Thursday, 26 May 2016

Job Description: Mother of a Disabled Child

This is a permanent post. 

HOURS: 168 Hours a week, 52 weeks per year. 
Time off: by negotiation with Statutory/Voluntary or Private agencies (NOT GUARANTEED) 
No experience necessary
No training will be provided

SALARY= £0 (Although Carers Allowance is available £62 per week subject to filling in long and complicated forms) 

JOB PURPOSE: To provide a full parenting service to a disabled child or children. This includes promoting their human rights, ensuring that all of their needs are fully met and that they take an active part in family life and the wider community 

ACCOUNTABLE TO: disabled child, other children & all them that wonder why so many of us don't work. 

  • The ability to love unconditionally (under extreme provocation at times) 
  • Boundless energy and patience 
  • The ability to work under immense pressure (sometimes/frequently with little or no sleep) Must be prepared to work anti-social hours, with no sick leave or time off in lieu. 
  • Physical strength (this role requires a lot of manual labour, well developed shoulder and back muscles are therefore essential) 
  • The ability to balance the needs of this child with the needs of other children, and family life - this could include combining this role with full / part time employment and/or study. 
  • A “Thick skin” - this role receives a lot of criticism, you will need to prepared to be stared at and judged by others around you at all times.
  • The ability to skilfully negotiate, advocate and mediate on behalf of your child - A good telephone manner would be useful) 
  • Excellent organisational skills (you will have to juggle a variety of appointments without the support of a secretary / personal assistant) 
  • The ability to multitask. 
  • Good networking skills combined with the ability to work independently and use your own initiative. 
  • Must be prepared to become skilled in non-verbal communication techniques and interpretation of body language. 
  • Must have an empathetic nature, (able to work with children / adults who may be distressed) A good sense of humour is essential. 

These skills will be learnt on the job and will be of distinct advantage to you and your child: 
  • An in depth understanding of your child’s condition, syndrome, impairment, this may include: 
  • Genetics
  • Autistic Spectrum Disorders
  • “Challenging behaviour”
  • Physiotherapy
  • Occupational therapy
  • Speech therapy
  • Sign language (Makaton, BSL) or other communication methods. 
  • An in depth knowledge of SEN law, procedures and codes of practice. 
  • A knowledge of: The Children Act (1989), The NHS & Community Care Act (1990), The Disability Discrimination Act (1995), The Carers and Disabled Children’s Act (2000), The Carers Recognition (and Services) Act (1995), The Carers (equal opportunities) Act (2004), SEN Code of Practice – And other relevant legislation. 
  • A good understanding of entitlement under these acts would be an advantage (see additional notes on legal issues, e.g. Complaints procedures, Ombudsman, Judicial reviews) 
  • Experience of working with other agencies, Statutory, Voluntary and Private including Health, Social Services and Education,
  • and attending meetings (with all, of the above, and an appreciation that you will have to repeat yourself, several times to each agency) will be a distinct advantage. 
  • A broad – base knowledge of local politics i.e. the holders of the purse strings. (Speaking at council meetings, writing letters to local newspapers, optional – but occasionally necessary) 
  • It is possible that if/when your child does leave home you may be overseeing a Direct Payment and managing an independent living scheme – skills required for this include a knowledge of Finance – DLA/ housing benefit and other benefits 

It is recommended that the successful applicant make contact with others in the same role; these colleagues will be a vital source of support by providing an unconditional ear, understanding, a shoulder to cry on and endless cups of tea (or occasionally something stronger) when / if required. 

Given the right amount of support this job can give untold job satisfaction and be extremely rewarding. But, much of this will depend on your ability to negotiate for this support. For this you will need to be:
  • Determined
  • Assertive
  • Proactive
  • Accept you are in a minority
  • Recognise diversity as a good thing
  • Accept that you and your child will be discriminated against throughout your lives and that from time to time you will fail to achieve your goals. 
Success in this role will see you grow in:
  • Confidence
  • Ability
  • Knowledge
  • And become a powerful advocate for your child. 

(With thanks to Judi for sending this!)

Tuesday, 17 May 2016

Don't ignore 823,000 people!

I, like many others, was very disappointed when the government decided to ignore the wishes of 823,000 people in this country, continuing to refuse the Meningitis B vaccine to all children under five.  This is despite the fact that many parents shared their harrowing stories of meningitis infections and many MP's lent their support to the petition.  

The Meningitis Now charity is now asking for us to add our signatures to an open letter to be sent to the government asking them to reconsider this decision.  This morning I have signed the letter with the addition of this personal comment, 

"My son, Adam, suffered a life-threatening Group b Strep Meningitis infection as a newborn and has been left permanently and profoundly disabled as a result.  While I fully understand that Meningitis B and Group b Strep Meningitis are different infections, having lived through any strain of meningitis once, it remains my greatest fear.  When deciding whether or not to save the lives of children, cost should NEVER be the deciding factor.  Please listen to the wishes of 823,000 people in this country and reconsider your decision."

Please join me in signing this letter, which you can find on the Meningitis Now website and lend your support to this campaign.  You can find the letter here: