Demonstrating his disabilities ...

For various reasons, I had to take Andrew into the office briefly this week. My work colleagues all know about Andrew's disabilities, but they had recently expressed a desire to see how he was growing.

Knowing that I wouldn't be able to keep hold of him all the time, I used his disability buggy. They immediately asked if he could climb out of the buggy to play with them and, given the size of the group, I let him sit on the floor with them. He played quietly and intently for a few minutes, firstly with an ID badge on a lanyard (a favourite) and then with a discarded birthday balloon.

Seemingly before anybody could blink, he got to his feet and ran halfway across the huge open plan office.  Chasing after him, my colleagues quickly learnt three things:

1 - he is not physically disabled and can run very fast

2 - he doesn't care where he runs, and

3 - shouting after him to "Stop!" doesn't work because he's deaf.

Their reaction was mixed. Some thought it funny, until I pointed out that he can behave similarly in a supermarket ... Some were sympathetic but you could see they were thinking "Thank goodness my child isn't like that" ...

Now if only he'd had a meltdown when eventually caught, they would have seen how bad life can get ... But maybe, given that the office was busy (200 people on my floor!) it was better that he didn't!!

Dear Diary ...

... I'm sorry that I haven't written for a while. (Sorry to all my blog readers too!) Life hasn't been brilliant during the last five weeks, and it has taken its toll on us.

Andrew has calmed down a great deal since the madness of early September, but he has not returned to the "happy autistic" that we once knew. We see the old Andrew sometimes; and we see the new, quick-to-anger, distressed-for-no-obvious-reason Andrew sometimes. The furniture is surviving, probably thanks to the wall and door padding in his room. Hard plastic toys are now carefully rationed, and are removed once he falls asleep so that he cannot throw them when he wakes. Family outings haven't really resumed.

School asked us to collect him one lunchtime after a particularly bad morning. I then had a mini-meltdown of my own - if a specialist ASD school were unable to cope, how on earth were we, as untrained parents, meant to know what to do? It transpired they sent him home due to his raised temperature (unsurprising after screaming all morning). My mini-meltdown has had a good outcome though - school are giving us more family support, and are trying to arrange for professional support too so that we can get a break from caring.

We are exhausted. Andrew is sleeping, but wakes 2 or 3 times each night and is difficult to re-settle. We are sleeping, but always with one ear open, listening out for him so that we can try to settle him before he gets too distressed. We need time to re-group, time to take care of our own health, so that we can take care of him better.

You wouldn't believe a small 6-year-old child cause such mayhem.

Teeth! And an apology

This will have to be a quick post, with apologies for not blogging sooner.

We are still going through the mill with littl'un. Things are not as bad as in the previous blog, but he is still only sleeping fitfully and is awake from 4-5am onwards - which means we are not getting much sleep either. Daytimes are much calmer.

But we think we know the cause - teeth! At the end of week one, he lost his first baby tooth, and an adult tooth is coming through. He now has a second wobbler. Because he is so sensory seeking and is used to banging toys onto his teeth for input, we think he's distressed at the sensations he is now feeling.

Six days that we never want to repeat ...

This isn't going to be a nice post.

My original plan was to write a wonderful post towards the end of last week, regaling all the fun that we had on holiday in North Wales - caravan, the Rhyl air show, climbing castle walls. But I didn't get any time last week, and haven't stopped to breathe until today.

Thursday - after the first day of term - our son came home and had a meltdown. Not a tantrum, a full-scale meltdown. Screaming, throwing things, scratching himself, banging furniture, banging doors.

Fine you may think - many autistic children do this, even the most placid ones. However this meltdown has lasted from Thursday afternoon until Wednesday morning, even through the nights, and he is still only calming down, not out of it completely. Six days from hell that we never want to go through again.

Was it school? We doubt it, he loves school, has no problem with transitions, and in fact school reported that he wasn't misbehaving terribly. Nothing had changed at home - no food changes, no clothing changes (he still fitted last summer's uniform), no environmental changes.

By Sunday, with no let-up, no sleep, and worried about the self-harm, we took him to the GP. We were hoping that our son had an infection, some reason for being completely out of character. The GP found nothing, but prescribed penicillin in case of an underlying virus; and asked us to monitor for any improvement. There was none. On Tuesday, we took our son into A&E. Now, we're not hypochondriac parents, we hate medical intervention - but something was distressing our son to this extent. We had a fantastic doctor, he ran all the tests under the sun, but ultimately found nothing. It eased our minds to know that various illnesses had been ruled out, but we - and the doctor - were left puzzled.

On Wednesday, we let our son return to school, warning them of his behaviour. (That's not as unfair as it sounds, he attends an ASD school so they are trained in handling challenging behaviour.) And whilst he was at school, we repaired the chest of drawers and spun it round so it faced the wall. We removed all hard toys from his bedroom, and provided only soft toys. We added a foam pad to the back of the door where he was hitting it. The replacement of the curtain rail will have to wait, a blackout blind will suffice.And we started breathing again.

Today, he is calmer. There are still short bursts of distress, but nothing compared to hitting the door 40 times repeatedly with clenched fists whilst screaming unintelligibly. Short bursts we can cope with.Hopefully we are on the other side of this horrific episode. But without knowing the cause, how do we stop it happening again?

Hearing .. but not listening

Most of the posts so far have revolved around our son's Autism, as this (coupled with learning delay) affects most of his behaviour. Time to talk about his deafness ...

Andrew has Auditory Neuropathy Spectrum Disorder. It means that the mechanics of his ears work, but his brain doesn't get the message. The breakdown can lie with the hairs of the cochlea, with the auditory nerve, and/or with the receptive areas of the brain; and in Andrew's case, it looks like the latter.

When he was still a baby - and we didn't really understand his hearing loss - it was positively useful that he was deaf. We could clean and hoover the house around him, and it wouldn't wake him from his baby sleep. We could have normal level conversations without having to 'shush' people. He could go to sleep anywhere and everywhere.

As he's grown up, it's become increasingly apparent that our son does have some hearing. He finds reassurance in listening to music, and is rarely seen without a musical toy clutched to his left ear. (When he gets fed up, he'll switch it to his right, but the hearing loss is greater on that side.) He'll go to sleep listening to tunes, and it's the first thing he wants when he wakes. It's as though the music can drown out or cut through the static created by his auditory neuropathy.

We've had one successful run of VRA (visual reinforcement audiometry) testing with the ever patient Dr Rachel Booth, which resulted in diagnosis of a sloping severe to profound loss of around 80dB. The testing is difficult. How on earth do you explain to an autistic child with the attention span of a flea, with a learning disability that means he still eats with fingers, that he is to indicate when he can hear a sound? He has no interest in puppets that dance in boxes - the successful testing involved a revolving orange light.

But the more we watch him with his musical toys, the more we are convinced that he has hearing in a wider range than testing suggests. It's as though he 'tunes in' to music - single tone testing wouldn't interest him as its not melodic. He can also hear when we speak to him, normally we do have to shout but sometimes he appears to hear even if we don't raise our voices. What he doesn't do is interpret our voices into words that have meaning - possibly again a sign of a brain injury rather than loss of hearing.

I attended the NDCS weekend about ANSD in 2014 but there - as online - I felt swamped by the suggestion that the solution is cochlea implantation. All I can find online are successful ANSD / CI stories, and never any negative ones; and yet I know they must exist. CI isn't appropriate for our son because if we cannot measure his hearing loss accurately now, how could we measure any improvement? Some of the best improvement stories I've heard about CI are about the non-implanted ear beginning to hear better, which makes me wonder about surgical alternatives. Stem cell treatment is in its infancy, and is a possibility for generating damaged nerves and brain cells.

Our son can hear, but cannot listen. I'm sure there must be therapies out there to help improve his listening, but they are probably designed around children with neuro-typical behaviour and not those with Autism and a learning difficulty. So we will continue to plough on, as parents, trying to encourage our son to listen by playing him different kinds of music ... Guns n Roses followed by Vivaldi ...

What we did this summer 1, 2 & 3

Last Saturday Andrew had a trial ride with our local Riding for the Disabled Association at Wythenshawe Park Stables.

I first came across the RDA when they were the recipients of a Blue Peter appeal back in 1987. At the time I was a young girl myself whose horse riding experience was one pony-trekking break, so I was intrigued by a charity that helped others to ride.

I put our son on the local waiting list nearby two years ago - given his diminutive size, we figure he'll either be a jockey or a Formula 1 driver (Daddy's preference!)

Andrew rode Stitch, their smallest pony, led by instructor Shaun and assisted by two volunteers who I suspect are girls from the Pony Club. And other than getting bored when stood still to receive group instruction, he really enjoyed the experience! He's now on the list as a casual rider (when regulars cancel) and will hopefully get a permanent ride soon.

Whilst we were playing horsey, Daddy was busy constructing the new garden swing. Bought over a year ago from grant money, we have an adult-sized frame to suit Andrew for many years to come, and a cradle swing on a spinner so he can choose whether to rock, spin, or both. This means that Andre can now play outside in 10 minute bursts of activity to suit his behaviour, and he gets fresh air every day even if Daddy is tired.

Yesterday we took Andrew to Play Factore, a huge soft-play near the Trafford Centre. It's expensive and probably value for money for older children, less so for Andrew who had had enough within the first hour - somewhere we will bookmark for the future.

Laser quest and a zipwire (addnl. charge) supplement two separate play frames for under and over fives. The older generation seemed a little too boisterous for our son's comfort so we came off the large frame quickly, unfortunately without experiencing the mega slide. However given his learning delay, Andrew can pass as a 3/4 year old so he climbed happily around the younger area without any other parents questioning his presence.

If I could make two suggestions to Play Factore they would be to invest in a separate baby area, as mixing wobbly one-year-olds with bouncy four-year-olds will always end in tears; and to darken the sensory den, white is not really a sensory experience.

Things my son loves ...

Bit of a random blog this one, but I'm writing it to give some ideas on how to entertain your SEN child without necessarily spending a fortune - which I'm sure would help all of us!

Rubbish!

Our son loves texture and noise. He may not yet be able to construct model rockets out of old Fairy Liquid bottles, but this doesn't mean that everything simply gets thrown away. He adores empty milk bottles - rinsed so that they don't smell - with the lid screwed back on, they make a delightful  hollow noise when hit and when hit against things. Wooden coffee stirrers and ice-lolly sticks get tapped against his teeth. Egg boxes have a strange texture that he likes to stroke. Bubble wrap ... well, who doesn't like bubble wrap!

Musical Instruments

He's progressed from ELC style drums and tambourines, these don't make enough noise. So his drum is now a proper set of bongos purchased from Lidl; and he has a sleigh bell stick and maracas, all found in our local Charity Shop. These all seem rather more robust that the children's toy versions, the bongos are in their third year with no damage yet.

Sensory input

We haven't bought vibrating toys from any of the Special Needs suppliers - have you seen their prices?! So he has a vibrating cushtie cushion, a bluetooth pillow to play music while he sleeps, and two hand-held massage devices. We have recently retired his large bubble lamp, which came from a water features company (I think it was intended for office receptions!); but he still has the small bubble lamp that we sourced from Argos. A colourful spinning light-bulb came from Maplin, and ball lights from Ikea.

Holiday!

Apologies for not blogging for a couple of weeks, but we've been too busy - on holiday at Butlins Minehead!

We self-cater, which involves taking the entire contents of our house (or that's how it feels), transporting it a few hundred miles, and then trying to cram it into a tiny bungalow. But it's worth it to be able to feed Andrew when he is hungry, with food that is familiar. He doesn't appear to mind the change in location or bed, making him even more non-typically autistic. I'm still not convinced that his diagnosis is correct.

The highlights of this holiday for Andrew were the live shows. Not the Butlins Skyline gang, or those re-created childrens' television characters. This year he saw two production shows - Aladdin Rocks! and Scooby-Doo. And he thoroughly enjoyed both - laughing along, kicking his legs to the music, paying attention to the stage much longer than many of his toddler compatriots in the audience. He knew he was there to watch something, and watch he did. How much he understood, how much he heard (rather than felt), I'd love to know.

If only Butlins double beds were more comfortable ...

Everything bar the kitchen sink

As many parents of disabled children are aware, going on holiday is not easy. After working out where to go (will there be things my chjld can access? will they be overwhelmed? will they be bored?) and how to get there (it's not the 3 hour plane flight that's the problem, it's the 2 hour check-in and then passport control at the other end), you arrive at the issue of What To Take.

In some respects it would be easier to fly abroad - with maximum luggage allowances, you have to make the right decisions. When three of you are travelling down a motorway in a seven-seater car, the question is not so much what you take, more what do you leave behind.

And so, here I am, four days before departure, making lists ... and piles. Clean clothing, not to be worn before we go (admittedly that is aimed more at t'other half than our son). Swimming gear. Summer shoes (optimistically, seeing as summer has yet to grace our shores). Technology .. oh, the cables and plugs and adapters ... gone are the days of taking one camera and a stack of 10p's for the phone.

But we have to add other not-so-routine piles. The week's supply of his favourite food, in case the local supermarkets don't have that flavour. The reins, harness, a raincover for the disability buggy in case he refuses to walk if - sorry - when the heavens open. Medicines that we know he'll swallow. Familiar toys, especially the musical ones. New toys so that he gets a treat. Batteries and batteries and batteries and a screwdriver to get in to change them. Nappies, wipes, bibs, cloths.

Still, thar Blue Badge will mean we can park close by our accommodation to unload it all, right? Only if we leave home at stupid o'clock to arrive before all the other parents of disabled children who had the same idea of holidaying in term-time to beat the rush.

Maybe next year we'll just stay home!

Fun ... and not such fun

Last weekend, we went to the Geronimo Festival at Tatton Park. We pre-booked the tickets, getting them at the very low super-early-bird price ... and typically it was the worst day for weather. It didn't rain, but nor did the forecast sun break through the heavy grey clouds.

Still, it was good fun. Would have been better if our names had been on the Carer Access list as promised; and if the BB car parking had been on hard-standing as described on the access form. But these are small annoyances (though the latter would have been a greater annoyance if it rained!). We went early and fortunately didn't have to queue too much for the activities that our son could enjoy - bouncy castles, the practice cargo net by the monkey climb, the donkey rides.

It seemed quite a popular event for families with disabled children, and so much more could have been provided to accommodate them - two cycling arenas, but no sign of any bikes for disabled children; a chill-out zone for under-threes, but no equivalent for older children. I'll be letting the organiser Simon know my ideas so if you have any more to add, please comment!

We are lucky that we live so close to Clayton Vale, a huge green space that combines formal parks, woodland walks, mountain bike trails, and the odd pylon ...We'd go there more often if I weren't a lazy Mum!

Andrew seems to like it though, this photo was taken yesterday of him running off into the distance. I have no idea whether he would have stopped of his own accord, or kept going until he reached the end. As it was, he suddenly veered off to the left and, by the time I caught up, was banging on a gate that led to a small children's playpark that we didn't know existed.
 

Two things have been circulating on my Facebook newsfeed this week that have left me wanting a Dislike button ...

First was a questionnaire - "Ask your children these questions, post their genuine responses" - about what children think of their Mums. I did actually c&p this one with my son's first few answers, which were "be be beh beh" to every question. He's non-verbal. He's not going to be able to answer. But thanks everybody for reminding me of that again.

The second was a meme that said "How about putting that screaming kid on vibrate". How about not. How about thinking that there might be a reason why that kid is screaming that isn't simply 'bad parenting'. How about understanding that some children can be affected by sensory changes, and screaming is their only form of communication. How about considering that their parents might have been listening to their screams for the last six hours and need a break. How about having a little understanding.

That is all.

Jumping around or not as the case may be

Take one warehouse, and fill it from wall to wall with trampolines - and you get Jump Nation in Manchester. It's huuuuuuuuuge. And for a child who likes (1) running and (2) bouncing, it's perfect.

But like many parents of disabled children, I was very wary of taking Andrew to such a venue - whilst the general public can be forgiving of children the first time they get in their way, by the sixth time their patience is wearing thin.

Which is why I was delighted to find out in March via another blog that Jump Nation were holding a special event just for autistic children (and their siblings) (and any parents with enough energy to join in). The session was great - children running amok from one jump-bed to the next, but annoying nobody because everybody's children were doing the same thing. I even heard a few meltdowns that received very little attention from others.

Since then the sessions have been held monthly, 9am on a Saturday morning - the next is on 13th June. (Booking link) We've booked on them all! We missed April due to illness, but were back there again this Saturday for the May event. I'm not sure why it wears me out more than our son, it's probably an age thing as I haven't been on a trampoline for over 30 years !

The best moment though was in the cafe when we were taking a refreshment break - water and, for Andrew, the obligatory packet of cheesy puffs. One child decided to climb onto the sofa next to me. Their mother was apologetic and commented:

"We brought him all this way and he's bouncing on the sofa."

My response?

"Heck, I brought him all this way and he's sitting here eating wotsits ..."

Autistic children. You just roll with them.

Snippets: Poop, food, and getting taller

Toileting issues

Like many autistic children, our son has toileting issues.  He isn't yet toilet-trained because that relies on a successful form of communication, which we are still developing - he can tell us that he wants something to eat or a particular toy to be switched on, so telling us when he wants to 'go' will hopefully come soon.

The consistency of his number twos can vary widely. He goes through bouts of constipation, which are (successfully) handled with Movicol. Equally he goes through bouts of runniness, which is the current situation. Not a problem to us, but his SEN school this week decided that was a problem - they had changed his nappy twice during one day, and decided that he has diarrhoea and therefore should stay home on Friday. Believe me, he didn't have diarrhoea - I did the day before thanks to some dodgy coleslaw! His last poop on Thursday was 6pm, his next was Friday 5pm, just in time for Mummy arriving home from work and absolving Daddy of the need to deal with it.

I can't help wondering what was happening at his school on Friday that they didn't want him there ...

Foods beginning with W

Dr Seuss's ABC doesn't list any food in the W category, which is a shame.

Over the last four months, Andrew has expanded his diet from Fortini milk and baby food, to now include Weetabix and Wotsits. The former is fantastic, he can eat more than me (which is impressive). The latter ... well, it's a huge success in the self-feeding and crunchy food stakes, but it doesn't half make for orange poop.

Moving things higher

I love that our son is growing. I love that his clothing size is approaching his age. I love that I can finally dress him in boys' clothes and not baby clothes. I love that he'll be able to go on more rides at Alton Towers.

But slowly everything in our house is being relocated higher. The fridge magnets we thought were safe around the top of the fridge-freezer? Easy pickings. Baskets of bits and bobs? Need to be moved onto the highest shelf of the bookcase. The television? Well, it's on a high stand anyway but may need to be attached to the wall.

His reach is expanding but his understanding of what he's allowed to reach, that isn't keeping up. Flippin' autism.

Accidental sensory deprivation (Silly Mummy)

Sometimes I forget that our son is sensory-seeking, and expect him to behave like an NT child. Four a.m. is one of those times. My brain doesn't work well at 4 a.m.

Andrew is going through an annoying stage of waking up early, we've had a run now of 4:40am wake up calls. We don't generally have problems getting him to go to sleep, it's just staying asleep that he doesn't understand, he thinks it's time to get up and play. It's not a noise that wakes him, I was in his room from 4:10 a.m. this morning and the house is silent. It's not a toileting issue, he's still in nappies. But it is getting light earlier, so maybe he's just waking up and thinks it's morning already.

Silly Mummy takes herself off to the shops, and buys a blackout blind. (Have you seen the price of those things? And don't get me started on the shoddy manufacture, I've emailed Gro about that.)

Result? Instead of playing at 4:40 a.m., he's screaming.

A few hours later (not all screaming hours, thank goodness) when my brain begins to work again, I figure it out. It probably already bothers him that he cannot hear anything when he wakes up. And now I've removed another sense - he cannot see anything, because his room is pitch black. Sensory deprivation times two.

Andrew now has a blackout blind, and a night-light. (I'm determined to get my money's worth from that damn blind!) It won't stop him waking up, but it will stop him from getting distressed.

Now if only we can work out why he wakes up in the first place ...

Why blog?

Who are you?

I'm Mum to Andrew. Andrew was born in 2009, eleven weeks early, and weighing just 22oz (around 635g if you're younger than me!) I describe him as a "spectrum" child, not as an homage to the computer, but because he is diagnosed as being on two spectrums (spectra? Is that a word or just a Bond baddie?)

• Auditory Neuropathy Spectrum
• Autism Spectrum

From the reactions of medical professionals and the paucity of information on t'internet, this seems to be a rare combination here in the UK. Andrew is sensory-seeking rather than aversive; he is non-verbal but learning delays mean hasn't yet picked up sign language or symbols; and he has some hearing loss, but determining the extent is tricky when he doesn't understand the testing process.

Why blog?

Because Andrew can't.

No, seriously, why blog?

To let off steam.
To share ideas.
To spare my Facebook friends from my endless rambling.
To pose controversial thoughts in an environment I can control.

But mainly to get thoughts out of my head. Feel free to comment to do the same.