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.