She wanted to hear him speak. To say the word“Mum” instead of “nnnnh”. She wanted to be more than just a sound in his mouth. She wanted to be a whole noun. She wanted the nuance and the meaning of it to fill her ears and let her know that he at least knew who she was and that she did indeed mean something to him. She wanted to hear joy and laughter falling from his lips. Not the sounds of anger and frustration that too readily constituted his vocabulary.
She wanted so much for him, of him, from him. But most of all she simply wanted to know him. To feel his emotions and understand his thoughts. She wanted to run her hands through his mind. To untangle all the misplaced knots that held him so bound up inside himself. To reconnect all the disconnected synapses that short circuited his world and left her floundering in a sea of unknown origins and misunderstood currents. She wanted to swim in the tide of her son. To be a part of that which no moon held sway over. For he seemed to her to come in and out of himself on a whim.
She found no rhyme or reason for his demands, fears or peculiar likes. Everything about him to her was a compound mystery. She constantly felt he was a haunted house. The structure, the main body of which, was sound but that something un-named was adrift in the attic. Shaking the foundations of his life. Sending furniture like thoughts flying around his head, following their own kind of bizarre and intricately crafted, maze of other worldly logic.
She used to dream that one day he would simply look up at her and say one complete and glorious sentence. Bang, out of the blue. Just like that. But he never did. Even the act of smelling flowers was a mystery to him. He constantly put the flower under his chin. As if he really believed that his chin was the part of his body that could best enjoy the flowers fragrance rather than his nose.
She bowed her head as she watched him aimlessly pulling up fist fulls of grass, mechanically, one, after, the, other from the ground. She found herself thinking again how truly lovely it would be to be able to walk into the garden of his mind. To hear his thoughts and to really know his fears and joys instead of always having to guess at them and hope that she was reading him right.
‘How much easier life would be if it were just like in the movies,’ she thought, as a tear traced its way down her face. She wished she could somehow plug into his universe. Then he could show her his world from the inside and she, in turn, could show him the world as she saw it. But life wasn’t a TV show and she knew no amount of wishing would make it so. The only actor in this play was her.
She presented to the world a jovial face and a warm smile, while inside, she felt every single dream that she had ever held for her son dying as the beginning of acceptance wound its way around her heart. He was different. He did have autism. She knew this first moment was always going to be hard. She hated herself for feeling as if her son were missing. She hated that there was no reason for his condition. She found herself staring resentfully at other mothers wanting nothing more than the assurances of health and safety that their ‘normal’ children gave them. So many resentments in so little time. Their layers falling like blankets over her.
She was at a loss as to know how to explain, even to herself, why the world that she so dearly wanted to share with her son felt so totally gone. The passing down of her favourite child hood stories and the sharing of the animated version of ‘Kimba the White Lion’ seemed somehow to be more than far away. Such simple things and yet….
She tried to blink back her tears of loss and frustration but they kept flowing. Following the crevices of worry already etched into her skin like the tattoos of belonging. Her mind kept asking, ‘how could life distort itself so?’ She felt like she’d been thrown in to the deep end of life and all she’d been able to do was tread water and try to stay afloat. She didn’t want to float. She didn’t want her son to live a life of floating. She didn’t want him to live a series of rote-learnt achievements, or role-played scenarios. She didn’t want him to only ever know his world through a set of computer- generated pictures velcroed to a carpeted board. That was no way to learn any thing. Let alone a life.
In that small moment of clarity, buried so deeply beneath all of the things that she didn’t want for her son, she found herself to be a mother. A mother who knew that she needed to thrash her arms and kick her legs. A mother who knew that she needed to learn how to swim in the ocean of autism. That simply floating was never going to work. That her son too was afloat and he needed her to teach him how to swim.
Suddenly it didn’t matter that he couldn’t call her ‘mum’. It didn’t matter that he smelt flowers with his chin. It didn’t matter that their life together would be different. All that mattered was teaching him how to swim.
This is beautiful, and could easily have been written about my son. The first time he ever sat down beside me and put his head on my shoulder – the first time he’d shown any sign of affection or even noticing me – I burst in to tears.
I think that sometimes people forget that Autism isn’t just a solo journey. No matter how it’s portrayed. We as parents experience understanding Autism in our own ways. And there are some very special firsts along the way that we never ever forget. The first voluntary smile, laugh, hug, or the first sign of understanding that you are there. These firsts don’t always arrive in the ways that we hoped that they would but just like our children, they arrive in their own unique ways. Thank you so much for sharing Missus T.
You are a special mother and the divine has given you more strength and power to deal with your lovely child. (Hugs)
Thank you Midnight.
This is beautiful. I love this part: “she wanted to run her hands through his mind. To untangle all the misplaced knots that held him so bound up inside himself. “
Thank you Sheila = )
I sometimes wonder why you can praise me the way you do when you are so much better than me
I just go inspiration from this. Thanks for your support as always.
Thank you Kelly. We all have our own things to say and our unique ways of saying it …. Your way is as good as any one elses = )
Hello,
I enjoyed reading this. I pressed it and posted it on my blog today with the following note;
‘Read this post by http://www.seventhvoice.wordpress.com and was really impressed by the depth of undstanding of how it feels to be a mother of a child with Autism. The roller coaster of emotions, thoughts and frustrations that come and go everyday.
Thank you for giving expression to an almost indescribable feeling of pain, loss and finally acceptance and progress’
Ps: thank you for visiting my blog and liking my posts.
Thank you so much Selasie for you lovely words and your support. I’m so honored that you found it worthy of re-posting. I am really enjoying your blogs too = )
the autistic child hears and feels things that we of the “normal” world scarcely can imagine – i wonder if their thoughts would not make a better world for themselves than ours for ourselves
Your sentiments on this echo my own thoughts. Yes I do often think that the world would be a better place if people were unable to lie, cheat and steal from each other and instead found hours of beauty simply watching sunlight dapple through a tree’s leaves.
I’m very impressed with your blog. Good work!
Thank you Rick = )
Vivid, painful, hopeful….
Thank you RAB…
This is beautiful, and heart-wrenching at the same time. It has given me an insight into the most heartfelt part of someone else’s world.
Thank you for your kind comments equineocean. i so appreciate them.
It’s lovely. I’ll reblog it so a friend of mine with kids with severe autism can read it.
Thank you B = )
A brilliant text. Moving, poetic, nuanced, ambivalent, spiralling, hopeful, strong. A real insight into caring for an autistic child. Thank you. And thanks for subscribing to my blog too. Seems we also share an aesthetic in both choosing this dark theme at wordpress. Peter
Thank you Peter. I look forward to reading more or your work =
This is beautiful– I love the last bit about smelling flowers with his chin– made me cry.
Thank you Paula. The journey toward acceptance is an amazing one and once you’ve arrived at that beautiful place, where you let yourself take in all the small joys of life, you find that you hold a mountain of love far bigger than you simply ever imagined.
Yes! This is perfect.
This is beautiful..
Thank you = )
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This is beautiful. I actually volunteer once a week to teach swimming to special needs children so it was interesting for me to read the metaphor. Your blog is wonderful and should be cherished.
Thank you so much Wandering Youth = )
Absolutely and beautifully heart-wrenching.
Thank you so much for your kind words.
exquisite open words, thank you for painting and sharing this world
You are so very welcome. Thank you for your kind comments.
Such fine writing! Such an important message!
Thank you so much Naomi for taking the time to read this post and for your kind words of support and encouragement = )
For a ray of hope I recommend the book The Brain That Changes Itself by Norman Doidge, M.D. He tells of example after remarkable example of the plasticity of the human brain. Pages 74-83 specifically deal with the challenges that autism poses. Researchers suspected that part of the problem lies in the way that autistic children process sound:
“Recent brain scan studies now confirm that autistic children do indeed process sound in an abnormal way. Merzenich thinks that the undifferentiated cortex helps to explain why they have trouble learning, because a child with an undifferentiated cortex has a very difficult time paying attention. When asked to focus on one thing, these children experience booming, buzzing confusion–one reason autistic children often withdraw from the world and develop a shell. Merzenich thinks this same problem, in a milder form, may contribute to more common attention disorders.
“Now the question for Merzenich was, could anything be done to normalize undifferentiated brain maps after the critical period? If he and his team could do so, they could offer hope for autistic children. . . .He is currently developing a modification of Fast ForWord that is designed for autism, a refinement of the program that helped [thousands of severely learning-disabled children.]” (pp. 82-83)
Note: Fast ForWord is a highly interactive and engaging software program designed by a team at Scientific Learning in Oakland, CA, that includes “child psychologists, plasticity researchers, experts in human motivation, speech pathologists, engineers, programmers, and animators.” (p. 70).
I can’t recommend this book enough. –John
Thank you for sharing this information John.
This is an amazing write, thank you for share it.
You are so very welcome. Thank you so much for taking the time to read and relate = )
What a beautiful, and important, piece of writing. Thank you so much for drawing my attention to it. As an autism parent, reading these words will help me stay afloat too. I think the process of acceptance differs for everyone but when it comes it gives you a clarity and a determination that makes you much, much stronger. After acceptance comes the need to make the rest of the world accept and understand. Writing like yours helps achieve this. Thanks for writing it.
Thank you so much for your encouraging and beautifully accepting words. Responses like yours give me the courage to keep writing and sharing my experiences and understandings of our incredibly remarkable journey. I greatly enjoy your posts and admire both your strength and your insights = )
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I LOVE IT !!! it is so lovely and unique its beautifully accepting words
you should do more like that
Thank you so much Drangongirl10. I might just try writing another piece similar to this one. Lovely to have you on board