I've heard it a few times, people telling me that Kaylee does not look like anything is wrong- other than the tube. But as she gets older it is likely to become rarer that people say it. It will become harder to miss.
I remember talking to another Heart Kids Mum whose son has been in and out of hospitals his entire life and declared inoperable more than once. She has fought hard to keep him alive, happy and comfortable; getting second opinions when she was told that all hope was lost, chasing nurses to make sure he had his meds exactly on time, finding babysitters for her other sons and dropping them off before getting him to the hospital just in time for him to crash. She said to me that in some ways, it's not so bad. When things are going bad they are awful - but when things are good it is all normal. She told me that she thought having a child with "one of those syndromes" would be so much harder because every day you have to deal with the syndrome and all it entails. You never get normal.
I've thought a lot about her words and I have come to the conclusion that it is pointless to compare monsters. Those whose needs are visible fight pity, condescension and rejection. Those whose needs are hidden face misunderstanding, judgement and disbelief. And all of us grab the positives and hold them tight, not wanting to imagine life without them.
It has been many years since I have looked at a child in a public place and judged them and their parents. I never was one for the "My child will never....." speech and now that my kids have done pretty much everything I pretty much just shut up about it. I am even less inclined to pass judgement after hanging with the "special needs" crowd for a bit. The child having a melt down who looks like a spoiled brat could be dealing with a sensory system that completely flips out, could be exhausted and at the end of their tether after their sibling disappeared into hospital for two months, could be trying to cope with a world whose social cues are baffling and incomprehensible to them or could be in an extraordinary amount of pain and discomfort for large portions of the day, undergoing painful and debilitating treatments to keep them alive. We. Just. Don't. Know. Because so many special needs look....normal.
I have spent most of my life living with and/or loving people
with chronic illness or pain. People who LOOK fine, who can even
function "normally" most of the time, then without warning be vomiting and weak or bedridden with debilitating pain. At first people are concerned but then, after days, weeks, months or years, sly comments start to be made about hypochondria, being a "sook", just "getting on with it". Even, and sometimes especially, doctors and nurses hold these attitudes. Because they don't look sick they face judgement at a time they most need help and understanding.
Growing up my report cards continually had 'lazy' on them. 'Does not try', 'needs to be more motivated', 'does not listen', 'will not complete set tasks'. The strange thing is I am actually a workaholic. My personality gives me a tendency to become obsessive. When set on a goal I find it hard to unplug and will work at it with every fibre of my being - to the exclusion of eating, sleeping and basic personal hygiene if I let myself. I have to bribe myself to take a break. Looking back now I see a girl who struggled to decode and remember instructions. I would have them in my head and then five minutes later they would be gone - much to my frustration. I remember saying to teachers and other adults in my life "Can you please write that down to help me remember?" and they would prickle under the increased work load and refuse. And somewhere between them telling me and me sitting
down I would forget. And I started to believe them when they said it was because I was lazy, vague and did not try. I remember cluttered worksheets blending together in a swirl as I tried to find a handle I could use to understand numbers - then giving up and retreating to my world of books and words which made infinitely more sense to me. Looking back now I see a kid with mild dyscalcula and possible auditory processing issues.
I manage it now. Because I have worked hard to understand these issues I now know how to make my brain take detours around those parts that don't work well so I can function in the "real world". I research things myself until I understand them thoroughly because I usually don't retain what people tell me. It is like my brain mis-files it somewhere between my short term and long term memory. I ALWAYS have something to write in while I am talking to people in the hospital and those I work with regularly have learned just to give it to me in print wherever possible. I cover a lot of my little quirks. Most of my friends think I'm being funny when I take something said in jest literally - most of the time I will click a couple of hours later that they were speaking figuratively but in the conversation I instinctively cover my slips with cracks and jokes and witty comments and sometimes I just say weird stuff, the conversation gets a little awkward then we all move on and pretend it didn't happen. This is probably why
I would not class myself as having special needs because I function reasonably well in the world without others having to accommodate my needs now. I'm not actually special, I'm just quirky. But I remember the frustration of wanting to understand and fit in, trying to get the adults in my life to help me to succeed and finally accepting and applying to myself the label "lazy".
Take that, times it by a million, double it and times it by ten and move the decimal point eight places and you have a tiny speck of what I imagine those with special needs that aren't visibly identifiable to the average person face daily. People whose struggles with autism are belittled because they "look so normal". People whose illnesses or differences are written of as laziness or hypochondria.
Kaylee's diagnosis was made within a week of her birth. Many people take months if not years to get a label they can write on forms. Months and years of dealing with a sick child with no idea of what is coming next. Months and years of wondering if this is something which will dramatically reduce their child's life expectancy. Months and years of battling with doctors and red-tape-makers who think they are just being "over-dramatic" because there is no nice, neat diagnosis that attracts funding, support groups and research.
The visability factor doesn't make things easy by any means, the struggles are markedly different but they are still there. Wherever we go we stand out. I can't take my kid to the shop without people reacting in some way to Kaylee's tube. Most of the time (because she is all cute baby and chub) people are polite and curious. As they notice her tube and hear our story some people are horrified, shocked or awash with pity. There are days when I do wish that they only thing they would notice is her eye lashes and her hair. As much as I love teaching people about my girl and kids with special needs - there are days I would like a day off from being "special needs ambassador" to just be Mum, Dad and Kids hanging out together. But we are still at the approachable end of visible special needs. We are approachable, non-intimidating. She is cute. If she had a few less fingers or limbs, if her scars were on her face or head instead of hidden under her shirt, if she compulsively waved her arms in front of her face, if she was at the age people expected her to talk, walk and use a toilet and she didn't. Who would want to know her story, who would want to know her?
I generally do not try and read Kaylee's story before it is written but in all likelihood she will look different. In all likelihood she will act different. I will do my darndest to change the world before she gets into it. To change it to a world that does not judge people who do not talk as having nothing to say. To change it to a world that does not judge those who think slower, think different, as having no worthwhile thought. To change it to a world where people do not look at the weak, the broken and the less able and feel afraid. To change it to a world where people are valued and needs accommodated. Because they are NEEDS not seeking favouritism or creating inconvenience.
But if, by some strange chance, I do not change this world. If I do not roll out a red carpet of love and acceptance for her to walk in this world. I know that whether she looks different, or just is different, this world is a hard place to live in.
So please....change the world with me.