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Yellow Belt!

I have been taken up for the last few months with work as I build up my consulting business to where it should have been a year ago. I am pleased to say that it is well on the way to being there, with several retained clients and enough ad hoc work to make life more than bearable and much less tense.

Of course, life with Michael has continued along similar lines to before. ther have been significant steps forward: the LA has paid for an Occupational Therapy Assessment at school and also the programme that the report recommended. I cannot recommend this approsch strongly enough. Michael enjoys the interventuions and expresses just how much he benefits. Interestingly, his teachers rave about the difference it has made to how Michae responds in class.

There has been a read across into home life, with exercises at home to help Michael deal with stress and also to help him sleep. These have had many positive impacts. Particularly the occasional ability Michael shows to ask for help when he is stressed. A key technique involves squashing him. Mainly under some cushions, or similar. Michael is large for his age and his body flops all over the place normally. He keeps moving to get a sense of where he is and feel more in control. Squashing him (deep pressure is the technical term…) seems to give him a sense of where he is and relaxes him significantly.

We now do this at home regularly before he goes to bed as part of a wider routine, and also when he is very stressed and he asks for help to calm down.

So school is going better. The Christmas holidays have brought the typical level of stress expected from many ASD kids. But even we were taken by suprise by just how challenging this Xmas has been.

Whether it was the total panic attack, with full-on sweary 1am wake-up call on Xmas day when he said he needed to get up and would never be able to sleep again, or the hair-trigger aggression and violence he has displayed towards all of us most of the holidays. Overall it has felt as though we spend the whole time just telling him off.

The big news though, is JuJitsu. Michael has now been doing this for about 6 months. This is, truly, astonishing. He is gifted in terms of hand-eye coordination and shows a talent for golf, tennis and other similar sports. But he has never been able to sustain interest for longer than a few months, even with carefully constrcuted 1-2 support.

We have been taking Michael to jujitsu 3 times a week ever since he started, without ever having to pressure him to do so. I have mentioned before concerns over violence, but he has been helped to manage this by the instructors, both inside the class and outsise.

Today, after attending holiday club classes (apart from 2 days where he had meltdowns in the morning before going and couldn’t even think about it – we wouldn’t withhold it as a punishment) he was awareded his Yellow Belt.

He was so proud of himself and Sensei left him with the thought that he had made fantastic contributiuon to supporting younger members of the club and had shown real committment, skill and concentration, so this should give him the confidence that he could do the same in the outside world.

I couldn’t have thought of a better message and we spent a happy afternoon together where his blinking tic was almost completely absent.

Sometimes, if I have been working in London for the day and return at around 7-8pm, Sam opens the door for me in an almost Zombie-like trance. The colour has gone from her face, which seems stretched and to have no recollection of when it last smiled. Her eyes are dull and shoulders drooping.

Although I am fortunate to be able to spend plenty of time at home with the boys, yesterday I had the full-on, 3.30-7.30pm Tsunami of rage, tears and trauma from Michael. By the time Sam got home, I felt just as Sam normally does. I had managed to keep control, not get angry or raise my voice. But it took me the rest if the evening to feel right again, with lots of support from Sam.

Of course this means that Michael has had a difficult afternoon. Transition periods from school to home (and vice versa) are a big focus for his anxiety: structure of school, vs chaos of home. There may also be a proximate cause in terms of something like a problem at school, or an anticipated demand at home, that is causing anxiety. There are so many triggers, but sometimes there are days, like yesterday, when there is no big reason at all.

It all came down to when Michael wanted to eat dinner. He does Jujitsu from 5.30pm-7.30pm on Tuesday. He is allowed to relax with a console or iPlayer for half an hour when he gets home to settle before bed. A snack is also allowed. But he has always struggled with sleep and he is cutting down on Melatonin at the moment because there may be a link to his increase in weight.

He also struggles to appreciate the distinction between his being a child and us being adults. At 10 years old he has only the dimmest perception of other people’s needs and identities. He therefore insisted that he wanted to have dinner with us after Jujitsu. He has been really tired and anyway, this would mean another very late night with no private time for us.

But Michael’s need for this outcome very quickly escalated into extreme levels of need and he went from making strong statements, to bad language, crying, writhing around on the floor, highly manipulative (and sophisticated) use of language in argument, kicking furniture and slamming his bedroom door (which has finally come off its hinges).

Incredibly, he managed to control his language and, for unexplained reasons, he didn’t blame it all on Ben, his younger brother. I tried to be gentle, but clear with him. I praised him for self-control with swearing and suggested optional time-outs so he could shout and swear privately. But the barrage was unrelenting for nearly 90minutes at full blast, with a gradual slow-down after that.

In the end, he switched it all off in a trice, when offered a way out that reflected the fact that he was clearly very tired from several late nights. He would skip Jujitsu entirely tonight and have a calm evening and an early night. He didn’t even push for dinner with us.

It is sometimes bewildering to be exposed to this level of aggression and anger. Even though it was not directed at Ben, he later started behaving in a way that mirrored Michael to the point of using exactly the same phrases of defiance and aggression. Fortunately, I could see it for what it was; Ben is only 6 and just needs a bit more support and attention than I could give him while Michael was going berserk (I had said I would take him out, but this had to be shelved).

We are working towards getting Michael more support at school and this may help ease the general build of of stress that is typical of ASD kids who hold it together during the school day.

But this is the first session of Jujitsu Michael has chosen to miss. He is doing so well at it that we are desperate for him not to lose interest because he can’t get what he wants. It makes you feel like giving in on everything…

Sent from my iPad

This is quite extraordinary…

Michael has never managed to stay in a paid, after school, group activity for 3 months EVER but for the first time, this year he has persevered, achieved rewards for his efforts and has today been awarded the Tenki Ryu Ju Jitsu red belt! He has religiously been to Ju Jitsu 3 times a week, for 2 hours each time and much to our astonishment, shows no signs of giving up.

When I arrived this evening to pick him up, he proudly walked up to me and showed me his red belt. I had to fight back my tears!  I put on a brave face and went to Sensei for a debrief, who told me Michael had thoroughly deserved his belt, that he had shown maturity,  respect and an understanding for the principles of Ju Jitsu to achieve the grade. She said that in the recent months he had been kind to others, he had been dedicated and that he had taken criticism on the chin when he had been out of line!

Ju Jitsu is a martial art of self-defence, consisting of a range of movements including striking, counters, deflecting strikes, throws, injury points and grappling  We have been cautious and at times rather anxious about introducing Michael into the martial arts world but after nearly 4 months, Ju Jitsu has helped develop Michael’s self confidence, his fitness and his awareness of the impact he has on others.

To achieve his red belt, Michael has had to earn 4 grades (red tags), each of which has taken him nearly a month.  As well as having to follow a strict set of guidelines in the classes, he has also had to present a weekly report card of objectives he has had to set to work on at home and at school, both of which are then respectively graded to be discussed at the end of each week in Ju Jitsu.

I confessed to Michael on the way home that I was so proud of him, I nearly cried. He replied by saying that when he was presented with the belt, he nearly cried too!!

This is a magical moment, which makes me feel very emotional even as I write this blog.

Then Michael starts laughing like a drain. He’s talking to his school transport escort, Liz, and his face is a picture of happiness. We’re in the third week of term and I am delighted to say that after a long and sometimes difficult summer, Michael has settled right back in to school.

And in an example of just how good we can be at getting things right in this country, Liz is Michael’s school escort for the third year in a row. She is a wonderful lady, with her own young grandchildren, who has seen it all. But she laughs like a drain too and knows how to make Michael laugh. She is kind, but firm and knows how to draw the line when he gets overexcited.

There are so many things that Michael finds difficult every day, that it is just an incredible relief that his journey to school is not one of these, despite the fact that it is nearly an hour each way by LA-provided taxi.

A big reason for that is Liz. Thanks for everything, you’re a star!

I have been away on business for the better part of a week; enough time to get some perspective on recent developments with Michael at home and a school, I had hoped. But in truth it has probably only had an anaesthetic effect. That is, until I have a calm moment to stop and think about it all.

The truth is that Sam and I are worried and scared about it. Since the start of this year, Michael has become steadily more angry and aggressive at home, complaining mainly about school. The details of this are important but we are addressing them directly and are hoping for the best. But the fact is that it the deterioration has highlighted for us the challenges that face us with Michael’s education and life home in the longer term.

We just don’t know what could happen next. Most periods at home, before and after school and the weekends and holidays, are marked by displays of much higher levels of anxiety than we have become used to and that we have been able to manage using the tools that come from an understanding of what upsets Michael. In particular, the feeling he has of loss of control over situations through demands, small and large, that are placed on him.

These range from ‘going to school’ to having to get ready for bed. He deals with these much more aggressively than normal. Before he would ignore requests and suggest other activities and we could finesse situations. Now he just goes straight into a blinding rage and swears violently, often blaming his younger brother and threatening him and us with violence. Items are thrown and doors slammed. Things get broken. We have had to restrain him on a couple of occasions as he seemed about to inflict bodily harm on his brother.

He is not violent by nature and usually manages to restrain himself. But what if, as his anger continues to rise, he makes a miscalculation? It seems as though he is experiencing real pressure at school and just about managing to keep himself together during the day, letting it all out at home. This is a typical pattern for a boy like Michael.

The school offers intensive support in a very small class with excellent staff pupil ratios. So we find find ourselves wondering just what else they could be expected to do? We think it may be a question of emphasis; after all, the answer for Michael is not just increased levels of support, it is exactly the right kind of flexible support that adapts constantly to his needs, within a well understood framework of behavioural limits.

Michael is, happily, quite communicative, even when he is calm. He tells us that he finds home much more stressful than school (because of the relative lack of structure and the increased range of options over which he may have less control than he would like). He is now 9 and we find ourselves having to ask when and whether a residential schooling option might be the right answer.

For a family as close as ours, where we have a profoundly affectionate relationship with Michael, this upsets us greatly. Even after ‘Krakatoa’ eruptions of violence, Michael will often curl up afterwards with one or other of us, at his initiative, to seek physical and emotional comfort. How could he be happy without this?

But we are worried that home life may become more upsetting for him than it is reassuring and that there is an increasing risk to his younger brother (whose only natural defence against verbal assaults is to wind Michael up) if Michael were to get out of control. There is also a risk to Sam as Michael is turning into a large and very strong young boy.

There is more to say on this and I will write more soon, but I know we are not the only family who have had to confront this situation and the acute anguish it must cause. We don’t know the answer, we just want so desperately to get to right for Michael. I have always believed that we could be the ones to help Michael achieve the most out of life, but we are increasingly confronting the possibility that there may be a limit to what we can do….

Sent from my iPad

In one word:  Unpredictable!

Every morning when Michael calls from his bedroom, you have no idea what the day has in store for you. He could wake up calm, relaxed and totally in control of himself. His body language will be relaxed, warm and approachable.

Alternatively, he may wake up in a foul temper, demanding anything and everything. The worse he feels, the more outrageous his demands will be. An example of this was yesterday: He woke up and said emphatically, ‘I want to go to Wales now. I’m not going to school today and you’ll have to write me a sick note. I don’t care what anybody else says, that is what is happening and we’re going to Wales today.’  A range of extremely colourful language will usually accompany these demands. He may growl, snarl or be lippy and rude.

The last option is the ecstatic persona. This means he will wake up at a hundred miles an hour and with what would seem on the surface to be an extremely positive attitude. In these cases it seems like the world is not enough and there is no mountain too high for him climb. This however is a false sense of security. He will be impulsive, will refuse to listen to what anybody says and will be like ‘a bull in a china shop’. Unfortunately, this option always ends in tears.

Michael thrives on 121 support. Most children like 121 support but Michael needs it. He can’t look after himself; he needs constant stimulation, has a very low boredom threshold and gets frustrated very quickly when he can’t do something. Although Michael needs a degree of predictability in his life, as a PDA child he thrives on novelty. 

We describe him as a mouse in a lion’s body.  He comes across as self confident, boisterous and charismatic but he is extremely volatile and generally has a low self esteem. 

The family have strategies to help Michael when we can see his stress levels escalating and he is losing control but there are times when he seems to need to let it all out, have a melt down or a volcanic eruption or as we sometimes call it ‘a cracatoa eruption’. When this happens the storm can blow over as fast as it comes. When the clouds clear, the sun shines and we have our Michael back, as if nothing had ever happened.

 With Michael, I think it is fair to say, that the most consistently successful strategy is humour. We had the play facilitator over one afternoon and she was suggesting we play a game together as a family.  Michael was particularly surly that day and said he wished she was dead.  The play faciliator seized the moment, threw herself on the floor dramatically and pretended to be dead, at which point, Michael keeled over Lin fits if laughter. The play date proceeded beautifully after that, without further ado. 

Almost on a daily basis, Michael will go outside and have some ‘Michael’ time. This is where he retreats into his own world of role-play. He doesn’t call it role-play and will get upset at the mention of it. To him it is real. He will take a pole or a sword, go outside and spend approximately 15 minutes doing his ‘moves’, probably best described as a mixture of fencing and sword play. He takes it very seriously and no one is allowed on the grass at this time as he is clearly focused on fighting an imaginary adversary or practicing his moves. This is important time for him and is the equivalent to quiet time or wind down time for neurotypical children.  We all respect it and never interfere or interrupt.

Michael has sensory issues too.  Paradoxically, although he doesn’t like large groups of people or noisy environments, if the noise is of his choice and is predictable, he finds comfort in it.  Michael is often most happy and relaxed in front of the computer, watching a programme, listening to the radio, playing his portable console, with his family milling and chatting around him, all at the same time. We have talked about this at length and discussed it with professionals and it is apparently because the noise he has at home is in his control unlike the other noises out of the home.

I’m sorry it has been so long since I last blogged. I’m afraid it’s not because everything has been going perfectly; far from it. I have been working hard to get new clients and travelling a lot. But even though I should have some time, I can’t get my head focussed on it. I have probably been in denial a bit; just trying to cope.

The thing is, Michel is definitely going through a really difficult patch at the moment. His aggression and volatility at home are pretty extreme (though not as bad as some of the people we know with autistic and PDA kids, thank goodness) and we and his younger brother are definitely bearing the brunt.

The Easter holidays had their good moments, but in general it was a real struggle to keep him on the straight and narrow. In particular, he became obsessed with buying a new piece of hardware for one of this game consoles. As parents we failed to communicate carefully enough with each other, so what had been a long-distant possibility for an autumn birthday, suddenly acquired the characteristics of something Michael might be able to work for over the short-term, through odd-jobs and chores.

Over the course of a Sunday morning at home, with Michael getting increasingly agitated and aggressive, this was translated into a financial plan for how he was going to get the money by the end of the week; suffice to say the level of financial engineering involved would have impressed Enron! But even this wasn’t enough; he now needed us to order the equipment immediately so that it would be available once he had secured all the funding.

By this time I had, of course, realised that the purchase had very little to do with anything he really wanted. Michael has a history of buying things he doesn’t need to overcome his anxiety. he has even started to explain that he knows he does this, but not why. Closer interrogation revealed that Michael had not even investigated what games he would get for the new hardware (and he had certainly not budgeted for any). When he did so, it rapidly became apparent that there were very few that were suitable for his age group; they mostly involved bare-knuckle cage fighting set in rotting jail cells… cue further scenes of tears, swearing and aggression towards Ben and property.

After another day of badgering we finally managed to get Michael to capitulate and shift his purchases onto something that might actually be useful, such as games for his existing system. We couldn’t stop the money as it had been us that had allowed the chink of light into his thoughts.

But is just so draining; when Michael gets an idea into his head he is just unstoppable. Sometimes it is really positive; like baking a cake on Sunday morning to take to Grandma (see Sam’s FB page for the rather messy, but delicious results!). But at other times, baking cooking at 6.30pm as we about to go upstairs to get ready for bed; it is less so.

This happened last night and he shouted at me for an hour about how I was ruining his life; his tone was surly, aggressive, ungrateful and rude. But in fact, I know he was just trying to get what he wanted. I was pleased (in a sad way) that he thought bullying me was a far as he could go; there was no swearing or violence. He even came up with his own alternative (a special treat of cake before bed) and calmed down. He then apologised for being so grumpy and rude and, when I put my arm around him as he watched the TV, he held onto me and wouldn’t let me go, stroking my hand and arm.

This touched me hugely and I felt his vulnerability; I can’t remember the last time this happened quite so spontaneously. I hope, in part, it was something to do with the fact that although I kept my line, I never shouted at him or got angry.

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