I'll apologise in advance, this post is likely to be in a similar vein to others I've recently posted. I'm still trying to work through stuff, and writing it down helps.
In all our recent meetings, with CAMHS, with the school SENCO, and with people I talk to who don't really understand autism, I've noticed that when I talk about the things that are worrying me, it makes people uncomfortable. There's a feeling that I shouldn't talk about them, I should only focus on the positives, because we can then build on those.
I agree that it's important that others know PDA boy's talents, and can encourage him through those, but I also think it's very important to know the areas that concern, so that potential spiralling behaviour can be avoided.
PDA boy has many, many strong points:
He is excellent at sports. Loves going to our local Parkrun every Saturday morning with his father and siblings. He is always in the top few for his age group, and improving every week.
He is very musical. If demand avoidance didn't get in the way of practice, I'm sure (in the way all mothers are) that he would be a child prodigy.
He is funny, and makes very clever jokes around words, and uses sarcasm regularly (although he doesn't understand if someone else uses sarcasm).
He is a bushcraft genius, building dens, making fires and cooking on them, using his imagination to problem solve, seeing potential in every stick and chicken-feed bag he can lay his hands on.
He has an amazing vocabulary. It may be largely made up of swear words, and if we introduced a swear jar we could go to Center Parcs every weekend on the proceeds, but nevertheless, it is wide and varied.
He is kind and thoughtful.
He is very knowledgeable about animals, particularly birds of prey and reptiles.
He is the only person in the family that can successfully grow plants - the rest of us don't have the dedication and tend to forget about them!
I highly doubt that many of these talents will be on show in school though, because they come hand in hand with his more volatile side, which in school is kept well under wraps.
But it's not just the talents that are important, the difficulties are just as important, and in a school environment it's these that will hold him back, so in my opinion they are more important to share as they have the potential to see him viewed as naughty, arrogant, rude and manipulative. They have the potential to prevent him from being able to fully access education.
What I would like is the chance to sit down and really tell his future teachers exactly what may be his downfall, but every time I try, I am stopped for two reasons:
1. We must focus on the positives.
2. We know children mask, don't worry, we'll spot it and help him.
This is highly frustrating.
Being autistic myself, when I am at these meetings, I am likely to have rehearsed over and over again what I want to say. If I'm interupted and not allowed to say what I need to, I am more likely to irritate the pants off the people I'm with, as I will start repeating myself and get very flustered and upset, and am less likely to take in what they're saying.
I also find the assumption that these professionals have, that they know the boy better than I do, very cross-making.
For now, I'm going to write a list of the things I'd like them to take note of and share with any teacher likely to have contact with PDA boy.
1. Giddiness/silliness - this means anxiety and/or sensory overload. He needs to have the option to go somewhere quieter. Please don't tell him off for this, as he's not being naughty, and it will only serve to increase the anxiety.
2. Rudeness - sure sign of anxiety. Again, he needs options to leave the room.
3. Refusal to work - yep, anxiety again. If he's refusing, he probably thinks he's going to fail. He either needs some help to make sense of what he's doing, or options so he feels more in control of the situation.
4. The school's consequence system may be his downfall. I'll go into a bit more detail for this one.
The secondary school PDA Boy is going to has a very effective discipline system. Basically, if a child is messing around, they get a C1 (consequence 1). Their name is written on a board. Next comes C2 and 3, giving the child ample warning to sort themselves out before the Big Guns come out.
If the behaviour continues, a C4 means detention. After that a C5 is immediate isolation, followed by a C6, exclusion.
Behaviour in the school is far better than it ever has been, but for some children with special needs, this has meant swift escalation to exclusion. This is my biggest fear at the moment for my son.
If he's feeling anxious, which, let's face it, is likely, he may not respond well to strict zero tolerance discipline. If a teacher can understand this, it will be possible for them to help the boy to stay in control of the situation. If, as we have experienced with most teachers so far (but in a situation of less formal and strict discipline), they decide he is fine, they will see an insolent boy daring to argue with them, for which he must be punished. This is the scenario that must be avoided, but unless someone is prepared to listen, this is something that we will have to be ready for.
Of course the positives are a massive part of my son, and are ones that we focus on a great deal. But in a school setting, by only looking at the positives, my son is far less likely to succeed.
There needs to be a balanced picture in order for him to be understood, and with the need for positivity at all times, this isn't happening.
Tuesday, 31 May 2016
Saturday, 28 May 2016
Reality of PDA parenting.
We all need to have a moan and let off steam sometimes, but very often, if we say how stressed we are, or how difficult life can be, we have an answer that makes you realise that others do not understand what life is like with PDA.
On a regular basis, I will have people saying things like:
"Well, we're all anxious sometimes"
"All children fight"
"It's stressful for all parents"
The underlying message received from these comments is a dismissive "stop complaining, we all have the same problems, deal with it better".
So I thought I'd write about a day in our life. As well as my autistic children, I also have neurotypical children, and yes, things can be stressful, but the level of management has nothing on the level that PDA boy needs. My NT children don't have regular violent meltdowns either, which does make things a little easier.
You cannot drop your guard. Ever. If you do, they can sense it and will pounce.
Therefore all times with children present will be spent alert, watching, listening, waiting for the little signs that mean attack is imminent and inserting yourself between siblings in an attempt at damage limitation.
We try to entertain them, play games, go for walks, but again, we must be constantly alert to the little changes that signal one child has had enough, and take action before it is too late.
We need to be aware of how we are talking at all times. Actually, that's exaggerating, we are lucky that PDA boy's demand avoidance does fluctuate with the stress he is experiencing, so at some points he can cope with a certain level of demands, but at other times No Demand shall Pass.
Generally, from the moment PDA boy wakes up, our language must be in tune with his needs. We have several things in place which make this easier, for example, he has two toothbrushes, so instead of "Time to brush your teeth", we have options; "which toothbrush this morning?" "Are you brushing or shall I?"
Options are our friends. Options mean we get things done. Options mean he is in charge.
We have also found our way to get him out of pyjamas and into school clothes. "Do you want me to help, or can you manage?" is enough for him to be indignant and cross that an eleven year old might need help to get dressed, of course he can do it, or grateful that I will help him on a morning when it's all too much. Again, the choice of actions means he has some control over the situation.
The aim of school mornings is to get the bare minimum done with the least amount of stress and noise possible.
If we are on time to school, we have done well.
If we are late, we have done amazingly. Chances are a tricky morning will be a late morning. The fact that I have got him into school at all deserves a medal (or toast and jam when I get home).
A day at school tests our mettle. In the car on the way home, he must be given a chance to tell me all the bad things that have happened, and I must not try to put a positive light on any of those things, as this his his opportunity to get the day out of his system.
If he's had a really bad day, the journey home may be very difficult, and may take a lot longer than it should, as it is not safe to drive whilst being punched, slapped and spat at. On these days we must find a safe place to stop and let the meltdown pass.
Back at home, we try to make sure he has time to do whatever he needs to do, usually lie on the settee watching Daggerwin's latest episode of Farming Simulator. He must not be disturbed.
Disturbance means screaming, lashing out, throwing things.
I will need to sit close by, carefully aware of PDA boy, looking at his eyes, but without making eye contact, to check his anger levels.
Tea will often be served in front of the TV, as stress levels after school are usually too high to cope with the expectation of the family sitting together around the table. Whilst eating supervision is necessary to evade food fights.
Watching TV itself is a battleground as both PDA boy and his two brothers have very rigid expectations of what they will watch, so in order to be fair, we will often timetable a TV watching schedule. This also means that close supervision is needed to ensure each boy receives his fair allotted TV time without another boy switching off the TV, or doing a moony in front of the screen.
We must also be very careful with transitions from one activity to another, as these are times which can trigger an angry outburst.
All this must be done whilst also trying to keep to a routine, but that routine must also be kept fresh. If our routine becomes too predictable PDA boy's anxiety levels rise.
We must also be very aware of leaving things lying around. Shoes not put away become missiles. A water bottle left on a table in the lounge will be sprayed around the room, for no other reason than it is there and impulse takes over.
We use the incredible 5 point scale to help PDA boy to learn to recognise how he is feeling, this means that slowly, slowly, he is learning that when he is at a three (feeling stressed), this is the time to take action. We know from experience that if he reaches four (pre-meltdown) we have to take action, either by taking him upstairs to his room and waiting out the inevitable meltdown, or, if behaviour is too explosive, by sending his siblings upstairs to safety whilst he gets his rage out of his system. I am proud that I can keep my other children safe from his violence, but often that means that my husband and I are caught out by punches.
Bedtime is a case of distracting him into bed. He doesn't like bedtime, as this means school time is close. Melatonin helps, but is still subject to refusal. He is angry that he can't sleep easily, and resents the tablets that help him to settle.
Bedtime is the time when he may easily start screaming for no apparent reason, banging his head against the metal bed frame, punching the walls with fists that do not feel the pain until he has calmed down.
On these nights, suggesting a YouTube video or a game may jolt him out of this, or it might not, we may have to wait out the anger, wait out the heartbreaking sobbing as he begs us to kill him as life is so, so shit.
And then, eventually, he sleeps. Another day is over. We prepare ourselves for the next day, work out what we could have done better, what we did that worked.
We have bad days with our NT child, of course we do, we are all human. But a bad day doesn't even compare with a good day of parenting PDA boy, when measuring stress levels. A bad day with our NT child does not need anything like the same level of management, supervision and strategies we need to successfully juggle PDA boy's complex needs.
Why our children must be listened to.
My son is diagnosed with autism, with a profile of Pathological Demand Avoidance.
To the untrained eye (actually, to the majority of trained eyes too) he appears neurotypical. His level of control over himself, with people he knows and people he can sense are observing him in a professional role, is outstanding, but it does him a real disservice, as I may have mentioned before.
Once out of the spotlight though, he is a different boy. Whilst he can be very eloquent, he has great difficulty expressing himself. Facial expressions which look so natural in school will disappear. He looks flat, or as someone so kindly pointed out "he's got the eyes of a serial killer". (Erm, ok, thanks for that!) Any expressions are very exaggerated, and not natural at all. When angry, he looks like an angry bull, steam emerging from flared nostrils. So extreme are his features, we often assumed he was joking (big mistake).
A run of bad days will leave him feeling exhausted and very low, seeing no way out of feeling like this. During these times he will express a desire to kill himself, and will demonstrate how. He will also draw pictures depicting him dead and, finally, happy.
This is something that concerns us. And to be honest, if it didn't, I don't think we would be fit parents.
CAMHS have interpreted this as normal behaviour. On PDA boy's discharge letter, it states that these episodes happen during meltdowns, which isn't true, but I'm willing to accept that my own communication problems have meant misinterpretation. These episodes happen, chillingly, when he is low, but calm and rational.
We have learnt to recognise when PDA boy's mood is spiralling downwards, and we will now take actions such as taking him out of school for a day or two (with approval and understanding from our GP). We will have time where he is in complete control of what he does, which sometimes means walking barefoot through puddles (him, not me!), lying fully clothed in a shallow river (I swear this boy is like a dog - cold muddy water is something to be enjoyed, warm clean water may as well be molten lava for the extremes he will go to avoid it), doing handstands for hours on end, sensory activities that serve to bring him back to a mood level that he can cope with.
To school though, taking him out is unnecessary, they believe that sticking with it should be the way we tackle things. This is not something we are willing to do though.
By allowing the boy some space, time when he can be himself, not the boy he is in school, we are recognising that school is a difficult place, we are respecting his need for a break.
By recognising when our son has had enough, we can, to some extent, prevent these low moods from taking over, and in absence of professional support, we must continue to do so.
But we don't make the decision to take him out lightly. If we didn't allow our son time out under these circumstances, would he be pushed into more and more alarming behaviour?
Whilst from school's point of view, this could be seen as a good thing, they may finally see some behaviour, after years of sighing that they just can't see it. He may then be offered some support.
From our point of view though, knowing our son well enough to be able to track his moods with increasing accuracy, our fears are that by not listening to him, his behaviour may escalate. His demonstrations of suicide may become more elaborate, may end up in an actual suicide attempt, may end up being successful. Ok, maybe this won't happen, but as the parent of a volatile child, I'm not willing to take that risk.
Should his needs in school be met more effectively (even though they can't be easily seen), he may not need these recovery days. This is what we are working towards. Communicating his needs so that those around him may start to understand.
Until such time when his diagnosis and difficulties are understood, we, the people who do understand him, will carry on advocating for him and make decisions to protect him and try to keep him mentally healthy.
To the untrained eye (actually, to the majority of trained eyes too) he appears neurotypical. His level of control over himself, with people he knows and people he can sense are observing him in a professional role, is outstanding, but it does him a real disservice, as I may have mentioned before.
Once out of the spotlight though, he is a different boy. Whilst he can be very eloquent, he has great difficulty expressing himself. Facial expressions which look so natural in school will disappear. He looks flat, or as someone so kindly pointed out "he's got the eyes of a serial killer". (Erm, ok, thanks for that!) Any expressions are very exaggerated, and not natural at all. When angry, he looks like an angry bull, steam emerging from flared nostrils. So extreme are his features, we often assumed he was joking (big mistake).
A run of bad days will leave him feeling exhausted and very low, seeing no way out of feeling like this. During these times he will express a desire to kill himself, and will demonstrate how. He will also draw pictures depicting him dead and, finally, happy.
This is something that concerns us. And to be honest, if it didn't, I don't think we would be fit parents.
CAMHS have interpreted this as normal behaviour. On PDA boy's discharge letter, it states that these episodes happen during meltdowns, which isn't true, but I'm willing to accept that my own communication problems have meant misinterpretation. These episodes happen, chillingly, when he is low, but calm and rational.
We have learnt to recognise when PDA boy's mood is spiralling downwards, and we will now take actions such as taking him out of school for a day or two (with approval and understanding from our GP). We will have time where he is in complete control of what he does, which sometimes means walking barefoot through puddles (him, not me!), lying fully clothed in a shallow river (I swear this boy is like a dog - cold muddy water is something to be enjoyed, warm clean water may as well be molten lava for the extremes he will go to avoid it), doing handstands for hours on end, sensory activities that serve to bring him back to a mood level that he can cope with.
To school though, taking him out is unnecessary, they believe that sticking with it should be the way we tackle things. This is not something we are willing to do though.
By allowing the boy some space, time when he can be himself, not the boy he is in school, we are recognising that school is a difficult place, we are respecting his need for a break.
By recognising when our son has had enough, we can, to some extent, prevent these low moods from taking over, and in absence of professional support, we must continue to do so.
But we don't make the decision to take him out lightly. If we didn't allow our son time out under these circumstances, would he be pushed into more and more alarming behaviour?
Whilst from school's point of view, this could be seen as a good thing, they may finally see some behaviour, after years of sighing that they just can't see it. He may then be offered some support.
From our point of view though, knowing our son well enough to be able to track his moods with increasing accuracy, our fears are that by not listening to him, his behaviour may escalate. His demonstrations of suicide may become more elaborate, may end up in an actual suicide attempt, may end up being successful. Ok, maybe this won't happen, but as the parent of a volatile child, I'm not willing to take that risk.
Should his needs in school be met more effectively (even though they can't be easily seen), he may not need these recovery days. This is what we are working towards. Communicating his needs so that those around him may start to understand.
Until such time when his diagnosis and difficulties are understood, we, the people who do understand him, will carry on advocating for him and make decisions to protect him and try to keep him mentally healthy.
Thursday, 26 May 2016
Golden time and school rewards.
Every class my son has been in, from reception to year six, has had a reward system.
In reception to year two, there was a whiteboard with happy and sad faces. A good deed or some excellent work meant a happy face, two happy faces in one day earned the child a small toy from the happy faces box.
Unkind behaviour or poor effort in work was rewarded with a sad face. Two sad faces in one day meant the child had to sit outside the headteacher's office. Good behaviour cancelled out one or both sad faces.
For some children, this was excellent, at least twice a week the same children would have the opportunity to rummage through the happy faces box.
On the other hand, every week the same few children would spend time sitting outside the headteacher's office. Feeling crap about themselves.
After the happy/sad faces system, in year three Golden Time was introduced. Golden Time was an opportunity for each child to choose how to spend their time on a Friday afternoon, reading books, playing games, the choice was theirs.
To start off with, each child had an allotted amount of time, half an hour. Any bad behaviour or times when the teacher felt a child wasn't working their hardest, they would lose minutes off their Golden Time. Outstanding behaviour could earn back those lost minutes.
After some complaints from several parents, this was changed from losing time, to earning time, so each child accrued minutes over the course of the week.
The result was the same whether time was knocked off from the start of the week, or added over the course of the week. The same children enjoyed a full half hour of Golden Time. The same children ended up sitting with their work, the teacher standing over them giving them disapproving glances every so often.
Now, in year six, my son's class has an online reward system. Points are given for good work and thoughtful behaviour, points are removed for careless work and bad behaviour. Prizes and treats are handed out when a child has reached 25, 50, 100 points and so on.
And once again, the same children reap their rewards, the same children struggle to gain points.
In my opinion, the children who flourish with rewards will flourish without them. School is generally a positive experience for these children.
For some children though, this system is downright damaging. For these children, school is a difficult place to be, particularly if they also have autism and/or sensory difficulties to contend with. Many children with ASD do not respond to reward charts at all, so the whole process, instead of encouraging good behaviour is simply punishing children over and over again for behaviour they often aren't in control of, but not only that, there is a visible way to track their failures, making sure it is as humiliating as possible.
I've often thought that it's very short sighted of teachers to continue rewards, when it is patently clear that, for the children whose behaviour they wish to modify, it's simply not working. The same children who struggled in reception are often as not the same children struggling in year six, despite seven years of rewards and discipline.
There is always an argument from the parents of those who find school easy that their children respond well to the rewards, that we can't pander to the children who find it difficult, that they need to up their game and learn not to behave badly. It's nice for their children to be rewarded for their work and behaviour. If only it were this simple.
Not all children are the same. I know some people find this difficult to believe. But not all children have the same academic capabilities, not all children will have the same reactions, not all children can regulate themselves.
One child's sitting quietly is another child's pacing around the room.
One child's celebratory jumping around after a football tournament is another child's excitedly running out of the school gate.
One child's being a bit annoyed about something is another child's meltdown.
For my son, impulsive and giddy behaviour is a sure sign that something is going on, sensory overload or anxiety. He controls this in school as much as possible, but every week he has points removed for such behaviour.
I'm certain that if his way of showing anxiety was to cry, he wouldn't be punished for this.
All children will do well if they can (reference to Dr Ross Greene's The Explosive Child - an excellent book!). By using these reward systems, huge numbers of children are being set up to fail, because developmentally they cannot reach the expectations set out for them. But because they are in the minority and are so often not considered valuable members of a class, their needs are so often ignored and overlooked.
It would be good if our childrens' years in education could be geared up to suit everyone in the classroom, as much as possible, instead of using neurotypical methods that suit neurotypical people.
In reception to year two, there was a whiteboard with happy and sad faces. A good deed or some excellent work meant a happy face, two happy faces in one day earned the child a small toy from the happy faces box.
Unkind behaviour or poor effort in work was rewarded with a sad face. Two sad faces in one day meant the child had to sit outside the headteacher's office. Good behaviour cancelled out one or both sad faces.
For some children, this was excellent, at least twice a week the same children would have the opportunity to rummage through the happy faces box.
On the other hand, every week the same few children would spend time sitting outside the headteacher's office. Feeling crap about themselves.
After the happy/sad faces system, in year three Golden Time was introduced. Golden Time was an opportunity for each child to choose how to spend their time on a Friday afternoon, reading books, playing games, the choice was theirs.
To start off with, each child had an allotted amount of time, half an hour. Any bad behaviour or times when the teacher felt a child wasn't working their hardest, they would lose minutes off their Golden Time. Outstanding behaviour could earn back those lost minutes.
After some complaints from several parents, this was changed from losing time, to earning time, so each child accrued minutes over the course of the week.
The result was the same whether time was knocked off from the start of the week, or added over the course of the week. The same children enjoyed a full half hour of Golden Time. The same children ended up sitting with their work, the teacher standing over them giving them disapproving glances every so often.
Now, in year six, my son's class has an online reward system. Points are given for good work and thoughtful behaviour, points are removed for careless work and bad behaviour. Prizes and treats are handed out when a child has reached 25, 50, 100 points and so on.
And once again, the same children reap their rewards, the same children struggle to gain points.
In my opinion, the children who flourish with rewards will flourish without them. School is generally a positive experience for these children.
For some children though, this system is downright damaging. For these children, school is a difficult place to be, particularly if they also have autism and/or sensory difficulties to contend with. Many children with ASD do not respond to reward charts at all, so the whole process, instead of encouraging good behaviour is simply punishing children over and over again for behaviour they often aren't in control of, but not only that, there is a visible way to track their failures, making sure it is as humiliating as possible.
I've often thought that it's very short sighted of teachers to continue rewards, when it is patently clear that, for the children whose behaviour they wish to modify, it's simply not working. The same children who struggled in reception are often as not the same children struggling in year six, despite seven years of rewards and discipline.
There is always an argument from the parents of those who find school easy that their children respond well to the rewards, that we can't pander to the children who find it difficult, that they need to up their game and learn not to behave badly. It's nice for their children to be rewarded for their work and behaviour. If only it were this simple.
Not all children are the same. I know some people find this difficult to believe. But not all children have the same academic capabilities, not all children will have the same reactions, not all children can regulate themselves.
One child's sitting quietly is another child's pacing around the room.
One child's celebratory jumping around after a football tournament is another child's excitedly running out of the school gate.
One child's being a bit annoyed about something is another child's meltdown.
For my son, impulsive and giddy behaviour is a sure sign that something is going on, sensory overload or anxiety. He controls this in school as much as possible, but every week he has points removed for such behaviour.
I'm certain that if his way of showing anxiety was to cry, he wouldn't be punished for this.
All children will do well if they can (reference to Dr Ross Greene's The Explosive Child - an excellent book!). By using these reward systems, huge numbers of children are being set up to fail, because developmentally they cannot reach the expectations set out for them. But because they are in the minority and are so often not considered valuable members of a class, their needs are so often ignored and overlooked.
It would be good if our childrens' years in education could be geared up to suit everyone in the classroom, as much as possible, instead of using neurotypical methods that suit neurotypical people.
Where is the support for the masking child?
Life as we know it is a roller coaster.
Yesterday's soaring high quickly turns into today's crashing low.
Yesterday I was celebrating when it was clear that our fantastic GP really does understand my family, trusts me and my judgement, makes suggestions that stand a chance of being helpful, and doesn't judge me when they don't work.
Today it is clear, yet again, that the people who work closely with my son do not understand him, and it doesn't matter what I say, they're not listening.
I feel that my son, who is due to transition in September, is being set up to fail.
Certain support networks are to be set up, which on paper is brilliant, but in reality, when my son is so desperate to fit in, he will not use these things as they will mark him out as different. This is likely to mean that, even if he doesn't have meltdowns, he will act up in a way that makes him look cocky, arrogant and deliberately naughty, which could spiral into detentions, isolations and exclusions.
I'm not expecting my son to have more support than any other child because he is my son, and therefore special and deserving more than anyone else.
What I do expect though is some understanding for his diagnosis and the way he presents, and some understanding that there are things that can be done in school, which will not mark him out as different, and will not cost anything to implement, and that could make a huge difference for my son, and mean that our family are not constantly living in what feels like a war zone.
The trouble is, when he masks as well as he does, no-one believes he needs support. We have a catch 22 situation.
Unless PDA boy starts to show his needs, there will be no support. By the time he does show these needs (and to avoid being accused of being negative again, yes, there is a chance that he may sail through secondary school without any issues at all) it's likely that he will then find it nigh on impossible to go into school each day, as has happened to so many children who present like my son.
As I've said in a previous post, support in school is reactive. When a child shows, beyond shadow of a doubt, that they cannot cope, parents can then fight for support. If the child shows nothing, there's an unwillingness to even acknowledge the autism in the first place, let alone offer any support.
I do understand that being a teacher today is difficult. So many government boxes to tick, so many children with complex needs to educate effectively.
But I am his mother, and it is unbelievably frustrating that it is so difficult to be taken seriously, and this is before we even get to the question of support. I am the one who sees how distressed my son can be after a day at school, I am the one who has to support him, and I am the one who has to communicate his worries and troubles to school, as he cannot tell them himself. Sadly I am also the one who is ignored and relegated to the position of being insignificant in proceedings.
I'm not alone in having a child who holds things in like this. Whilst this extreme masking may be unusual, I don't think it's rare, I think that these children are just not recognised as being on the autistic spectrum, to their parents' continuing despair.
The only thing we can do now is wait. Carry on encouraging our son to advocate for himself, instead of telling his teachers what he thinks they want to hear.
We now wait and watch with baited breath, hoping with every fibre that secondary will be a positive experience for him.
Yesterday's soaring high quickly turns into today's crashing low.
Yesterday I was celebrating when it was clear that our fantastic GP really does understand my family, trusts me and my judgement, makes suggestions that stand a chance of being helpful, and doesn't judge me when they don't work.
Today it is clear, yet again, that the people who work closely with my son do not understand him, and it doesn't matter what I say, they're not listening.
I feel that my son, who is due to transition in September, is being set up to fail.
Certain support networks are to be set up, which on paper is brilliant, but in reality, when my son is so desperate to fit in, he will not use these things as they will mark him out as different. This is likely to mean that, even if he doesn't have meltdowns, he will act up in a way that makes him look cocky, arrogant and deliberately naughty, which could spiral into detentions, isolations and exclusions.
I'm not expecting my son to have more support than any other child because he is my son, and therefore special and deserving more than anyone else.
What I do expect though is some understanding for his diagnosis and the way he presents, and some understanding that there are things that can be done in school, which will not mark him out as different, and will not cost anything to implement, and that could make a huge difference for my son, and mean that our family are not constantly living in what feels like a war zone.
The trouble is, when he masks as well as he does, no-one believes he needs support. We have a catch 22 situation.
Unless PDA boy starts to show his needs, there will be no support. By the time he does show these needs (and to avoid being accused of being negative again, yes, there is a chance that he may sail through secondary school without any issues at all) it's likely that he will then find it nigh on impossible to go into school each day, as has happened to so many children who present like my son.
As I've said in a previous post, support in school is reactive. When a child shows, beyond shadow of a doubt, that they cannot cope, parents can then fight for support. If the child shows nothing, there's an unwillingness to even acknowledge the autism in the first place, let alone offer any support.
I do understand that being a teacher today is difficult. So many government boxes to tick, so many children with complex needs to educate effectively.
But I am his mother, and it is unbelievably frustrating that it is so difficult to be taken seriously, and this is before we even get to the question of support. I am the one who sees how distressed my son can be after a day at school, I am the one who has to support him, and I am the one who has to communicate his worries and troubles to school, as he cannot tell them himself. Sadly I am also the one who is ignored and relegated to the position of being insignificant in proceedings.
I'm not alone in having a child who holds things in like this. Whilst this extreme masking may be unusual, I don't think it's rare, I think that these children are just not recognised as being on the autistic spectrum, to their parents' continuing despair.
The only thing we can do now is wait. Carry on encouraging our son to advocate for himself, instead of telling his teachers what he thinks they want to hear.
We now wait and watch with baited breath, hoping with every fibre that secondary will be a positive experience for him.
Wednesday, 25 May 2016
Ticking boxes and jumping through hoops.,
This is a follow on of sorts from my previous rant. I need to get straight in my head, and here, how I feel about how some families are treated by the services that should be providing support.
I expect many doctors, therapists and support workers would love all their patients, or clients, or whatever they are to them, to be ignorant sponges, with ignorant sponge children. Ignorant so we don't have the nous to question. Sponges so we soak up everything they say.
We are expected to trust in their expertise, safe in the knowledge that they know better than we do and we are safe in their hands.
In an ideal world, we are all a blank canvas, with the same potentials and the same ability to learn.
We do not live in an ideal world though. We are all different, some of us are more complex than others, some are more questioning. Some of us, for whatever reason, are not round pegs that fit neatly into the round holes provided by society. We are the awkward square pegs, trying desperately to round off our corners so we fit in, or trying to carve our own square holes.
We started our autism journey (sorry, that sounds so clichèd, but like so many clichès, it is a good description of what it is!) as ignorant sponges, not knowing what was happening, not questioning anything we were told. We thought we were good parents, but clearly we weren't good enough, or we wouldn't be experiencing the issues that were making life so very difficult, so we took advice on board and followed it for a long, long time, believing that things would get better if we followed the tried and tested strategies that were suggested to us. We made a valiant effort to make it work, but ultimately, the strategies we used would never have worked.
Over the course of the next couple of years, we started to question the things we were told. We quickly came to the realisation that the experts didn't always have the answers, which is fine, nobody has all the answers. But not just that. When we, the people who live with our children and are in a position where we have to learn quickly what works and what doesn't, come up with possible answers, it is very, very difficult to be taken seriously.
In my experience, there are two types of expert (when using expert, I mean anyone in a position that means they are working with the child or their family, so it may be a teacher, a support worker or paediatrician).
The first is the kind who welcomes parental input, someone who believes what we are saying and tries their hardest to understand. They are open to our suggestions and input. They are happy to work with us.
We are lucky enough to have a GP that falls into this category. Without her support and understanding over the last few years, we would not be in the position we are in now, confident of how we handle things.
The second kind tend to be a little more rigid with their approach. There is often an assumption that parents are causing their child's difficulties, which no doubt some do, but when faced with a more complex child, who does not respond to a one-size-fits-all approach, or who presents in a way that is unusual or unexpected, rather than thinking outside the box, or involving parents who all too often have found the answers, there is a tendency to obfuscate the issue and twist facts to fit within the narrow criteria of the manuals that they work by.
This is damaging, as many of us have learnt, not many children or adults, even those apparently with no issues, fit the instruction book. There are more usual behaviours which are easy to identify. But there are the unusual as well.
There's a saying in the medical world: When you hear hoofbeats, think horses, not zebras.
Basically, look for the simplest explanation. If it looks like a cold, chances are it's a cold.
When it comes to PDA and autism, when it doesn't present typically, this is currently a problem.
In many cases, PDA is the obvious answer. PDA is the horse, not the zebra.
But because the manuals don't currently include PDA as a valid diagnosis, many experts will ignore it as a possible explanation and go around many convoluted avenues to prove that the behaviours are caused by attachment problems, or poor parenting.
As part of the investigations, parents are expected to complete parenting courses, allow strangers into their houses to observe the child and how they interact within the family.
As I explained previously, our experiences of both of these did not go well.
Whilst the Webster-Stratton does focus on communication problems, the videos that featured heavily during the course showed, on the whole, parents disinterested in their children, parents having to be taught to let their child lead, to spend time with their child rather than disengage. Parents who have to be shown how to have a relationship with their child.
Whilst our son can be very difficult to be with, we have a very good relationship with him, we enjoy his company, we encourage his many talents, we interact with him in a way that suits him, we respect him. To use another clichè, we know what makes him tick. We know his strengths, we also know his weaknesses and triggers and work hard with him to overcome these.
During his assessment period though, all this was overlooked. The assumption that we were just another dysfunctional family made the whole process very traumatic, and has left us with a distrust and unease around the very people who I believe we should have a good working relationship with. Unfortunately, we are not alone in this approach. I know many families who were treated in this way until the point where the child was diagnosed, and beyond.
The parenting course was another example of our knowledge being completely disregarded. We were clear that it was making things worse, but we were not allowed autonomy over our own family circumstances without being seen as obstructive to our son's care, even though following through with the course was clearly not the right thing for our son. We quietly backed out, naïvely hoping for no ramifications. We backed out to use the strategies that work well with our son, as we had explained to anyone who sat still long enough to listen to us.
Using our autonomy and refusing prevention support (for reasons I spoke about in the last blog post) was also seen as obstructive, even though we know beyond shadow of a doubt that this particular intervention will have no positive consequences for our family. We know that because throughout the assessment process, we had people visiting us at home, with the sole intention of building up a relationship with PDA boy so they could see what we see, but they couldn't see him, no-one sees the real boy as he is so very aware of having to fit in. Even his grandparents can't see the full extent of his behaviour, although they are learning to recognise some of his subtle tells.
As I spoke about in my first post, some children mask extremely well, something which most experts cannot (or will not) recognise. This is massively to the detriment of the child and his or her family, and it is these families that are often assumed to be fabricating their child's difficulties, or exaggerating the violence and stress we live with, because the child does not fit the expectations of the experts.
There are some experts who recognise this. Notably for me is Dr Luke Beardon, whose blog posts have been printed and shared by many parents (myself included) trying desperately to be listened to and taken seriously.
I am hoping for a shift towards more experts like this, within the NHS so they are accessible to all who need them. The number of experts are there, so this shouldn't be a funding issue, what is needed is a change of attitude amongst those working with families like ours.
In this resource limited time we live in, lack of funds is the most used reason I've heard for the way families like mine are treated. But I have a sneaky feeling that the cost to society is far, far greater by forcing families to jump through unnatural, manufactured hoops in order to qualify for support. The cost of putting countless families through parenting courses that many parents know full well won't help must limit the real help that can be given.
I was often asked what we wanted from CAMHS. Put on the spot like that, I found it incredibly difficult to come up with an answer.
I have one now though.
I wanted them to acknowledge that we know how to handle our son.
I wanted them to acknowledge PDA in a more helpful way than "Well, it's not in the books".
I wanted them to believe us.
I wanted clear cut advice as to what to do when my son threatens to kill himself, and demonstrates how.
I wanted to know they were there, standing shoulder to shoulder with us at a time when we needed it, in a way that I know they can with clearer cases.
From an organisation whose sole purpose is to lend expertise to our troubled children, I don't think this is too much to ask.
I expect many doctors, therapists and support workers would love all their patients, or clients, or whatever they are to them, to be ignorant sponges, with ignorant sponge children. Ignorant so we don't have the nous to question. Sponges so we soak up everything they say.
We are expected to trust in their expertise, safe in the knowledge that they know better than we do and we are safe in their hands.
In an ideal world, we are all a blank canvas, with the same potentials and the same ability to learn.
We do not live in an ideal world though. We are all different, some of us are more complex than others, some are more questioning. Some of us, for whatever reason, are not round pegs that fit neatly into the round holes provided by society. We are the awkward square pegs, trying desperately to round off our corners so we fit in, or trying to carve our own square holes.
We started our autism journey (sorry, that sounds so clichèd, but like so many clichès, it is a good description of what it is!) as ignorant sponges, not knowing what was happening, not questioning anything we were told. We thought we were good parents, but clearly we weren't good enough, or we wouldn't be experiencing the issues that were making life so very difficult, so we took advice on board and followed it for a long, long time, believing that things would get better if we followed the tried and tested strategies that were suggested to us. We made a valiant effort to make it work, but ultimately, the strategies we used would never have worked.
Over the course of the next couple of years, we started to question the things we were told. We quickly came to the realisation that the experts didn't always have the answers, which is fine, nobody has all the answers. But not just that. When we, the people who live with our children and are in a position where we have to learn quickly what works and what doesn't, come up with possible answers, it is very, very difficult to be taken seriously.
In my experience, there are two types of expert (when using expert, I mean anyone in a position that means they are working with the child or their family, so it may be a teacher, a support worker or paediatrician).
The first is the kind who welcomes parental input, someone who believes what we are saying and tries their hardest to understand. They are open to our suggestions and input. They are happy to work with us.
We are lucky enough to have a GP that falls into this category. Without her support and understanding over the last few years, we would not be in the position we are in now, confident of how we handle things.
The second kind tend to be a little more rigid with their approach. There is often an assumption that parents are causing their child's difficulties, which no doubt some do, but when faced with a more complex child, who does not respond to a one-size-fits-all approach, or who presents in a way that is unusual or unexpected, rather than thinking outside the box, or involving parents who all too often have found the answers, there is a tendency to obfuscate the issue and twist facts to fit within the narrow criteria of the manuals that they work by.
This is damaging, as many of us have learnt, not many children or adults, even those apparently with no issues, fit the instruction book. There are more usual behaviours which are easy to identify. But there are the unusual as well.
There's a saying in the medical world: When you hear hoofbeats, think horses, not zebras.
Basically, look for the simplest explanation. If it looks like a cold, chances are it's a cold.
When it comes to PDA and autism, when it doesn't present typically, this is currently a problem.
In many cases, PDA is the obvious answer. PDA is the horse, not the zebra.
But because the manuals don't currently include PDA as a valid diagnosis, many experts will ignore it as a possible explanation and go around many convoluted avenues to prove that the behaviours are caused by attachment problems, or poor parenting.
As part of the investigations, parents are expected to complete parenting courses, allow strangers into their houses to observe the child and how they interact within the family.
As I explained previously, our experiences of both of these did not go well.
Whilst the Webster-Stratton does focus on communication problems, the videos that featured heavily during the course showed, on the whole, parents disinterested in their children, parents having to be taught to let their child lead, to spend time with their child rather than disengage. Parents who have to be shown how to have a relationship with their child.
Whilst our son can be very difficult to be with, we have a very good relationship with him, we enjoy his company, we encourage his many talents, we interact with him in a way that suits him, we respect him. To use another clichè, we know what makes him tick. We know his strengths, we also know his weaknesses and triggers and work hard with him to overcome these.
During his assessment period though, all this was overlooked. The assumption that we were just another dysfunctional family made the whole process very traumatic, and has left us with a distrust and unease around the very people who I believe we should have a good working relationship with. Unfortunately, we are not alone in this approach. I know many families who were treated in this way until the point where the child was diagnosed, and beyond.
The parenting course was another example of our knowledge being completely disregarded. We were clear that it was making things worse, but we were not allowed autonomy over our own family circumstances without being seen as obstructive to our son's care, even though following through with the course was clearly not the right thing for our son. We quietly backed out, naïvely hoping for no ramifications. We backed out to use the strategies that work well with our son, as we had explained to anyone who sat still long enough to listen to us.
Using our autonomy and refusing prevention support (for reasons I spoke about in the last blog post) was also seen as obstructive, even though we know beyond shadow of a doubt that this particular intervention will have no positive consequences for our family. We know that because throughout the assessment process, we had people visiting us at home, with the sole intention of building up a relationship with PDA boy so they could see what we see, but they couldn't see him, no-one sees the real boy as he is so very aware of having to fit in. Even his grandparents can't see the full extent of his behaviour, although they are learning to recognise some of his subtle tells.
As I spoke about in my first post, some children mask extremely well, something which most experts cannot (or will not) recognise. This is massively to the detriment of the child and his or her family, and it is these families that are often assumed to be fabricating their child's difficulties, or exaggerating the violence and stress we live with, because the child does not fit the expectations of the experts.
There are some experts who recognise this. Notably for me is Dr Luke Beardon, whose blog posts have been printed and shared by many parents (myself included) trying desperately to be listened to and taken seriously.
I am hoping for a shift towards more experts like this, within the NHS so they are accessible to all who need them. The number of experts are there, so this shouldn't be a funding issue, what is needed is a change of attitude amongst those working with families like ours.
In this resource limited time we live in, lack of funds is the most used reason I've heard for the way families like mine are treated. But I have a sneaky feeling that the cost to society is far, far greater by forcing families to jump through unnatural, manufactured hoops in order to qualify for support. The cost of putting countless families through parenting courses that many parents know full well won't help must limit the real help that can be given.
I was often asked what we wanted from CAMHS. Put on the spot like that, I found it incredibly difficult to come up with an answer.
I have one now though.
I wanted them to acknowledge that we know how to handle our son.
I wanted them to acknowledge PDA in a more helpful way than "Well, it's not in the books".
I wanted them to believe us.
I wanted clear cut advice as to what to do when my son threatens to kill himself, and demonstrates how.
I wanted to know they were there, standing shoulder to shoulder with us at a time when we needed it, in a way that I know they can with clearer cases.
From an organisation whose sole purpose is to lend expertise to our troubled children, I don't think this is too much to ask.
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