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Monday, May 24, 2010

Don't Cry

I don't want to write this post.
I don't want to say it.
But it's going around and around in my head.
Things I'm not supposed to feel.
Things I'm not supposed to think.
Things I'm not supposed to say.

There is something wrong with my boy.

I just want to break down and cry.
And cry and cry and cry and cry.
I look at him differently now, and I don't want to.
I don't love him any less, I could never do that.
I'm cuddling him more.
I'm giving him more kisses.
I just want to make up for the fact that I've given him something 'bad'.
I feel so responsible.
The lump in my throat is so hard I cannot swallow it away.
The tears are stinging the back of my eyes but I don't want to let them out for fear they may not stop.

Aspergers, Aspergers, Aspergers...

It keeps ringing in my head.
It's only a word, but I wish I never heard it.

I don't even know for sure if he does have it.
I am so grateful to all the wonderful people who have been so supportive already.
And all the words and wonderful comments from other mums who have been here have been so comforting.

I feel so ungrateful.
This is nothing compared with the hands some parents are dealt.
It's not even a problem.
His behaviour is not a problem at the moment.
He does not have any learning difficulties.
What am I complaining about?

I don't want to be devastated.
I am so surprised I am even feeling this way.
My first reaction when I heard the word was, "That's fine, we can deal with that. I suspected it anyway."
But it's been eating away at me for a week now.
I just won't go away.
I do feel devastated.
And I suspect that is fairly normal.
I'm guessing everything I'm feeling is totally normal.
It may be, but it doesn't make it feel any better.

Don't cry, don't cry, don't cry.
Breathe.........

24 comments:

  1. Firstly, you didn't "give" him anything. And I am so sorry your heart is aching today, but it is absolutely okay to cry and grieve. That will pass and you will move on to dealing with it. You are absolutely right, everything you are feeling is normal. And I'm going to hang around you today a bit so you aren't on your own. (In a non stalkerish, non creepy way) xxxx

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  2. Hey Thea, it's not all bad. Here's a list of famous people with AS:
    Albert Einstein
    Alan Turing
    Al Gore
    Andy Kaufman
    Andy Warhol
    Bill Gates
    Bob Dylan
    Carl Jung
    Hans Asperger
    Henry Ford
    Isaac Asimov
    Isaac Newton
    Jane Austen
    Mark Twain
    Michael Jackson
    Michael Palin
    Mozart (could be ADHD instead)
    Nikola Tesla
    Thomas Jefferson
    Vincent Van Gogh
    Woody Allen

    So as you can see he's in very good company.

    My 16yo niece (who lives with us) has Aspergers and she's wonderful, she lives a typical 16yo life albeit with a few quirky traits. There's loads online about Aspergers so I guess you need to have your cry, get it out and then get searching.

    hugs
    Linda

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  3. It is normal..thats doesn't make it easier or feel any better though. I want to envelop you in an enormous hug Thea but I can't. So please just know that I am thinking of you and feeling for you and know exactly how you are feeling right now :(. Massive cyber (((((((hugs))))))) . If you need a shoulder or to vent or to talk I'm happy to email chat..(just leave your addy in my comments so I can email you) xoxo

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  4. I'm not sure what to say to this, and I certainly have no experience of Asperger's but I do know that when something arrives in your life that you weren't expecting, there are others who've had the same experience. And in my experience, it always, always helps to talk to others who've been through or are going through the same thing, no matter what that thing is. And there is always professional support if you need it...show me someone who hasn't got help when it's been needed and I'll show you a fool...and we know you're not that. I hope that didn't sound harsh...I'm certainly not saying it that way. Just saying that there is so much support you can access and you don't have to do it alone. And yes...breathe.

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  5. more from me lol

    Thea I used to work in a school as an aide for special needs children. More children than you can imagine have Aspergers.
    I worked very closely with a boy who has Tourettes syndrome, the parents where shocked and devastated as you can imagine. He was very severely affected, but you know what? He had the most wonderful parents (mother in particular) who ensured she was armed with information, she created a life for him which was structured and any changes in routine were planned and he's grown into a lovely young adult. I know from experience that had his family not been as attentive and caring, things would have been very different for him.
    During the short time I've "known" you, I can see you are one of those amazing parents (even if you sometimes doubt yourself). Your son is very lucky to have you and I know you'll get it together and take it in your stride and life will go on happily.

    more hugs Linda xxx

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  6. Hi Thea, It touches my heart to read your raw emotions today. I know that is how I would feel and I also know that what you said: "It's not even a problem" is what will be left after you have had time to process all the emotions you are feeling. It's really good to let it out.

    And from what I've read AS can be a gift- Linda has said it well.
    Big hugs from me,
    Sue
    (Just_Leithal)

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  7. Thea lovely girl - YOU DID NOT GIVE HIM ANYTHING!!

    You need a big hug. You need all your lovely online friends to come around and hug you all day.

    It will be ok. Your little boy sounds like a wonderful little boy. Everyone has something. This will be his thing.

    Read my blog post today and promise me you will do something off it for you. Please????

    Love and hugs xxxxxxx

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  8. I'm going to give you the BIGGEST hug ever on Friday. I know you'll try to squirm your way out of it but I'm big! Nobody escapes my hugs when I decide to give them... and I don't give them out to just anyone!!

    I'm not going to pretend to know what it's like to get news about a child since I don't have any. I do know what it's like to get news you don't want to hear though, even when you kind of already knew. It sucks. But believe me, there is nothing worse than dealing with it alone. You have every right to feel the emotions you are. Let it all out. Fall down on a heap in the ground if you want and kick and scream. We're all here to pick you up and hold your hand and give you hugs. Most importantly, we're all here to listen. God knows, you've done it for me a million times.

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  9. Thea, cry. Let it all out. Whatever you are feeling: allow yourself to feel it?

    I have no experiemce with aspergers, at all. So I won't attempt to rationalise.

    But I am a mummy who has been dealt unexpected shite at times, who has tried not to feel scared. It just doen't work. Let it all out.

    Huge hugs. xxx

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  10. Hey Thea,

    I cried after Boy child got his Aspergers diagnosis. For 6 months when I spoke about it I cried. Rationally I knew that he was still the same boy as before, but I found it hard.

    Everybody deals with it differently. Some people cry, some people go into research mode etc.

    Email me if you want. It's on my about page.

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  11. Sending virtual hugs xxxooooo

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  12. I know how you feel. But reassure yourself, you didn't give him anything, it just is what it is.
    My son has aspergers, but the diagnosis has been a long time coming, thanks to a move overseas just as he was beginning to be assessed. The earlier you get a diagnosis, the more help there is for them ... my little boy was upset when he heard, but I've explained that we are all different and have different strengths and weaknesses. Now we know what he has, he can get help with the things he struggles with and we can make the most of the things he is good at. (They are usually highly intelligent.) And as someone else says, there are loads of famous, influential people who have/had it ... it is not the end of the world. I still feel sad, especially as he has been put on anti-depressants, but he now qualifies for extra help at school, psychology visits etc, and that's got to be positive. And he knows it's not his fault if he can't make friends/cope with noise/concentrate at school/makes noises, it is his condition. But hugs. You'll get there ... you seem like a wonderful person and mother and that you are doing everything you can for your kids. My son wouldn't be the quirky, eccentric person he is if he didn't have aspergers, and while it's not what I would wish for him, and parenting him can be hard work, I would not change him for the world. Stay strong. xo

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  13. Hey Thea,

    I know I've spoken to you about this and you know what I've found? I had to stop taking it as a personal affront. Because that's what my husband (especially) and I were doing. It was like we were being told there was something wrong with us or something we did had made Sam like this.


    Your beautiful son is still the same as he was the day before you went in and saw that doctor. He didn't change, but you did. And eventually, you will find this diagnosis as nothing more than a a helping hand and an ability to help you help him more (if he needs it).

    You are an amazing, strong and lovely hearted lady. Cry, breathe, scream, do what you have to do, but just know, it's all going to be ok.

    Ber xx

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  14. You ladies are all so wonderful!
    I want to have you all over for coffee just so I can chat with you.
    I did end up having a cry...as soon as I started reading these lovely comments the tears just started flowing.
    But I feel a lot better now.
    Thank you just doesn't seem enough today. xxxxx

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  15. Oh honey *HUGS* so so so so so many many *hugs* as many as you need and then more. I wish I could help, had words of wisdom but I don't, so hugs will have to do and you didn't *give* him anything, really, you didn't. Not your fault hon, nothing you could have done but plenty you can do - thats the good bit, right? And he is so lucky to have a Mum like you, you care, you found out, and you care SO much. How many parents would let it slide?
    Many hugs again
    xoxoxoxo

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  16. Oh Thea, I just want to give you a big squishy hug.

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  17. Firstly, you did not give him anything, except endless love. Thea, you know where I was at yesterday. I spent the whole day crying. Today, I got up and although fragile still, I felt better. I had let it out.
    I am glad you had a cry... I'm not happy you have to go through this waiting, not knowing for sure game though. I wish so much I could be there with you, wrap you in hugs, and support... and coffee and wine.
    Whatever the outcome, you have an amazing, unique boy who has so much to give, so, so much.
    Linda above gave you a list of people with ASD. My hubby has a very, very wealthy client with ASD. He was the quiet, eccentric clever kid at school, who as an adult quietly made millions. He is an inspiring, amazing man people turn to and he is almost single handedly turning a small island state on it's head culturally. Why am I telling you this? Because I want you to know that as hard as it is right now, you will get through, good times will come and go, but... no matter the outcome your beautiful boy will always be your beautiful boy. He will always be loved and will love. He will amaze you, astound you, and drive you crazy... just like all kids do. I know I am not there in person, but know I am thinking of you as you navigate your way through tomorrow, the next day, and all the ones after that.
    Sending you love. xxx

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  18. My darling, cry and breathe. Do what you feel is best. He is perfect. He is your perfect little soul in your eyes, no matter what. You will be okay and so will he xxx

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  19. Hi Thea
    I always read your blog but not sure if i have ever commented before. My little boy was diagnosed with an ASD 2 months ago so I hear you and I understand all of those feelings you have expressed. Let it out. For the first few weeks I saw everything my precious boy did through the prism of the diagnosis. But that fades a little with time. I am here if you want to chat - send me a message if you like. I am writing a blog about my experience over at www.theiloveyousong.blogspot.com
    Sending love and strength to you

    suz xx

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  20. from me to you...when told my little (now 16 ) boy couldn't read I was shocked and saddened and thought I failed him...til someone turned to me and said.....'even a blind person can learn to read, it take time and hard work but they can and do'....so will you and your family ask yourself what you would do differently as a mother?????? Nothing is the answer before you say it...becauae gifts come in all shapes and sizes from all different place what a nice and exciting way your family has to look at the world....

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  21. from me to you...when told my little (now 16 ) boy couldn't read I was shocked and saddened and thought I failed him...til someone turned to me and said.....'even a blind person can learn to read, it take time and hard work but they can and do'....so will you and your family ask yourself what you would do differently as a mother?????? Nothing is the answer before you say it...becauae gifts come in all shapes and sizes from all different place what a nice and exciting way your family has to look at the world....

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  22. {{embrace}} I bet you also gave him a loving heart, a deep soul, the ability to laugh and fart at the same time (or maybe that's me?) and so much more.

    You also give him every single day, unconditional love, and acceptance. All will be well. xx

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  23. Thea, I have been exactly where you stand. It is important for you to grieve but also take comfort in the fact that your gorgeous boy will grow more comfortable in his own skin as the years pass. My eldest boy also has Asperger's and as he gets older, he understands himself more and more. Read all you can - find work by Tony Attwood - and learn about how you can make those difficult times ahead a little easier for all of you. Most importantly, know that my gorgeous boy is happy, intelligent, funny and loving and I take such joy and fascination in looking at the world through his eyes. Big love and cuddles to you all - I am always here if you need to talk about anything xxx

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  24. Oh hun, there is nothing wrong with him. He's the same boy he always was, same as before you heard the word Aspergers.
    He is just wired a little differently is all xoxoxo

    2 of my fave books - Not Even Wrong and All Cats Have Aspergers.

    I've got an Aspy and he ROCKS!
    xoxoxo

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