It’s time to speak up…

Supporting a child with additional needs can be a battle as well as a joy.  Parents have to negotiate with educational services, healthcare services and the general public who often lack awareness and empathy.  I tell the story of my son and I, highlighting both the challenges that we have faced and the successes we have enjoyed, from pre-diagnosis to the present.

The aim of my talk is to improve relationships and increase understanding between parents and the professionals they encounter.  I hope to reach others with my blog.

It is only by educating ourselves that we can ensure that children achieve their full potential and are not hampered or vilified by our lack of understanding.

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Goodbye

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Dear Friend,

I’m sending you this postcard because I’m really missing you when you leave for your new home.

In fact, I’m already missing you.  I hope you have a good time in your new home and school.

Hope you like this and the Pencil I’ve given you (It’s scented!)

Love…

Resourceful

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… when he is desperate to get on with his lego but someone has left a cup and straw on the table which makes him retch and panic and he can’t touch it or move past it so must cover it up and then thank goodness he can no longer see it so hopes in time that he will forget that it is there …

Bird of Paradise

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She walks past our house but doesn’t look over.  He is pleased to see her and follows at a short distance, not wanting to interrupt her conversation with two friends.  She heads to the park to kill some time on the swings.  He pauses, in plain view, carefully placing his PE bag on the grass and pretending to search his pockets for something.  Nothing happens.  A minute passes.  He picks up his bag and shuffles on, breaking his routine once again to enter the enclosed area nearby.  He wanders around, feigning interest in his surroundings, placing his bag carefully on top of the equipment and picking it up again, pretending to look for something, wanting to look as if he has a purpose while casting furtive glances in her direction.  Surely it must be that she simply hasn’t noticed him.  She is his friend.  She stuck up for him when he made a mistake.  She just needs to notice.  

Over to the trim trail, balancing on the slippery logs, a job well done.  Back to the bag which warrants further inspection.  She still hasn’t spotted him. Must try harder.  He climbs to the top of a log building and turns his body, but not his eyes, towards her, displaying his fabulousness like a beautiful bird, impossible to ignore.

She is stuck.  Time is ticking on and she is going to be late.  She sends out a friend to walk past and see if that lures him away.  It doesn’t work.  Eyeballs glued to their phones, the three friends strike out together, moving slowly, deliberately.

He sees them coming and, with panicked haste, clambers back down to the ground.  He grabs his bag and runs all the way to school.

I wish he would talk to me about it.  I wish I could reassure him that she is still his friend but that this morning simply wanted different company.  I wish that our daily chats about friendships made things easier for him.  I wish I had not spied on him.

Trainset

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Last night I rearranged my kitchen.  Not drastically but I’ve had a chuck out and put a few things in different places.  My son and his father had gone on a long journey to watch a football match and my daughter was sitting wide-eyed in front of the television. I seized the moment – there have not been many in this long summer holiday.

They returned at 10pm.  At 10.10pm I walked back into the kitchen to find that each item and appliance that had been moved had been returned to it’s previous location.  Nothing had been said, nothing needed to be said, the kitchen had simply been corrected.

When my boy was 4 and I was still struggling with toilet training him, I decided that the incentive should be something for his wooden trainset.  Success was measured by stickers on a laminated reward chart with the photograph of the reward velcroed onto the bottom right hand corner.  We started ambitiously with a £13 ‘train washer’.  Before long I realised that my carer’s allowance was not going to accommodate such lavish recompense and we switched to interesting-looking junctions and then, eventually, individual pieces of track.  It can take a long time to train a non-verbal child as you must first establish cues and try to explain why it is a necessary change. Change… my son’s most formidable enemy.

Before long the trainset had swelled to gargantuan proportions although my boy would only use only a few pieces at a time.  I thought I’d step in and help him as it was clear that he was finding it difficult to use the new pieces.  One morning, after dropping him off at school, I embellished his arrangement with all the exciting new accessories – stations, train sheds, extra bridges, turntables and exciting twists and turns of the track. It looked fantastic and I could not wait until he returned home.

He hadn’t had a great day at school and was mightily wound up.  It took us about 10 minutes to walk home instead of the usual 5.  His schedule was waiting for him when he got home and he knew it was time to play.  I went to the kitchen to get him a snack.

Crying and screaming pulled me back.  I ran into the playroom to find him tearing up the track, frantically throwing pieces back into the box.  He was in a frenzy, a desperate meltdown and nothing I could do would calm him down.  It took him about 10 minutes to recreate his original lay out.  Every single piece was exactly where it had originally been and he knelt down, panting and crying.  He was too upset to play with it but, in time, the horror passed.

Last night reminded me that the horror remains.  When I let out an involuntary ‘Oh no!’ he burst into tears.  ‘I’m sorry Mummy, I didn’t know.  Why did you do it when I was not here?  Why did you move the bread bin without telling me?  I did not know that the coffee machine needed to be there.  I am so sorry, I didn’t know’.  

He has learned, to some extent, to deal with change every day and accept it as an inevitable part of life.  But he notices it all and it hurts him.  Still.  No matter how hard I work every day to prepare, to minimise, to support and encourage, accepting change is and will always be the greatest challenge of his life.  As he grows we expect more of him, we must, but equally we must not forget that he will always be drawn to that which has become comfortable.  Why?  Because the world is so bloody confusing.  

Maths

 

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A note to his teacher in April 2016.

I find maths easy in my brains.  I am able to read maths questions and crack the answer out of it’s egg.  I work out sums with all my skills.  I am just not that good on games which you have to say it first.  With my brain, it just needs a few seconds to calculate it.  Saying it the second after the question is read really puts my brain off.  Mathematics is very good with Mrs Jones around.  Most things in maths are things I can do without help.  Times tables are a really good way of learning maths successfully for me.

Sausages

sausages_592633‘Why are you feeding him those disgusting sausages?  With a diet like that he’ll be missing out on a lot of vitamins, wow’.’

Wow indeed.  Such a loaded question, where do I start?  How about with my mood.

Good mood.  Rhino skin in place, tolerance in tact, smile and answer ‘They are his choice, he really likes them’.  Drift away, cursing under breath.

Bad mood.  ‘I am not ‘feeding him’ anything.  Thank goodness he has brought those sausages with him or we would not have been able to come to your house.  He won’t eat yours and they will make him vomit.  You can thank me later for protecting your carpet. Perhaps you’d like to take a tour through the history of his eating habits.  

He was weaned on every fruit, vegetable and pulse under the sun.  Everything was steamed, mashed, whizzed and consumed.  At the age of two and a half, shortly after his autism diagnosis, he started limiting his food.  It happens, it is real and it is not unique to him.  Something he had previously eaten would make him gag.  I started trying to disguise vegetables so they looked like the ones he would eat, chopping up green beans to make them look like peas, cutting sandwiches into shapes, using every act of encouragement I could.  He limited and limited and limited.  Eventually we got down to 6 foods.  Yogurt, bread, jam, tuna, weetabix and sausages.  Mealtimes were heavily ritualised, correct plates, bowls, cups.  It stayed like this for months.  He simply couldn’t look at some food without retching.  I was desperate, reading books and books on it, trying everything I could to entice him.  I mixed minuscule amounts of vitamin drops into his yogurt, all the while risking it changing the flavour and him giving up yogurt too.  The stakes are so high when your child eats next to nothing – losing a food from the list is catastrophic.  We got an allotment to help him touch, grow and hopefully try fruit and vegetables.  Every person in his life was instructed to casually offer him things, eat things in front of him while saying how delicious they were.  We took endless trips to the supermarket to sniff things and see what he might like to try.  I went on a course with a dietician who said, ‘Well there’s nothing much more you can do, but don’t worry, I have seen people who eat nothing but weetabix into adulthood. They are not very healthy but they have survived’.  I grimaced.  Perhaps she might have told us this before we got in the car and drove for an hour in the hope she could help us.  We poured over pictures of fruit and veg in books, read stories about them, all the time trying to disguise the fact that I was panic stricken and had run out of ideas.

For a while he needed the washing machine on in order to eat.  Then he needed to eat in a different room.  When he finally managed to eat at the dining room table he needed an i-pad to keep him occupied and distract him from the stress of eating.  Headphones help.  A lot.

Some people, who believed themselves to be experts, suggested that we leave him to starve.  That’ll do it, they said.  That’ll make him eat.  Wrong, you cruel, ignorant bastards.  All that would happen is that he would go without.  He would get tearful and hungry but nothing could make him eat something that he could not handle either by sight, smell, texture or taste.

Then one day he licked a segment of orange at a friend’s house.  It was like getting an electric shock.  There was a tiny opening, the smallest possibility that he would eat one.  We tried again at home, no dice.  We tried again at the friend’s house.  Nothing.  We put a slice on the table, near to but not on his plate and started from there.  Over the next few months he learned to tolerate it and not throw it.  He managed to sniff it and got a sticker every time he did.  In all, it took about two years until he took a lick and then a small bite.  After another few months he ate a whole piece.

This work carried on with a few target foods.  I printed off the major vitamins and minerals and targeted the foods that could help the most; blueberries, grapes, bananas.  He got a sticker in his ‘Big Food Adventure’ book for every attempt.  Thank goodness he drank milk. My sister-in-law managed to interest him in a raisin which was then backed up at school and he was away.  Pre-school got him into cocktail sausages (different shape – quite a triumph).  My sister got him to try a ricecake after a sustained but stealthy group eating session with her children.  Slowly, slowly over the following years we built up to around 20 foods.  Now, at the age of ten, he probably tries and tolerates one new food a year but sometimes giving up an old one in the process.  He has eaten the same lunch for 7 years.

I am one of the few parents whose ambition it is for their child to eat chips.  What people never understand is that when you have a child who cannot tolerate many foods, it is impossible to eat out as a family.  Wherever we go, we take his food with us.  Some restaurants are good about this, as we always explain, but some are less than welcoming. If he would eat chips, imagine the places we could go!  Imagine, just imagine, being out for the day and grabbing a casual lunch somewhere.  Actually being able to buy a sandwich from a shop.  Oh, the celebrations when he ate a hot dog sausage!  Crumbs from the roll dusted off, sausage sniffed and licked but consumed non-the-less.  ‘We can go to America!’ we cried.

The strangest breakthrough of all was with carrots.  We had been working on carrots for ages.  On a trip to Duxford Imperial War Museum he sat, munching on his packed lunch, in a cafe decorated with wartime posters.  Dr Carrot, the creepiest carrot in the world, was striding out with his medicine bag, dressed in a large collar, spats and a monocle. On his bag was written ‘Vit A’.  By chance, it was positioned next to a large poster declaring ‘Carrots keep you healthy and help you see in the blackout’.  He was entranced.  Night vision is a very useful thing if you wake up at 3 o’clock in the morning, every morning, and creep into your parents’ bed.  He expressed an interest.  It was a Sunday afternoon but we drove around until we found a garage shop that sold them and served them up as soon as we got home.  In one night he coped with them on his plate, sniffed them, licked them and took a tiny bite.  Two years work in one night.  By the end of the week he’d eaten a whole slice.  If only he’d been as interested in Potato Pete.

I have made the mistake of trying to get him to drink something, fruit juice on one occasion, by pressurising him and was vomited on for my pains.  Milk or water are all he will drink but I can live with that.  He can now use a knife and fork, despite not seeing the point.  He has just started taking liquid vitamins as he originally tried them as a medicine when ill.  I’ve set a daily alarm to remind him to take them.  The battle continues, by stealth, persuasion and encouragement.  I will never stop trying.

So, you irritating old windbag, you may well think that the sausages he is eating are disgusting (and thanks SO much for saying that in front of him).  You may well assume that I don’t care what he eats, that I am somehow blissfully ignorant of the deplorable state of his diet and that you are doing me a huge service in pointing out that he is not accessing the nutrients he needs for a healthy life.  Allow me to suggest that you don’t catch me on a grumpy day…

Lego

20161015_181308_resizedIt has taken two days for The Builder to prepare the space.  There are a selection of vehicles placed with precision around the construction area.  Several tiny lego onlookers stand or sit facing the building zone.  Finally the miniature conveyor belt and small scarlet wheelbarrow take up their positions to the east.  The box is opened.

Lego is something we have always done together.  Shared time, shared experience, teamwork.  My job is to separate the bricks by colour.  The Builder opens the instruction manual and looks at me expectantly.  I must find the required bricks swiftly and load them one by one onto the conveyor belt.  He slowly rolls the wheel of the conveyor belt between his thumb and index finger and the lone brick completes the first part of it’s journey and drops onto the table.  

The wheelbarrow is poised.  The brick is placed into it and rolled a few inches across the table to the assembly area.  It can only accommodate one brick at a time and, once emptied, ambles back for the next one.

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One hour in and I hate the bloody wheelbarrow.  Two hours in and I want to incinerate the wheelbarrow and pass the conveyor belt through an industrial shredder.  I have tried and failed to distract The Builder away from them both to no avail – I am never going to be able to simply pass the bricks to him across the table.  My father once offered to help.  Within half an hour his face had actually turned grey and he had to remove himself from the table.  This is not for the faint-hearted and certainly not for anyone who believes that The Builder is being awkward on purpose.  I must grit my teeth and power on.  Shared time etc…

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My eyes survey the room in desperation.  I can feel my bones ageing .  I’m gripped in a sort of panic.  It wasn’t so bad when we were just building small vehicles; they didn’t take long and I could sometimes surge ahead by carefully loading several bricks at a time on the conveyor belt, momentarily escaping to the kettle or the radio.  But if my concentration wanes, so does his, so on on.

We enter the third hour.  I am still alive and so is he.  I have stopped fighting in my head and I can just concentrate on the fact that we are together, chatting and having a laugh. The construction continues but becomes almost incidental.  Besides, after this we start a two storey building with a roof terrace.  We’re in for the long haul.

The Builder is happy.  He is working at his own pace, in his own way and will end up with exactly what he wanted in the first place.  It really doesn’t matter how long it takes.