Did you wake up this morning to find you were the parent of someone with additional needs?
Has your family life taken a turn you never expected?
Never fear, The Wrong Kind of Snow is here to help you manage your expectations, embrace your new normal, and hand you a tissue, before,during,and after, the school run.
Learn from one who knows,that good hair, cake, and sarcasm, can give you a veneer of coping without touching on the real issues.
I, Mother Of Pearl,can personally offer a service to help you laugh in the face of forgotten appointments
You too can learn to kick Local Authority ass-if necessary (and believe me it will be)
I can aid you in using the right word to describe the myriad of visiting professionals (hint no matter how they behave, team although a four letter word never starts with c or ends in t)
You will feel better about your housekeeping (pop in for coffee anytime….consider my home a therapeutic installation)
You can improve your distance running with the mantra “if you turn back now you’ll have to do the parenting thing”
You are most welcome.
Todays lesson involves a gold standard of therapy “Early Intervention” This is an excellent idea in theory. Take a child with issues and through intensive therapy bring them up to speed before they hit school age.
Intensive,regular therapy is expensive and hard to come by, but if it’s efficacy is proven it can cut down on future intervention thereby saving the state money. Neat. The child can catch up with peers or narrow the gap .Fabulous idea.
Have any of you come across Hurrah for Gin ? She has neatly personified the guilt that comes with parenting.I urge you to check out the Shitty Guilt Fairy .Unfortunately early intervention has real life guilt fairies of it’s own-the Professionals.Don’t get me wrong, these are knowledgeable, experienced, well educated, well meaning people who each have their own version of early intervention, that will if carried out by the parent to the letter improve an aspect of the child’s (let’s call her Pearl) life.
By the time Pearl was two, our weeks consisted of an afternoon at The Child Development Centre (you can read more about this here).A morning at School for Parents (a substantial drive across a county border). A morning of hydrotherapy. Physiotherapy and Speech Therapy programmes to carry out. A morning at the local mums and tots just to point up the difference between her and her peers.Random visits to the hospital to search for the answer of the enigma that was Pearl with Paediatricians, geneticists, neurologists and a variety of puzzled and interested student nurses and Doctors. Between this I was attempting to keep up my Speech and Language Therapy Registration and feed and parent the other two children and sustain a marriage.It was hell, but I foolishly believed I could continue at this pace in the short term as it would miraculously cure Pearl and life would return to normal. How fondly we would look back on her early difficulties as she received her Nobel prize for Literature.
Truly some of this pressure came from within, but it was unwittingly reinforced by the Professionals individually ‘supporting’ me while not seeing the wider picture.
I would love to know how models of diagnosis and therapy work in other countries.Our Western model of medicine,and our work ethic may be leading us to a mistaken belief that we can work our way out of difficulties.That proper perseverance and elbow grease can solve our problems through sheer exertion and force of will.Pearl was never going to be fixed by tonnes of early intervention.What we needed as a family was support, time to enjoy our girl’s babyhood, practical help with physiotherapy and the necessary equipment, not to become a problem that was there to be fixed.My girl has such strength of character,stubborness and determination,I wanted a professional or two to recognise that and celebrate it with me,not to point out her difficulties and attempt to eradicate them.To be fair the same medical model that wants to fix the Pearls of this world is exerting it’s own strain and pressure on the very Professionals that implement it.The system wants to see they have effectively fixed as many people in as an efficient way as possible.
All this can lead, for the best motives in the world, to a society that sees disability as a problem, and fails to see the individuals behind the case studies.
So what can be done? As parents it’s important to try to keep a sense of who your child is and who you are as a family. This is really difficult when you are going through tough issues and being asked to make tricky decisions with little support.Try to get someone on your side, perhaps a professional who knew you and your family before you became “a problem”. Organisations like The Carers Trust, Carers UK or Contact a Family often have local representatives who can help you make sense of what is beneficial and what can be left until later.
A health visitor came to visit us, and was flabbergasted at how my week was structured, and how little support I was getting.I having become sucked into the Special Needs Vortex had lost all sense of what was a reasonable expectation of family life.
As parents you may have to sit on the naughty step and refuse to do everything-I’ll warn you, you may get a black mark.
Alternatively join me and other parent carers in learning how to look as if you have carried out all the therapy, while actually you have been cuddling your child as they watch someone on youtube unwrap a giant Easter Egg.
At the end of the day your child is part of a family,not a state funded research project.