I’ve wanted to write a feel-good blog for a while but each time I try I reach an impasse – there’s just not the same entertainment value in it.

But a recent trip up to Suffolk to see some old friends proved to be the catalyst I was looking for – and, more importantly, a real step forward for the boy.

Our annual pilgrimage to the East Anglian coast means that DS1 is familiar with the area and our hosts Maggie and Clive (or M&C – as you know, I’m a big fan of the acronym) – but it is not regular enough for him to feel completely at ease. There is always a mixture of excitement and apprehension on his face with the prospect of going. Likewise for us and M&C – the last time we visited was a bit fraught, with DS1 being particularly autistic that weekend.

So it was with a slight feeling of tension in my stomach that we set off. Fortunately, he’s an excellent passenger, withdrawing into himself with the trepidation of the end result of the journey.

On this occasion, he read the whole way – he had become a bookworm overnight (a pastime he hadn’t entertained before) and was in the process of devouring the Horrid Henry box set.

His only sign of anxiety on the way up was his refusal to allow me to stop at a services. “We can’t stop,” he pleaded, as I pulled in. “You can’t get out of the car.”

Den of iniquity

Immediately we got to M&C’s he began familiarizing himself with his surroundings, exploring the nooks and crannies of their 15th-century farmhouse. Even this was a sign of his maturing – previously he had insisted I accompany him on his reconnaissance.

Once in his bedroom, he set about making a den – a legacy from past visits where he had done likewise – familiarity and routine being the best policy. The den is nothing sophisticated – a few towels placed across the divide between the room’s twin beds – but it gives him a place to hide if need be.

This reminded me of a previous visit when he had asked me if I could “fix his back passage”. Taken aback, I was very relieved to discover he was referring to the fact that the rear part of his den had fallen down.

On that same visit, we had taken his friend Joanne with us and as they were settling down for the night he turned to her and announced: “When I get into bed I like nothing better than a good suck.” He was referring to the fact that he loves sucking his fingers. I hope.

This time, he was settling in well, albeit that he was speaking to me in a hushed tone when M&C were in the same room and if they spoke directly to him he would whisper the answer in my ear – selective mutism in plain sight.

The need for speed

The following day we headed into Ipswich for the Ipswich Town FC open day – for no other reason that it was on and it was football related.

There was the opportunity to watch the players train and to take part in some fun and games. DS1 was attracted, like a fly is to shit, to a shooting game where a speed gun measured how hard you kicked the ball.

We joined the lengthy queue and when it came to his turn he clocked 25.3mph. For the next hour he took his two permitted shots, then went to the back of the queue, waited in line for 10 minutes or so, took his two shots and then rejoined the end of the queue, insisting he could not quit until he had beaten his score.

I was full of admiration for him – for his tenacity (normally, he would have thrown the towel in at the earliest opportunity) and for the pure fact that he was taking these kicks in front of an audience without any signs of self-consciousness (all too often he would have refused to have a go, even though he really wanted to).

Finally, and thankfully, he clocked 26mph. We could move onto something else, perhaps?
“I want to beat 26,” he announced, and back to the end of the queue we went.
For the record, he hit 27. A huge grin of achievement on his face – his work was done and we headed for home.

Back at the farmhouse, he took himself off to his room to read – a sign of self-regulation, of knowing when his senses were overloaded and how to deal with it.

All quiet on the Western front

The next day, however, proved difficult. We’d had plans for another day out, but DS1 was adamant we were not leaving the house. He clearly needed some down time; his autism was to the fore. Although he was not badly behaved, he really didn’t know what to do with himself, apart from the insistence that “we are not going out”. He flitted around the house, not settling to anything, before lolling on me, occasionally smacking me (lightly) and repeating: “I don’t know what I want to do.” Every suggestion was met with an “I dunno.”

Eventually he retreated to his room where he set about creating his own board games. After a while I went to see how he was doing, to find he had shredded his drawing pad, covering the floor in a mass of tiny bits of paper – like he had created his own ticker-tape welcome. He often rips up paper – it seems to calm him when he is feeling anxious. Probably shifting the anxiety on to me as I wonder how on earth we are going to clear this mess up.

Trying to ignore the paper Armageddon, I reminded him that his mum was arriving the next day.
“Who cares if mum comes tomorrow,” he replied. “I’ve been enjoying the peace and quiet.”

I wish I had been.

Shellfish behaviour

Still, she did turn up and we headed out to Aldeburgh, home of the scallop shell sculpture (designed in tribute to the composer Benjamin Britten, who lived there).

I thought he might like to see it, but I was flabbergasted by how much – we couldn’t drag him away from it.

The Scallop is a metal structure in the shape of the shellfish after which it is named. Situated on the beach, looking out to sea, it is a really peaceful spot – if you take the gawping tourists out of the equation.

It is encouraged to climb on it and hide underneath it. And DS1 did just that. We visited the sculpture twice that day; both times he clambered around for half an hour before we had to finally drag him away. He was noticeably sad at having to leave its sanctuary.

By now, DS1 was engaging in conversations with M&C. When we played one of the games he had invented, I encouraged him to explain the rules to M (normally, he would insist I do this) because it was his game, but mainly because I didn’t have a clue what was going on.

This he did clearly and audibly, albeit he was looking at me when he was explaining the seemingly made-up-on-the-spot rules to her.

He was also vocalising and joking with C. Somehow, we got on to the subject of heaven, and the wife asked him if he thought C would go to heaven, trying to elicit his views on the subject – he’s not a believer.
“No!” he answered.
“Oh, why?”
“Because he’s fat.”

Sometimes his confidence can go to the other extreme.

Not (too) put out C marvelled to us later at how much improvement he’d seen in the boy since his last visit. By the end, DS1 was even making eye contact with them.

Seafood for thought

The next day we had planned to go out on a rowing boat, but once again he refused to get dressed or contemplate leaving the house.

“If we were going to the Scallop would you want to go out?” I asked. He nodded, rushing off to get dressed, and we headed back to Aldeburgh beach, where another hour of clambering ensued. Here, he was king of his own castle.

But another miracle of sorts occurred. Off his own back, he jumped down whenever anyone turned up to take a picture of the sculpture, before climbing back up to restake his claim to ownership.

I’ve rarely seen him so happy. I asked him why he liked the Scallop so much. Was it because it made him feel safe?

“Not really,” he replied. “I could fall off and smash my head on the stones.”

9 comments

  • Tanya Beaney

    Aldeburgh is beautiful perhaps next time you should take him to Thorpeness Mere and do some canoeing or boating together.
    If you are this way again and you thought DS1 could cope would love to catch up with my own little Digger.

    Reply
    • Phil Clisby

      Yep, that was where we were supposed to be going but the Scallop won. Will let you know when next in the area.

      Reply
  • Clive

    It was a great few days with DS1. His progress was quite marked and we really enjoyed his company (we were both initially a little apprehensive about how he would react to us on this visit). It was eighteen months since he last came, and it was a joy to be with this chatty, very intelligent, young man this time. It’s a great compliment to you both for the sensitive way you have handled his problems and your never ending patience and understanding of his condition. It’s paying dividends. Great stuff Phil, As always, you’re welcome back anytime.
    PS thanks for cleaning up his bedroom paper trail.!!!

    Reply
    • Phil Clisby

      Thanks Clive. Can’t take the credit for the paper clear up, though – that was the wife.

      Reply
  • Polly

    I salute Tom’s honesty – sorry, Clive!!

    From an early age, we’re trained to fit in with other folks’ wants and needs, even if contrary to our own. “You’re being selfish!” we’d be told. “Always put other people first.” It takes a while to realise that life’s really about co-operation and compromise (and thus often containing a smidgeon of dishonesty!). We were also trained not to admit to fear because of being labelled a sissy, which resulted in having to partake in activities that scared us ****less. We also tried to conquer fear by making our own decisions to embark on dangerous activities on our own terms.

    Your weekend seem to have been packed with such instances, and it’s heartening to realise that he’s certainly maturing into someone who is learning the strategies to cope with tricky situations. His comment about mucking about on the Scallop is priceless – what we’d all be thinking if it were us, but wouldn’t have dreamed of vocalising!

    Reply
    • Phil Clisby

      Thanks Polly. It was very encouraging. Honesty isn’t always his watch word, though – he blamed the dog for drawing with Tipp-Ex on the window the other day.

      Reply
  • MaggIe

    I’m just so sorry I had to beat him at Othello – I tried to lose but it would have been too obvious. But he seemed to take it with equanimity – better than some kids we have known!

    Reply
    • Phil Clisby

      Thanks Maggie. Yes, that made a pleasant change, although he did question your understanding of the rules.

      Reply
  • Lisa

    Aldeburgh all the way!!! It is a lovely place, no wonder he was content there.

    Reply

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