Saturday mornings at the Suares farm have involved a ritualistic coffee-in-town session for many years, sometimes including hedonistic brekky out – and often catch ups with the now grown children and cuddles with a grandchild or two or even three or four. But our most recent weekend coffee will stand out in my mind for years to come; and I’m pretty sure there will be only a handful of other mums and dads who have any idea of the sheer joy that unfolded.
Mia’s communication difficulties are complex and multilayered, encompassing cognitive impairment, dyspraxia and significant hearing deficits. From early childhood she clearly demonstrated a will and preference to speak despite how frustrated that made her. We were told that she would probably never talk or be able to communicate effectively. Intuition told me differently; and mutual determination has proven me right (and boy, doesn’t that feel good!)
Mia communicates via a suite of options – from Makaton signing, Cued Articulation, made up hand gestures and a growing number of spoken words usually used in isolation – but effective enough for people who are very familiar with her to ensure her needs are mostly understood and met. As the most attuned person to her idiosyncratic methods, I have always been concerned that she be able to effectively communicate to as broad an audience as possible; both from the perspective of her independence and ultimately her safety. One day I won’t be here, and it concerns greatly me that she is able to tell someone if she is unhappy, is being abused or wants things in her life to be different.
It is, and will continue to be, exceedingly difficult for people with complex communication issues to reap the rewards of our brave new NDIS world of Choice and Control if they are not provided with the opportunities to develop their skills. And so it was that Communication was flagged high on our list of goals in Mia’s first NDIS planning session. During childhood speech therapy had been provided sporadically, chiefly due to the lack of speech therapists in rural areas, but also I dare say due to the significant challenges someone like Mia presents. There were never going to be quick easy 12 week fixes – developing effective speech was always going to be a lifetime of work, effort, encouragement and commitment. Mia’s first NDIA plan included speech therapy and we were able to utilise the services of our chosen therapist to undertake an initial assessment and then participate in further sessions following an agreed plan. A key support worker took on the role of central facilitator within her work and accommodation support services, and has been instrumental in the developing resources and encouraging both Mia and others in her circle with her speech development. Slowly but surely we heard progress.
However, every year as her NDIA plan is reviewed we have had to argue the case for this particular support to be maintained in her plan. Twice it has been removed “because we don’t fund ongoing therapy”; we lodged appeals and it was reinstated. It would be costing more for the various bureaucrats involved chasing down their rabbit holes to complete the appeal than what it does to fund the therapy – but then, I’m just a tax paying farmer so what would I know about efficiency or cost/benefit analysis. Anyhow – I digress – back to the coffee!
Last Saturday morning as we were driving into the local shopping centre carpark she turned to me and said “Can. I. Have. A. Coffee. Please. Mum?” Completely unprompted. We both burst out laughing, and then as I tried to concentrate on parking the car I found myself shedding quiet tears and trying desperately for her not to see me. Tears of joy, and relief and exasperation and joy all over again. I knew that she could do this, and I had always known she could do this – and yes, we went and ordered mugs of latte!
Later in the morning we were sitting waiting for a radiology appointment, an annual event post thyroid cancer and possibly a contributor to my heightened emotional state. Mia’s Dad was meeting us there to sit with her while I had the scan done, and I asked her if she could tell him what she had said earlier. Repeated without a blip – except that she added “And. Can. I. Have. Lunch. With. You. Dad. Please?” I’m sure I spotted the glisten of a tear in the corner of her Dad’s eye – at age 37 Mia had initiated a Dad date and she was so very proud of herself.
There has always been the naysayers – the therapists who insisted on pushing the use of compic boards that she hated and which usually ended up pitched against the wall, the special-ed teacher who constantly told me that ‘she will plateau Jacqui, and you should not expect too much’’ and the NDIA planners whose internal eye rolling as we unsuccessfully petitioned the need for ongoing therapy did not go unnoticed. But there has also been a far larger and more important band of teachers, support workers, therapists, friends and family who have encouraged and rejoiced in every tiny milestone on our talking quest.