Autism Parenting Guilt #1: Meltdowns, fear and love

When I announced my pregnancy seven years ago, friends and relatives were quick to tell us about the sleepless nights we would have to endure, the poopy nappies we'd encounter, the always-with-us worry, the drain on our finances and other such delights awaiting us.  We shared jokes about smells, stains and extreme fatigue.  We were nervous and felt unready for what was to come, but eager to meet our boy.

When our son was born, he was our first and only; we had no other child to compare him to. Looking back, there were many small signs of his autism, even from an early age but at that time we had no way of knowing.  His repetitive behaviour, his extremely fussy eating, his slow speech development, his extreme physicality, were all put down to being a toddler, or a boy, or just quirks of nature.  We knew that something was off (too many clues to list here; I'll do a blog about the diagnosis process another day) but the health visitor, the doctor, our friends and relations all kept assuring us that he seemed fine.

Our first big clue that something was Definitely Not Right was when he grew out of toddler tantrums and then a few months later started having them again, with knobs on (we later learned these were different because they were autistic meltdowns ). Screaming, kicking, spitting, biting, clawing at our faces, pinching, hitting, hair pulling, head butting, we got the lot.  He would hit himself too, and throw things.  In addition to the meltdowns, it got to the point where he would attack for no apparent reason, almost as if he were conducting an experiment in cause and effect.  They were the darkest times, the hardest time to love him.  I tried to explain to him how upset it made us, how wrong it was to hurt people but he seemed untouched by our words.  He only really spoke to us when he wanted something, and escaped out of our cuddles, wiping off our kisses, not even looking us in the eye.

When your child does not appear to understand or feel love, that's when you feel the full weight of Autism Parenting Guilt.  You blame yourself for passing on faulty genes, for shouting too often, for lacking effective discipline, for being too smothering, for not spending enough time cuddling.  You blame yourself as a person and everything you did as a parent.  You feel helpless, unable to break through; you worry about your child's future, the sort of life he will have, the person he will become.

There is a happy ending to this.  Our boy grew out of the meltdowns as his speech developed. There was a gradual lessening of intensity and frequency.  He learned to endure cuddles and give out kisses.  Not often, but when they come they are treasured. He shows us love his way - by playing with us, dressing us up, including us in his make believe world.  We have relaxed into a new type of relationship.  It happened over time, with patience and understanding.  

Allow me to state the obvious: being the parent of an autistic child is not easy.  You have no idea the amount of work that goes into just getting through the day with the minimum amount of incident. Parents of autistic children face the prospect of "failing" to do it "right", ie like everyone else does it, every day, in every situation.  When you throw in the fundamental questions of character, such as Does My Child Love Me?, you enter a whole new sphere of self-doubt and pain.  We were lucky; our son had developed as he has grown older.  Some children never develop speech, or remain aggressive, whatever their parents or carers do.

So when you see a parent of an autistic child looking slightly glum, or frazzled at the edges, or they walk right past you without even noticing you, just remember that they are walking through the day carrying the inescapable burden of Autism Parenting Guilt.  Be kind, tell them they're doing a great job.  It will make their day, if not their week.

Kevin Healey's Global Autism Anti-Bullying Campaign

As the mother of a son with autism, I worry about how he is perceived and how he will be treated in the future.  He's nearly seven and reaching that age when the things he does can no longer be excused and put down to his youth.   This morning, for example, he was scooting to school and he decided to aim straight at a man coming towards us in the playground.  Despite the fact that there was plenty of room to steer round the gentleman, T did not stop, swerve or slow down - he was determined to stay on course.  The man was forced to stop and skip swiftly to one side as he realised that this small boy was going to win the game of playground chicken.  I apologised and called T back.  Yet again, we had to have the conversation about giving people space, respecting grown ups, not expecting people to move for you.  I threatened him with not being allowed to scoot if he did it again.  I asked him why he insisted on scooting right at that man, why he didn't go round him when there was loads of room.  His answer: "I forgot that rule".  

There are only so many times I can apologise for the things he says or does unthinkingly

He probably did forget.  He was probably so in the moment that all he could think about was heading straight to his destination.  He probably assumed that as he is the most important person in the world, the man would know that he should move out of T's way.  I know this is due to his autism but nobody else would know, just by looking at him.  It's this sort of thing that can get you into trouble.  It was only a minor incident, but were he a few years older, perhaps the man would have been annoyed or said something.  As he gets older, there are only so many times I can apologise for the things he says and does unthinkingly, or in a moment of anxiety or frustration.

His innocence and literal thinking could make him an easy target 

In a few short years he will be moving up to secondary school and will find himself among children who don't know him from his primary school.  His innocence and literal thinking could make him an easy target for bullying and getting him into trouble.  His frustration and inability to understand, socialise easily or keep up with lessons could lead to a short temper and a tendency to lash out, never mind the additional stress and effects of the dreaded teenage hormones.

I won't be there to speak up for him, to explain what he's feeling or what he really means.  I won't be able to interpet the world for him or warn people that something is going on outside of school that may affect his behaviour.

Trolls in your Home 

In this world of social media, the bullying can even intrude into your home life.  What about when he has a mobile phone, when he goes online onto chat rooms or websites?  We're all aware of trolls and the cruel things they can say.  I don't want him to face a barrage of spiteful comments in his own home.

What Can I Do?

There is so little I will be able to do as he grows up.  There is one thing I can do now - I can spread awareness of the dreadful bullying that exists in the lives of vulnerable people, including those with autism.  I can ask you to watch the video and consider joining the campaign.   Kevin Healey will explain it far better than I can.  Together, we can work towards changing the law to protect our special children.

For some strange reason I can't find it on the Youtube search using this blog and I can't upload the video from my computer but you can find links to the video below:

On Vimeo at: http://vimeocom/64831028

On Youtube at: http://www.youtube.com/watch?feature=player_embedded&v=-EMwze_AIoo

Both links are safe; I have viewed them and Norton did not show up any problems.

Thank you.

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For another perspective on parenting a child with autism, please take a look at the work of JM Worgan on http://glipho.com/jmworgan   She has a lovely way with words!

Introducing "Mr Bread"

This is a picture of my son's sandwich for his packed lunch this morning.  It's created using a toast stamp, which I press into the sandwich on both sides and then cut out. Don't worry, he eats the crusts too, he just likes the smiley face to be separate from the plebian crusts.

In T's autistic world, the things he loves most are honoured with names.  Therefore, every sandwich made with this smiling stamp toast bears the monicker "Mr Bread".  In between making "Mr Bread", I mix it up a bit  with a star, upper class triangles and proley old squares.  None of the other shapes are quite so good as Mr Bread and do not deserve names.

One of the ways T's autism manifests is by being extremely sensitive to noise, lights, touch, smell and taste.  This makes getting him to eat a varied range of foods impossible; whilst he breast fed tolerably well and weaned with great success onto a textbook range of foods, from about 12 months he started to refuse almost all the food he had previously eaten.  It goes beyond fussy eating into the realms of hunger strike: if he didn't know it, or it smelled wrong, or it felt wrong in his mouth, he would rather starve all day than eat. This is still true today and we have learned that he simply cannot bear the "wrong" food. Temperature is also an issue (food can be too warm or too cold), as is texture.  Do not, I repeat, do not try to get T to eat anything "slimy", wobbly or runny.

There is not the time today to list the foods he will not eat, or what he sometimes eats when the mood overcomes him, or what he eats constantly then goes off suddenly and without warning.  Needless to say, he eats a small range of food regularly and the rest is left to me to divine through the ether.

We don't sweat it.  One thing I've learned is that the easiest way to stop him eating is to insist that he does.  He takes supplements and occasionally tries something new, just to check if we're still keeping the case file open.  Trying does not mean adopting, another thing we have learned.  But trying is good, so we celebrate with flags and small dances when he at least tries something.

In reception, T ate honey sandwiches every day for a year.  We tried school dinners, naively hoping that peer pressure would encourage "proper eating" but that was before we fully understood the sensory overload he has to deal with at mealtimes.  In Year 1, he changed to jam sandwiches for one semester and then swapped to chocolate spread.
There was a brief flirtation with beef spread and tuna spread but he realised this was setting a dangerous precedent, so that was quickly put to bed before we got too excited.

This year, Year 2, chocolate is still king.  I slip in pork pies, sausage rolls and scotch eggs, to keep things savoury and encourage a bit of protein into his system, but sandwiches are strictly chocolate.  It looks like Mr Bread, the chocolate smiley face, will be with us for a little bit longer.

Easy Like Tuesday Morning

Today has been okay.  I know that’s not very exciting but it’s true, and I’m very grateful for the lack of excitement and incident.

Today T got out of bed without arguing and he ate his breakfast without covering himself with milk and cereal, and without falling off his chair because he was rocking from side to side (stimming).  Last time he fell off his chair because he was rocking from side to side, the bowl went with him and we had Strawberry Squares all over the kitchen floor and his chair.

He ate his breakfast relatively quickly and we ticked his progress off on his visual “morning routine” tickchart.  We also looked at his weekly activity chart and when I showed him that there would be homework this evening, he did not complain or get upset.

We did the usual ablutions without fuss and he allowed me to dress him quickly instead of doing his usual interpretation of a pogoing octopus, whereby I aim his clothes at his arms and legs and hope that a limb will find the requisite hole before the school day begins.  Once he was dressed, he agreed to go downstairs and before I knew it, we were out the door and headed for school.  No cries of “fifteen more minutes!” or worrying that his toys would miss him.

He managed to cross the road on his scooter without being run over and scooted to school without cutting up any pedestrians, ramming anyone in the back of the legs or encountering any scary dogs, which can cause him to swerve into the busy road if preventative action is not taken swiftly.

This evening has passed pleasantly, with T eating all his evening meal.  Well, I say meal but it was simply an entire garlic baguette, served in slices.  However, he ate it all and there was only a smattering of crumbs on the floor, so it’s a win in my opinion.  (T does not like to mix food types and prefers to eat with his hands so he can dance to his Wiggles DVDs in between bites.)

When called downstairs to do his homework, I only had to insist firmly once that he stop making towers out of his Unifix counting blocks and concentrate on the actual homework.  He did all his maths questions quickly and seemed genuinely excited to get the answers.  Maths comes hard because it is an abstract concept but the Unifix blocks and the laminated number lines that I have made him seem to be helping.

He did his reading quickly and read well.  Now he’s upstairs playing again.

I can’t get over how easy today has been.  I have no idea why he is happier and more amenable today, but I’m taking this blessing and running with it.  I know there will be plenty of those other days - the angry days, the defiant days, the confused days, the silly and provocative days, the anxious days.  It’s amazing how our lives are dictated by the emotions of one small boy.  If he’s willing to play ball then we all have a good day.  If he’s feeling stressed, tired or anxious or any combination thereof, then we all know about it.  On those days even the simplest task can be inconceivably trying.  And unbelievably tiring.  And soul-sapping.

So I’ll take our easy, pleasant day and treasure it.  I’m documenting it now so that I can look back and remember when the times are hard and I’m in danger of forgetting what “easy” feels like.  Days like these deserve to be remembered.  We just did the day, simple as that.  And T was happy and content; that’s the best bit of all.

The calm before the storm

Well that’s the Easter holidays over then.   Thanks to a family-wide spell of illness, our boy has spent two weeks lounging in his pyjamas, watching DVDs in his room and playing Club Penguin on the laptop.  He loves dressing his penguin, making it dance, playing games and decking out his igloo.  I think it gives him a sense of deep satisfaction to be in control of his own world.  I suspect he feels that ours is out of control, with all its noise, speed, unpredictability and Other People.

This brings me to the subject of my first post – school.  I am not looking forward to the return to school.  On the one hand it has given T the chance to make some good friends.  He enjoys learning and often surprises me with random factoids.  (He told me yesterday that adult crocodiles could grow to a size of 7 metres, but I believe he got this little gem from one of his Wiggles DVDs, rather than school.)  He loves PE, and just try getting him out of the playground at the end of the day…….

On the other hand, there is the noise and being forced into close proximity to others.  There are the long gaps between learning called playtime.  For T, these are just unstructured periods of time where other children barge about and play games that he cannot follow.

  

Then there's writing.  He hates writing because he struggles with it.  His method of letter and number formation more closely resembles shorthand or some sort of oriental script than the lettering and numerals we use in the west.  With writing comes homework.  I have strong views about tired, small children having to do homework after a full day at school.  Add a learning disability or special needs into the mix, and you have a surefire recipe for stress and frustration.  We don’t talk about the Dinosaur Project Fiasco.  That’s a story for another day.

So it’s no surprise, then, that I am regarding the return to school with trepidation and some heaviness of heart.  I know he needs to go; he needs to learn, socialise (and learn how to socialise), and it helps build routine and normality into our lives.  But I want those laughs and smiles to stay, not the frowns and anxiety and the arguments that come from tension and weariness.  I just want him to stay carefree and happy.