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”
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?”
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.