I was talking to a stranger the other day and inevitably she asked all about Ella’s condition. I answered her questions honestly, as I always do, saying that Ella is doing really well, and surpassing many expectations! But when she prompted about the future I explained that Ella will always need full-time care.
At the end of the conversation she said that she’ll ‘pray for us’ so Ella might surprise everyone and I need to be more positive.
Honestly, I haven’t been able to get the conversation out of my head, I didn’t really realise at the time, but that’s actually really rude. Not only am I not religious, but this woman knows nothing about me, nothing about Ella’s condition and nothing about my attitude (whether positive or negative)
Usually with my blog posts I have clear thought that I want to get across but this time I’m not really sure, I know that conversation rubbed me the wrong way, and I’ll try my best to explain why.
It seems to me that most people don’t realise that some ‘special needs kids’ grow into adults with disabilities, adults with mental handicaps, or the disabilities you can’t ‘see’ No catch phrase, no fun drives or cute hashtags, just regular adults with disabilities. The ones you avert your eyes away from in public, the adults you try your best to act normal around, but when they ‘make a scene’ you feel uncomfortable.
I know, just like anyone else, I can have my moments of being negative, I get what I fondly nicknamed ‘the sads’. At best, I generally have a little pity party for one, (wine and tears mandatory) and I move on quickly. But for the most part, I love to look on the bright side, I used to say that my blood type matched my personality (B positive! said with all the vigour of a first year cheerleader) When talking about Ella I always boast about how far she’s come and how well she’s doing. But I’m not going to lie about the reality of it to make anyone feel better.
A lot of people assume that Ella will ‘grow out of it’ – My own mother didn’t realise until recently that this is our life, for ever. While Ella’s disability isn’t as severe as some, and I am grateful for that, but there will come to a point when she has reached her potential, and being honest with myself about it isn’t a bad thing.
Ella will always need care, she won’t live independently. She won’t finish school, manage a bank account, move out of home, get a job, get married, have children etc. And for a long time I didn’t think about it – but now I’m ready to, and I have to.
It’s not me being a downer, or looking for sympathy or being negative. It’s reality, and it’s what I, and many people like me, face.
I just can’t bury my head in the sand banking on fairies and rainbows or ‘thoughts and prayers’ that Ella will be the only exception to the rule. It’s cold hard facts and I have to look at it realistically because I have to plan for her future, and help her adapt to the world as an adult with a disability. Yeah, it’s cute now if she runs and hugs complete strangers, or kisses people. But when I tell her she can’t do that, don’t smile and say ‘that’s ok’ – I’m thinking of the 18-year-old version of her. Not only will it not be ‘cute’ if she’s 18 and still kissing strangers, but it could potentially put her in danger. So I need to teach her now.
And the questions I need answers for: What’s going to happen when Ella finishes school? What programs are available for her? What’s going to happen when Joel and I die? What services are available to help her once she ‘ages out’ of the ones she gets now? How do I get a physio, an occupational therapist a speech pathologist if she still needs them? What do I need to do when she turns 18 to be sure she won’t be taken advantage of? What happens when I’m too old to look after her physically? Where can she live if I’m unable?
These are all things I need to at least have an idea about, if not have an actual plan in place. Not only for my own peace of mind, but there’s the financial cost to consider. We need to put certain things in place now, so that she wont fall through cracks in the system when I’m gone. Adults with disabilities are more at risk of becoming homeless due to lack of resources and lack of ability to advocate for themselves. Who knows where Ella could end up without a plan in place.
I know there are homes available for children and young adults with special needs, but in the country a lot of young adults, whose parents are unable to care for them, unfortunately end up in aged care facilities because there’s just nowhere else for them to go. I don’t want that for Ella, I want more for her and I’ll do my best to ensure that she gets that and it starts now.
So I guess my point is that while it might seem negative to others, for us it’s just a fact of life. It’s not good, and not bad, it just is. And for people to glance into this tiny window of our lives and say I’m negative, or say “oh, you never know/god works in mysterious ways/stay positive/etc” is just downright insulting. I know Ella can be capable of so much, and what she has achieved so far is testament to that. I will shout it from the roof tops how proud I am of her and how much she has achieved – that doesn’t change our reality.
You can hope for sunshine, but still take a damn umbrella.