It is a Friday in July. It has been yet another rough week in an academic year of rough days.
The Boy has commited an act seen as so heinous by the school, his autism provoking him into reacting in a way that a neurotypical child would not, that the result is he has been put under internal exclusion. This means that he is excluded from his class, instead being placed within another at his school. He is to sit at the desk, in silence and on his own, completing the work he has been given. He is not allowed to speak to the other children in this class, nor they to he.
His behaviour at home is collapsing. He is almost consistently violent. He screams and shouts. He does not listen. He reacts violently to the slightest provocation, even when you do not consider your actions to be provoking (an offer of an apple juice has been met that morning with a headbutt so violent my nose is still bleeding).
There are meetings; there are phonecalls. I am at the school daily. I try to talk to the teachers. I try to get my son help.
My son is lost and I do not know how to get him back, but I want him back. I will accept this imposter, I will love him, but I want my boy back.
I am physically exhausted, I am mentally spent. I wonder if it is my parenting that has made this change. In private moments, I admit to myself in hushed tones that I do not like my son right now. I wonder if it would be better for all concerned if I disappeared. I consider whether it would be okay for me to die.
I cannot listen to classical music anymore without being drenched in sorrow and anger; enraged by the futility of life. It hurts to hear it, so I stop.
I am asked how things are and respond, in a montone, that they are "fine." Everything is utterly, utterly "fine." I appear to be in control, but I can't remember the last time I slept for more than an hour in 24. I can't remember the last time I felt comfortable in my own thoughts. I can't recall a time when I did not flinch in horror at the phone ringing, expecting there to be another conversation where I am told that he has been poorly behaved at school, and I am left at home, powerless, deflated, feeling judged and unable to do anything apart from apologise for my son's disability.
I try to make myself go out once a month, but I don't really feel like it. I make myself go. I try to be like everyone else, but I'm not. I'm hoping that someone else will put me out of my misery as I am too frightened; too obliged to continue living; too scared of losing control.
I drink too much at times, but only on these monthly nights out. I act like a bit of an arse, because I don't know how I am supposed to be acting. Is it acceptable to be unhappy? Is it acceptable to just be locked into your own misery? I'm not sure anymore.
I've stopped being me. I've stopped living in my body. I'm floating above it, watching myself go throught the motions. I'm living my life like one of the social stories I draw for The Boy and Lid; get up, wash, smile, get kids up, get them clean and dressed, feed them, laugh, smile, pretend. Repeat to fade.
I ask my GP for help. I ask for a referral for counselling. I know that things are really bad for me, and I know that there's a chance that my pessimistic optimism isn't going to get me out this time. I am planning. I am thinking, thinking far too much about things that I wish I could file away because they hurt too much.
The counsellor does not turn up for our first appointment. She does not call me. I smile and congratulate myself for being so ridculously shit and unloveable that even someone who is paid to care about me doesn't.
Things get worse. There is not enough chocolate to cover them.
Still, I tell everyone that I am fine. "Yeah, great!" I say, when asked how The Boy is, how I am, how Lid is. I cannot say aloud that sometimes I feel crushed, suffocated. That the responsibilty of my situation seems unending. That I am still trying to be responsible for everyone I know, even those that I know by the slightest association. I want to ask someone to look after me. I need to be looked after, and I am ready to admit this, but I fear I will be laughed at. Even if I wasn't laughed at, who would look after me?
This continues. I am frightened. I attempt just dis-connecting myself from my body entirely, ignoring my thoughts in an effort to continue. I fill my days with activity. I work more nights. I stop writing because I just can't anymore.
The Boy's behaviour worsens. Lid becomes more challenging. I paint the house.
In all, it lasted for over a year. June 2009 until August 2010. That entire period constitutes nothing more than a lost weekend to me. I have forgotten more than I remember of it. I am unconvinced that this will not happen again, as it has happened before.
During this period, I have metaphorically lost my Boy, my Lid and myself. I have misplaced our direction. I have lied to people who care for me. I have covered up and pretended.
Slowly things have resolved and become clearer. My head is less fuzzy. I am close to being me again. I can listen to classical music without feeling sad. Life's still hard; nothing is perfect but I like it. I like me. And when I say things are "fine", it feels like they are.
Showing posts with label ASD behaviour. Show all posts
Showing posts with label ASD behaviour. Show all posts
21 September 2010
26 May 2010
Happy
When I was pregnant with The Boy, I was often asked if I knew what I was having. To start with, I replied that I would be happy either way. I would then be told that "it wouldn't matter so long as they had ten fingers and ten toes", to which I always replied that that didn't concern me; so long as they were happy, I would be happy.
The ability to be other people's perception of "normal" was not a wish I had for my baby. I wanted them to be happy; have a happy childhood, enjoy the things around them, feel safe and loved throughout, as these were not things I felt as a child myself. I wanted things to be different for my child. I wanted things to be better. I felt sure that this was something I could attain.
It didn't start off great. I already put him in the same fatherless family as I was born into when he was six months old. Still, it wouldn't be awful. I reasoned that I could rely on my family, who all duly, er, disappeared.
No matter, things would be well. I could work around the troublesome sitiuation we were in, and I would suceed, for the sake both of our happiness.
Life continued, difficulties arose, but always and throughout, The Boy was happy. His smile lit up my heart. In my blackest hours, of which there were many, the mere fact that he existed made me believe that there was good in an otherwise dark and lonely world.
He never gave up on me. He always believed that I could make things better for him, for us. When my faith in us as a team slipped, his didn't. It never has and I doubt that it ever will.
There have been inordinate lows; his hospitalisation at 18 months when the little shit tried to die on me and leave me on my own in this shitty world springs to mind; my being told when he was 2 and a half that he would never speak and that I should "consider my options"; and enormous highs; the day that he spoke again after a year of silence; when he castigates me for trying to quit when, as we all know, Wiltshire's don't quit; when he casually tells me he loves me; his obvious joy when he does something brilliant and he sees the pride on my face.
My belief in My Boy has never been shaken. Sometimes I do not believe that the actions he takes are those of my child, are those of My Boy; yet I know that often the action performed is not his choice - it is autism's choice. It is not his reaction, it is autism's reaction. The pain that it inflicts on him, the awkwardness that he feels when he knows he mustn't hit others when he is angry but must instead talk about it to find a resolution, his inability to do this despite how hard he tries is utterly heartbreaking.
I don't resent that he is autistic. I have said many times and I re-iterate that were it not for him I would have self destructed years ago. I do resent the effect that the autism itself has on him. How, as it has become more "noticeable" and obvious that he is different to some of his peers, parents hold back their children, the invitations to parties do not extend to him, he is glared at for behaviour that he cannot help.
I resent and I despise how it makes My Boy sad, how it robs him of his happiness, and how he isolates himself from others because he is now so used to rejection that he figures he may just as well act upon the impulses autism provides.
I resent that I think that he doesn't deserve it, because you know, he doesn't deserve it.
I resent how his mainstream school have dug their heels in over statementing, and yet threatened me repeatedly that they will exclude him from school, enforcing illegal exclusions on him that I facilitated in his Reception year, how they have refused to get involved to help him, how the "blame" for the actions caused by his autism has been placed upon me, and how, when they purport that changes they have railed against have improved his behaviour by 70% last week have meant that his behaviour is increasingly disintegrating this week.
I resent that I didn't over rule him and insist he went to a school that I thought more trustworthy, had a better OFSTED (although admittedly it is in a "worse" area), and was rumoured to have better experience with SEN children.
I hate myself for thinking that his instant happiness was more important that his ongoing happiness; that I didn't sacrifice the continuity of children who could tolerate him when he was less obviously "weird" and different when he entered Recepton at 4 who now find him unbearable at 6.
I wish that I had thought it through more, and decided against the school next to his old nursery, where he still receives some after school care, to give continuity of grown ups the group that has let him down the most.
I wish for him to be happy. I want for The Boy to be happy. I need for My Boy to happy.
It is finding the way and taking the action that is most appropriate, knowing the damage a wrong decision could inflict today, the sadness it may cause, will provide him with a future that is full of the good stuff. A future where he will attain all that I have ever wanted for him; happiness.
The ability to be other people's perception of "normal" was not a wish I had for my baby. I wanted them to be happy; have a happy childhood, enjoy the things around them, feel safe and loved throughout, as these were not things I felt as a child myself. I wanted things to be different for my child. I wanted things to be better. I felt sure that this was something I could attain.
It didn't start off great. I already put him in the same fatherless family as I was born into when he was six months old. Still, it wouldn't be awful. I reasoned that I could rely on my family, who all duly, er, disappeared.
No matter, things would be well. I could work around the troublesome sitiuation we were in, and I would suceed, for the sake both of our happiness.
Life continued, difficulties arose, but always and throughout, The Boy was happy. His smile lit up my heart. In my blackest hours, of which there were many, the mere fact that he existed made me believe that there was good in an otherwise dark and lonely world.
He never gave up on me. He always believed that I could make things better for him, for us. When my faith in us as a team slipped, his didn't. It never has and I doubt that it ever will.
There have been inordinate lows; his hospitalisation at 18 months when the little shit tried to die on me and leave me on my own in this shitty world springs to mind; my being told when he was 2 and a half that he would never speak and that I should "consider my options"; and enormous highs; the day that he spoke again after a year of silence; when he castigates me for trying to quit when, as we all know, Wiltshire's don't quit; when he casually tells me he loves me; his obvious joy when he does something brilliant and he sees the pride on my face.
My belief in My Boy has never been shaken. Sometimes I do not believe that the actions he takes are those of my child, are those of My Boy; yet I know that often the action performed is not his choice - it is autism's choice. It is not his reaction, it is autism's reaction. The pain that it inflicts on him, the awkwardness that he feels when he knows he mustn't hit others when he is angry but must instead talk about it to find a resolution, his inability to do this despite how hard he tries is utterly heartbreaking.
I don't resent that he is autistic. I have said many times and I re-iterate that were it not for him I would have self destructed years ago. I do resent the effect that the autism itself has on him. How, as it has become more "noticeable" and obvious that he is different to some of his peers, parents hold back their children, the invitations to parties do not extend to him, he is glared at for behaviour that he cannot help.
I resent and I despise how it makes My Boy sad, how it robs him of his happiness, and how he isolates himself from others because he is now so used to rejection that he figures he may just as well act upon the impulses autism provides.
I resent that I think that he doesn't deserve it, because you know, he doesn't deserve it.
I resent how his mainstream school have dug their heels in over statementing, and yet threatened me repeatedly that they will exclude him from school, enforcing illegal exclusions on him that I facilitated in his Reception year, how they have refused to get involved to help him, how the "blame" for the actions caused by his autism has been placed upon me, and how, when they purport that changes they have railed against have improved his behaviour by 70% last week have meant that his behaviour is increasingly disintegrating this week.
I resent that I didn't over rule him and insist he went to a school that I thought more trustworthy, had a better OFSTED (although admittedly it is in a "worse" area), and was rumoured to have better experience with SEN children.
I hate myself for thinking that his instant happiness was more important that his ongoing happiness; that I didn't sacrifice the continuity of children who could tolerate him when he was less obviously "weird" and different when he entered Recepton at 4 who now find him unbearable at 6.
I wish that I had thought it through more, and decided against the school next to his old nursery, where he still receives some after school care, to give continuity of grown ups the group that has let him down the most.
I wish for him to be happy. I want for The Boy to be happy. I need for My Boy to happy.
It is finding the way and taking the action that is most appropriate, knowing the damage a wrong decision could inflict today, the sadness it may cause, will provide him with a future that is full of the good stuff. A future where he will attain all that I have ever wanted for him; happiness.
3 February 2010
Me! Me! Look at Meeeeeeeeeeeeeeee!
Today, we had a meeting at The Boy's school. It was to discuss his worsening physical aggression, his now solemn refusal to do any work whatsoever at school, and was under the heading of a Team Around The Child meeting (which is where all the relevant professionals gather to give input and advocacy for the disabled child).
The violence is a matter that has been brought up several times over the last few months, and has seen us (Himself and I) trailing back and forth, writing letters of complaint, making telephone calls in order to get some resolution for him.
I am going to write about this properly at some point, because I really need to get out of my system the sheer incompetence that we are constantly encountering, the refusal of the school to assist, their ability to pass the buck quite spectacularly, and their inability to just admit that they do not want my son there anymore and assist us in placing him into a more agreeable learning environment for him.
I just need, at this point, to be extremely spiteful about one of the school's representatives, a woman who is employed to be well versed in the educational needs of special children.
As such, one assumes that she would have, at least, a minimal understanding of the conditions of the children she is paid to assist. As those of us with children on the spectrum know, it is one hell of a condition to get diagnosed and get assistance with, due to its tells. It is a varied condition, affecting each child with it in a completely different way, and no two children are the same.
The only people that usually have a good handle on it are the people the autistic person spends the most time with; teachers, parents, siblings. Thus it is always an excellent idea to accept input from parents, as they serve as the best advocates for their child.
Therefore, if a parent suggests a way that they believe will work, a way that they have tested at home, one would assume that said suggestions would be welcomed and taken on board. If that is the assumption, one would be oh so very, very wrong.
Apparently, in the teaching profression just as in real life, there are those who have to be the centre of attention, who everyone has to look at, and who have to claim success and victory in areas where there is none.
For example, try explaining to someone who, as I said above, is the employed to co ordinate the needs of those children with special edcuational needs (let's say they had some sort of job title to that effect), what the theory of mind is in relation to an autistic child.
Let's then say that said person, who is clearly hypothetical and, were they to exist which they clearly don't, wasn't even at the meeting (which possibly didn't even happen), decided that they were the authority on your son, and knew more than you, your son's step dad (who has been brought up by him), a teacher from a specialist autism advisary service and The Boy's teacher.
You explain what your son understands about emotions (from years of you doing work using The Transporters, looking at photos, doing social stories). You try to explain that he has always recognised when he is sad because he has been hit, that he understands that other people can be made sad by someone else hitting them, but that he has no concept of him ever causing another person to be sad by hitting them as he enjoys the action of hitting them and therefore assumes that they must also. You explain this in deviated forms several times. Then the representative from the advisary service that specialises in your son's disability explains the same thing, and your son's teacher has also said the same thing, said special needs co-ordinator states that your child does understand that what they have done is wrong because they dislike having to go to their room as part of their punishment, and declare that emotional literacy classes that they put in place (which were actually suggested and arranged by yourself) have taught him same, you need to make a choice.
Do you explain again that he doesn't understand that his actions affect other people's emotions? Do you explain again that his upset is caused by his perception of punishment (having a sticker taken away from his chart) and not his action?
Or do you, as his teacher did, just tell the SENCo that his upset is because he doesn't like the SENCo?
Would you then, as a parent, having endured a boorish pompous imbecile blustering on incessantly for several hours about how any and all acheivements that your son has made are down to her (disregarding that she has "known" him for three months, and has committed a cacophony of incompetencies that should have seen her dismissed from her post for same), and that all failures are down to your inability to parent and youre son's teacher's inability to teach, would you or rather could you, let that be?
Or would you embark upon a monologue of five minutes whereby you made it extremely clear to everyone gathered at the meeting that your child despises said SENCo? Would you embellish it to such a degree that everyone else present at the meeting sniggered childishly behind their hands, as the SENCo turned increasingly red and became increasingly frustrated that you refuse to stop?
I would adore to be able to tell you that I resisted the urge, but here is the one place I tell the absolute truth.
I was fairly unstoppable. I called her incompetent several times during the meeting. I pulled her up on her mistakes, and the extremely bad way she has handled my son's case, and her refusal to accept any responsibility, and her inability to accept that it wasn't about her, it was about The Boy.
When I collected The Boy that, I explained to him that, from now on, he should associate bad behaviour with having to go and see the SENCo. If he wanted to not see her (or Mrs Poo as we are currently not correcting him in calling her), he needed to ensure that he gets all of his stamps, and absolutely no lines. Because a line didn't just signify bad behaviour, it meant having to go and see Mrs Poo.
Who wants to place bets as to how much more successful this is going to be?
I'll chuck a £20 on it...
The violence is a matter that has been brought up several times over the last few months, and has seen us (Himself and I) trailing back and forth, writing letters of complaint, making telephone calls in order to get some resolution for him.
I am going to write about this properly at some point, because I really need to get out of my system the sheer incompetence that we are constantly encountering, the refusal of the school to assist, their ability to pass the buck quite spectacularly, and their inability to just admit that they do not want my son there anymore and assist us in placing him into a more agreeable learning environment for him.
I just need, at this point, to be extremely spiteful about one of the school's representatives, a woman who is employed to be well versed in the educational needs of special children.
As such, one assumes that she would have, at least, a minimal understanding of the conditions of the children she is paid to assist. As those of us with children on the spectrum know, it is one hell of a condition to get diagnosed and get assistance with, due to its tells. It is a varied condition, affecting each child with it in a completely different way, and no two children are the same.
The only people that usually have a good handle on it are the people the autistic person spends the most time with; teachers, parents, siblings. Thus it is always an excellent idea to accept input from parents, as they serve as the best advocates for their child.
Therefore, if a parent suggests a way that they believe will work, a way that they have tested at home, one would assume that said suggestions would be welcomed and taken on board. If that is the assumption, one would be oh so very, very wrong.
Apparently, in the teaching profression just as in real life, there are those who have to be the centre of attention, who everyone has to look at, and who have to claim success and victory in areas where there is none.
For example, try explaining to someone who, as I said above, is the employed to co ordinate the needs of those children with special edcuational needs (let's say they had some sort of job title to that effect), what the theory of mind is in relation to an autistic child.
Let's then say that said person, who is clearly hypothetical and, were they to exist which they clearly don't, wasn't even at the meeting (which possibly didn't even happen), decided that they were the authority on your son, and knew more than you, your son's step dad (who has been brought up by him), a teacher from a specialist autism advisary service and The Boy's teacher.
You explain what your son understands about emotions (from years of you doing work using The Transporters, looking at photos, doing social stories). You try to explain that he has always recognised when he is sad because he has been hit, that he understands that other people can be made sad by someone else hitting them, but that he has no concept of him ever causing another person to be sad by hitting them as he enjoys the action of hitting them and therefore assumes that they must also. You explain this in deviated forms several times. Then the representative from the advisary service that specialises in your son's disability explains the same thing, and your son's teacher has also said the same thing, said special needs co-ordinator states that your child does understand that what they have done is wrong because they dislike having to go to their room as part of their punishment, and declare that emotional literacy classes that they put in place (which were actually suggested and arranged by yourself) have taught him same, you need to make a choice.
Do you explain again that he doesn't understand that his actions affect other people's emotions? Do you explain again that his upset is caused by his perception of punishment (having a sticker taken away from his chart) and not his action?
Or do you, as his teacher did, just tell the SENCo that his upset is because he doesn't like the SENCo?
Would you then, as a parent, having endured a boorish pompous imbecile blustering on incessantly for several hours about how any and all acheivements that your son has made are down to her (disregarding that she has "known" him for three months, and has committed a cacophony of incompetencies that should have seen her dismissed from her post for same), and that all failures are down to your inability to parent and youre son's teacher's inability to teach, would you or rather could you, let that be?
Or would you embark upon a monologue of five minutes whereby you made it extremely clear to everyone gathered at the meeting that your child despises said SENCo? Would you embellish it to such a degree that everyone else present at the meeting sniggered childishly behind their hands, as the SENCo turned increasingly red and became increasingly frustrated that you refuse to stop?
I would adore to be able to tell you that I resisted the urge, but here is the one place I tell the absolute truth.
I was fairly unstoppable. I called her incompetent several times during the meeting. I pulled her up on her mistakes, and the extremely bad way she has handled my son's case, and her refusal to accept any responsibility, and her inability to accept that it wasn't about her, it was about The Boy.
When I collected The Boy that, I explained to him that, from now on, he should associate bad behaviour with having to go and see the SENCo. If he wanted to not see her (or Mrs Poo as we are currently not correcting him in calling her), he needed to ensure that he gets all of his stamps, and absolutely no lines. Because a line didn't just signify bad behaviour, it meant having to go and see Mrs Poo.
Who wants to place bets as to how much more successful this is going to be?
I'll chuck a £20 on it...
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