Pearls of wisdom

In which singing and dancing saves the day.

This post was written for Firefly Community,the original can be found here

 

I have long thought that life could only be improved by spontaneous bouts of dancing and singing.

I mainly blame my mother for this tendency. I was exposed at a tender age to every Hollywood musical known to man.

 

Family members were routinely subjected to yearly attendance at a 3 hour pantomime.

 

My dancing teacher was a huge believer in inclusion. Ability and talent mattered not a jot. Everyone should have a chance to shine. Everyone. It was quite a large dancing school. She was not gifted with editing or quality control skills.

 

Apart from giving me a lifelong fear of amateur dramatics, because of resurfacing guilt, it has only reinforced the feeling that singing everything is definitely the way forward.

 

Fortunately, my family tend to agree (the slow drip approach of brain washing works well I find).

 

Pearl’s school is run on Conductive Education principles, which rely on repetitive movements paired with simple repetitive songs. The die is cast. Entering our house is like a second class, badly written version of Calamity Jane (which is, incidentally, also what I’m considering changing my name to)

 

On the naming front, I can highly recommend calling your child Pearl. It is relatively unusual, meaning naming labels don’t require a surname. Pearl is remembered and her record easily traced by all hospital departments, as they don’t tend to have another under the age of 80.

Most importantly Pearl  is easily replaced in songs.

 

“I kissed a Pearl and I liked it”

 

“My Pearl’s mad at me”

 

You get the picture.

 

And then courtesy of Elkie Brooks she has a song of her very own. (“Pearl’s a Singer” for anybody under 40). Pearl does indeed often “stand up when she plays the piano”

 

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The lyrics can be changed on uncooperative days to

 

“Pearls a whinger”

 

I hope this is character building, it usually distracts her and makes her laugh. Whatever gets you through the day.

 

I have recently been ‘enjoying’ a particularly long-lasting flu virus with a very bad grace. In the middle of this a cock up from our Local Authority, landed me with a call suggesting that my nonverbal, doubly incontinent child could have her secondary education effectively provided at our local High School. The same High School that had been unable to cope with our articulate, high functioning, academically able, son with Asperger’s. It seemed unlikely (yes really!) for this placement to be successful. I had in fact attended a two hour meeting a fortnight previously where I had discussed and agreed the perfect setting with a Local Authority staff member. I was not happy.

 

Incandescent rage goes some way to describing the way I reacted to the news,

and was apparently a good negotiating tool, the problem was quickly resolved.

 

Entering Pearl’s bedroom the day after this fiasco, and still feeling lousy I was greeted with charm, panache and a cheery hello (one of two of her recognizable words) She was warm, giggly and cuddly the perfect, cheering, combination.

 

As I began the usual, dressing and washing procedure, which is not without its challenges, all I could hear in my head was a paraphrased JayZee.

 

“I’ve got 99 problems but my Pearl ain’t one”

 

Life with a disability can be a struggle, but it is often the environment the lack of support, and the daily grind that is disabling. Filing cabinets of admin and frequent appointments can really leech the joy out of your life.

 

A friend of mine not in the Special Need Parents Club, looked in fear at the severe and complex disability and health needs of a mutual friends disabled child.

“But what does she think when she looks at him?”

She asked.

 

I thought of the Mother/Carers face when she looked at her son, full of love, knowing, and shared stories.

I think she usually thinks “That’s my boy” I replied.

 

And on days when love isn’t enough and the physical and emotional strain and reality of Caring is overwhelming, there’s always song.

 

I’ll see you Somewhere over the Rainbow, the skies there, well you know the rest.

 

Until then So Long, Farewell, Auf Weidersehn, goodbye.

 

 

 

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Property.

In which Pearl #ROFLs and Phil Spencer diffuses a meltdown.

Accessibility is a big issue for us in Pearlie J Towers.

The smallest one has some independent mobility, but is limited,and is likely to become more so as she grows.

We have made some simple fixes to improve things, a grab rail here, a bath step there.

For the last two years we have been wondering, how can we future proof this place?Should we move?

Helpfully Channel 4 programme,  Love it or List it  deals with just these issues. Presented by go to property experts, Kirstie Allsop and Phil Spencer, property owners decide should they stay and renovate, helped by Kirstie, or sell and move, supported by Phil.

The added jeopardy which is needed to make the show viable is that one seller wants to stay, and one wants to leave. For added excitement Kirstie and Phil are pitched against each other. I am giving nothing away by saying Kirstie nearly always wins, the houses are transformed, moving costs are saved, and Kirstie roundly berates Phil for being a loser.

But today in my house it is very much all about the lovely Phil Spencer. He is definitely the winner (sorry Kirstles).

If you have a child with Additional Needs who has meltdowns let me tell you about the Phil Spencer method of resolving the situation.

Series  3, episode 1.  Really pertinent as one of the buyers has reduced mobility.

Picture the scene. Father of Pearl and I watch with interest while Pearl, less interested in property porn than us, plays on her iPad.

The house in question has a tiny upstairs toilet behind louvred doors. Phil decides to hide in the toilet. Kirstie after 17 years of partnering him is not fooled. She slowly advances up the stairs “Phil are you in the loo?”

Pearl’s iPad is dropped. Three of her favorite things are about to coalesce. A sense of anticipation, toilet humour and hide and seek.

As Kirstie approaches the top of the stairs the small one giggles in anticipation. (It has suddenly occurred to me that the scene is almost a complete reversal of the “Here’s Jonny” scene in The Shining, with added toilets and no axe)

The louvred doors burst open to reveal  Phil sitting  (oh the humanity) on the toilet.

 

You may never have seen Pearl laugh. When she is really tickled, physically or mentally her muscles tighten, her eyes close, she stops breathing and emits a slow squeal. It is utterly contagious and we all spend an inordinate amount of time trying to provoke it.

Pearl’s reaction to Phil Spencer sitting on the toilet fully clothed, was totally, totally splendid. She cried with laughter, she squeaked, she squealed, she had to be reminded to breathe. She actually threw herself bodily from the sofa and rolled about on the floor, laughing.

 

Of course we replayed it immediately, and like all classic comedy it did not grow old. It was simply marvellous, we taped her, we taped it, we had it on file for posterity.

This morning during school preparation something upset my lovely girl. I am not sure what  as intervening with PODD or using yes/no questions was not even a possibility. (Oh the joy of a non verbal child) Pearl was beside herself, welded to the sofa, the taxi had arrived, fat tears pouring down her cheeks and muscles tight with upset. Something (possibly my refusal to let her have a Creme Egg for breakfast) had gone very wrong. The taxi was waiting, she was having none of it.

I saw the iPad and wondered. Would it? Could it? Could the suave charm and sheer comedy timing of Phil Spencer save the day?

Tentatively I pressed  play. Kirstie started up the stairs, Pearl’s tears continued. The taxi was still waiting.It wasn’t going well. Suddenly the louvred doors burst open and there he was, the Man of the Moment sitting in his glory on the loo.

This proved irresistible for a child with a finely honed ear for comedy, the mood in the room changed. The tears astonishingly stop. Pearl begins laughing and decides she must share this comedy gold with her Taxi Driver and Escort.

No matter what happens at the end of subsequent episodes of Love it or List it, no matter how many houses Kirsty radically transforms, know Phil Spencer that you are the winner in our house, and your magical ability to get my daughter on the school taxi this morning is  something I  for which I  will be ever grateful.

Oh and we  have decided to List It too!

 

 

 

 

 

 

 

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