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?

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.