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Shackles

Posted by on Apr 19, 2010 in Uncategorized | 22 comments

I feel muted.

Like my tongue has been cut out and my fingers tied up.

I can’t talk about it, I certainly can’t write about it.

You wouldn’t understand. I tell myself that you wouldn’t, that you don’t want to hear it. That you won’t get what I’m saying, that’ll you’ll overwhelm me with kindness but not hear a word.

I’m trying. I’m going to try.

You’ve heard it before, it’s nothing new. Old words, said over and over.

A bad few days, that will pass of course, as they always do, but I am trapped again in a cycle of worry and doubt and fatigue that leaves my eyes hollow and my brain numb.

I don’t know how to fix this.

I don’t know how to stop worrying about a boy that seems determined to do every thing differently. Whose repetitive ‘stuck’ behaviours are becoming more and more obvious, whose tantrums are becoming harder and harder to manage. Finally those that spend time with him are beginning to realise what Ant and I have been saying all along, that we’re not looking at a speech ‘delay’ here, but something else. An opting out of speech perhaps as he busily and meticulously constructs his own language of sounds and gestures and a rich array of facial expressions. There is no lack of communication here, the boy that ‘talks’ for a good 12 hours straight most days with barely a pause, just communication on his terms, like everything else. His own words, with all the right intonation and syllables, even, that sound nothing like the English words but that he seems to have decided he prefers.

I don’t know how I’m supposed to not worry about a boy that seems so sensitive to sensation, that the sheer act of going for a poo, for god’s sake, makes him howl and cry, even though the doctor assures me there’s nothing physically wrong. That my poor love, not even two years old, is having to learn breathing exercises to help him cope with the anxiety and tension he feels when he needs to go.

And yet he is happy, for the most part. So full of life and vibrancy, interested in EVERYTHING. SO affectionate and, if given the right environments, making friends well, and genuinely the funniest, most entertaining little boy I have ever met. And I love him, and love being with him, even though he exhausts and confuses me. I just find him so draining. The pull on my emotional energy being with him every day, all day, is intense and makes it hard to recharge.

I don’t know what it all means. I know if I talk about it to you too much you will tell me not to worry, that he is fine, that it is all ‘normal’. And that I won’t believe you and feel lost and confused, doubting myself even more than I do.

And I don’t know how I’m supposed to let go as the gap between his peers gets bigger and bigger, and is, as I suspect, likely to get a lot big yet.

I worry about his differentness. And I feel guilty in that worry because although he is different he is healthy and happy, unlike so many children, whose parents must have to cope with so much more than me. Infinitely more.

And then there is me.

So trapped in patterns of self-doubt and low confidence, to the point of almost an crippling paralysis. To the point where I feel it could spoil everything I am, or could be. It has already made me give up things that if I told you about, which I never have – I can’t bring myself too, would make you gasp. And no, it wasn’t a baby. A baby of sorts, a dream, a talent, which because of the way I feel about myself I am too scared to even contemplate taking up again.

And I know that this is what you won’t understand. That you will think it can be fixed by saying nice things, and I wish it could, but somehow that seems to make it worse because I don’t feel like I deserve them.

It feels such a waste. I hate myself for this pathetic wallowing. These endless up and downs which exhaust me as they must you too.

Life is so short, too short to waste it, and deep down I KNOW that I have so much to give, and that I worthy of it. But I can’t move past the fear, of failing, not being good enough. It is like shackles I can’t shake off, and I don’t know where they came from or how to be free of them. I just know that it colours everything, painting over bright horizons with endless washes of grey.

I want to fix it.

I want to fix me.

But I don’t know how.

Related posts:

  • beckylj

    all I can offer is a virtual hug and hope that the professionals can get their act together and help you all. I just have to deal with behavioural issues which I hope is down to the divorce and therefore short term. You are a good mum as we can see by your posts xx

    [Reply]

  • http://bakingmadmama.com Baking Mad Mama

    Sending hugs to you Josie, and hope things seem brighter soon. If it helps at all, I know where you are coming from in terms of Kai seeming 'different'. My boy has always been different from other kids, in the way he plays and the way he communicates. As you know I have worried myself sick about it in the past. We have reached a slight breakthrough with the talking but for the most part he “talks” a lot like Kai does – a constant stream of babble complete with intonations but not many actual words. We have just moved so are waiting to see a speech therapist. I also don't know why my son is so “different” from other children, but I know how the worry can seem a bit all-consuming at times. Thinking of you. Please email if you need to talk xxx

    [Reply]

  • themadhouse

    Words are all we have, so spurt them out, but please dont feel that Kai has to measure it to his peers, that isnt about living. Enjoy him, love the differences, try and make it through the days. I have said it before and will many times again parenting is like being bi-polar, all ups and downs and no middle line, no balance, the bad is dark and scarey, but the good is almost too bright to look at.

    When you get like this think to yourself “what is the worst that can happen”?

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  • http://deerbaby.blogspot.com

    I don't know what to say Josie, not really. Only that I hear you and that I wish I could comfort you somehow. I don't know enough – anything – about the details of Kai's 'differentness' from a developmental point of view. I am sure you have had all the assessments. Are the professionals not listening properly to you? I only know what I read and that is a mother who cares deeply, who is profoundly connected to her child, tuned in to his needs. He is so lucky to have you. And as for your insecurities, you know that I walk that path too. And it can be lonely. But keep reaching out and we will all listen. We won't grow tired even if you think we will of the ups and downs. You are forging something beautiful here, something worthwhile and a springboard for all sorts of other things and opportunities. xxx

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  • http://princessl.co.uk/ PrincessL

    sending *huge hugs* I really wish I knew what to do. You're doing so well though, I know you don't feel like you are at the moment, but you are. You're doing a super job and he's growing in his own way. *more hugs*

    [Reply]

  • geekymummy

    Big hug. Kai is himself, perfect. And if he is different in some way, if there is a label for how he is, then you will find the resources you need. One thing I'm sure of us that you don't need to be alone, and that there are other mums out there with the same worries.

    [Reply]

  • http://www.twitter.com/myautisticson Eric

    Josie,
    I understand that you feel bad about worrying about your son. This is your wish for a mom who should only see his son in a perfect light, even if it wasn't the case. the blind love… Your love is big. your love is the reason why you worry. You should not feel guilty about your worry. And you are not a bad mom if you think Kai isn't perfect. You are not failing him.

    You have a lot to give, and you are giving a lot already. You may not see it, but we all do. succeeding isn't about achieving, but a lot about being. What you are Josie is beautiful. And I'm not talking about the outside and superfluous, but the inside, the depth, the sensitivity, the intelligence…

    You know, what i think? I think Kai may help you overcome your fears of failing. It isn't a easy task, Kai isn't a easy kid. If he was an easy kid, it wouldn't challenge you. You know, Kai may be your teacher. What I mean is that he may help you understand things about yourself. He may the “thing” you care so much that you will go all the way through and will eventually realize that love is strong, and that it is all that matters. You won't be failing him when you love him. With love, you may realize, you have nothing to fear. I'm not saying love equals being a perfect mom. I mean that being a person filled with love, being honest and caring, and yes worrying, is what makes you a worthy person for your son.

    I'm so deeply convinced, you are in fact the ideal mom for Kai… the moms you meet who are so sure of themselves and can “manage” their littles are SO not the right mom for Kai. Kai needs your sensitivity, your own painful experiences, your ability to listen, to tune in your inner self, to stand and raise above the differences. He will need that from you. And in return, he will show you that being Good and successful is not where you expect it to be. It's already beautiful, Josie. How many do you know would improvise a gesture language to communicate with Kai? Your way to embrace your son for who he is and trying (struggling) to understand him is already beautiful, Josie.

    There is beauty in imperfection. there is humanity. invaluable gift. You don't see until it is in the ones you love so deeply.

    take care,
    Eric

    [Reply]

    Josie Reply:
    April 20th, 2010 at 6:58 am

    Thank you Eric, from the bottom of my heart.

    I took the post down just now, but you must have read and commented on it
    just before I did. I'm sure for a reason. I don't want any one else to read
    it but I'm glad you did.

    I'm going to keep reading your comment today. I want to believe what you
    say, I really want to. So I'm just going to keep reading it over and over.

    Thank you for your beautiful words. They have made me cry this morning, but
    in a good way. A healing way. Thank you xx

    [Reply]

  • http://lifeslightlyused.wordpress.com/ april

    I won't give you words, but I can send you *hugs* so *hugs* you have and many. Just know that I am here and I get bits of it. Not all of it, but bits. And *hugs* always wonderful Josie.

    [Reply]

  • http://softthistle.net Marylin

    I don't see how I can possibly add to what the others have said, particularly Eric.
    Max was a similar age to Kai when I started to realise that all was not right with him, and it's taken me a long time to get to grips with the task of raising him. He is different, as Kai is, but we won't love them any less, and we give them the best we possibly can, at the end of the day, we can't do more than that, can we?
    They're still our babies, and regardless of what 'label' they have been given, or will be, they will always be our lil rays of sunshine.
    My heart goes out to you Josie, I know how you're feeling.
    Lots of love to you and your gorgeous lil Kai. xxx

    [Reply]

  • Merredy

    Hi Josie – on the toileting – my best friend has a boy of 7 and since potty training age she has fought and fought with the doctors to get them to take note (distress an dtrouble when going) – sounds very similar to your experiences – so to hopefully avoid the years of troubles, battles and resulting physical issues her boy suffered – look into endocopresis – it is treatable (drug us called movocol or something) but too often diagnosed to late. I am not suggesting Kai has it – but you might be able to rule it out.
    Hope it helps.

    [Reply]

  • bronagh

    Sending massive hugs your way Josie xx

    [Reply]

  • http://www.rukakuusamo.com/notesfromlapland/ Notes From Lapland

    I know it may not be the done thing to say, but you know me, ever the one to put her foot in her mouth, have you talked to anyone, a professional i mean, about these feeling? someone that can help you? If they cloud your life, make everything grey and you are struggling, then go and speak to someone, get as much help for yourself as you would for Kai, cause lets face it, he needs his mum at the best she can be so helping yourself *is* helping him.

    No kind words. Promise. but you know where i am xx Now for godsake wench, stop whining already will ya! ;)

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  • http://paris-ankara.blogspot.com sandrine

    Josie – I think I know what you're going through, as I went through so much of it myself just a couple of years ago! My son is different – he is an 'atypical' high-functioning autistic 7 year old. For a long long time, we thought his speech delay was just to do with being trilingual, and that his tantrums were to do with the speech delays. And then, just before he turned 6, the other things became more noticeable, the sensory issues, the repetitive behaviour, etc. You could say the diagnostic kicked us in the face, but it's before it that I was really suffering, in a way that was indescribable. I had a hellish few months as it was slowly dawning on me that there might be 'something wrong' with my beautiful son. Strangely, very soon after the diagnosis, things started to get better. For him, of course, as we started taking to special education classes. But for me as well, as I could put a name to what had been worrying me, and recognise that the 'symptoms' were just part of who my son was, not signs that he was ailing. Two years on, we're both doing a lot better. He's progressing really well with the therapy, and I've come to see him as 'normal' again – just a different kind of normal. Whatever happens to your son, whether he is diagnosed with anything or not, I really hope that you too will soon feel happy again.

    [Reply]

  • http://rosiescribble.typepad.com/ Rosie Scribble

    Sending hugs and positive vibes. The above comments are amazing and I know from your more recent post that they have helped. There is not a lot I can add really. Of course you will worry so I won't tell you not too. I worried myself stupid about my daughter. All I can say is that is all sounds very familiar. You've met IJ. She struggled with food, toileting, issues of sensitivity and so much more. She still has a few issues and she is still under the care of a consultant, but she is doing brilliantly. *whispers* Try not to worry *too* much. Make sure you share all of this with Ant as well. Hugs, much love, Rosie xx

    [Reply]

  • http://www.andthenallithoughtaboutwasyou.wordpress.com Kerry

    I really want to send you a massive hug. You have had some helpful comments here. All I wanted to add was the idea of Movicol, I know quite a few people on Movicol it basically makes the whole act a lot softer, my SIL is on it. It is prescribed by the doctor, and can be given to babes too, I really think that you should push for that. It can make them very regular so you know when they will need to go and should make the whole process easier. The other thing that I was thinking was pictures, have you ever tried them to help Kai with his communication? They are a great tool and can take the pressure away and can be used with signing as well. If you want to talk about these then feel free. Loads of love Kerry xx

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  • http://iknowineedtostoptalking.blogspot.com Kathryn

    You know what? So maybe he is different. But different doesn't have to be bad. Different can be wonderful, fantastical, incredible. Different doesn't need to be scary, frightening or worrying. Others have talked about resources out there, and I think that's great, I think you should use everything you can get access to. But I think the greatest challenge of all – and make no mistake, because it is a challenge – is actually helping YOU, rather than Kai. Helping you to get the support which will help you with the exhausting task of taking care of him on a full time basis. Helping you to feel confident with his differences, and helping you to be happy that different is good. And in Kai's case – and I know, because I've met him and seen what an incredible little boy he is – different is fabulous.

    Counselling, please, because having had it I know what an incredible difference its made to my life. At least think about it, if you haven't already. I think it's time you got some help to stop beating yourself up.

    Huge love xxx

    [Reply]

    Eric Reply:
    April 21st, 2010 at 4:17 pm

    I like a lot what you said.

    Absolutely, “different” can be so enriching. With differences come gems & talent. Let go of “supposed-to-be-normal” is actually respecting Kai's differences/needs.

    Also, helping ourselves is helping our children. Help can provide resources, within ourselves and for ourselves. It is respecting our needs, too.

    Hugs,

    [Reply]

  • http://twitter.com/tattooed_mummy tattooed_mummy

    Josie, I can't talk about developmental issues and what is normal and not normal. i have no experience (except with my own DD – but one kid is not experience!) but I can comment on labels. I was fianally diagnosed (and labelled) with a hereditary neurological disease at age 36. I have shown symptoms since I was 11. there can be huge relief in getting a label, knowing more about what is going on and having a support network of others in the same situation. You are an amazing caring and loving mum, don't be afraid of labels. I hope you get some answers with Kai's developement, verbal and otherwise, soon. xxxxx

    [Reply]

  • http://typecast2000.blogspot.com/ Nickie at Typecast

    Not read the comments as that will distract me from what I want to say.

    My son (now 16) never spoke properly until he was at least 2 and a half. He formed his own words in his own language but his sister could understand him and we used to berate her for “talking for him”… he even had speech therapists baffled. He was fascinated by bar codes on tins of food and other strange things. His imaginary friend (called Jamie) lived behind the settee and he spoke “normally” to Jamie but babbled to everyone else. There was no rational explanation for it. One day he just started talking (not full sentences, but correctly pronouncing words, albeit with a lisp).

    I don't know what I'm trying to say to you here – probably urging you not to worry too much. I learnt not to give a shit about the “baby books” and the “development charts” as they are for the average child over an average period of time and, in my mind, no child is “average”. They are all individual. We don't live in a beige world and we certainly shouldn't expect our children to conform, especially when we spend so much time encouraging them to be “Individual”.

    Eric's letter to you says all I wanted to say, and so much more.

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  • ClaireB

    May I recommend getting Kai in to see either a homeopath or iridologist. They are amazing. Just make sure that thru have a strong medical background behind their alterntive treatments I.e. Have also studied medicine. My friend's son was extremely hyperactive and his doctor recommended he be put on medication. She went to a homeopath for a second opinion and the homeopath asked her to switch off the TV for a week. Within 4 days she noticed a huge difference. She's never been back to the doctor. Perhaps a homeopath may be able to see someting doctors have missed. There will be a reason for Kai's pain when he poos (even if only psycological) and his anxiety. A homeopath can help with things like that. another example: My husband refused to eat for months when he was 6 and his mum eventully took him to a homeopath. All she said to
    him was: 'Do you want your little brother to sit on you and beat you up
    one day?' 'No' 'Then you need to eat.' My husband ate like a trooper from that day on.

    Anyway, my thoughts are with you as you seem strong but really struggling. I hope you find some peace in all this.

    [Reply]

  • http://kirsty815.wordpress.com Kirsty

    I get it! I found myself identifying with you… a lot! I have that same self doubt with my daughter! Meg has learning delays… maybe from her epilepsy or maybe from the medication she has to take. Simple concepts that come easy to other children she has trouble with. I see her struggle and I don't know how to help her. I have her in speech, occupational theraphy, and tutoring. She's pulled from her class each day to work on reading, but she still struggles and the most painful part is she notices the gap that you were talking about. My heart breaks for her and I feel as though I should be doing more. I feel as though it's my fault, even though it isn't. I think you'll find that most parents dealing with a special child feel the same low self worth and self doubt as you expressed. I experience anxiety and panic attacks and decided to start seeing someone. Talking about it definitely helps! I will tell you that it took me a while to find the right therapist. Good Luck and know you are definitely not alone! We are sooo much stronger than we realize. xx

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