warning... It's a longy......
I’ve been buried under several strings of Christmas lights of late and find it hard to sit down and write at the moment but I’ve got something on my mind today and thought I should really take advantage of the 30 mins I now have to either scratch my writing itch or do the housework...... Not really all that hard to decide for me. Writing it is.
Along the newly blogging way I’ve given a fair bit away about myself and my family life and shared that I write functional stories for children with special needs that highlight their strengths as well as their everyday needs so that their own support network is also supported with the knowledge about how to relate to these beautiful kids.
Whilst I’ve given lots away about myself I’m not sure if I’ve really laid every card out on the table. I’ve said I’m passionate about my work and that I feel privileged to be able to share the joy of the kids I write for. I have not been all that forthcoming with the sadness I also feel or the nagging guilt about why I find myself on this path in the first place.
It’s only a matter of time before this nagging comes to the proverbial head though and if I have not worked through it at least partially I fear that it will not be all that pretty for me when it does. I’ve been doing a business development course with some brilliant women over the last few weeks with the aim of really expanding my special needs resource business further and time after time I’ve tripped up on my answers to why I charge so little for my books and other items. Time after time I explain that I need to keep the prices low for the families because I am in the same position that they are and understand how hard it is to decide where you need to put your limited amount of money when sifting through all the therapy and aid options out there for kids with limited life options. Of course this is true and I still believe this but I also find myself confronted with the overwhelming reality that the other reason I don’t charge high prices (or even prices that would return minimum profit) is because I don’t think I am worth it. It has nothing to do with what I think the product/service I am making is worth. I believe the education and awareness raising benefits for our children’s support communities is indeed worth much much more than what I am charging but the crux of the matter is that I don’t think that I am worth it.
Not only is this confronting for me it’s shocking. During life B.A. (Before Autism) which is almost a previous life in my consciousness now, I was one confident lady. I knew I was a dynamo and presented myself as such. Inside and out I carried myself with my best foot forward and I charged my clients what they should pay to receive my outstanding work. There was no issue about what I thought I was worth, I was honestly quoting on what people needed to pay for me to work for them. I was a published writer and an accomplished public relations consultant that was admired by my peers and respected by my clients.
That was B.A.
Autism gave me an enormous kick in the guts. The wind was knocked out of my over inflated sails. Gutted and deflated instantly. I no longer felt the slightest bit like a dynamo, super mum, wonder woman, June Cleaver, Carol Brady, Pippa from Home and away or even Rosanne Connor on a bad day.
I’m going to put it out there. I’m going to utter the underlying pain, doubt and pondering of any and more than likely every parent of a child with any type of special need, developmental delay, physical disability.......... Was it my fault? Was it something I did? Was it something I did not do? Is it my fault?
Please don’t get this confused with me not loving my boys exactly as they are. I would have 10 more just like them if I was young enough, energetic enough, wealthy enough (this Autism thing is expensive), fertile enough and young enough (yes I know I already said that but let’s face it, I’m getting a bit long in the tooth to consider 8 more kids of any variety).
I celebrate my children for their strengths, their infectious joy, their incredible bravery and for the unstoppable gusto with which they take on the confusing world around their very pretty heads (oh I know I’m being biased and indulgent now but believe me, they really are pretty pretty boys. So beautiful to look at that some days it actually catches my breath and right now I’m glancing at my ever present photos of them and there’s a lump in my throat. They really are that beautiful. Well at least to me and the many other besotted admirers they have collected along the way).
So anyway, yes I celebrate them, accept them, am inspired by them and I truly believe they have made me a better mother than I thought I could possibly be but...... Their lives are hard. They have incredibly difficult existences. Everyone knows I go overboard to make their lives as easy as they can be in any kind of environment I can control but the fact remains they are a minority in a really frighteningly unsympathetic and overwhelmingly unaware majority.
There are no physical characteristics that set my kids apart to alert strangers that they have a neurological difference. This is where my ever present bellowing loud voice constantly banging on about Autism awareness was born from. The need to explain to society that difference does not always in fact look different. It’s my plea for the creation of a Utopian society where my boys and the many other kids like them will be ok when I’m not around 24/7 being their own personal, exhausted cheer leader (well I’m taking on enough at the moment to be considered the whole cheer squad really in reality).
I’ve found myself on the train to my business course these last few weeks avoiding eye contact with the weird bloke getting on by himself and looking for a seat. I have found myself judging the students around me based on appearance and who looks like I would be compatible with to chat with over lunch and in the group tasks. I’ve found myself feeling annoyed by the teenager at the station singing along with his mp3 player oblivious that it’s not really socially appropriate to sing loudly and out of tune in fellow commuters ears.........
All of this is also confronting for me. These weirdos, socially inept or badly presented people could be anyone with any issue. These people could be my sons when they grow out of the cute phase where you can get away with some behavioural stuff and social gaffs because you are so darned cute to the adults that steer the course of your strictly routined and completely structured life. More confronting is that there will definitely be people who will judge them too quickly and without all of the information if their own mother is guilty of doing it too.
No matter what I do now. They will have difficult lives with this fact being inescapable. This makes me sad. That is also an inescapable fact. In turn this makes me feel wracked and almost crippled with guilt.
I can already hear you frantically typing your responses that it’s not my fault, it’s nothing I did or did not do and that guilt is a wasted emotion. I repeat these same platitudes to myself (and others) every day. Does not help and if you take a minute to put yourself in my shoes or if you are a mum in the same well worn shoes as I wear in our world of govt depts, therapies, lists (oh those bloody lists), early intervention, disability payments, paperwork (oh that bloody paperwork).... If you take a minute to consider if you can possibly put yourself in my place no matter how confronting that may be or how heartbreaking it is to contemplate even for a moment in time that YOUR child has a hard life, a confusing life, a life with perhaps pain (mental, neurological, social or physical) associated.... If you live truly in that minute in those shoes..... Go on try it...... Could you so easily dismiss your protective mother lioness feelings? Could you so easily brush off your potential role or blame (no matter how miniscule the actual likelihood it was you to blame) in the hardship you so desperately do not want to see your child ever face?
Don’t we all just want our kids to be happy? Isn’t that what we say when they are born? I just want my kids to be happy.
I tell myself my kids are happy and they certainly appear to be as such when you peek into their world of giggles and Thomas characters and hide and seek with one another. They really do seem happy. I was convinced that even though I have sad days (let me know if you are reading this with more years under your belt than me if those sad days ever go away completely because boy oh boy, are they a killer). I don’t have too many of them anymore. I think this is because I thought my kids really were happy, that I still feel possibly to blame that their life would potentially be hard but it is getting better because look, I can see we are beating the odds, I’ve managed to come up with the perfect Autism formula to say “F*ck you” to the stereotype of an unhappy and anxious child lost at sea in a confusing society. If I can get this formula right I will start to think I am worth it again. If I can just beat the odds a teensy weensy bit more I promise I will be worth it again in my own mind...... I read “The Little Engine that Could” quite a lot to my boys and I think it’s as much to prove to me as to them that the power of self belief can help you achieve absolutely anything if you only think you can...
Thought I could. Thought I had the winning formula....
Today J was crying in the car after we dropped a Christmas gift off to someone. I was frustrated he was crying and tried to rush him back into the car because it was raining and I was getting wet and cold, I tried to skip all the necessary rituals he needs to make himself feel safe and secure in this confusing crappy world of changed routine and bloody Santa coming (how do you explain Santa is fine to be friends with and it’s ok to sit on his lap but strangers are unsafe to a child who needs rules to live comfortably... How do you keep changing the rules and help him understand them)? I rushed him and wouldn’t let him do his necessary three revolutions of the car, his leap into the front seat to touch the same 3 radio buttons every time he enters the car and his leap back into his own seat then ready to “put your bloody seatbelt on.” Nope. I rushed him and made him skip all his rituals.
He cried. I yelled. “Why are you crying?”
J answered, “Because I’m worried.”
I probed for more information but in honesty not out of a need for understanding on this occasion, it was more a need to exclaim my own frustration in a highly tense moment. I exclaimed, “What on earth is making you worried?”
His answer which will forever be remembered always as one of those heart ripping moments and will add to my metaphorical bucket of guilt...... “You.”
Again..... here it is again...... “What on earth is making you worried?”
For a child who is considered to have a communication deficit he made it crystal clear that I could wax lyrical all I wanted to about how evolved I am and how I can be worth it again soon in my own mind and let go of any guilt or pain if I just I continue to develop this amazing understanding of his needs but unless I am willing to also pull myself up on the bad days..... The days where I get it completely wrong..... I’m just as confusing and unaware as the rest of society to him.
I have to learn to accept that we have a long long way to go before I truly understand him and be ok with that. I have to be ok with the continuous learning process we will be a part of forever and unless I accept it’s not just the rest of society that must adapt and J that has to adapt, I have to adapt as well..... Well unless I accept any of the above there is no way the guilt will ever subside. I am going to accept I am guilty of being ignorant too. Unless I acknowledge that, I cannot even start to work on it, let alone start to change it.
I would like to finish by saying I will never avoid eye contact with the stranger on the train muttering along to himself or that I will never again base my opinion upon someone’s appearance. That’s not realistic though. Everyone has slip ups, even me so I’ve learned. I will say however that I will be working on these things and making an effort to recognise these traits in myself so I can be better able to find that magic Autism formula for my son’s happiness.
PS: To the customers of My Special Story Books.... Don’t worry, I’m not going to hike up the prices in an effort to find my own self worth just yet. As a warning though, I really will have do a business plan and look at things like costing, profits, loss and all that administrative jazz one of these days...... Until then, I simply enjoy my work and will continue to raise awareness (including my own) for our amazing kids.