Tuesday, 9 May 2017

Boomerang: Life, challenged.

http://bit.ly/2pp6HfF
How do I write this? I've been trying to write this for weeks but it won't be written. How do you describe a void? How do you illuminate a mask? The perfect mirror of comedy and tragedy? Brothers. Twins. Yin, Yang. Life, challenged.

I will make it start by saying that right now, I am broken.
I will make it start by saying that in November 1999 I threw a boomerang which has since returned.
I will make it start by saying that I caught the bastard.

This boomerang is coated with a greasy, oily thing called 'stigma'. This stigma is the thing that's making it hard for me to write this, because what I'm talking about is officially classified as 'mental illness' but because I hate labels we will just call it 'feeling despondent and miserable for so long I'm going for help. Again.' Tomorrow. If you feel that is a weakness, scroll on. You have no place in my world. Otherwise, you get me. Here we go.

It's currently some form of mental health awareness week, which in and of itself is a bit of a ridiculousness, as we should always be aware of our mental health and in particular when it's gone down the shitter. And I know this old fool called Depression because she and I used to hang out and we even had someone formally called 'Doctor' to whom we went for some offloading and some medication for many months, many moons ago. Eighteen years, in fact. Back when I fired Depression off on that boomerang, thinking it was a slingshot but I was wrong and here I am holding it in my hand again and it burns like blistering fuck. One minute I'm laughing at how unbelievable it is that I'm back in this horrendous place, the next bawling, the next shouting at someone, everyone, anyone. And I pity myself.

And I hate pity. But God, who should feel this low? This high? This messed up? This lost?

And the worst thing about it all is how deeply I've been feeling that this is something I must not reveal. Because the cause of my depression centers around caring for my beautiful son. I'm inside out lately at the great mountain we climb as a family every single day. At the struggles he faces, at what extra we must add to our day to support him to make a small hint of progress. At the sheer frustration he expresses at that pace. Don't you DARE tell me he doesn't understand. He does a plenty, and he is livid when he can't do something he wants to do. Every step is over such a chasm. And what in God's name is going to happen to him when we are gone. My heart splinters every day. It cannot break anymore, because there won't be anything left, and what would I be to him then?

But I AM revealing it because it is a simple fact that just because you struggle with a situation does not mean that you wish it away.

Read that again, I'll wait.

My son is five and does not speak.
He cannot always tell me what he wants, only what he does not want.
I try so hard to decipher every sign, every shout, every attempt at language.

I try. He gets frustrated and shouts. So do I.

It's all such an oversimplification of everything that's going on right now, but the bottom line is, I need help. I have done everything possible I can do to manage the stress but it's not working. I need help.

But on no plane of existence do I wish he wasn't here.
In no way do I wish he were not mine.

I adore my son as much as any other mother adores hers.

And that is why I AM seeking help. He deserves better.

I see jokes about how much toddlers talk. They destroy me. My world for an 'I love you mama.' He mirrors it with sign. He hugs and cuddles. But words! Words! I had no idea how much I need words til I heard none. And no one out in 'the world' is doing enough to make them come, barring his TA. Speech therapy has abandoned us for administrative overhaul (as if there were anything there from the off). I want to fix it all but I don't know what to do. I want to control it all but it is all out of control. He progresses a little every day but he is not allowed 'a little every day' in life. Life has taken him off me and me away from him.

Life. Life is a four letter word. The very king of them all.

Life will pass him by and I can only sit and watch him, furious and pissed off and determined, try to catch up. He will bust his ass because he is Rukai. He is mini-me. I can do nothing more to help him reach his potential. And that potential is huge.

But I cry because it kills me that he has to struggle for every bloody thing he does. I die a little every day. I want hope. I see so much hope tiptoe in the frame but it doesn't break bread with me or hang about in my lounge and then I lose it again. And then this darkness owns me and I can run til the cows come home but it's never enough. The boomerang lands in my palm again. And I fling it. And catch it.

And fling it.
And catch it.

This road is so slow. If you really know me you know I live for slow but this - THIS is no road, it is quicksand. I have struggled in silence for five years because the very same people to whom I would turn for help are those who would prefer that he did not exist at all. And I won't give over control of any of this to them. Push. Pull. Tug of war. Tug of love.

Tug.
(Dig.)
Cry.
Tug.

Rukai doesn't belong to you, he belongs to Rukai.

A couple days after Rukai was born, I found myself wailing in the shower. Not because he has Down syndrome, but because I loved him from seeing those two words on a stick '2 weeks'; I loved him totally from his absolute beginning. And there looming over us, with all their dictatorial instruction and off the cuff nonchalance were those people who would try to own him and tell me what he would need. They who would tick boxes and make note of how we 'appeared to have bonded with our son.'

In spite of WHAT? Of course we bonded with him, he is our son. Our blood. Our firstborn boy.

Yet I am still broken.
He needs me whole.
I'm going for help.

There is no shame in asking for help. So I ask.

So I ask.

And there I throw that boomerang again.

#MHAW17

EDIT:  If you have read this and feel anything, please say something. I don't write to make people think, I write to foster change and change starts with conversation. Don't be afraid to talk about this. I'm not.

18 comments:

  1. No shame in doing what you can to be the best person, the best partner, the best mommy, the best advocate, you can be. Whatever it takes. I trust your judgment, and I sure hope you do, too! I remember the worry I had when my grandson wasn't talking by 2, then 2 1/2, and the frustration for everyone to know what he wanted, and even now, at 5 1/2, he and I go through some frustration when I dont understand what he is saying. I can only imagine how hard it is for Rukai to not be able to express what he's thinking, feeling, experiencing, and for you and his dad to struggle to understand him, to be frustrated at how slow the systems are, and how inadequate the help seems. No wonder you're feeling depressed. Your most loved little boy needs help, and there are some things you can't do to make it all better. Know that you're a diligent, loving mom, and whatever you need to do, do it!

    While you're waiting for the system to pick up the pace, I have some sites I can share with you that I found while we were dealing with slow speech development, if you'd like. Have to run, client is here.
    Xo - aloha

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    1. Thank you so much. I'd very much like a look at anything you have found helpful. xx

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    2. Looks like the links aren't on this iPad.....must be on an older tablet. I'll see if I can resurrect that when I'm at my son's this weekend and find them

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    3. Thank you, no rush but if you do get a chance I'd love to see more resources. xx

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  2. Such a beautiful, brave piece. And one you could have written for me. I too have found myself catching the boomerang I threw away around 12 years ago, and for the same reasons. I went and got help. The kind that come in blister packs - the talking kind has never worked for me. But it's working for now and the fog has thinned a little. Hugs to you x

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  3. I know I'm broken, but I've given up going for help, because where are the counselling services that understand the dynamics of families dealing with disabilities, especially autism?

    I hope you find the help you need xx

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    1. That should be a speciality in itself. My best support has been online, mostly because of the days I just can't face outside. I hope you find some strength in community, and I wish you well with all my heart. xx

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  4. Communication is key to everything in this world; my girl was referred to speech language aged 2 and a half and I do remember how difficult that time was especially hearing other children speak. Hoping you do get help and have some good local support - of course it's great that you are able to cry out for it but of course sad that it gets to this point. Use other people as much as you can - try and get someone to bring you some meals for the freezer? Sounds a bit trite sorry 😔 Just hoping you will be ok x

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    1. Thank you Steph. Not trite, thoughtful. I appreciate your kindness. x

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  5. Keep writing! I know your pain and I too have caught this ugly boomerang too often. You are not alone!

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    1. Will do. And you keep writing and throwing too. One day at a time. x

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  6. Hi Maxine ! There is no shame in asking for help. I hope you feel better soon and please keep in mind you are a great mama ; )

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  7. Dear Maxine, I have read this and your previous posts. I hardly ever comment on blogs but you have moved me this evening. Forgive me, I'm afraid to say anything in case it's the wrong thing, or sounds in any way trite or patronising. So please can I just send you love and warm wishes from up in Yorkshire. You are right and brave to ask for help. I have been there too - like Kel, blister packs worked better for me at the time than talking - at least they gave me that little boost I needed to get myself going each day. Please may I simply send my love to you, Rukai and his dad? I can't find the right words to say but I'm thinking of you...xx

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    1. Thank you for reaching out to me. Your words were expressed and that makes them perfect. Sometimes just to be heard is enough and I thank you from the bottom of my heart. x

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  8. Thinking of you and wondering how you are doing at the moment?
    Sending love and good wishes x

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    1. Thank you! :) I'm on an upward swing at the moment so been a bit better, thank you for asking. In the midst of finding a solution, so hopefully I can get to a better place soon. I really appreciate you popping by to post / check x

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