My Daughter and Autism
Years ago, when I was pregnant with Siobhan I contracted glandular fever. Since then I have blamed myself time and again, if only I hadn’t been ill, taken better care, things could have been different. Siobhan may not have got ASD maybe…. Like you do with a problem, you search for the root cause, the culprit of this condition that causes Siobhan so much anxiety.
As a mum there is a natural default that it must somehow be your fault, you need someone to blame, and by dissecting your health problems during pregnancy voilà, you have cracked it, that is the reason, that awful virus you had is the villain.
The guilt can drive you crazy. Truth be told there will be no definitive answer. You will never have that moment when you “know” for sure that A or B was the cause, it just is.
Once you arrive at this, hard to swallow conclusion, you just have to push aside the guilt and deal with the outcomes in front of you. Siobhan is no less of a person with ASD, with or without it I could not love her any more than I already do.
So I say take away the guilt and blame from you, your partner and your child, as there is enough to deal with in the rest of society because your child doesn’t fit the neatly moulded role of normalcy.
I can tell you from experience once you let it fly and let go of your guilty feelings it is very liberating and empowering.
With my daughter I protect her, worry about her, fuss and love her not because she has ASD but because she is my daughter, and it is natural to feel all these emotions as a mother.
With the addition of Siobhan’s ASD I do feel I throw a big blanket of protection over her, and I am more sensitive to her needs and how other people may view, judge, and treat her.
We only had a definitive diagnosis of ASD (high functioning, leaning towards apergers syndrome) two years ago, having been back and forth to this professional and that professional for answers and help. She also has dyspraxia , combined with her ASD is a daily challenge, which she meets with a cheery optimistic understanding that I admire so much.
Having Siobhan has enriched our lives so much and rather than tolerating this”disability”, we have embraced the chance to understand and help her in everything she does, and this in turn has helped me grow as a mother and educating myself about all things Autism has helped me understand Siobhan a lot better.
Siobhan is happy to talk about her ASD to people she knows but is reluctant to tell anyone new about it, even at a young 14 she feels a sense of shame surrounding her ASD, not enforced by any one person but from the negative connotation derived from society about someone who is different.
She is however pleased that I am writing about her and Autism in my blog.
Why? “Because you might help someone else with the same difficulties as me”.
As we were talking the other day about Autism and how it made her feel, Siobhan said something that made me smile, that perhaps all the “non ASD‘s” were the different ones and all the “ASD‘s” the “normal” ones, and it was their world, and their rules. “Wouldn’t that be great mum,” she said ” I would be the one helping all of you, instead of the other way around!”
I was actually shocked to read that 1 in 68 children are identified to have ASD, I didn’t anticipate it would be so high, and the more I learn and talk to people about the spectrum, the more I feel I will be of value to my own daughter to help her own her own journey.
The label itself, however doesn’t detract from the fact that Siobhan is a bright, sunny, engaging, happy, thoughtful wonderful person with so much to offer and has an eager, optimistic excitement every morning for the day to come.
Just to give an idea of what ignorance is out there the following descriptions have come from “well-meaning” family, friends, educators, medical professionals, and from the general public only to happy to dole out their helpful descriptive words of wisdom, mostly to me or my other half but in some cases to Siobhan’s face as if she was either not able to hear, or simply understand them saying these hurtful words or that she wouldn’t understand them.
I find these words hard to read, as they are very negative and hurtful words that can hinder a child’s perception of what autism is, and essentially who they are.
Siobhan – What I am NOT
The positive slant to this is that it prompted many talks with Siobhan of all the amazing and positive qualities she holds, and the shining quality she has is to rise above all the negative comments, and she said to me “It’s not their fault mum, they just don’t understand”.
Autism certainly doesn’t define Siobhan but it is a major component of who she is and effects all aspects of her life, the more I learn about it the more I feel I can be of value in finding solutions to Siobhan’s daily struggles and to understand her more.
Below is a list of how I would describe Siobhan, a 14 year old happy teenage girl, with a passion for animals (especially cats), always with a book in her hand and a smile on her face. Yes she has her moments but give me a teenager who doesn’t.
Siobhan – What I am
One of the questions on one of the many appointments regarding her ASD asked we could change, her would we?
It prompted us to decide if we could would we “take away” the ASD, if we could. Initially I thought yes, right away, I would.
Upon reflection though, I wouldn’t, as she is lovely and perfect as she is, and removing the ASD would remove her.
Naturally we wish her life was easier for her, and less a mine field of learning and re-learning little things that we find easy but take for granted (shoe laces, zips, idioms, sarcasm, jokes, riding a bike, organisation), but she is the person she is because of her Autism, and we love her regardless.
I’ll leave the last words from Siobhan “Don’t see just the Autism, see me.”
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