Ben is using language in a cute, but atypical way. It is as if he is thinking of it like blocks of Lego – and how he can arrange them in a pattern.
He is still very much of a Cbeebies boy, and hence, a fan of In the Night Garden. Regular watchers will know of the paucity of language in the show. And how the opening credits open with the premise that a child is falling asleep, and how they might imagine themselves in a little boat “no larger than your hand… this is the way to the garden in the night”.
Ben has been a regular watcher of this show now for 3+ years and is intimately familiar with every story and phrase. In many ways, the emotional displays between the characters are similar to the way that he behaves towards other people, even now – more gesture, less language.
Tonight, Ben’s father was putting some bread in the freezer. Ben stood in the doorway and said “it’s f-f-f-freezing” and “this is the way to the freezer in the night”.
Which I found incredibly funny. It is only a matter of time before he learns of the joy of puns and how one word can mean two things, to comic effect. If sorting things is the way that his mind works, then sorting words into meaning/spelling/sound is going to be a fun game for many years. Let’s not mention how he will be devoid of tact in this – that is a given. And how he might make leaps of humour based on these word linkings that no-one else will understand or find funny, so that he will be an outsider there as well.
I’m just so pleased that vocalising has become slightly less a matter of rote (which it still is, on many occasions, right down to intonation and expression) and more something to play with – out loud, rather than silently.
It is true that it is not communication. And that it has no interactive aspects to it – the words are toys to be played with, not necessarily to convey feeling or meaning to anyone. But if they are on the same wavelength as putting numbers together in a pleasing order, or trains in perfect sequence, or drawing channel logos perfectly, or writing down the names of favourite shows in perfectly formed script, then this is still progress outwards.
Ben is Autistic. Definitely not Aspergers, because there is significant language delay and distortion of learning language/communication. But it is HFA. And strangely, the diagnosis means that, on a good day, it might be said that he can learn his way out of difficult social situations.
It may be that I have an overly analytical mind, but I do remember trying to explain, when a teenager, or perhaps even later, that I wanted a book to tell me how to behave in social situations – that if there was some sort of guidebook or handbook, I’d be able to look up the reasons why I apparently got it wrong.
I went through life knowing (knowing is such a subjective thing, when talking about social matters) that I was getting it subtly wrong – I didn’t fit into any social groups, and not those of my peers.
Now, of course, I can attribute a lot to a lack of confidence, a certain low self esteem and a certain history at home that cannot have helped. So much of my self-doubt can be explained away by these things alone. Because I cared deeply about the approval of my peers and the others but never seemed to hit the right spot of understanding.
When it comes to my son, then, I know about the desire to have the inexplicable explained. What I had to learn the hard way (how to organise myself in a world without any help, how to know where I was going, by when, with the appropriate kit,what to expect when I was there, what to say to whom) I can hope that Ben will learn with some help. Even with all the intelligence I believe he possesses, he will find it hard. I did. But I think I was blessed with more ability to discern what was appropriate, was able to forsee outcomes, and was able to learn by example and extrapolate in a way that he may find difficult, if not impossible. Not to mention, I was not inarticulate.
What can I do but love him to pieces, to give him the confidence to go out and make such way as he can? And try and give him the mental handbook and ways of thinking that will bring long term success. Without changing him to be who he cannot be, and all the frustration that comes with that.
He can only be the best he can be. I am limited in the same way. I cannot want more for him than his health and happiness. So long as I keep that topmost in my mind, I will be alright – everything else fades in comparison
I had a visit from the community nurse today – happily she brought along a colleague, who had a bright idea, and she was also able to play with B, which helped a lot.
I think at this stage we are talking about specialist products – so she took some details of what size B needs, as well as a history of what goes in and out and what times of day. I am reasonabnly sure of the times that I check his nappy, but less sure of the results I might find at any particular time of day – and when the deposit might have been made – if liquid, it is very hard indeed to tell. I *think* I probably use about 8 nappies a day, but then there are times when I might use more.
I asked whether there were any suggestions for how I might change B when I was out. Last time I had to do so (I can cope with the idea of him being in a wet nappy when we are out, because the nappies hold the liquid away from the body, but when there is poo, I can’t stand it – I have to change him – the thought of his little bottom burning is almost unbearable to me – exceptions are for when I am driving and clearly cannot pull over, or if we are already on our way home) I was faced with a dilemma – where to actually change him.
Gone are the days when he was a baby or a toddler, and he would fit on the bonnet of a car and be changed. Gone are the days, apparently, when he would fit on the plastic fold-down changers in the toilets. I found that it creaked ominously under his weight (not to mention that he was over 5 kilos over the maximum recommended weight). So I put him on it, propped the table against one leg, so I was standing there on one leg, knee bent to support the structure, and then changed him as quickly as I could.
I am not going to put my bare feet on a public toilet floor, so I am definitely not going to put my son’s bare bottom on the floor.
The community nurse suggested something that has been forming in my head for a while – that I make an enlarged changing mat – she suggested from pvc tablecloth – and maybe with a little bit of padding but not much, so it will folf up fairly small. Had I tried using a garden kneeler inside the house to protect my knees?
Interesting. I was leaning towards cutting a yoga mat in half, and making the half size mat into a changing mat. Not so washable though. My other alternative was just to quilt some material together and have it go through the washing machine.
Dunelm Mill is apparently the place to go – now I just have to get there. Mission for before I am at work full time I think. They do some things with online delivery, but some not.
First day at school – I managed to convince the school that it would be the better idea to have B start as soon as possible after finishing nursery, so that he would be fully acclimatised before the other people joined the class, and as soon as possible so that his socialisation skills would not be lost and the shock to the system would be minimised.
The school operates a staggered entry system for Foundation year – with children joining the school gradually – this week B is there for an hour and a half each day, and next week he will be there from 8.55 through to 12.30. Hopefully by the end of the month he will be full time until 3.30, if Mr D, his teacher, thinks he can cope.
So I have to sort out school dinners next week. And work out how to make sure he has the dinner money and knows to hand it over. Surely I can do something to make this easier? I should also get a timetable so I know when he has PE and not. Since timetabling will be an important skill and coping strategy to master, I think it should become part of the family planning, so that Ben starts to understand the importance of having the right clothes on the right day. And how to use a calender to navigate roound daily life. Maybe if lunch money is added to a Monday task for Ben, then this will help.
I am surprised to find that the TA and the form teacher have not had sight of the Statement, and that they are unaware of the needs that are outlined in it. Surprised would be my official word for it. Staggered would be how I actually feel. So much for the transition process actually working.
After calls to all and sundry, I have now established who his caseworker is at the council, that she will be sending me a spare copy of the statement so that I can give it, by hand, to the school, so they definitely have a copy. And that no paperwork or information from nursery has gone to the school, because the school need to request that information. So much for the Bright profile and detailed reports… Apparently the Bright profile is now out of fashion for tracking progress, but it should be useful.
The school has a new SENco, which may be the reason behind the paperwork not being in the place it should be. The council didn’t know who it was, so I have now furnished the council with this minor detail. Perhaps she has inherited a mass of paperwork and is swamped and does not know one end of her desk from the other.
Someone is smiling down on me slightly though. I need to get before- and after- school care for B, as I have a job to start this month. And I may have found a childminder who appears to understand the essentials of autism, but more importantly, is interested. When her youngest has finished having chicken pox, we shall go round and meet and see whether Ben would fit in with her existing children.
What on earth am I going to do in the holidays? make sure I have a week off and M has a week off, and take one week at home each? And in the summer? pack him off to stay with grandparents? Wonder what they would make of that???
Most of my emotions are now all mild – in that underneath I may be seething with frustration, anger, sadness,regret but above the surface, I have to try and maintain the calm unruffled exterior. Think Swan : this alludes to my grace under fire, my ability to make progress without there being any tangible effort, my overall serenity, despite paddling continuously, having a snappy bite that might hurt, and the odd feather out of place. And my desire to go with the flow, except when absolutely necessary to achieve lift off.
Today was a day where we went to see Dr M – apparently my GP had (after the disastrous visit where I tried hard not to vomit through period pain) thought it wise to arrange a referral to Dr M so that if appropriate, an appointment could be made at the enuresis department.
Long story short: B was his usual untamed self, into everything. And Dr M seemed (to me) surprising ly inflexible in this regard. And basically didn’t appear to know why the referral appointment had been made. When I discussed the toilet training issues, and after an examination of front and back bottom, she appeared to have the same professional opinion as me and everyone else: that B is just not ready for toilet training.
There has to be, to my mind, a certain regularity of bodily functions or an awareness of their passing, or external observable symptoms that something is being passed, before toilet training can start. As I cannot anticipate when B will need to go, and he shows no signs of doing it, and appears not to know that is what he is doing, then no training is going to work. In the meantime, I am approaching the subject with a combination of story-telling, demonstration, reducing fear of being without a comfortably padded seat, or clothes, and making no connections between excreta and disgust, as far as possible.
Dr M tells me that toilet function difficulties are usually solved by the verbal autistic child, over time, but long lasting incontinence is more commonly found in severly impaired non verbal autistics.
But that’s not the problem. The problem is that I went to the meeting thinking that Dr M was going to be there in the background, if I really wanted medical advice and reassurance on B’s development throughout his life, with a special interest in autism. So that I could say when there might be a problem, and I could be reassured with “well, that is not unusual for children with an HFA diagnosis, have you thought about approaching things this way” Medical, but also behavioural.
I was left with the clear impression that Dr M can help me no further than to deal with medical issues: now the diagnosis has been made, it is up to the school, nursery, and me to get him through to adulthood – that it is only medical problems that can be helped, and have I tried EarlyBird?
I want to say, in this moment of ranting, that this is just not good enough! My son is a gorgous little boy, with intelligence, but with a good deal of communication difficulties and all the issues associated with that. Not to mention being strong willed (no, that’s nothing to do with his parents, ofc). And I want to do the very best with him. I want to know various strategies for handling him, for guiding him, for teaching him how to handle Life (which has never had the handbook I always wanted and half expected) so that he is able to function to the very best, when he passes through childhood and on to adulthood.
And now I realise that this means I have the Berkshire Autistic Society, the National Autistic Society and me. And possibly, if I rope them in for emergencies, the local council. And perhaps some contact back with Early Bird. Maybe.
This is the only support for parents of autistic children? Really? When so much has yet to be learned about how to manage their lives so as to improve access to education, skills and behaviour are the paths to the support limited to that at school, and a national charity? Don’t get me wrong, the charity is marvellous, excellent – but this charity is the only official support (apart from school) for autistic children and their families? And this is not the support of “yes, he is doing that, and that and that, and have you got any suggestions?” but generalised support. And unlike a broken leg, where the different breaks are more or less similar, autistics vary so much that the only constants are in the generalised features.
Why is there not more available? More akin to a social worker who would follow B throughout life (OK only in working hours, but available) and who could be the central point of contact so that there is continuity of care, and odd features can be distinguished from general behaviour, and red flagged for attention if they are particularly troublesome, and downplayed if they are not excellent, but expected, and in line with the diagnosis. No – it seems that I am the social worker – not merely the carer, the parent, but also the co-ordinator, the person who learns through research, blindly hoping that I am doing the right thing. When someone who has seen all this before with other autistic children could have helped me through it. And suggested valuable short cuts. And been a rock not only for me, but for Ben. In case something happens to me, knows what’s the current stage of things.
Damn – no wonder those who are very vulnerable indeed get lost in the system – there is no one keeping watch at all, unless you have a keen, reasonably educated, adjusted parent. Not Good Enough.
I realise I have been spending far too much time on Facebook, and there have been several posts there about B, including pictures and explanations of how we have spent our days and the things we have done. In order to scoop something back from that most transient of ephemeral media, I will repost a few of the things we have done – backdating them.
Ben has a tummy bug. Hopefully it is more or less over… this has been going on since about 4.00 this morning.
Poor little love, he was most disappointed that being sick was not finished. He seemed really worried and ashamed. And I have comforted him and told him it’s OK for many hours now – must be about 12 hours…
OTOH, boys with poorly tummies do not get icecream. This is a disappointment. And dry toast is no substitute for interesting jam sandwiches with butter and strawberry jam. And no Ribena is bad too. So, bread and water for the little prince…
Ali pointed this out to me, and it is also crossposted on the BAS friends page. To anyone who is interested. Ben has HFA, and I try and read or see anything I can to work out more about how he is who he is, and how he sees the world differently. Come and join me…
A bit shattering to watch. Hugely emotional for me as I identify with the families caring for their autistic children (ofc I do). And I have this feeling that there is so much we have to learn about autistic understanding of the world. W