I’m quite certain that every parent has at some point had dealings with a child whose behaviour is utterly out of order. I’m equally certain that every parent has at some time or other felt clobbered by their beloved offspring.
I can’t remember a day since Eldest was 10 months old, that one or other of the three of them hasn’t at some point left me feeling clobbered. I often talk about my patched up heart (this old post sums things up!) but I particularly hate the cuts and bruises that my heart suffers at the hands of my Offspring.
And so, the other day, a Facebook post made me think of a hands on way to try and make a point…
Sweet Girl and I went to the shops this afternoon before Little Man came home from school. We stopped at the charity shop and chose two beautiful china plates – one that Sweet Girl would love, one that Little Man would desire. On the way home we popped into another shop to purchase some glue.
Oh, did those children love those plates!!! “Can we have our dinner using them, Mummy?”, cried Little Man.
They reluctantly followed my instructions, and wrapped the plates in paper, then slipped them into plastic bags…
I brought out the hammer.
And unwillingly, unhappily, they smashed their plates.
Oh yes, I’m that mean.
Little Man was in tears at the sight of the pieces, Sweet Girl was holding back. They both felt really sorry for the loss of their plates. We used that “sorry” word a lot.
And I got the glue, and we started to put those pieces back together.
It was tricky – I am not a china plate restorer, and my glue was sufficient for the purposes of the lesson, but not of the “super” variety.
The plates are “whole” once again, but not the same as they were before.
“Sorry” puts pieces back. Time allows the glue to set.
But once you smash something, it will never be the same again…
I don’t especially aspire to “normal”… never have. I like quirky, I like unique, I like being different and those who are different.
I also take the meaning of the word “normal” as it should be – “usual, typical, expected”. When talking to others, I often refer to those growth charts mothers will be all too familiar with from baby days – those curves within which our infants sit and progress, and to which we cling, hoping our babies do not “fall off” them, as medical professionals imply that such a fall would be dire.
My Little Man sits firmly about an inch lower than the lowest of these curves: clearly, unequivocably, unjudgmentally out of the normal. It follows, therefore, that his growth is not normal. My goodness, how people react when I utter those words – as though I had spoken some unimaginably dreadful thing. But it is simple – the “norm” describes the vast majority of the population – 99% roughly. If you are outside that margin in whatever is being described, then you are by simple definition not normal. (As a little aside, I’ve rarely seen any particular advantage in being “normal”….)
Similarly, I think I have a fairly balanced perspective on “normal” behaviour in children. My personal experience was probably on the “good” side, but I had the joy of babysitting some “challenging” children, and in teaching I was familiar with a wide range of adolescent attitudes and behaviours, and privy to their parents’ challenges.
I’m an analyst and I have a tendency to judge my choices, behaviours and thoughts very harshly. In dealing with my lovely children, I have fairly high expectations of them in terms of manners and behaviour, but their various difficulties and our quirky experience of family life have taught me that allowances sometimes have to be made; that children need to rebel; that times change and expectations sometimes have to change with them….. etc, etc, etc… I know deep within my core that to expect anything close to perfection is simply unrealistic.
I know that teenagers can be surly and rude.
I know that they can rebel.
I know that many teens spend their lives in their rooms in front of computer screens.
I know that they do not go to sleep till the small wee hours.
You all have to stop telling me these things when I am at my wits’ end trying to get my teenager back to school. You have to stop telling me that it is normal for a little boy to have a tantrum simply because you ask him to wear a coat. You have to stop telling me that it is normal for a preteen girl to huff and puff in exasperation when asked to take her clothes upstairs.
Why do you have to stop? After all, you’re quite right. Teen boys don’t want to go back to school. Ten year olds don’t want to wear coats when the sun is out. Pre teen girls are in their very essence huffy.
Well this is why:
Last week, we began preparing a young man for his return to school three days before needed. Plans were made that he agreed to, and on the day when he decided against those plans, gentle support was the only way to go. I cannot emphasise enough how few strategies we have. Direct confrontation is not an option – it leads to fear, anxiety, anger, aggression and violence. In fact, the only option we have is time, and gentle persuasion. And time. In the event, Darling Man had to take one and a half days off work, a carer was needed to look after the two Littles, and us two adults had to be intensely WITH Eldest until midnight, and then all day the following day to support him in his return. Since then, there have been many phone calls to and from and with massive support from school staff, he is slowly beginning to settle back into school. Term has been in full swing for ten days now, and he is still not in class full time. So next time you tell me it’s normal to struggle to get your teen to school, think again – how often do you experience this?
Little Man, who is constantly, continuously, heart breakingly exhausted, was due to have a friend to lunch. Said friend lives up our road. We walked out of the house, and I asked him to wear a jacket. In spite of the sunshine, it is still chilly and his health is such that a light jacket is simply the appropriate clothing. This simple request led to screaming, shouting, refusal in the middle of the road for ten minutes, after which I carried him back into the house. He began to hit me and kick, so Dad stepped in. More punching, kicking and throwing whatever was to hand… and all the time shouting “let go of me”….. we were not touching him but he seemed unable to process that. This state of play lasted for nearly an hour, during which we were able to steer him into his room. Screams eventually turned to sobs, and a good while later he emerged full of remorse, and completely worn out. So next time you tell me that little boys have tantrums, think again – how many of your ten year olds lose control so utterly over such a trivial matter? And how many of them are then unable to do anything but sit on the sofa for the remainder of the day?
I’m going to give you the pre teen girl. The difference with mine I suspect is the emotional intensity of her emotions, but mostly the emotional intensity of the aftermath. She comes to her senses more easily and quickly than the average teeny girl I think… But topples straight into Guilt, which then needs huge support to work past.
Parenting’s not easy, not for anyone. And I’ve no doubt that for parents of children who lie in the norm of childhood behaivour, some days can feel everlasting, and life can sometimes feel really hard.
But truly… until you’ve experienced the intensity of reaction and behaviour that our “special”, “out of the norm” children experience and force us parents to experience, you must stop telling me, us, that “all children do that, it’s normal”.
To those of you who broke me this last school year – knowingly or not, willingly or not…
I don’t know why you felt so threatened by me.
I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.
I don’t really know what led you to choose to ignore me so utterly.
I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.
But all those things you must surely have felt, for there is no other reason for your actions. And the year is over now, and I and my Little Man will not be returning.
But know this: you broke me. I will mend and I will heal, but you broke me.
All summer long, your voices have been dictating how I care for this little boy. Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair. Those voices who maintained that he ate exactly like other children. Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day. The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night. The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors. Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.
All of you… I know that you had good intentions. I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that). And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything. [You forgot that Little Man has many, many professionals, and that the only person they have in common is me. You forgot that they see him once in a blue moon, and that I care for him daily. You should not have forgotten that.]
And so, you broke me. Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs. You see, you told me in those voices, in those actions, that I was wrong and you were right. And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.
I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.
So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down. And the really insane thing is that I have been listening to you. We have been using his wheelchair about 25% as much as my gut tells me to. I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front). I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…). I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.
And now, half way through the summer, Little Man is yellow, bordering on grey. He is in pain most of the time. Leg pain mostly, some arm pain and tummy ache and regular headaches. He is TIRED… so, so tired. His eyes are huge, and dark. His memory is hugely affected, and he is struggling to process all that is happening. That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.
And you won’t see that. Because you are tucked away enjoying your summer holiday. Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway). Sad to say, I don’t think you’d even see it if you were standing here right now.
You can’t change what happened this last year. You will not have an opportunity to do things differently with Little Man, or with me. I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.
But I will heal and mend, and as I do so will my care of Little Man. I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time. And we make a new start with new staff for whom a little boy such as him is wonderfully normal.
So you, in all of this? If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?
I would ask that you remember we parents of special children are always on your side. We want to help you because if you can meet our children’s needs, they will be happy and they will thrive. I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).
Listen to me. Listen to the mother or father who comes to you for help, or to give you information about their child. There is a reason for their need to communicate. And armed with information you can be better… better teachers, better assistants, better adults.
I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately. In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs. If you ignore the parent, the child WILL suffer.
I would ask you to put to one side for a moment your ideas of failure and success. I would ask you to remember that you can only do as much as you can do within your environment. And that environment, and your help simply may not be enough.
I would ask you to remember that sometimes, giving up is necessary for a child to succeed. Sometimes, success is having the courage to say – this child needs something different.
I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me. Mine is but one rather little voice, shouting, crying, singing for my children. There are many who would shout me down because what I sing is inconvenient.
You can choose – to listen to my song, and join with me to support it. Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.
You have so much more power than you realise. You need to know that you broke me. You need to know that I will mend. You need to listen, to care and to be so, so watchful of what you say and how you say it. Mothers like me do not need to be broken. We may appear strong, but really we are very, very fragile… a little like eggshells.
You have so much more power than you realise. Use it wisely, and carefully. Please.
A couple of weeks ago, I posted a status on Facebook laced with more than a little desperation:
The beauty of this system lies in its simplicity: by charting his emotions throughout the day using just three smiley faces, 5 shades of colour and nine or ten emotion words, he is becoming emotionally self aware. He is also seeing his success, and notices how often he is calm, or happy. The rare moments of “proud” are celebrated for hours after the event. And he is able to see visually how quickly he can overcome the moments of anger (which are still considerable in their intensity).
I can see it too, which makes it a good deal easier to remain calm and help him through those moments.
Sweet Girl is using the system… with less obvious success, but I have hope that in the long term it will be of great value to her.
Long may this island of peace last!
This is a short list of expressions that cause Sweet Girl untold and unforeseen pain. All those innocent little expressions we adult use to “help” children who are struggling to do something – those with special needs and those without. In Sweet Girl’s case, this is one area in which her autism comes to the fore. She misinterprets the words you use, the tone you use, the body language you use. Add in her extreme desire to do the right thing and please, and her severe anxiety, and you have a recipe for disaster leading to a little girl in extreme mental distress… I hope this helps her, and I hope it helps some of you too!
|What you say||What Kesia hears||Emotional consequences||What you might say|
|Come and help me do …||I must go and help or else…||Kesia takes on responsibility for your emotional and physical welfare||I’d love to share this activity with you OR Would you like to help me with…|
|You can do this||I don’t feel I can, but the teacher is telling me I can, so I must be wrong and I must somehow do this||The strength and will power required of Kesia to do this will leave her feeling exhausted and deplete her resources for the next day. Each time that same activity occurs, she will put herself back into this state and long term will simply be unable to continue with anything. The exhaustion will also impact on every other aspect of her life.||Well done for getting this far… OR How do you feel that went? OR I think you can do this, how do you feel about it?|
|I can give you this help because someone else is doing my job||Because of me and my failure, you can’t do what you want and should be doing||Guilt mixes with her initial anxiety and plunges her deeper into an emotional state over which she has very little control||Nothing. Any suggestion that your support comes at a price will result in Kesia not accepting it. She will only see that she is an obstacle in your life and will become more and more upset. IF you are able to, try transferring to someone else, but otherwise the only safe thing to do is call home|
|We must get a move on because… (time restriction)||I hear you are in a rush, but can’t you see I’m trying my hardest to do what you want me to? I just can’t!!||In addition to her starting anxiety she is now feeling that she must at all costs do what is needed. Her body and mind won’t allow her to, so she adds guilt and self blame. Left in this state, she will start to hurt herself.||Don’t put time restrictions on her. If you need to hand over to someone else, do. If you can’t, then we are back to the reality that school can’t meet her needs. I am on call as much as I can possibly be because her safety both physical and mental are my priority|
|What you say||What Kesia hears||Emotional consequences||What you might say|
|You are so clever, I’m worried that you may fall behind and that would be a shame||I’m falling behind. You are worried. Being worried is awful, and I’ve made you feel that way.||Guilt comes once more to sit on top of an initial anxiety about her environment. Her concern for you is so great that she will sit with that guilt for days after such a comment. She will also stew in worry about her own progress which will heighten her anxiety, making it even harder for her to access learning.||This piece of work shows me how clever you are, well done. OR I’d love to see a piece of (type of work) from you. If you feel you can’t manage to do it at school, would you take it home to do?|
|I’m worried… OR a worried look, frustration, anger… any negative emotion displayed orally or physically||I’ve made you feel worried, and I know from personal experience how awful that feels.||It’s really important to shield Kesia from any negative emotions. She will don them like a second skin and live them for you, to a far greater extent than you probably feel them. She doesn’t have the ability to survive that.||Kesia spends her whole time analysing facial expression, tone and body language. She frequently gets them wrong and has very little idea of intensity of expression. She takes full responsibility for your emotions. It’s really important to try and stay as calm and neutral around her as possible.|
|You really should… It’s going to be so much fun!!||I really should… I’m supposed to have fun. If I don’t, I will have failed both myself and you.||Fun is a subjective thing. Kesia may well feel more frightened by a “fun” activity than you, but will feel compelled to push herself extremely far out of her comfort zone to make your words true. If she fails, the consequences are long and severe. She will be utterly convinced that she has failed you, and that will last a long time. If she succeeds, great, but the adrenaline rush afterwards will be so large that she is likely to be exhausted and will require extreme support, calm and tolerance of the ensuing “high”.||I really enjoyed doing this even though… OR He didn’t like it, but she had fun OR Do you think you would enjoy it? – leading to a conversation in which Kesia is able to air any concerns she may have|
In one long day spent with my two sweet if high maintenance home children, I had already experienced something of a rollercoaster with Sweet Girl. The morning was a fabulous, wonderful high that I am leaving for last on this journey of three posts, because the third event of that day (now forty eight hours in the past!) is distinctly less pleasant.
So why revisit it?
It’s simple really. It happened, it was a big event this week, and I’m hoping that by marking it I can make sense of what happened a little, and remind myself that things can improve as well as explode sometimes. And in this instance, writing Thursday’s explosion gives me a marker in time to see how well we improve!
Little Man has an explosive temper. I don’t believe this is part of his basic personality which is largely easy going and happy. However, growing up with an older brother who is almost always angry and enraged, and a sister who is almost always anxious and intolerant is going to affect the most laid back person. Add in the curve ball that is chronic illness and constant doctors’ appointments, tests, needles, treatments, therapies and an increasing awareness of being different to all the other kids in your school, and you have the ingredients for quite a lot of unhappiness. Little Man Tom is a bright button, but he has learning difficulties. Of what nature is far more mysterious, but I do know that his memory works in very strange ways, and that he has a very flaky understanding of the practicalities of life (compared with other kids his age). With all these factors playing a part, he is a little boy with a VERY short fuse.
Thursday morning, following an amazing riding lesson, we arrived home for lunch. While I was preparing this lunch which was by no means late, Sweet Girl and Little Man were playing. She became quite considerably upset when he wanted to rename one of her teddies temporarily. Sweet Girl had morphed into Queen B**ch, sotto voce… Little Man does not do sotto voce, and so the first inkling I had of this fight was his loud, shrill voice yelling at her. My attempt to a) separate them and b) help them sort out what was clearly a trifling sibling issue was thwarted by Tom’s about turn as he directed the full force of his anger and hurt at me.
Now… I am patient, and understanding. It turns out, as often, that Queen B**ch was totally in the wrong, and his anger was primarily confusion and upset at her reaction to an act of kindness. All of this was to come out much, much later. However understanding I may be, I have very little tolerance of being used as a punching bag. I have experienced this both literally and metaphorically at the hands of Eldest and Sweet Girl, and Little Man has now joined the party. At no point have they ever seen me accept such behaviour. There have ALWAYS been serious consequences.
And yet… here we are again.
I was able to curtail the lunchtime crisis and accepted the rather sullen sorry from both Little Man and Sweet Girl. Queen B**ch had retreated in the face of my exasperation, and actually Sweet Girl is beginning to accept her inner Queen and therefore control her a little better.
Fast forward to the end of the day. 9 hours of solid, intensive, supportive parenting. I love them completely, but I really needed a little bit of “me” time. Given the last few days, I wanted to spend a little time at the piano in the hope of recapturing the glimmers of peace I had found there the previous day. The Offspring were in the sitting room, apparently playing nicely.
For all of 4 minutes…
Oh yes, dear readers, I got FOUR minutes of peace. (Needless to say, not enough to find even a hint of a glimmer.)
Gentle, patient voice: “I think you need time apart, just move away, I’m coming”
Patient Mummy morphed, much as Sweet Girl had earlier. 9 hours, I spent with these two!!! To cut a long and, let’s face it, boring story short, I spent 45 minutes shouting at them! I don’t do shouting very often, it’s proved to be totally counter-productive. But I had had it!
Sweet Girl wanted to use a step-stool given to Little Man by Nanny. He was not using it. But on the basis that “it’s mine”, he became immediately aggressive and possessive about it. Kesia reasonably wanted to continue using it and resisted. Little Man morphed into Godzilla, King of Destruction and charged to take it from her. Screaming ensued and I intervened. So far, so banal: brother and sister and a good dose of stupidity.
Unfortunately, much as earlier in the day, Godzilla, King of Destruction showed once again his utter lack of control and turned his gaze and wrath onto me… wrong move!!!
Hence, forty five minutes of me shouting!
Sweet Girl had the good sense (only recently discovered) to stand in a corner of the room facing me and looking downcast and apologetic. Godzilla, King of Destruction did not, and took forty five minutes to finally realise that this was a fight he could not win.
It was harrowing, especially after a day which had already drained me of all my parenting energy. But I do think it was worthwhile. As much as I have to take into account Little Man’s difficulties, fatigue and the problems that will necessarily follow the exhaustion of a temper tantrum, there are occasions when it’s important to let him know that he cannot get his own way by whining, or worse, fighting with Mummy.
I haven’t found a solution to help him.
I’ve used pictures, to help him understand the step by step nature of his arguments and emotional meltdowns. I’ve used reward charts and consequences, warning cards and words, distraction techniques and relaxation techniques.
I’m no closer to feeling that he understands what’s going on. And if he doesn’t understand it, I’m not sure how and if he can learn to change his behaviour or control his emotional outbursts.
At the moment, we know that he’s not well. His weight is not good, and just by looking at him you can see he’s quite sickly. He’s started throwing up again (hasn’t done that regularly for a good few years now), an he’s tired all the time. He experiences headaches daily and we don’t know why (another thing to investigate). Clearly there is a link with food, and I’m sure you all know of someone who becomes ogre-like when they need to eat. But what is going on with Tom and food is anyone’s guess…
Little Man is not short of valid excuses for emotional rocky seas. But as his mother, I cannot allow him to behave in ways which will cause him great harm long term. Somehow, I have to teach him to deal with disappointment and frustration in a way that is socially acceptable. I don’t feel that I’m very far along that path. I’m trying, day by day, step by step. And I’m ALWAYS open to suggestions. Given the wide range of difficulties I’ve experienced already with Eldest and Sweet Girl I may answer with “done that”, or “no, that won’t work”, but mostly, I try and see if those suggestions can in any way be useful…
The last couple of days have been better. I have cut off Little Man’s tantrums just as they are about to begin and although it’s been tough, they haven’t escalated. I’m hoping that by marking this big one in time and in writing, I will be better able to help him navigate the next one!!