It’s totally reasonable, right?

A week of holiday still ahead and the school dream have started, ugh. New Term Eve will doubtless see teachers and students alike with bags packed, shiny new stationery at the ready and full of optimism and resolutions to stay organised and be co-operative so that we can all work in harmony – it will be beautiful… until the first homework submission date when a chaos of threats, muttered curses and excuses will descend.

Day in, day out, I come into contact with students who are experiencing the trials and tribulations of real life alongside school. When a parental marriage is breaking down, for instance, there will doubtless be an impact on the emotional stability of a child and we are asked, quite rightly, to take this into consideration in certain circumstances – concentration in lessons, ability to organise themselves etc. A reason for a temporary dip in standards it may be, but an excuse for bad behaviour, for example, never.

That seems pretty straightforward when dealing with other people's kids so why is it so much more complicated with my own, I wonder? When does a perfectly good reason become an utterly rubbish excuse?

The first point here is a particular bugbear because, as a general rule, I completely disagree with using autism as an excuse for anything but it is sometimes a valid reason. This is tricky… If Rusty is misbehaving – which he does at times, obviously – then I do not think it is relevant that he has ASD and I would not use it as an excuse because this is how the unhelpful stereotype that "all autistic kids are naughty" is proliferated. It drives me up the wall when people preface every statement with something along the lines of: "my son has ASD and so he can't/won't…" but there is a very, very fine line here and it is all down to how conscious children are of expectations. Because Rusty has had firm boundaries both at nursery and at home, he has some understanding of what is acceptable and not and his language is now at a level that we can actually give him instructions. Because he is cheeky and likes to push his luck, there is usually a telltale grin on his face when he is getting up to mischief that has nothing to do with autism and everything to do with being a little so-and-so!

That is not to say it is always easy to pull him into line because it is not. If he is set on doing something a particular way or takes an interest in something like a door or a tap. we can have a big problem on our hands. But, in this case, is autism a reason rather than an excuse? In these situations, the way we respond also depends on the attitude of the people around us. If someone is staring or tutting under their breath (neither of which is uncommon), I tend to believe that they do not deserve to know anything personal about Rusty and I am content for them to believe that he is just a naughty boy. If people are concerned, interested or actually want to help, then I will happily explain that he finds some situations difficult and does not always behave like other children.

There are days (alright weeks… maybe months…) when I am constantly coming up with reasons or, perhaps more accurately, making excuses not to do things:

"I can't afford it" Often true, thanks maternity pay!
"I haven't got time" Pathetic, just make time.
"I can't because of Rusty" uh oh…

So I am using my son an excuse?! That sounds distinctly uncool but it is really, really hard to create a situation which could potentially be problematic when there is a considerably safer, if more boring, alternative. From a logistical point of view, it is almost impossible for me to do anything with both Rusty and Baby A by myself; a daily trip to the park over the road with the pushchair as well as the scooter represents a major achievement BUT is only possible because the boy is currently in love with with the big swing and I know he will not stray far.

Even when children do not outnumber adults, it takes a certain amount of resolve (and a supply of sweets, plus the iPad for emergencies) to put ourselves out there and stray from the outings which we know are safe and, of course, enriching! In my heart of hearts, I know that he simply does not engage with the kind of activities which most children his age enjoy because he is so developmentally delayed in many areas and, therefore, crafting workshops, sport coaching session and anything which involves TV characters is just not going to appeal. Likewise, meals in busy restaurants or party- or wedding-type affairs all have the potential for disaster and so it feels easier to avoid, for the time being. We have missed many events over the last few years and that probably will not change drastically for a long time but that is what happens when you have a child who is completely reliant on you and, I suspect, why families with disabled children lose friends and often become completely isolated. There is no resentment here; I actually feel privileged to be one of only two people in the world who can respond to all his needs and keep him safe and happy.

Rusty has had a fantastic summer in many ways. It feels as though he has actually matured a lot over the holidays and is the most calm and content that I have ever known him; the periods of manic, uncontrollable behaviour have reduced significantly and his speech continues to develop at a frantic pace. There are times when the language just seems to fall out of him – Freud would have loved the seemingly random trail of thought which he is attempting to vocalise! However, on paper, our holiday looks pretty rubbish. We have not spent any nights away from the house and trips have been limited by the bloody weather so there has been a lot of home time. Why didn't we go on holiday? Lots of reasons but Rusty was definitely one of them and a fear of the unknown.

Maybe we are doing him a terrible disservice here by not exposing him to a full variety of experiences but he is only young, there is lots of time… right? Talk about making excuses!

 

 

Advertisements

Toilet talk!

I’m just going to indulge in a moment of self-congratulation here for this morning’s achievements: One adult and two children up, dressed and breakfasted, boy deposited at holiday club, house in some sort of order, baby napping (it’s been a hard morning) and a blooming RATATOUILLE simmering on the hob, complete with freshly-picked produce from our actual garden! And it is not even 9am yet! Might have peaked too soon in the summer holiday productivity stakes…

A month of work + family has been and gone without any major mishap although with some definite points of note.

(9:10 – smugness brought to a premature pause by end of nap. Ratatouille looking bloody marvellous!)

Continued… My short stint at work thrust Mr D into full-throttle parent mode and created a whole new dynamic of Rusty having to share his favourite toy (Daddy) with his sister, with reassuringly neurotypical (and slightly annoying!) results: Some definite jealousy, a bit of stroppiness and, for the first time in his whole life, a phase of loving Mummy the most! I suspect this also has something to do with a nasty eye problem which he finds hilarious. Repeated announcements of¬†“Mummy bad eye” whilst attempting to poke said bad eye are proof enough that his emotional intelligence still needs a lot of work.

The big news though… one of our most significant victories ever has seen us (Rusty) finally seem to crack toilet training! Yippeeee! No exaggeration… this has taken almost two years of concerted effort and about eight months in a half-and-half limbo where sensory issues have definitely had an impact but, after a great many false starts and without too many dirty details, everything finally seems to be happening where it should (we are not mentioning a minor incident in the paddling pool… ūüė≠) and it’s a huge relief. Everything we do at the moment is geared towards making the start of school less stressful and ensuring he is not ‘the boy who still wears nappies‘ is so, so important. Just like hopefully having surgery on his umbilical hernia over the holidays, we want to remove as many barriers as possible so that he stands out a bit less – being ‘the boy who doesn’t talk properly’ is going to be a big enough label to carry around with him. Who knew poo could bring such joy?!

Interestingly, even toilet-related progress is inexorably linked to language development as this is the first time EVER that we have been able to use incentives (bribes) to make the experience positive for him. He now knows that “poo in the toilet”¬†leads to¬†“tap in garden” (the ultimate reward!) and regularly reminds us of the conditions of the deal! Public toilets have been a big hurdle up to now due to the omnipresence of the dreaded hand-dryers but, again, his verbal understanding is helping to alleviate the obvious stress of the situation as he repeatedly reminds himself “no hand dryer”.¬†Such a proud parent at the moment.

His speech almost has a life of its own and it really is the most fascinating organism to observe, especially from a language teacher’s point of view. There are a lot of times when the words seem to just fall out of him in his own unique style which is definitely more of a monologue than a traditional conversation. The scripting of his speech is at times brilliant but also frustrating when it does not quite work. This is difficult to explain, so an example:

  1. “Big green bus” ¬† That’s right darling, it’s a big green bus. “Very heavy” ¬† ¬†Yes, it’s very heavy. Great!
  2. ¬†“Blue door” ¬† Yes, there’s a blue door. “Very heavy” ¬† Hmm, ok, we’ll go with that.
  3. “Lots of rain” ¬† Yes, lots of rain. ¬† Can you see where this is going…? ¬† “Very heavy” Nooooo!

Having pushed him to speak for so long, I have decided to enjoy the humour of these moments rather than constantly correcting him because he is deriving so much satisfaction and enjoyment from his little soliloquies and it is all rather charming.

That will do for today. It is good to be back in the writing groove and I promise to be back soon, without the poo!

 

Branching out!

Hello my lovely readers,

As you may have noticed, posts are in short supply at the moment… it turns out that juggling the demands of a full-time job, a 7 month old baby and a slightly barmy 4 year old is actually quite time consuming – who knew?!

To that end, I’ve set up a little Facebook page to post more regular Rusty updates. 

Please follow us, share with your friends and, as always, let me know your thoughts – I do love a bit of feedback! 

Fret not, more posts will appear on here very soon, but just in case you were missing us! 

Lots of love, from the D clan xxx

https://facebook.com/maybehesjustlazy/?ref=bookmarks

The end of an era *sob*

Well, he has almost done it… Rusty is just a fortnight away from completing the very first stage of his education without causing any serious damage, without exclusion and without alienating (read: p***ing off) everyone we have come into contact with. Bravo kiddo! His forthcoming graduation from nursery comes after three very eventful years of birthday parties, endless washing of uniform and requests for costumes and cakes which have brought periods of worry and frustration along with a lot of amusement and the odd moment of euphoria. To say I am dreading this milestone is an understatement, there are going to be tears!

Amid the house-moving chaos of 2014, we actually happened upon the nursery completely by accident and, I’ll be honest, I was far from convinced that it would be a good fit for the boy. Ironically though, my fear that it all felt a bit too structured and school-y is precisely what has allowed Rusty to feel secure, learn to follow routines and make huge strides in terms of his academic and social development.

In spite of any initial misgivings, what we have had from the outset is the backing of staff who have never belittled our concerns. I will never forget my very first parent’s evening appointment just after Rusty’s second birthday when his Key Person asked if I had any concerns about him. On hearing my standard line of “I suspect he might be on the autism spectrum“, she did not tell me that “maybe he’s just lazy” but actually offered a chance to move forward in a constructive manner; by arranging assessments with the local SEN and Speech and Language support services and these people have seen us through so many highs and lows that they almost feel part of the family. 

What has at times felt like a never-ending cycle of meetings, care plans, assessments and form-filling has been made manageable by the compassion and professionalism of people who take pride in their work and who genuinely care. Rusty, for his part, has proved quite the charmer over the years and his happy nature and desire to learn have hopefully made him a bit easier to cope with! It definitely takes a certain type of person to work with young children, especially those with additional needs (heck, I couldn’t do it!) and I am full of admiration for these amazing professionals who have never faltered in their positivity. Especially during the tortuous first few months after the baby’s arrival when I was in the depths of despair, desperately worried about Rusty’s lack of progress, just seeing friendly and optimistic faces of his classroom staff on a daily basis made a huge impact. Most people decide to work in education because they want to improve the lives of children and those closely involved with Rusty have definitely done that. 

It has not all been plain sailing though and my natural passivity has been pushed at times as we have needed to assert ourselves to get the provision that Rusty needs (and deserves). There was utter despair and disbelief when the first application for High Needs funding (before his official diagnosis) was denied which proceeded to put all kinds of pressure on staff until the Local Authority eventually saw sense, thanks to the mountains of evidence. There have been some very dark days such as the infamous “it was nice to see him behaving like a NORMAL child” incident and we still encounter lots of disapproving looks and the odd comment from adults who do not have the time or inclination to understand that there might be a reason for some of his more unconventional behaviour. His original Teaching Assistant was also not what Rusty needed in terms of setting firm boundaries and pushing him to succeed which meant a certain amount of tactful pushiness was needed to get the right person in situ and, my goodness, did we get that.

There is no way we can adequately thank his current one-to-one worker for everything that she has done for him and his meteoric progress over the last six months is testament to that. It is due to her tenacity and perseverance (in the face of a sometimes challenging subject!) that Rusty has begun to talk, has achieved all the academic standards expected of a pre-school pupil and is now able to focus on teacher-led tasks for reasonable periods of time. In short, the fact that he is something like ready for school is in no small part down to this incredible support and her unwavering belief that there was potential to be unlocked.

However, the main goal of nursery was never academia (although it is a rather lovely bonus!) No, we needed Rusty to be socialised to within an inch of his life; to learn to deal with the noise and unpredictability of other children, to understand conventions such as turn-taking and to develop basic methods to interact with his peers. Despite the fact that he is very obviously following a different pathway to the others in his class, his social development has been a success. To see him attempting to join in with activities and even the beginnings of some communication feels like a really big deal. I have said it many times before but the real stars of this story are his classmates who have for the most part been kind, accepted that he needs to be treated slightly differently and learnt to appreciate his relatively small accomplishments. Almost daily I hear or see examples of this as children tell either me or their own parents things like:

“He doesn’t talk very much but we play together – he’s my friend.”

“He’s really good on the computer”

“He said my name today”

“We have to wait for him to talk, he is practising and takes a bit longer”

I have always hoped that in some small way Rusty could help his buddies as well, so they would grow up understanding that not everyone has the same strengths, weaknesses and interests and that is actually ok. In a world where disability is far more visible in day-to-day life (because people are not marginalised or hidden from view) and the education system seeks to be inclusive, it is nice to think that Rusty may have helped to normalise the concept of Special Needs for his friends. And I can’t not mention the proprietors of these little – The Parents! – who have, almost without exception, taken an interest in Rusty’s development, been understanding when things have not quite gone to plan and generally set a great example for their children. 

I often think that parenting a child with a disability is like living in a parallel universe to other families – while you go through the same fundamental experiences, those subtle challenges which govern normal life add up and it can feel like a very lonely existence at times. However, it can also be a privilege to inhabit this secret world because you can learn a vast amount, strive to make others appreciate diversity and meet genuinely wonderful people.

To everyone who has listened, encouraged and giggled with us through the last three years, a huge THANK YOU! 

Here’s to the next big adventure! 

Future proofing

It seems to be a rite of passage for every parent to develop¬†a complicated relationship with time. On the one hand, there is an all encompassing¬†urge to cling on to tiny babies, wishing those precious early days could last forever because never again will you feel¬†so important to anyone – the desire to be both provider and protector can be pretty overwhelming.¬†Unfortunately,¬†time has a nasty habit of galloping merrily by, stealing babies and replacing them with children who¬†become bigger and more independent by the day. Almost simultaneously though, you are wishing time away, the mind inevitably filled with¬†curiosity about what the coming weeks, months and years¬†will bring for that little being. When will they walk and talk? Will they be sporty or maybe artistic? What subjects will they love at school? University? Job? Wedding day? So much potential and everything to look forward to…¬†Poor old time, really can’t win.

With acknowledgement and diagnosis of Rusty’s autism, it felt like the dreams for his future were snatched away, replaced by doubt and fear of the unknown, as though¬†we had lost the right to imagine where life could take him. Melodramatic? Maybe, but not completely without cause and that cloud of uncertainty continues to lurk ominously in the background – oh to be one of those people who can embrace the moment and not get caught up in worry about consequences and repercussions…

I am an absolute sucker for those home makeover TV¬†programmes (actually watching one right now) and a couple of weeks ago, I dreamt that we had been nominated to have a house renovation (yay!) due to the fact that both our children were autistic(!) and would never be able to live independently. While I can hope that the boy develops and progresses in such a way that he can have a life away from us (for all our sakes!), that might never happen – current statistics state that over 40% of adults with ASD live their whole lives in the family home, with many more in residential care or assisted living facilities – not overly encouraging figures, let’s be honest.

The short term future is no less daunting and our first meeting to plan the transition to school was testament to that. For over two hours, nine of us sat around a table discussing what can be done to make the big move as painless as possible for Rusty but all the while acknowledging that this will basically be an exercise in damage limitation. It’s going to be bad, there is little doubt about that.

Academically, he is now ahead of the game – consistently recognising and producing (his approximation of) every phonic as well as counting and identifying numbers up to 50 – but the likelihood is that the change is going to cause some kind of regression. Now, it is a matter of pushing him forward as far as possible so that if – or when – he goes backwards, he is not behind the crowd. If we (he!) can pull this off, I will feel much more optimistic about his long term prospects.

Seeing him excel in school really does make his difficulties a whole lot harder to stomach, especially because this is sure to be a repeated pattern throughout his life (two steps forward, one step back… ) which will likely see him working twice as hard as anyone else to stay on track – it’s spectacularly unfair!

Rusty’s life over the last three years has been accompanied by a constant stream of targets for development and strategies to help them come to fruition, forcing us to look forward rather than dwell on the past. Many of these goals have been very modest which, depending on my mood at the time, makes them seem either achievable or demoralising. Having spent all this time coercing Rusty into some form of communication, the fact that he does now try to speak feels like a minor miracle. However, there is a huge BUT here (as usual)… Rusty’s language is just that; his own unique take on English which precisely three people can easily understand – myself, Daddy D and his Key Worker at nursery. At this time, there is nobody at his school who will comprehend when he speaks and I can not bear the thought of him trying unsuccessfully to get his point across. We have a lot of work to do to remove this particular barrier, for his and everyone else’s sake.

It feels like I am simultaneously inhabiting both ends of the scale of optimism at the moment. The joy of seeing Rusty’s progress over the last few months is enormous and makes many of the struggles seem worthwhile; it is wonderful to be able to talk about how well he is doing and so that is what I generally choose to do. Positivity is a powerful force, especially in our unique world, but seeing the good can only take you so far. The constant reminders about hurdles¬†he has yet to encounter bring me back to earth with a bump and I would give anything to solve those problems for him.

Yes, the autism is a huge part of his character and he would be completely different without it, but I would take it away in a heartbeat. I love my boy in spite of his autism (not because of it) and whatever that means for the coming weeks and months.

The great parenting conspiracy. 

Disclaimer: I love my children more than anything… most of the time… apart from coffee… and Easter eggs…

Question of the day:

Why is it nigh on impossible for parents to tell the truth, or rather, the WHOLE truth about life with young children? 

I’m a pretty honest person so why is it so hard to acknowledge that there are days when being part of the parental unit in our household is a complete and utter nightmare? Self-preservation perhaps, or fear of being branded ungrateful for the blessing of having children? Whatever the reason, those days that make me want to stick pins in my eyes seldom get a mention, either in real-life conversation or on social media. Like most 21st century mothers, I deal with the ‘challenges’ and then skilfully capture the idyllic moments on camera, ready to share with the world. Case in point: the gallery on my phone contains hundreds of photos of the baby looking adorable when, in reality, she spent almost the entire first three months of her life either screaming or vomiting. 

Talking to my own mother (who has been through the process three times) about this phenomenon, she simply laughed and said that parenthood has to be a great conspiracy, or life would cease to exist, which I thought was rather eloquent; for a doctor.

I read recently that parents of children with Special Educational Needs (which can encompass a huge range of medical problems) are twice as likely to develop depression- or anxiety-related mental health problems.  Considering the emotional turmoil that comes with diagnosis, treatment and the pressure of decision-making, this comes as no surprise at all. In amongst these more obvious triggers, however, must be the ‘bottling-up’ factor and the sense that we are failing our children by asking for help or feeling angry or resentful about their difficulties and the knock on effects for family life. As the well-known telecommunication company used to say: “It’s good to talk” but it’s also really hard to talk about s**t when you are up to your  elbows in it!

So, in these times of economic uncertainty and utterly bizarre politics, I am going to start a revolution and would love for others to join in.

Here are my Top 5 Ugly Truths of Parenting, the Autism Version:

1. Mealtimes are tortuous. A pretty banal one to begin with but a thrice-daily source of frustration that generally involve lures such as sensory toys and the iPad. Rusty in turn has a plethora of evasion techniques, including running off to perform head stands and engaging us in a medley of animal noises. How he has managed to grow into such a healthy beanpole is unbelievable really, considering we still have to spoonfeed him on a regular basis.

2.  There is no reason. This is twofold: You can not reason with a child with very limited language and it is therefore impossible to explain why we are doing things or why he is not allowed to do something. Furthermore, he can not express his own motivations, which could potentially allow us to make adaptations or remove obstacles. 

3. OCD sucks. However much I try to sugarcoat his obsessional habits as nuances or quirks, the fact is that some behaviours and the entrenched need to follow fixed routines can be very limiting. Prime example: The nursery term restarted last week after the Easter hiatus and the absence of a water table from his classroom sent Rusty into a complete tailspin. This is particularly frustrating because his academic performance is surpassing everyone’s expectations but the prospect of moving him to an entirely new school in the autumn is now even more daunting.

4. ‘Us’ time is a distant memory. Daddy D and I have not spent an evening together, away from the house, in almost three years. Apart from his time at nursery, Rusty is with one or other of us all the time. It is completely understandable – people are worried about being alone with him because they might not understand what he wants and nobody can else predict his behaviour well enough to foresee hazards. The local curry house is the main beneficiary in this scenario. 

5. The world is actually not our oyster. There are certain situations which we have learnt to avoid and others that we have never even attempted. The cinema seems like a complete impossibility for a child who can not sit still and such is his reliance on routine that we rarely spend nights away from home. These battles will have to be fought at some point but not yet.

I can’t do it, I can’t finish on a negative! This wonderful verse was brought to my attention a while ago and it beautifully captures my life at the moment.

In the words of the Manic Street Preachers: “This is my truth, tell me yours”

WELCOME TO HOLLAND

by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland

Looking back and bounding forward 

I’m struggling to know where to start here because such a lot has happened since my last post and, unusually, almost every change is positive for Rusty.

Family life is starting to bumble along quite nicely now that we have all gotten used to the noisy presence of the baby, nocturnal habits and all. Rusty is really very sweet with his little sister and, with the right prompting, he will hold her for a few seconds, stroke her hair and kiss her on the head. When he hears her stirring in her basket, he will say her name (or his approximation thereof) and guide one of us to comfort her and if he ever finds a stray blanket, she is covered in it, whether cold or not.  The little one, in turn, is absolutely fascinated by her big brother (as are we all) and will happily sit and watch him for great lengths of time, which gets her precisely nowhere in terms of human interaction – she will learn soon enough the way to his heart, I’m sure.

Inevitably, I am constantly comparing and contrasting the baby’s early development with what I remember of Rusty’s first few months and already, the differences between them are stark. The first thing that everyone notices is her eye contact; the way she continuously looks for a familiar face, seems to stare into your very soul and derives great pleasure from seeing different facial expressions, especially smiles. Then there is the fact that she is sociable almost to a fault and being on her own for even a minute or two can spark full-on hysterics – what I wouldn’t give to be able to use the bathroom alone! There are many other differences but these two in particular brought the realisation: I didn’t know babies were like this. Crazy as it seems, I genuinely believe that there were signs of autism in Rusty as early as 6 weeks of age and that brings a strange sense of relief. Although I have always believed that his condition is an innate part of him – not something which was caused by environmental factors or *shuddering* vaccinations – the fact that he had such a dramatic regression has always felt very relevant. It is strangely liberating to know that there is nothing we could have done to prevent the autism becoming a big part of his life, that it was only ever a matter of time.

In terms of our constant battle with bureaucracy, there was universal delight (and more than a few tears of relief) when the draft of his Education Health and Care plan arrived in the post a few weeks ago, finally giving us the peace of mind that he will be guaranteed a place at our chosen school and that he will get the right support once there. The plan stipulates that he must receive individual help when appropriate, adapted tasks to meet his various needs and a continuation of some of the methods which his nursery is using to great effect at the moment. As an educator, I slightly hate myself for this as I know damn well that it is going to create more work for his teacher and one-to-one assistant but, actually, every child should have the right to an appropriate education. Based on a vast amount of professional evidence, a panel of strangers has decided that he is entitled to this support and the Local Authority has coughed up funding for the school to aid him, so my guilt is mostly assuaged.

With the pang of guilt, however, comes the knowledge of how unbelievably lucky we have been. Yes, we have grafted to get this plan – completing forms, meetings, proof-reading reports, badgering busy professionals – but we are not in it alone and never have been. I was able to email a SENCO to go through the draft and make sure everything was as it should be and a meeting is in the offing to start organising the transition to school. There are so, so many children who need this kind of input at an early age to allow them to thrive but, sadly, it is not always forthcoming because not all will have parents who know which educational buzzwords to use when completing paperwork. They may not have easy access to medically-trained friends and family who can provide valuable advice and they may not attend nurseries with knowledgeable, proactive staff.  This is not meant as a criticism of the Special Educational Needs system because I don’t know what more those people could do to ease the pressure on families – the services are stretched almost to breaking point. More than anything, it makes me want to change career…

Right, it’s time for the BIG NEWS because something miraculous is happening:

HE HAS STARTED TO TALK!

It is almost as though a loose connection has been stabilised and the progress is staggering. He has discovered echolalia and is mimicking EVERYTHING when sufficiently motivated by a situation. This can be quite amusing when he says goodbye to himself (because we instruct him to “say bye bye, Rusty)  or parrots an instruction back to us. It has taken over two years for the advice of his speech therapist to “build on his interests… frustrate him into talking…” to come to fruition but quite frankly, we couldn’t care less. It is hard to explain the feeling of delight, disbelief and sheer relief at hearing him ask for “big bubbles, please” and saying “bye bye Mum” when prompted and he even says a few things spontaneously, WOW! There is still a ridiculously long way to go because he doesn’t really use any verbs and strings of three words seem to be his absolute limit but I would have given my right arm for this level of communication a few months ago. People who spend a lot of time with him are also falling to the role of interpreter because his words frequently don’t sound exactly as they should (for example, yeh-yee = yellow) which may be down to the fact that he does not look at people’s faces and therefore does not copy mouth shapes. This could take a very long time to rectify but at least we have something to work with. YAY!

Amazingly though, there is even more to it than only speech (can’t quite believe I’ve just written only speech!) because he is making genuine progress in terms of his academic development as well. I have written on more than one occasion of my concern that it is extraordinarily difficult to assess his intelligence due to the lack of output but those fears are starting to melt away because in the last couple of weeks I have witnessed the following, all of which are totally appropriate for his age:

  • counting to ten completely unaided and with mostly recognisable sounds. He also attempts to get to twenty, with the correct amount of words; the actual sounds need some work though. He also recognises the numbers when written.
  • consistently identifying more than twenty different phonic from both sounds and visuals – his memory is fantastic which bodes very well for the future.
  • Recognising and and naming different colours. By responding to “what colour is it?”, he is actually answering a question for the first time ever. Conversations next! 
  • Tracing his name whilst correctly intoning of the phonic sounds for each letter which, fortunately, he mastered just in time to sign Mother’s Day cards!

I really should thank (or maybe apologise to) everyone who is putting up with the updates on Rusty’s current progress but my pride knows no bounds at the moment – it is one thing to know that potential is there (that has been obvious for a long time) but quite another to tease it out into the open. 

Happy Autism Awareness Day from a very Happy Autism Mummy xxx