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

FAQ

It has been brought to my attention that this blog is becoming something of an epic and, bearing in mind that new people are visiting all the time (welcome along!) it might be handy to summarise the key points of our experience thus far.

Here we go then, the 14 most Frequently Asked Questions of the last 3 years… with thanks to lots of people who have contributed ideas:

1. So he has autism, what does that actually mean?

The National Autistic Society defines autism as ‘…a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them’  which sums it up quite nicely.

I also found this rather nice, kid-friendly explanation which might come in handy in the future: (ref: http://kidshealth.org/en/kids/autism.html)

‘Autism is a brain problem that can make it hard for kids to communicate. … they may have trouble learning the meaning of words; do the same thing over and over again; move their arms or body in a certain way; have trouble adjusting to changes’

2. When did you realise that something was ‘wrong’? (always with the universal finger signal for inverted commas, haha!)

When he was 16 months old, I had a EUREKA moment, mostly based on the fact that his babbling baby speech had all but disappeared. There is more detail about this in my very first post, if you’re feeling brave!

3. Did it take long to get a diagnosis?

We were lucky (and very pushy). 20 months from the first conversation to getting a formal diagnosis on paper is very fast in this country, where families can struggle for years to get a label (with all its negative connotations) in order to access support services and open lines of communication.

4. When was he diagnosed and by whom?

28th October 2015. Nine days after his third birthday; this date will be forever etched in my memory.  The formal diagnosis came from a paediatrician who specialises in neurodisability, following assessments by a plethora of other professionals, including a health visitor, GP, speech therapist and two SENCOs.

It is worth noting here that ours is by no means a typical scenario. If you search the internet for How is autism diagnosed? (which I may have done on one or two occasions…) it will tell you that assessment generally consists of a panel of professionals who watch a child as they play and carry out tasks. They then discuss their observations and decide whether they fit the profile for an ASD diagnosis. From talking to parents who have gone through this process, it sounds quite traumatic for them, although the children are generally completely oblivious; small mercies!

I have never been brave enough to ask whether the fact that our paediatrician was willing to diagnose at such a young age, without on-the-spot collaboration, is indicative of how serious his symptoms were at that age. It is easier to believe that he simply demonstrated such textbook autistic behaviours that there was no point in beating around the bush and wasting valuable resources.

5. Why doesn’t he talk?

When this question comes from other children – which it frequently does – we usually answer that he doesn’t like talking or that he is still learning (neither of which are untrue).

When adults ask, they tend to be met with slightly hysterical laughter because, to put it bluntly, we haven’t got a clue! The medical theory behind neurological pathways is so far beyond my dodgy GCSE science understanding that I have to content myself with the idea that certain parts of his brain do not link up properly. Words come and go from his vocabulary at an alarming rate and, in spite of the fact that any speech has gratifying results (mostly food!), he still seems not to see the point in communicating. ARGH!

6. How severe is his autism?

Such a difficult one to answer because the condition is so complex. His developmental delays are severe in almost every area. Last week’s assessment by a fab Educational Psychologist came up with the following conclusions: (bearing in mind that his chronological age is 51 months)

Physical: 30-50 months. Woohoo! Hours of running around and inflicting my love of sport are starting to pay off and, my word, he is FAST!

Thinking: 16-28 months. By the admission of everyone involved with Rusty, this is an extremely difficult area to assess because his lack of engagement with activities or speech mean that he can not always demonstrate what he thinks or understands. I do not envy the educational establishments who are going to have to track his attainment and progress in the coming years!

Personal, social and emotional development: 14-22 months. Oh dear…

Communication: 8-20 months. The less said about this one, the better – it’s a work in progress!

However, it’s not all bad. As I have said on many, many occasions, he is a happy little boy who almost never exhibits the aggression and frustration that tends to be associated with severe autism. People who meet him for the first time often exclaim “but he isn’t naughty” which is generally true, although he does have his moments and the fact that he is smiley, cheeky and actually quite affectionate (in his own unique way) means that he gets away with blue murder!

7. Will he improve and will he ever talk?

We can hope. The signs are positive because every so often he will develop a new skill or involve himself properly in some social situation but there is such a long way to go. The possibility of further developmental regressions and knowing he will have to cope with major changes make the future a terrifying prospect.

8. But he seems clever… does he have any special skills?

You have to laugh at how accurate stereotypes can be at times: At the age of four, Rusty has developed rather a talent for technology! He is able to navigate any computer, phone or tablet with ease and has memorised the passcodes for all those we own – nothing is sacred any more! He is also rather adept at lining things up and building towers which will obviously serve him well in the future(!)

9. Does he struggle with change? 

Yes. Changing the pillow case on his bed can cause him upset, so you can imagine why we are a more than a bit concerned about how he will react to starting school.

10. How has he adjusted to having a baby sister?

(*Deep intake of breath*) Honestly, it has been incredibly hard on him and there have been moments of absolute despair and overwhelming guilt; feeling like we may have done serious damage to his emotional well-being by inflicting such a huge change on him.

But… he is an amazing little boy and I could not be prouder of how far he has come in the last two months. Seeing him wanting to hold the baby, giving her a kiss (when instructed, we are not at the spontaneous affection stage yet!) and understanding that we need to look after her when she cries, is truly heartwarming.

11. Will his baby sister be autistic as well?

On paper, the odds are pretty brutal. Current statistics say that 1/88 people is diagnosed with ASD but the likelihood of siblings having the same condition is increased to 1/5.

The baby is only 2 months old but I’d be lying if I said that we are not thinking about the possibility – not surprising, considering how all-encompassing Rusty’s difficulties are for us as a family. The early signs for little sister seem to be positive though as she makes amazing eye contact and is so far hitting the developmental milestones. I could not say how she compares to the boy at this age because his first few months passed in a complete blur of learning how to be parents. I remember him as a happy, engaging baby who slept amazingly (his sister could learn a thing or two here!) but at a comparable age, I definitely was not looking for possible red flags for autism. What I do remember was how fidgety he always was – not a cuddly baby by any means – and I vaguely recall it being difficult to get him to look at us to take photos. With the benefit of hindsight, these could have been very early signs but, strange as it sounds, I’m pleased that we did not pick up on them as that could really have impacted on our enjoyment of his early months.

12. Do you get any help?

Help comes in many different forms:

Having waded through a 75-page application form, we now receive financial help from the government in the form of DLA (Disability Living Allowance) so that we can provide for his needs and invest in his future. After a gruelling application process, his nursery also receives funding to give him one-to-one support almost full time which has been invaluable.

Professional help comes from many agencies and I can never thank those people enough for their expertise and support since we started this process – it really has been an education for us all.

What often gets underestimated though is the help that sits quietly in the background. Those people who listen to me when I am angry, sad or simply bouncing ideas around. Having a support network is vital for any parent and when you have particular needs or difficulties to deal with, it becomes priceless.

13. Does he have any friends?

I have learned a great deal about people over the last few years. On the one hand, I often feel anger or dismay at the lack of understanding, unwillingness to accept difference and open prejudice that still exists in our society but then there are the children, who give me hope. Every time a child shows kindness or friendship towards Rusty – by involving him in a game, being excited when he ‘speaks’ or simply holding his hand – there is a lump in my throat because they still accept him unconditionally. At some point they will begin to expect more interaction in return but we will deal with that when the time comes. For the moment, I can say that yes, he definitely does have friends.

14. Is it hard for you, as parents?

Final question because it’s the most difficult.

I will never forget the first time I held my baby boy in my arms when, amongst the shock, and pain, time seemed to stand still for a moment. Right then, I came to the awesome and truly terrifying realisation that I would do ANYTHING to protect that tiny little person. If possible, that desire to protect has gotten even stronger over the years, combined with the knowledge that we also have to teach him and push his boundaries almost to the limit so that he develops, but without damaging his innate trust of the world.

So yes, it is hard. Parenting is hard, full stop.

 

Rocking’ and rollin’ 

Wowzer, what a month. The boat that is the D household was well and truly rocked by the arrival of Rusty’s baby sister at the end of November and things have been somewhat fraught ever since. Throwing a newborn baby into the autistic mixing pot always had the potential to create fireworks but we had no way of predicting how the boy would react to the new addition, mostly because it was impossible to forewarn him in a way he could understand. 

Many people have noted how well Rusty seems to have coped as he is gentle(ish) with the baby, he tries to ‘help’ with things like nappy changes and is generally pretty calm, getting on with things in his own funny way. He even has a word for her name, which is very sweet. However, there have been some big bumps in the road, not surprisingly. To begin with, he was visibly upset by the baby’s crying, which made him very anxious and erratic. Any changes to routine during the first couple of weeks did not go well either. Granny collecting him from nursery for an afternoon in SOFT PLAY HELL was enough to spark a proper meltdown and evening of complete withdrawal from the real world. Likewise, my attempts to take him to bed (which is more fun when Daddy does it) were not successful and resulted in lots of frustrated noises, silent crying and physically ejecting me from his room – at one point on Boxing Day he was on the verge of hysteria which was ghastly. 

The worst thing though is not the naughtiness or unpredictability but the fact that you can see the effort it is costing him to participate in our new family life. When I watch him taking comfort from things like lining up all the circles from his set of wooden shapes, there is some relief that he has developed coping mechanisms but sadness that it is necessary and that he can’t get his support from a conversation or other people. There is also a massive feeling of guilt here because we have created this upset and broken the status quo which was so valuable to him – the phrase “it’ll be good for him in the long run” is fast becoming a mantra Chez D! 

One thing that I had really not banked on, though, was the huge impact of the C word… CHRISTMAS could not have come at a worse time! Once again, we were attuned to the potential difficulties of the festive season for Rusty and tried to plan accordingly. With changes to routine, swathes of visitors (who we love dearly!), new objects littering the house and the constant assault on the senses from lights, noise and smells, there are hazards everywhere! On the face of it, Rusty has actually managed the festive season well but I hate that we have to be prepared for things like decorations, music and bearded men dressed in red to cause him grief. Berating him for once again removing baubles from the Christmas tree also put me on the receiving end of some aggression – a push in the face – for the first time ever. The resulting confusion and upset (from both of us) is something I hope is never repeated. 

The highlight of December was that he actually participated in the nursery nativity performance. Ok, he had a personal assistant to make sure nothing untoward occurred and he did not exactly sing the carols with the others but he wore a costume, stood on stage with his class and did not freak out when faced with a hall full of people, lights being turned on and off and sudden, very enthusiastic applause. We’ll take that as a victory. 

Christmas Day itself was a bit of a nightmare, to be honest; getting off to a bad start when he didn’t like unpacking his stocking and wanted everything to be replaced! We have finally ‘taught’ him how to open presents and although he undoubtedly enjoys the process, he was still more interested in cleaning the lounge windows than exploring new toys, with just a  couple of presents piquing his interest. The baby was also having a particularly screamy day and due to the culinary demands of Christmas, Daddy D spent a lot of time in the kitchen, when what we really needed was quiet time as a family group. We can learn from this though and hopefully make some adaptations so that he is actually able to enjoy the big day – less is definitely more in this case. 

Away from the BIG events, planning for the boy’s primary schooling has reached an important stage – we have decided where to apply and the County Council has agreed to assess him for an Education Health and Care Plan which will hopefully set out the provision which he will need, in order to thrive. Now we play the waiting game to hope that our application is successful and get on with the rest of our lives. 

Some semblance of order is slowly returning though and the boy is undoubtedly happier. Pockets of time when the baby sleeps are becoming very important as Mummy-son time and cuddling up on the sofa to watch tv has never felt like a better use of time. 

Wakeful night times have given me lots of opportunities to contemplate our lot over the last few week and I suppose the fact that this post has even been written is a sign that things are calming down a bit – it’s far easier to analyse the damage when the storm has passed. 

Happy New Year one and all, I hope that 2017 brings you health and happiness xxx

Ch-ch-ch-ch-changes

The world is slowly coming to terms with the shock result of the US election and the prospect of four years of Trump-ism, topping off what has been a strange year in general. As a linguist and lover of other countries and cultures, the implications of the EU referendum in the summer shook me to my core and, whilst in real terms, these huge global events probably mean  very little for the immediate future of children of Rusty’s age, they do raise a whole load of questions about the mentality of the majority. As inhabitants of highly developed countries which proclaim values of acceptance, the fact that elitism and racism have become prevalent on the political agenda feels like a frightening regression to the past and it’s easy to see why many are drawing parallels with the ideals of Nazi-ism and the search for perfection or greatness. Were I in a negative frame of mind, I could spout my fears of a repeat of Aktion T4, Hitler’s horrifying programme of involuntary euthanasia which resulted in the deaths  of tens of thousands of children suffering from some form of physical or mental disability…

But, this is 2016 and the world has moved on, thankfully. While I have no doubt that Rusty is going to encounter negative attitudes and differing degrees of discrimination throughout his life, there are too many people who love and understand him to let the haters get in the way of his progress and happiness. Nine of his most ardent supporters were gathered last week, in our termly meeting to review his progress and establish aims for the coming months. Over the last two years these meetings have developed a lot, in that we have moved from cliches and stereotyping to a sense that these people really do get him and treat us with respect and honesty, even if that can feel demoralising. Speech and communication, as always, is his main area for development but along with the discussion of practical strategies for  promoting these, there is an unspoken understanding that his progress is extremely slow, that he might take a very long time to speak (if he ever deigns to do so!) and that is alright, because we are all on his side and will endeavour to make the world understand him.

The pre-baby period of maternity leave has given me the opportunity to feel like a proper mummy with no conflict between home- and work-life and the chance to spend extra time with my boy, before he becomes a big brother. Mostly this has been really lovely but, as is so often the case with real life, there have been a few stumbling blocks along the way. There is something about this time of year that seems to affect autism sufferers negatively. The transition from summer to autumn/winter and resulting change in weather, nature and periods of light and dark is something that many find difficult to understand or adapt to. While I couldn’t say that Rusty has been obviously upset by the changes to his surroundings, they have definitely had an impact on him.

Take the darkness, for example. Since this time last year, I had forgotten about the boy’s dislike of artificial lighting in the house and the battle of wills that then ensues every morning as I attempt to keep a solitary room illuminated before we leave for nursery. I had wondered whether this was a not liking change thing and if he would tolerate light if that was how he found the room but NOOOOO! Thankfully the clock change means a slightly earlier sunrise and so I am not making coffee and toast in complete darkness every day – confrontation averted for the moment.

The parental responsibilities are stacking up in terms of planning for his future. Primary school visits have been made and applications are in the pipeline which is a source of great anxiety to us all; purely for the reason that we are desperate to get it right, first time. In preparation, I have begun the application process for an Education Health and Care (EHC) Plan which, if successful, will be very valuable in getting support for him over the coming years, not least because we will essentially have first choice over school places – I realise this could make us extremely unpopular among other parents as we will jump to the top of the priority list, irrespective of catchment areas or any other considerations but, actually, I can live with that.

The implications of these choices are enormous and I am already dreaming about his start date in September and whether he will adapt to completely new surroundings, people, routines and expectations. This is one of the few occasions when I just want to wrap him up and hide away from the real world to protect him from potential harm – what if he can’t communicate what he wants or needs? What if nobody is able to calm him down when he has a ‘funny few minutes‘?  What if the other children  take one look at him, or try to speak to him, and give up on him as a potential friend? It’s thinking like this that makes me realise how lucky we have been with his little buddies so far. Children who he has grown up with are undoubtedly aware that he is different but he has been treated with some childish curiosity – Why doesn’t he talk? – and a lot of kindness. They involve him in their games (which often includes bossing him around) and acknowledge when he does something new or unexpected – it is enough to give you that warm, fuzzy feeling.

My final thought for the moment is one of both sadness and gratitude. A couple of weeks ago we suddenly and completely unexpectedly lost a very close friend, meaning that two young children will now have to grow up with only the memory of a mother. That alone is enough to make me hold Rusty a little bit tighter, to be a bit more patient and to thank my lucky stars for everything that we have, especially the chance to be mummy to my crazy little boy.

 

 

On the controversial subject of Peppa Pig

This is going to be a quick post but one which I need to write to release a bit of pent-up anger. 

Many of you will have seen the article to which I am going to refer, which I picked up here:

Do not let your children watch Peppa Pig – psychologists warn parents

If you haven’t already, please have a look and let me know your thoughts – after several readings I still feel like it has to be a joke and yet the reaction of social media says otherwise. Seeing this shared online with comments such as: “Suspected this for ages but good to have it confirmed” makes me worried for the future of common sense. The phrase appealing to the lowest common denominator comes the mind, rather as it did in the heat of the Brexit debate. 

But I digress…

First things first. Since when were inappropriate behaviour, rudeness, intolerance, a lack of respect and over-competitiveness the main traits of autism? No mention here of the fact that Peppa is actually quite sociable, talkative and understands both social conventions and humour. 

I am not telling anyone how to parent. If you feel that this programme doesn’t model the behaviour you want for your child, then that is absolutely fine by me. Personally, I have an aversion to Teletubbies because they don’t speak properly but this happens to be a particular favourite for the boy and I don’t fight it because the predictability is thought to be comforting for some children. 

In the last 3 years, I have seen articles linking the prevalence of autism on anything from levels of radioactivity in an area to a diet lacking in iron. This obsession with assigning blame to environmental and controllable factors is not only unhelpful but also really quite offensive. It’s like the MMR debate all over again. 

Maybe I’m approaching this all wrong though. Wouldn’t it be lovely if a cartoon could actually cause significant developmental delays and neurological disorders and, therefore, these could be easily avoided? 

As parents, Daddy D and I have spent many hours discussing and torturing ourselves over what we may have done to make Rusty’s symptoms worse over the years and looking for traits which we have passed on to him – we do not need any help in feeling guilt or blame. One thing we have always known though, is that we did not CAUSE his autism, any more than Peppa Pig did. 

Oh and by the way, Rusty doesn’t actually like Peppa. 

In the eye of the storm?

I started to write this entry nearly three weeks ago and couldn’t bring myself to finish because we were in a bit of a rough patch with the boy and it was all a bit demoralising. Time seems to be running away at the moment – I finish work for maternity leave this week and Rusty’s fourth birthday is in just a few days time – and, thankfully, things have settled down a lot. For the sake of honesty though, this is how it felt at the start of the month:

Something was brewing… hard to pinpoint the exact cause but there was a definite tension in the air surrounding the boy, which made everything feel close and uncomfortable. Perhaps it was the fact that he seemed to be changing, and not in a wholly good way. Those stereotypically autistic behaviours that he had managed to keep under wraps were starting to surface; he had begun more regularly to flap, spin, make strange noises and he was becoming extremely difficult to engage in meaningful activities. Rather like he was going through some ASD-fuelled version of puberty! To put it crudely, he was just looking more autistic, almost by the day.

But that wasn’t all. Having had a few weeks to settle into the new term, we became acutely aware that things were not as they should be at nursery. Niggling doubts that Rusty wasn’t being encouraged and challenged to behave like all the other children were growing and a catalogue of promises of actions had not been kept. 

What has happened then, to make things feel less tempestuous? For a start, major progress with nursery. They have acknowledged and taken responsibility for a fairly lackadaisical approach to incorporating him in their planning, which is a fundamental reason for him receiving one-to-one support – the last thing we want is for him to be singled out any more than absolutely necessary. Fingers crossed, we have turned a corner here but it is frustrating that we had to become pushy (potentially very unpopular) parents for it to happen. I suspect this will be a repeated pattern throughout his school life and beyond, unfortunately. 

In terms of the boy himself, he has simply gone back to being his ‘normal’ self and the frustrations seem to have lessened, almost disappeared. The whole looking autistic thing is undeniable though and still not sure how to feel about that. 

Last year, I made three wishes on Rusty’s birthday so how have things progressed in that time? 

Wish 1 – Honesty: it only took a further nine days to get a diagnosis on paper, which was a big breakthrough and we have come a long way in terms of people being able to speak freely about his strengths and weaknesses. It’s still really hard at times to know how honest we can actually be. Should I explain that he has autism every time he wants to play with a door rather than participate in an activity or whenever he fails to respond to someone talking to him? 

Wish 2 – More conventional eating habits: We have discovered that Rusty is an angel child at nursery feeding time which is both hilarious and also slightly annoying because he is still a pain in the backside at home! Let’s be honest though, if he is going to behave in one setting, I’d much rather it be at school and deal with the naughtiness at home. 

Wish 3 – Speech: To be brutally honest, not much has changed here which is sad and frustrating beyond belief. This feels so important as we are contemplating his educational future that I am clinging on to the hope that he will get his act together fairly soon. However, what he proves every day is that there are other ways to interact than by speech or sign and, as long as there are people who understand his particular brand of communication, then there is hope. 

So things are calmer at the moment and but having experienced a stormy patch for no obvious reason makes me wonder what normal is really going to mean for us in the long run. I love to believe that the happy, cheeky little boy I have spent this weekend with is the Real Rusty (including the bits which drive me up the wall) because it’s hard not to be proud when he will happily sit down and actually copy written letters, seeming to link them to sounds. Likewise that he can cope with and, on some level, enjoy the noise and unpredictability of a birthday party without needing to play with taps or doors to calm down. 

Let’s face facts, we have had nearly four years of worrying, analysing and trying to predict the future and that is not going to change over night. For now, I’ll be content with wishing my lovely boy a very Happy 4th Birthday. Who knows what adventures the next year will bring!