My little girl is a person, not a virtual PPS number
Having read Brendan O'Connor's article on giving children with disabilities their voice, Dublin father Dave Lawlor was compelled to write this letter about his daughter Grace, who cannot speak
Published 05/06/2016 | 02:30
Our daughter Grace is a gorgeous eight-year-old girl who lights up a room when she enters. Grace is active, inquisitive and funny and cares about her family and friends. She has a rare genetic condition resulting in physical and intellectual disabilities. Grace fell last year and broke two bones in her arm. We didn't know this because she continued trying to find her ball and then started playing. We didn't know her arm was broken because the genetic condition she has can result in a significant pain threshold. I can still see the shocked and incredulous faces of the excellent doctors, who had watched her play, when they viewed the X-ray images. We didn't know her arm was broken because Grace can't speak.
Grace attends St Michael's House, a super organisation providing schooling and other services to individuals with disabilities in many areas. However, St Michael's House is being screwed financially by the HSE. Even now, as a young child, Grace and others like her are not seen as people but as virtual PPS numbers with associated budgets to be manipulated at will. Budgets have been slashed in recent years to the point where the delivery of speech and language and other therapies is severely restricted.
Therapists, SNAs and teaching staff are excellent and do what they can to ensure their charges progress to the best of their abilities. However, open positions are left unfilled, therapists struggle with a lack of resources and parents are, as Brendan rightly pointed out, being asked to become front-line speech and language therapists due to the void created by budget decisions.
This brings more guilt down on parents. Can you imagine the stress of trying to save for private speech therapy sessions, getting through normal family life, minding your partner and now, in the dark of night, you get to feel guilty because you believe you are not improving your child's speech as much as a qualified therapist would?
Think of the arguments and grief as one partner attempts to console the other that they are a great parent doing a terrific job for their child. All this set against the ticking timebomb of 'early intervention'.
However, it is in open society that her lack of voice really hits home. I have lost count of the number of times I have choked as other children stare at, and then walk away from, Grace because she can't speak, or how others will shout at her because they are nervous or see her as different. I have watched the faces of mature adults as they stare at Grace, to the point of rudeness, and then avert their eyes. If they only knew how she loves people to say hello and engage with her.
She is a loving, warm child and the absence of speech is a hugely significant block to general acceptance in society, never mind friendship. Will it impact on love later in her life? Maybe, but hopefully she will have the love and companionship she deserves.
Grace is adored by her family and they do all they can to ensure she is safe and well and stimulated. We are trying to build her skills for independence in the future. However, the future is stark. We will not always be around to mind her or advocate on her behalf.
Do we believe this nation will mind her properly? To be honest, no. We are fearful for her future. If the State makes it so difficult for her family to advocate on her behalf, what will they do to her as an older woman who can't speak for herself?
The constant struggle to be granted allowances and benefits and the subsequent battles to retain them is a story of petty decisions that reflect real life for us. Grace has lost her medical card, not because her condition has improved, because it won't; this is a lifelong condition.
No, Grace lost her medical card because daddy earns too much, according to the HSE. They don't care that her mother has to go to work to make ends meet, thereby impacting on Grace's care and progress at home. God forbid an individual with a lifelong condition would be granted a medical card for life in this wonderful nation of ours. However, thankfully, the bankers and investors are getting their money back and are okay, because that would be a real tragedy, with real economic impact.
I am not moaning. We are blessed to have Grace and she makes us better, more aware people and we will continue to do what we can to set her up for life. It is just that I am fed up with this crap; fed up feeling powerless to help my little girl or my wife and son who have to deal with this as best they can.
I am scared for my little girl and the future she faces into. I need to vent and you are it!
You have opened a door Brendan, and I am starting to shout. All I want is for my child to speak. She may never speak but that does not mean she should not be afforded every opportunity to develop speech if possible.
I can't adequately describe my utter disdain for the HSE decision-makers and government malcontents who have created an environment where parents nationwide can't sleep properly at night for fear of the now as much as the future, so I will leave it to Grace. Oh, sorry, she can't speak.