Thursday, May 7, 2015

I suppose I should really introduce myself my hubby and my kids and dog a bit better


I suppose I should really introduce myself my hubby and my kids and dog a bit better

My name is irrelevant only my purpose. I am a mum of 5 (ish) kids, I will be M (often referring to myself as Queen crazy, they all sent me this way, at least that’s my story and I’m sticking to it, my hubby G, the most wonderful man to walk the earth, (often referred to as Mr. calm) K is almost 15 (often referred to as crazy Jane) who I will rarely talk about in this blog/book as she is a book all of her own, my stunning teen who fascinates me and oozes love and warmth ;) and the hardest to manage of all my 5 children. My guest star I (often referred to as crazy izzy), my daughter from another mother, again a story to be told, not blood related but related by love and in our hearts, she’s almost 13, L (often referred to as Mr. Fab) is almost 9 and is severely autistic, completely non verbal with ID, adhd, spd and dyspraxia with a little of god knows what else on the side. R is almost 7 (often referred to as lunatic john) my miracle child and yes there is a story there, he is what you call a normal child, often termed NT as in neuro typical, although I’m not sure what normal is so I cant really comment further lol, and the twins who I’ll refer to as thing 1 M and thing 2 E also referred to as Em&M, they both as you know have autism and ID and are non verbal also. And all that’s left now is to introduce D our Autism assistant dog, (often referred to as that poor fucker) yea we even have a dog to help us. All my children are brought to you by the wonderful fertility drug called clomid, all bar R, he just appeared, and was the biggest surprise of my life, and what a treasured surprise gift he is. I suppose you could find a link there to autism if you dug deep enough and I did research but than why? Why start caring about something I cannot change, this drug gave me the most precious gifts a woman craves, children. So I stopped looking for those answers and just appreciate what I have, my babies.

This story is about our Autism journey so K I and R will only dip in and out of the story but I will be more focussed on L Em&M, myself and G. I suppose I forget how great our story is as I’m so busy trying to get through it day by day that I forget how far we have come, I mean we’ve had it tough and you can loose sight of that at times and be all doom and gloom instead of ha-ha we rock this autism shit, and yes we do really rock it. I’m always trying to be positive and try making light of bad patches, situations, annoyances etc, but there is no point in constantly craving perfection because perfection went out the window as soon as the big A flew through it. Now all you can hope for is baby steps leading to leaps, celebrating the most smallest of victories as they are now the biggest victories you will celebrate. Some take the words mama dada for granted, I am longing to hear them for the first time ever, some take make believe play for granted, id kill for some make believe play from my children, even a psychotic imaginary friend would be celebration lol. (The film along came Fred springs to mind, although I think L might actually have a Fred, that or L is Fred lol. Again many stories yet to come there. Even bad language that you may find un acceptable, I say bring it, well if L M or EM ever told me to Fuck off id be the proudest mother alive, firstly it’s a word, secondly it has meaning, and thirdly if used in the right context, RESULT, my child put contextual meaning to a word, get me the Prosecco and add a strawberry to that champagne glass.

I used to blog but got fed up of hearing my own story so I stopped for a while, I’ll add some or my old blogs into this story as they where written at the time of the event/story at hand. It will also be a nice way for me to remind myself of what I’m trying to shite on about, I do ramble a tad.

Last night and some of yesterday I was feeling very down, kind of thinking too much about the future, why I do this is beyond me as I’ve no way of predicting tomorrow let alone a few years from now, like duh M. I was awake till stupid o clock, I opened up an old blog post that I had been meaning to post to a friend, also a blogger with an incredible story, I will post a link to her blog, seriously read it, amazing family.
I read it as I could barely remember what I had written but knew it was a good one, omg I cannot believe how much it got me into a good mood and got me wanting to write again, it reminded me of my positive self, the light hearted, lets just do this shit M, It reminded me of who I am in this journey and what my goals should be and what way I need to think from here on in, now granted its not for everyone this blog post and some might be like, what planet is she on, well I’m on planet M, I wrote this when L was 3 just a freshly diagnosed little boy, all smiles and fun in his step, ok devilment in his step, lets stick to honesty here.
I meant it at the time and I still mean it now, how amazing is that, nothing changed, not my beliefs, logic, heart nothing. So it put me on the right track for Em&M also. Now my hubby and i differ on this topic slightly and its just my ramblings nothing else
Here it is with just his name altered to L

Would I Cure My Autistic Son
I would have to say NO to this question.
I accepted my son a long time ago for who he is, what he is and how he is. You see I love my son and my children unconditionally. If I was to want to cure him, than surely I’d have a condition of my love for him.

L is a happy 3 year old, stubborn, wilful little boy. He has no speech; he has sensory processing disorder and ADHD on top of his autism.

I long to hear L’s first words and I pray every day that I will someday. It will probably be one of the most wonderful days of my life. I say probably because I don’t know if it will. You see I have my children’s weddings, the birth of my grand children and all of the typical stuff to look forward to, that yes you think will be the best day of your life also. So it will be one of the best days of my life for sure.

L will talk some day I’m certain of this, it is coming, am I in a hurry, NO I am not. You see if I rush him, force him, or try and drag the words from him, he might not like talking, he might associate talking with cruel taught’s and tricks for treats, with force and against his will, he might decide he preferred it when he was silent, and resort back to that time. You see L has feelings just like me and you, he has memories and he has taught’s just like you and me. I don’t want him to think it is required that he speaks, that it is a condition I have of him. I want to him to find his words in his own time, realise for himself that he can use his voice; I want him to enjoy finding it and expressing it and himself. I will praise every attempt, I will help him and assist in programmes he needs to follow, but I will never force him or rush him.

Would I like to cure his sensory processing needs? Again hard to answer, you see his senses work differently to ours, they cause his body to feel, hear, taste, smell and work differently to ours. Would I like to make his sensory processing needs easier for his body to handle, yes I would, and Occupational Therapy will help with this, and me assisting with the programmes again made for L will encourage this, and is helping him so much. But cure it, no I would not, as no one has a body that works perfectly, everyone will have different sensory issues to every one else, this is what makes us unique, stupid but yet simple example: some might love the smell of poison perfume, I hate it, it almost makes me pass out, how boring would it be if we all liked the same smell, tastes, god I couldn’t imagine living like that. I love deep pressure and massages, my husband hates it, he is super ticklish as is K, my self and L are not, R is somewhere in the middle. I love garlic; DH hates it, I love swimming, DH loves walking. We are all different to each other and its annoying at times but interesting.

Do I fear for L in the future, I simply can not answer that either as I do not know what the future will bring? I have no idea what way Luca will be in 2 4 or 6 years time let alone as an adult. For all I know, the world will be half / half. Half the population could be non typical, and half typical. Do I think Autism will be more acknowledged, accepted and in some cases appreciated, yes I do, if we have all of what we have now for our children, if we keep fighting and making our selves heard in our fight for improvements, resources and therapies, can you imagine what we will have for our children in the future. If we educate people enough on our children, their condition, and what way their mind’s work, at least we put information out there. If they don’t listen, so be it, but we said it, who knows if although they might think what you said is ridiculous or untrue, you can be sure they will say it to someone else who will say it to someone else etc etc

Therapy and intervention is the key to unlocking our children’s potential, what ever it may be. With this they will learn life skills, social skills and learn at a pace they can cope with. No one in this world is perfect, at least not in my eyes, so why should I want my children to be perfect. I see people crave perfection, take the celebrities. They are already pretty, but they have a need to be perfect, they get a new nose, face lift, put crazy shit into their lips and come out looking like a pit bull who got stung on the mouth by a wasp. They do so much irreversible damage by craving perfection. If that’s what perfection can do to you, I know I’m happy being just who I am, soooo not perfect.

I don’t agree with a lot of ABA methods when teaching our Autistic children, but I wouldn’t argue with a parent that did. I do not think the gluten diet or casein free diet is a cure for Autism but if a parent wants to go that route, I would not argue with that. I do not think bio chemical treatments, and electronic wave treatments, swimming with dolphins etc etc will lead to a cure for autism, but if that’s what people want to do, go ahead as I am not in any position to know, say or educate otherwise. I only know what I know from my own children, I can only speak on behalf of my own children.

Would I cure them, no I would not as I am happy going on this journey with them, learning from them, experiencing the world differently through their eyes and guidance. The Autistic world isn’t that scary, in fact I sometimes envy it’s simplicity.

It’s a nice world at times, I think of it as a different country, they speak a foreign language to me, but yet I have learned and can remember a lot of the language, its just this is a different dialect, I can catch most of it but some I cannot, but I try, I go over it in my head and imagine it’s meaning. I could be wrong completely, but at least I tried to translate it and figure it out, better than staying lost and ignorant to it. I’d like to holiday in autism land and learn their language. I’d like to take some of their culture and use it in my own day to day living.

There is a lot we can learn form them, like how to chill out more and take a time out, how to stay ignorant to mess and not worry so much about being so clean and tidy. To be selfish and just refuse to comply with someone else just because I want to. To loose my voice for a week or 2 and be able to be silent and not have to communicate with anyone but myself. I would like to incorporate a lot of that into my own self, I long for the day that I can be as blunt and ignorant as I want to be, if I do not like someone, simply say, I don’t like you, oh to be that direct and not care about it afterwards. I would love to be able to tell a smelly person just that, that they smell, go take a bath as you stink. Can you imagine being able to be that direct and not care? Maybe than the world would be less bitchy, or maybe gun rates and murders would be up, who knows :0) I don’t know but I sure do have a lot of respect for the Autistic frame of mind sometimes.

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