A fat brown envelope stares at me from across the kitchen table. By rights it should be at least 3 feet high, the papers it contains so saturated with tears in their making that, like a surreal paper towel advert they have expanded and grown into a distorted weave so engorged with water that a single touch will result in a mini waterfall.
I am staring at my own personal nemesis of the past 12 months; my son’s finally completed Disability Living Allowance re-application.
What an eternity of agonising I have spent just trying to sum up the courage to answer these invasive questions. Countless times I have seated myself at this self-same table and managed only to open the first page before being convulsed by shudders. I have nothing to hide and everything to gain by completing the form and ensuring that both J and I receive the support we are both entitled to and so desperately need. And yet, so contrary to appearances, like soft cotton clouds that look so firm from above and so hopelessly vapourish when you pass through them, I have lost much in the very process of asking for help.
This form is the metal scourer of forms. A tough, unsympathetic detergent seemingly designed to bleach away any pretense of coping, annihilate positive experiences and drown any hints of progress in an endless recital of needs and disabilities. It is a litany of all that J can’t do, of all that he does that requires additional help; a hellish underlining in bright red ink of all the differences between him and his peers.
It is a necessary nightmare. My reason tells me that this is right – that to assess need one must determine what is wanting – but my heart recoils and my head feels like it will implode with the reality of his complex needs.
Innocent and innocuous, you would barely look at this form twice in passing. But like a silent assassin, it has fired bullet after bullet into the foundations of my coping strategy. I can’t pretend it is prudent, I can’t tell you it is healthy but J is my son, and I love him, and I cope with his disability by effectively trying to pretend it isn’t there, or at least dispel it from my quotidian psyche. Every morning I get up and start again, each day a mille feuille of good moments and challenging that, once consumed, leaves no lasting after taste except perhaps fatigue and occasionally a gem of a memory such as an impromptu disco with his baby brother or a particularly clear sentence or phrase that is unusually age-appropriate.
To be in denial about your child’s disability cannot be healthy but with two other little ones to care for, time and circumstance do not always allow for a closer examination. It’s a catch 22 situation – by riding over his disability J fits in better with the family and we work with him, around him and sometimes in spite of him. But he is at one with us. Yet is it fair to him to reduce his needs in the name of normalisation? At what cost does inclusion come? The truth is that J does need far more practical help than his peers and where a tender word or gesture might suffice for his brothers, J needs constant repetitions, reassurances and most challenging of all – time. He needs about ten times the amount of time than 5-year-old C in order to address personal needs such as toileting, feeding, bathing etc. and more time even than his baby brother T in order to manage tantrums and moods and ensure his safety.
This form has brought to attention what is perhaps better left to collect dust in a quiet corner of my mind. But denial of J’s special needs has weighed me down for years and quite literally kept us and him from a relative abundance of cash that he is perfectly entitled to. I don’t want to know all that I have to do for J because knowing won’t change his disability but making me feel a martyr might well end up disabling me. But I accept, finally, that I do need help and so does he. As a parent I have to love J as a whole, Down Syndrome and all. But this form is top-heavy on the Downs and I can’t wait for these re-opened wounds to heal over so that I can go back to viewing J as my son and not as Disabled.
For the moment I’m an expert in listing J’s needs. I can tell you how many times a day I have to do this or that for J and for how long. And how many times during the night. I can regale you with his inabilities, bludgeon you with his troubles and, like a child’s peg and hammer board leave you all beaten down and deflated. Deflated, that is, until a red-headed little fellow marches up to you in the street, dazzles you with a great beaming smile and asks you how you are and, if he even suspects that you are feeling low, takes your hand and chatters you into cheerfulness before you’ve had a chance to blink. Now where’s the box for that on the form?
sophiahc 