Thursday, 2 January 2014

Wouldn't You?

"But you wouldn't change him for the world, would you?"
Those ten words are not music to my ears.
Those ten words fill me with a silent rage.
My beautiful boy, my only child, has autism.  A lifelong condition that will see him bullied, that will see him called, "that odd boy" (at the very least), that will see him be statistically unlikely to be in full-time employment as an adult.
And you think I wouldn't change him?

My beautiful boy hasn't slept through the night properly for about three years, leaving our family of three on the point of exhaustion.

And you think I wouldn't change him?

My beautiful boy doesn't understand social niceties.  He'll talk too loudly (constantly), he'll laugh inappropriately, he'll pick his nose and then put his finger in his mouth, he'll ask the same question a dozen times or more (regardless of being told the answer a dozen times or more), he cannot master the art of a two-way conversation, unless he initiates it, and small talk is an alien concept to him.
And you think I wouldn't change him?

My beautiful boy doesn't come with a label hanging off him marked autism.  At first glance, you might not even realise that he is different to other children.  But he is and he forever will be.

And you think I wouldn't change him?

Of course I would, in a heartbeat.
And so would you.
Why shouldn't I want my beautiful boy to classed as "normal"?
I chose to share my beautiful boy's autism on this blog and, so far, I have never regretted it.
But please, don't ever ask me that question.
Because my answer would be yes.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This post has been gathering steam, as it were, for the last few days and I needed to give all those random and disjointed thoughts a space to become coherent.
See here for more information about autism.
See here and here to read about how others live with autism in their families.


21 comments:

Sian said...

I can tell from your honest bravery how this post has been gathering steam and I know I won't be the only one who'll be hoping it has given you a little sense of release. You'll have others who will relate, too, in ways you maybe haven't even imagined. Were there days when as a teenager I wished my Mum could come shopping with me and leave me to college and do all those other things "ordinary" Mums could do? You know the answer...

Cheering you on x

Margaret J said...

Yes, we would all change the autism; we would also change the attitude of society that is ignorant and uncaring. I would change the way that we sometimes say things without thinking ..... But one thing I won't change is my love for this beautiful boy.

Karen said...

TBC is so fortunate to have been born with you as his mummy. You are supportive and understanding and I doubt he could find himself better parents. But I do understand your rant because what mother doesn't want what is best for their child and autism is certainly not the best x

The Quintessential Magpie said...

I hear and understand. We have a loved one who has battled something similar, and Mr. Magpie's first cousin had a condition that was never really diagnosed or fully understood. Yet, his twin went on to become a gastroenterologist. Would his parents have wanted that for him, too? Oh, you betcha!

You are doing a great job, Ruth, and wanting the best for your son. Including change, is part of that.

xo

Sheila

Mary Lou said...

WOW - powerful blog entry. Well said. I have a Great Nephew that has Asperger's, which is an autism spectrum disorder; I know the frustrations his parents & siblings have trying to deal with other people's reactions to his behaviour or lack of the social norm of behaviour.

debs14 said...

I agree with Sian and hope that putting your feelings into words in your blog has given you a little release. Your honesty is brave and I am sure that we would all feel the same. There are so many things that we all take for granted.
My friend's daughter works on a 1:1 basis with autistic children and I do know that she finds some of her work very challenging, but oh the rewards when something that other children take for granted clicks into place.
He is a lucky boy to have you as parents and I know you are doing everything you can to unlock his potential. Be gentle with yourself Ruth x x x

Missus Wookie said...

One of the best responses I ever heard was from my ds when someone asked me that question, i was doing that social smile and shake of head not really answering. When he said, "I would!" and listed several reasons why. Hope you are able to find IRL support and that this post has helped.

Heather said...

Thankyou Ruth for having the courage to speak out! Its so difficult sometimes to see how others see our boys. I thank God every day for giving me my child but at the same time its so unfair that he should be different. Stay strong Ruth & just keep on doing what you are doing :)

Robyn said...

Sweet Ruth,

I lovingly disagree. :) But I absolutely 100% respect your perspective and your place in this journey.

I feel like parents of Special Needs kids fall along their own spectrum of "acceptance" at one end and "fighting for their child's growth and improvement" on the other end. And I feel like both ends are very important and even need each other. AND I think parents shift around on that spectrum as they continue on the journey.

Right now I find myself in a place where I am grateful for who my kiddos are and how much I have grown by being a part of their lives. But, the danger of that position is a passive acceptance that things won't change.

I do wish you and TBC got more support, Ruth. This post sounds angry and frustrated to me...emotions that I TOTALLY understand and validate...but ones that are hard to feel. And for that I wish for you more support. :(

Honestly, I think TBC is perfect. :) He is authentically and vibrantly living his little life the best he knows how. As are YOU, Ruth! :)

Hugs to you!

Abi said...

Ruth, your bravery has really spoken to me today. Thank you for sharing TBC's story and in turn yours. It has given me a greater understanding of Autism and particularly a greater understanding of how it is to live with a child with autism. I am not a mum so I can only imagine what you must feel as a parent. You are doing such a great job. Thank you for articulating what you are feeling and like Sian i pray it gives you a form of release.
He is a special little chap to have you as a Mum.

scrappyjacky said...

I think you are both brave and right to articulate these thoughts,Ruth....and I think I would feel the same as you.
I do believe TBC is very lucky to have you as his mother....and you will do all you can to ensure he lives his life to the fullest.

Kirsty.A said...

I'm with you on this. If someone offered me a magic medicine which meant R would no longer struggle with hemiplegia of course I would take it. I don't believe parents who say they wouldn't change their children. How selfish would it be otherwise? Thanks for sharing honestly.

Kirsty.A said...

I'm with you on this. If someone offered me a magic medicine which meant R would no longer struggle with hemiplegia of course I would take it. I don't believe parents who say they wouldn't change their children. How selfish would it be otherwise? Thanks for sharing honestly.

furrypig said...

simply sending you hugs xxx

Sandie said...

Written from the heart and I respect and love your honesty Ruth. Who wouldn't want a more ordinary life for their child? Life is difficult and messy enough without autism but your son is blessed to have you as his mother, and I don't doubt for a moment that your love for him is the same, regardless. Thank you for sharing this. I went to a conference recently where a man in his mid 20's spoke about his life with autism. He was inspirational, and he certainly made me recognise the difficulty of simplest of things. Stay strong and gentle with yourself x

Diane said...

As a classroom teacher, I daily advocate and demand open acceptance of all the personalities that make up and enrich our little group. It is a daily challenge and I truly understand your wish that your son's life path could be easier! I also admire and appreciate your honesty and openness!

Ladkyis said...

I can add nothing to what everyone has said except to say that I am sending you hugs and soothing thoughts and a sincere hope that this year brings support from outside your family.
Thank you for sharing.

Liz said...

Hi Sis. I'm stuck in the middle here. I agree with Robyn on the one hand as Autism is what makes TBC, TBC and I love him dearly but on the other hand I too wish that it was different as I don't want him called names or pointed at for not being "Normal". What is normal anyway? You and TBO are doing a fantastic job as parents so don't ever doubt that. Sending lots of squishes for you all. Love you xxx

Beverly said...

Ruth, so glad you have this place to openly and honestly voice your concerns and frustrations. That along with "God only gives special children to special people" have been so difficult for my parents these many years. My SpecialSister has touched so many lives and has absolutely been a blessing and has been a part of creating who my sisters and I are but would any of us change it so she could have been "normal" and not have Down Syndrome, unequivically. At almost 60 and with dementia she still mentally feels the pain of others being mean or laughing at her. The mind reverting to the past is sometimes a hard thing. I continue to pray for all of you and that life bring more blessings than struggles.

Margaret J said...

Love to you, TBO,TBC and all those who have sent love, hugs and squishes as a show of their support for you.

Alison said...

I don't think there's anything I can add, Ruth...except to send love and hugs.....it's good that you feel able to vent here
Alison xx

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