I belong to a secret society of drinkers. It is an elite club and one I have belonged to since I had my children. Whilst this opening statement sounds like a declaration or admission you would expect to hear from a frazzled worn out mother at an AA meeting it is more a desperate cry for change and greater awareness – for ours is a group that use alcohol (or chocolate or any other comfort food really) as a crutch to help us through the filling in of a form. Yes, a single form.
It is in reaching for a pen and the thick document to begin the process of completing this application form that the urge becomes overwhelming. Yes, I am a social drinker. However, in my usual day to day life I don’t rely on substances, food or alcohol to help me through the day.
However the ritual which is the filling in of the Disability Living Allowance forms for my sons, both of whom are profoundly deaf, has me reaching for a glass of white wine and a box of tissues.
Whilst my husband braces himself for the torrent of emotions he knows come as standard on these occasions. It is a scenario which is mirrored in many other homes as parents navigate the numerous pages in a bid to adequately describe their child, for I am not alone in feeling this need for something to fortify me through the hours it will take me fill in every section and box.
Disability Living Allowance forms are the way in which adults with disabilities and parents of children with disabilities apply for a contribution from the government which is for ‘the extra costs of severely disabled people’. This may to people observing from the outside to be a way of getting additional benefits for a slush fund to finance fancy extras. In reality there are a slew of hidden costs, extra petrol, additional equipment and unexpected costs associated to hospital stays and appointments which add to a monthly budget quickly.
Being given this contribution makes a whole world of difference to some families where the parents need to make difficult decisions to cut working hours, thereby reducing their income, to accommodate the extra care their children need and the hours spent in appointments or therapy/rehabilitation sessions. Amounts of time, hours and hours, which mean you either require a very understanding boss or a day which holds more than the standard 24 hours – and even Jack Bauer never found one of those! The difference this contribution can make for some families is a matter of survival as they juggle all the elements of their daily life.
The forms cover such a wide range of disabilities that it can be difficult to find a way to use the sections given to describe the challenges your child faces in aspects of their daily living and mobility. It is frustrating to feel that whoever created the form must never have met a deaf child or has no understanding of the complexities deafness can have in the care of the child. I am sure that many other parents of children with different disabilities must also share these experiences in the way in which the form is set out – it is not only awkward for us. There inevitably needs to be subsets added into the form, in ink, where we scrawl a different set of circumstances which affect our children’s needs as well as the set printed onto the form originally. Throughout there are phrases you find yourself using repetitively to the point that they run through your subconscious like a mantra as you try and switch off even after the form is complete.
It is, however, the actual need to fill in the form and lay bare the worst of your days, the level of your child’s needs and just how difficult life is for them and consequently also for you as their parent that provides the worst pain of this process. The detailing of how far removed your child’s abilities, independence and day to day life is from the life most children and young people live is the equivalent of being faced with a billboard covered in six foot high letters placed outside your front window where you cannot ignore its existence.
To move forward on a daily basis in a way which promotes the achievement of your child’s potential you find as a parent that you cannot focus on the difficulties or how hard life is for them and those supporting them. You instead find the positive, take each day as new promise and hope that they will have a good day where a skill will be mastered or an obstacle overcome. These forms push aside all of this and take you back face to face with what you and your child fight against every day – forcing you to meet it head on to prove the level of care necessary to qualify for the support many families so desperately need.
So often though if the forms do not plumb the full depths of how difficult some children find life, and even sometimes when it is, the form is returned as not qualifying. I have heard many parents comment on hearing this negative response that ‘if only they had them for 24 hours’. The response perceived as dismissing all the care the parent provides for their child on a daily basis and seemingly counting as insignificant the appointments, pre planning, adjustments, consideration, liaison with professionals, hours of worry and anxiety that parent has gone through with their child. For some this judgement is absolute and they take it as final. For others, those advised that this is an inaccurate response, they go on to beg for re-consideration – a process many find humiliating.
I appreciate the need for weeding out those who would make false or exaggerated applications however in completing the countless pages of the forms to prove that your child has needs which are ‘substantially more than a non-disabled child of the same age’ it goes against all the natural parental instincts of looking at what your child can do rather than what they cannot. As a parent you praise their tiniest gurgle, sound, facial expression or attempt at moving from the moment they arrive into this world and are placed in your arms. Further, as a parent of a child with difficulties that is where you see the rewards and gain motivation for continued momentum. It is there in all those additional small steps of success which our children go through on their way to the big ones which most children hurtle through. To pull apart the achievements and success to reveal the scaffolding you put in place as a parent to enable them to happen takes away some of the illusion, ruins the magic of those moments.
I guess what I am asking for in sharing this story, and my associated need for a nice glass of chardonnay, is a reprieve. An overhaul of a system which would allow us parents to preserve that illusion and believe in the magic that each of our children’s small achievements bring – for that is our fuel, the source of our drive and often the very thing which helps us to continue day in day out. A revision to this existing process, which would no longer require repeated applications pulling apart of our children’s abilities to justify their need for this contribution. For after the form is completed, sent off and has landed on someone’s desk for their removed and impersonal consideration, the parent of the child will be waking up each morning- on duty as ever and ready to face the day’s challenges and worries – needing to believe in and draw strength from the positives of what their child can do and can achieve.
Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing (buy her book Meanwhile I Keep Dancing here) running the Wirral Deaf Children’s Society (with her friend Lisa) and raising awareness regarding deaf issues wherever she can.
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