great leaps forward.  And it took time.
I'll write in more depth about the steps we took to do this as I get time, but I don't want anyone to read this blog as I post about PDA strategies and think I'm talking about "mild" autism or PDA or Tourettes, and lose hope thinking that their situation is much worse.  Trust me, we've been there, and it was pretty bad.  But it got better.
Finding out about PDA was our first step in getting to where we are now.  We stopped all attempts at conventional discipline or motivation, and the upward climb started there.
I'll be saying this a lot, and in as many ways as I can think of, because I think this is essential to understand when dealing with PDA:
By "behaviourist strategies" I mean reward and punishment, clear and consistent consequences, star chart and naughty-step style approaches.  In fact, they can make things worse.  They might work a little, for some people with PDA, in a limited way, but even then the cost is probably not going to be worth it.  These strategies increase the pressure to conform to expectations, which increases anxiety, which increases the defiant and explosive behaviour that is so often a part of PDA. 
So dropping all of the above completely was our first step to setting our child free to move forward again. 

We had to first of all get her anxiety levels down to a baseline from which she could engage without being hampered by her own defensive reactions - reactions that happen to look a lot like extreme hyperactivity and deliberate defiance.
We did a "demand detox", dropping all unnecessary demands, and keeping as many things negotiable as possible.  It took about 3 months before she was ready to start reintroducing demands, very slowly and gently.
Then we set to work on sensory issues.  As we started looking for triggers, we realised that Sensory Processing Disorder (this isn't a separate diagnosis, this comes along with autism) was underlying a lot of the challenging behaviour and outbursts.  Sensory sensitivities also contribute to anxiety, which in turn can manifest as defiance. 
We had already taken our daughter out of school, so we went through the home environment and identified all the sources of problems.  Noisy toys, scratchy jumpers, all went out. Temperature, sound, sensation, smell, cycles of activity and rest - all had to be considered and addressed. The more triggers we found, the easier it became to find them, so although this was a daunting task at first, it went quickly and was highly effective, with tangible results after each change.
Through all of this, as always, we worked to keep our child's physical needs met as optimally as possible, and this got easier as things got easier for her.  Sleep, food, warmth, and physical care, I believe, are opportunities to fill a child with a sense not only of physical well-being, but also of being nurtured and loved. Children need that sense of nurturing in order to be able to fully thrive.
The one sort of set 'tool' or method we did bring in was Parenting By Connection.  We already were into what might be called attachment parenting or gentle discipline, not that we ever saw ourselves as using a particular style, but with the basic philosophy of the relationships within the family as being paramount to raising children.  We haven't implemented the PbC parenting tools in a set way, but they are very simple, and lay out a way to maintain connection and help children with big feelings in a positive way, and I think would be helpful to parents who are looking for specific ways to help their children who are struggling with behaviour or emotional regulation.
Similarly, we had already come across Ross Greene's book The Explosive Child. His system of Collaborative Problem Solving lays out what is essentially good parenting for any child in a way that is easily accessible to parents who are in the midst of dealing with extremely challenging behaviour. 
This is a pretty short and un-descriptive basic list of how we manage PDA autism and Tourettes Syndrome in our house, but it really is just meant as a quick introduction, and to give you an idea of how we have had good results using a wholistic approach.
PDA (which is a form of autism) and Tourette's Syndrome (which involves a whole lot more than just motor and vocal tics) affect every aspect of life for our family, not just for this one child.  It might seem extreme to explain the adaptations we have made to our whole lifestyle, but the challenges this child deals with are pretty extreme, too.  We couldn't afford to spend months or years trying out different management measures piecemeal.
We needed to work with a management plan that covered everything, because these conditions affect everything. 
And it has been worth every late night researching and organizing, worth every hour of effort, because we have our little girl back.