Well, it had to happen sometime, and last night was it. I filled in my first form for Lil Z that asked me to categorize and list all her disabilities. And in the end, if I’m honest, I chickened out.
Go to any gathering of special needs parents and you will inevitably hear many, many complaints about paperwork. It seems that its an inevitable part of having a child with special needs. Caring for children with special needs is too expensive and too complex for us to do it alone. So, at some point, we need to ask for help – and that’s where the forms come in.
I’ve been particularly lucky in that I’ve managed to avoid most forms up until this point. Or maybe its unlucky since as “temporary residents” in Australia, we aren’t entitled to funding for much of anything. And the few services we have received were obtained through referrals from Lil Z’s lovely therapy team. As a result, the forms I am most familiar with are private health insurance forms, which have instilled in me a healthy contempt for private health insurance companies.
One of those referrals led us to an organisation that provides a range of respite and support for families with a child with special needs. What exactly they do remains a bit shrouded in mystery to me, as most of the information they provide focuses on their mission statement and philosophy of advocating and supporting persons with disabilities. How exactly they do this is never spelled out. Even their information night (mandatory for parents wishing to access their services) focused more on pricinciples than reality. Frustrating, yes, but after a few conversations with Lil Z’s therapists, I decided they’re still worth pursuing. After all, we don’t get many services, so it seems foolhardy to turn them down – even if I’m not entirely clear on what services they are offering…
At the end of the information night I was handed a sheaf of forms that needed to be filled out and returned to the organisation. In the organisation’s defense, they are funded by Disability Services Queensland and the Queensland government, so while a few of the forms were for them, other forms were undoubtedly mandated by the government.
Most of the forms involved the basics – names, addresses, phone numbers, if we are of Aboriginal or Torres Strait Islander origin, etc. And then it asked about Lil Z’s “primary and other significant disability group(s)”. I’ve never been asked this before and I’ve never given any thought to what might be Lil Z’s “primary” disability. Helpfully, the form provided multiple choice options:
- Intellectual – I refused to tick this box because at 24 months, I think its far too early to be able to determine if she has an intellectual disability.
- Specific learning / ADD – no
- Autism – no (although Rett Syndrome is sometimes referred to as being on the autistic spectrum, which I don’t fully understand, but anyway she’s tested negative for Retts, even though that seems to be what most of her doctors think she has)
- Physical – yes, although her physio is hesitant to diagnose her as hypotonic (although she’s got very poor trunk strength) or hypertonic (although she holds her arms very stiffly).
- Acquired brain injury – no
- Neurological, including epilepsy – yes. Her paeditrician seems to attribute most of her issues to neurological issues (i.e. stemming from the fact her brain isn’t developing as it should) so should this be the “primary disability”? Or, since her seizures are the one thing we can control (however fleetingly) with medication, is it not primary?
- Deafblind – no
- Vision – yes. I don’t consider it her primary disability, but we’ve got no idea how well she sees.
- Hearing – maybe. I got fed up with the Audiologist giving her tests that were beyond her developmental abilities, so quit going to appointments…
- Speech – yes. Probably not primary, though.
- Psychiatric – no.
- Developmental delay – yes. This is the one I chose as primary disability in the end since it seems to kind of encompass everything. However, there is a note on the form stating “only valid for a child aged 0-5 years” making me wonder what happens when she is 6; is she no longer considered developmentally delayed? And if that’s her “primary disability” then does something else become primary when she turns 6?
OK, so I know that complaining about having to categorize my medical and developmental enigma of a child is probably a case of me being over-sensitive. After all, its really just a tick box exercise (quite literally) so the government can declare “we supported 62 children with developmental delay in 2013”. And if they didn’t make it multiple choice there would be some low level public servant puzzling for hours, if not days, on the medical and developmental thesis I undoubtedly would have written if I’d been given the chance. And at the end of the day, the public servant would have chucked it in the “developmental delay” pile and the result would have been exactly the same…
The other part of the form that frustrated me wasn’t from the government, but the organisation. The question was “describe your goals, hopes and dreams for your disabled child”, followed by 3 lines. I challenge any parent to summarize their goals, hopes and dreams for their child in 3 lines. Yes, you could probably do it if you stuck to the big picture stuff like health and happiness, but I’m not sure the use of stating the obvious (are there any parents who don’t want health and happiness for their children?).
So, how do I answer the question? Well, are we talking developmental goals, emotional goals or overall life goals? Developmentally, I’ve got any number of goals – such as sitting independently, standing, walking, achieving some purposeful hand movement – that I’m working towards with her physio(s) and OT. I’d also like her to return to oral feeding – even if its just purees – so that she is less reliant on the PEG and can enjoy different tastes. Some day I’d like her to meet her uncle and have him make his famous garlic mashed potatoes for her (which Vegemite loved from an early age). I’d like her to be able to communicate (verbally, signing, or using an ACC device – the method is unimportant to me) so she can have greater control over her life.
Emotionally, I’d like her to interact more with other people. I’d like her to be able to cope with her surroundings enough to be able to travel (even if its only a weekend away) and enjoy new experiences. I’d like her to have a close and loving bond with her sister that isn’t soley initiated by Vegemite. I’d like her to smile often and I would really, really like to hear her laugh.
Medically, I’d like to get her seizures under control – and for a long period of time, not just a “sweet spot” of a month or two. I’d like her to be robust enough to withstand normal childhood coughs and colds and other infections without them resulting in hospital admissions. I’d like to replace her PEG with its dangly tube that catches on everything with a mic-key button, which will be much easier to deal with.
Hopes and dreams? There are too many to list. I hope to get an assistance dog of some description to help her cope with her environment, alert us to seizures, and be a friend for her. I hope that the two of us can become a dedicated running team and compete in a few races each year – something fun for us to do together. I hope she makes great developmental advances in her life, attends a school where they cherish and nurture her, and achieves a level of independence and control over her own life. I hope she has friends. I hope she always has doctors and therapists who truly care about her and work hard to improve her life. I hope she lives a long and fulfilling life.
Or we can talk short term hopes and dreams. I dream of a week where Lil Z isn’t coughing and vomiting every day, where her feeding tube doesn’t come un-clamped and dribble the contents of her stomach all over her clothes, the carpet and me when I pick her up. I dream of being able to move her in and out of the car without my back aching. I dream of being able to go shopping and not have to ignore the stares as Lil Z decides to bang her head on the seat of the pram in an attempt to get it to go faster… I dream of having enough time to do all the exercises that the physios, OT, and speechie have recommended I do with her.
In the end, I put something benign and meaningless about health and happiness on the requisite three lines.
So, I chickened out and didn’t fight the system. But I’m hopeful that this organisation might be able to provide some needed support to Lil Z and the rest of us. What form it will take remains to be seen, but with all our goals, hopes and dreams, they should be able to find something to do.