Trust and Lies

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I have long felt that Carys can understand more than she is able to indicate to us. In fact, that’s what gave me the idea for the main character in my books… you can’t get a more flawed hero character than someone who can’t walk or talk.

She’s always been able to follow simple instructions, such as ‘stand up’ (with assistance, of course, but she knows what to do), ‘sit down’, ‘hug mama’. ‘kiss mama’, ‘come to mama’, ‘drink your juice’, ‘where’s daddy?’, etc.

I know she understands these simple phrases, because she responds appropriately by carrying out the action I have requested of her. Now, it could simply be that she’s learned by association and repetition, because she hears them so often.

Or perhaps she understands.

In recent years, we have had to cope with some very difficult and upsetting behaviours from Carys. Going out for a meal, or taking the family on a day trip was a big no-no. She would scream and scream and scream, and there would be no consoling her. She made family outings so stressful, we couldn’t enjoy them at all.

Last year’s summer holiday was a disaster for us all, so much so, that for the first time ever, even the boys got upset. They are normally so beautifully tolerant of Carys and all the adjustments living with her brings.

Strangers are not so patient, however. Trying to amuse her and keep her quiet in a cafe one day, I downloaded some simple baby games to my phone. They did the job, until someone rather irately requested I keep the noise down. Of course, as soon as I turned down the volume, she couldn’t hear it (due to her slight hearing loss), and the screaming began. Perhaps he enjoyed the sound of that more?

Bearing in mind that the main reason I downloaded the games in the first place was to save the other diners from the horror of Carys’s outbursts.

So, what do you do? Stop going on holidays? Never eat a meal out? Have no life?

The boys are entitled to all of life’s experiences, and as their parents, it is our duty to give them as many as possible. And something we greatly want, and like , to do.

Carys will never become familiar with other places, or learn how to behave in social situations if she is constantly left in respite. Abandoning her and isolating her because she sometimes makes life difficult is not something we intend to do.

But we are so torn.

At the weekend, we went to a big family event, armed with toys, DVD’s, headphones, ipad, special foods, her soft blanky, oh everything we could think of to make her feel comfortable, safe, relaxed in an unfamiliar environment.

But in my heart, there was a heavy, sinking feeling; would she act up? How could I keep her well behaved and happy for a whole day in a strange place, surrounded by a crowd of strangers (to her)?

Well, she was a little star. And when we got home, I hugged her tightly and said to her “You were such a great girl today, so happy and so well behaved, such a good girl.” And she laughed and pointed to herself. Does that sound like a little girl who doesn’t understand?

So, what’s the difference?

 It’s such a little thing. I realised that Carys has so little control over what happens to her. She can’t understand why she has to leave her comfy familiar room full of music and toys to go to a boring restaurant, for example, where there are strange smells, lots of noise, crowds of people she doesn’t know, and she has to sit in a chair for hours, can’t crawl about, has no fun toys to play with, and can’t make lots of noise of her own.

Putting myself in her position, I realised how frightening/ strange/ boring/ incomprehensible/ frustrating that must be… I mean, why? Why do we have to leave our nice home and go to these places?

So I tell her. I explain in very simple language. We’re going to a restaurant. We’re going to eat our dinner there. You can play with your drum, watch your DVD, listen to your music, sit in a chair, eat your dinner, cuddle your blanky, have a drink, sit on my knee, sit on Daddy’s knee, we’ll have fun. Then we’ll come home, and you can play in your room with your toys before bed.

I can’t be certain that she understands all of it, or any of it. But without a doubt, her behaviour has improved. She knows what to expect. She knows it won’t last forever. And she knows she will be returning to her comfort zone.

Then this happened.

Her appointment came through for a hip x-ray. We’re going to the hospital, I told her confidently. You’ll lie on a bed, and have a photo taken with a big camera. Then we’ll come home. No one will hurt you. Just a picture.

But when we got there, the nurse asked, “Does she have the anaesthetic cream?” I stared blankly for a few minutes, then stumbled over a protestation. “Oh no, we’re not here for bloodwork, just an x-ray.”

But the nurse frowned. “We need to take the blood for tests to do with her bones. Isn’t that why you’re here?” And she rattled off the functions of the tests they were doing, all connected with the reason why here hips were being x-rayed, and I realised that they had to be done.

It’s very difficult getting blood out of Carys. Her veins are tiny, and collapse so easily. It can take ages, and needles in every limb before enough blood is collected, with several attempts for each one. It takes five people to hold her down while she screams and fights, not understanding why we are torturing her with needles, and why I am letting them, no, helping them.

I had told Carys no one would hurt her this time. I felt sick as I held her down and watched the needles go in. I had (unintentionally) lied to Carys, and betrayed her trust.

Fortunately, Carys has a beautiful soul, and a never-ending well of love. She forgave me, and I can only hope that her trust in me is repaired enough that she will be able to believe what I say to her in the future.

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43 thoughts on “Trust and Lies

  1. I can’t add anything constructive, Ali, the other commenters here have said everything, but I can’t believe that anyone could justifiably complain about noise levels with a special needs child. They would have seen too that you were doing everything you could. People can always leave if it bothers them. I’m sure they have somewhere else lonelier to be.

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    1. Thanks Tara! I have developed this great piece of kit called ‘the invisible blinkers’… They enable me to not see the stares and disapproval when dealing with Carys in public gets tough. They work great too! I should market them…

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        1. Well, here is an example. Carys watches DVD’s on a portable player using her headphones so it doesn’t disturb anyone. What that does, apart from entertain her, is distract her from her strange unfamiliar surroundings, blocks out all the strange noises, and gives her something familiar and safe to cling to. But what other diners see is a child watching TV and not engaging with her family. It’s as bad as using smartphones to access social media at the dining table instead of interacting with your fellow diners. I guess its easy to judge when you don’t understand all the different layers of what you are seeing.

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          1. But when that child has special needs… seriously, there is no excuse! I reckon the disapprovers are just people who have nothing to say to each other. I spent the weekend in a hotel with family, and at breakfast one morning my 3 young nieces were laughing, to the great disapproval of a neighbouring family. Laughing. At the breakfast table. For 1 minute. Honestly, some people just shouldn’t go out. Ever. So I suppose that’s the solution, Ali. Not that you and Carys don’t go out – it’s that Bitter Biddy and Sanctimonious Seanie stay at home instead to stare at their 4 walls!!

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  2. Oh Ali, my heart goes out to you. You are so patient and understanding, Never doubt that you are doing the right thing for your daughter. The brain is an amazing organ – we haven’t a clue what 90% of it does, so I would agree that Carys DOES understand you. With regard to your concern about your sons, why not have some outings with just them, and outings with just Carys? We used to take our kids out separately so they could have our undivided attention at least some of the time,

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    1. Thanks, Noelle! Appreciate it. We do take the boys out on their own occasionally, but I have to admit that they mostly go off with Conor, my husband, whilst I mind Carys. Today though, I took them out while Carys was at school, and it was really nice, they are lovely boys. Sometimes we go out to a movie or dinner while Carys is with the minder, and I really enjoy that. But I wish it was a bit easier to manage a family outing with all five of us, instead of always having to divide the family into smaller groups. But cest la vie, no point in spending life just wishing. We are very fortunate, I know that, and I do see some light at the end of the tunnel, Carys is definitely improving in terms of her behaviour, so I’m very hopeful!

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  3. God, what an awful experience! I can understand how terrible you must have felt. I understand poor Carys too. Those kind of intrusions are bad enough when you’re expecting it, but for her, it must be like a nightmare. She must be a real sweetheart to have forgiven you 🙂

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  4. Ali, I’m sure that Carys loves you as much as you love her. As you know, my mother has dementia and I went through a situation when she was rushed into hospital last week. They wanted to take bloods, they want to x-ray her hip, and she fought and fought not to have it done. All I could do was reassure her, and there were the briefest of moments where I knew she understood what I was asking her to do. Needless to say it was a struggle, but we got there in the end. Later that same day she briefly looked at me as she lay in the hospital bed and said “I love you Hugh.” Moments later she no longer knew who I was.

    Don’t put yourself down Ali. It’s very difficult ,but I really do believe that underneath it all family know we are doing what is the very best for them.

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    1. Ah bless you Hugh! That must be so hard for you. With Carys, we always knew there would be problems, that life with her would not be ‘normal’, but to watch your mother regress into someone who sometimes doesn’t know you, well that is much harder to deal with. I really feel for you. I’m sure though that that ‘love you’ moment was all the more special for it. I’m sending you a big virtual hug, because although words are a great way of releasing your stress and emotion, they do not console anywhere near as well as a hug! Love to you and your mum! Xxx

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  5. Hi Ali. I was very happy to hear that Carys was a star at your family gathering, and that she understood that you were praising her. That is really wonderful on both points. As far as telling Carys that no one would hurt her during her hospital appointment, and then finding out that the nurses needed to obtain blood samples, I assume that you explained to Carys that you did not know that they needed blood samples but you found out that they do. Since it seems like she is understanding so much, even if she did not understand your explanation for the need to get blood samples, I think that she would understand on some level that things were going to be different than you had originally explained, and she would not be angry with you or feel that you had betrayed her. I am sure that she knows that you love her and that you never want anything bad to happen to her. You are a wonderful mother that gives her heart and soul for her children every day.

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    1. Thank you, Rachele. Yes, I tried to explain to Carys the change of ‘plan’, for what it was worth. Interestingly, she didn’t fight anywhere near as much as normal, and it only needed me and a nurse to hold her still. The doctor was excellent, too, got the needle in first time and got all the blood she needed at the first attempt. I definitely think taking the time to explain things to her is helping. But oh, I felt so bad! I learned a lesson though. I won’t make that mistake again!

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  6. She knows. You know it, you don’t need external affirmation. You are the most amazing mother I know. And you should trust what is true in your heart. And that is, that she knows. Every expression, every confirmation, every syllable. You have brought her further than medicine thought possible. You are Amazing and I 1000% believe that she knows what you are saying understands your communication and trusts Tanya what you do even when it’s scary and horrid is right for her. Never doubt yourself Ali your the best mum 💖

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    1. Thanks Sacha! It’s hard being a parent at the best of times, isn’t it? But you can only do your best. It’s funny how others see your good side, but personally you only see your weaknesses as a mother. But maybe that is the driving force to always do your best.

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      1. I definitely don’t remember writing this! :s no wonder I felt rough this morning! It is hard being a parent. but lets face it you smash it 🙂 you’re the kind of mum who is an inspiration to others. Its a shame we are our worst critics instead of greatest supporters. also who is Tanya?!!

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  7. As a new follower to your blog, I found this post heart wrenching and touching. I teared up at the end. I simply can’t imagine how hard it must be for both of you and your family.And yet what came through strongest of all was the overwhelming sensation of love. Sending you wishes for the very best, Ali. Such a strong, emotional post. I’m in awe.

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    1. Thanks Mae, although I’m sorry I made you cry! That was never my intention. My love for Carys is strong, like all mothers for their child, but her love is even stronger, and sometimes I am amazed at the force of it from something so tiny, lol!

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  8. Phew Ali; just reading this makes me feel tired at the constant effort involved in simple things. I have little to no experience of the sorts of challenges you and your family face but I have learnt, from the other side to be as non judgemental as possible about what might be perceived to be inappropriate behaviour having worked with autistic youngsters. The detailed analysis of how events trigger responses and your minute analysis and empathy make for compelling reading. And how the rest of us, not having the benefit of these lessons, harsh though they might seem to be, are inadequately prepared to be empathetic in our own right. Thank you for sharing your insights and analysis here; it really does help put me a little in the shoes of similarly placed parents and carers and, I hope, allows me to be a little more understanding in turn

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    1. Thanks Geoff. What a lovely comment, I really appreciate it. There are many people out there who can be so cruel and insensitive to people with special needs, often they don’t even realise it. But fortunately there are also many beautiful caring people too, who may not have the experience, but have bucketloads if compassion and empathy, and thank God/ the Gods for them, because they will move us forward. Unfortunately though, its the hurtful ones which tend to stick in your mind. I wish it wasn’t. BTW loved your meet the admin piece on #1000voices… Didn’t realise you were an admin. I am writing a piece for Monday.

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  9. I believe she understands a lot more than you think. I know that’s so painful watching them poke your baby and knowing you unintentionally lied to her. But I also know she forgives you and loves you so much. I can’t believe someone had the nerve to ask you to turn down her game! I wish I’d have been there to give them a what for!

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    1. Thanks Rachel, I can’t help but think so too. Your autism pieces have really helped me, not because I think she may have autism, but just to understand how she may experience the world differently than I do. Particularly the one about sensory overload.

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  10. Oh Ali, your post has left my heart full and my mind thinking. I’m with you, I believe your gorgeous girl does understand things, but in her own beautiful and unique way. Just as Eilis wrote about how we use language to form memory, who is to say she isn’t forming her own, yet in a way that works for her. It is tough being a parent, isn’t it? xx

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  11. I have had a little experience with being out with someone when you are not sure what they are going to say or do.. My mother’s dementia coupled with 94 year old inhibition made trips out interesting most times.. I had to realise in the end that what other people felt or thought was actually not important in the grand scheme of things and whilst you can try to provide material items that might distract, it does not make a difference to the fact that you are still being and behaving like a family should do. I am sure by what you have described that Carys is aware on many levels about her relationship with you and her brothers and daddy. Because she is comfortable with you all and wants to be just with you.. She knows that she is safe and loved. You are doing a wonderful job as a mum and giving Carys the gift of as normal a life as possible. hugs

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  12. I was kind of flooded with things to say, lol, so here’s some more thoughts because this is such a powerful post, Ali, and at least the first part of it had me grinning as, if I am honest, I have secretly been hoping for a long time that what you say is true. A child who can point to herself when addressed and can follow simple instructions has the basis for language, or at least the concept of meaning. I really, really hope you can forgive the analogy: Allegro, for instance, can’t ever have language, but can follow and understand instructions, and understands symbols. That’s on top of being able to sense intentions and energy, and emotions, which I am convinced Carys knows how to do, and better than the rest of us, I suspect. 🙂 I also, dare I say so, think Carys can, and will, go beyond simply reacting to your words appropriately and be self-directed. Why? Because in making the connection between you saying she was a good little girl and that referring to herself, she’s done something that nonhuman animals, and infants, cannot do. She’s got a concept of “I” which is sophisticated enough that she’s aware that she is an originator of her own actions, and that in my opinion points to her being able to have her own intentions and opinions, preferences, and desires and, I would not be surprised if she has her own thoughts. Sorry for all the philosophy language! It’s probably not doing justice to how absolutely excited I am feeling! Because, Ali, keep talking to her, explaining the world, I think she’ll be able to respond with yes and no within a year. I’m practically convinced. She’s ready for that, I think. To what extent after that her grasp on the world will resemble ours, I don’t know. I would think it would still be drastically different. But, and I have felt this for a while, she’s on the verge of being able to communicate, beyond crying and screaming. 🙂 Sending hugs to her and you from me and from my ancient family who have had much to say here. 🙂

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  13. Thank you for sharing, Ali! I love how your Carys is able to change your point of view. She also teaches you forgiveness. I know a good few adults who are unable to do so. Your daughter is trusting you. Perchance, she knows you didn’t lie, you can’t lie about what you don’t know. Your daughter is precious. – Andrea

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    1. Thanks, Andrea! You are so right, she constantly changes me, I am certainly not the same person I was before she came along, and she teaches me so much. She is precious, all our children are precious, we all have to do our best by them, just sometimes its not so clear what that is… the joys of parenting, lol!

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    1. Thanks Craig, I’m hoping so too. The other thing we are wondering is how long is her memory? For example, she never seems to get bored of the same old songs and videos and toys, so maybe she doesnt have much long term memory, unless something is constantly being reinforced every single day. If not, we might get away with it, lol!

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      1. Oh hmmm, I hadn’t even thought about that question, about what she can remember. From all you’ve said about her, it seems her memory works differently for her than it does for many of us. My intuition though is that she might be able to hold onto the feeling or emotion from an event long after the details have faded. The kind of memories we have are largely based on language and categorizing, to the extent that isn’t possible, I’d think keeping track of events would be hard. But emotion and intention do not need language, and our bodies, as much as our brains, remember those. In that case, she could probably energetically tell the difference between lying and being sincere but misinformed. Sincere intentions feel very different from insincere ones, and she could feel, perhaps without being able to put a word to it, that you meant what you said. You didn’t do anything wrong, Ali, and I believe Carys knows that. 🙂

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        1. Éilis, you have such a great way of explaining things! Yes, I think you are quite right, about memory needing language, but understanding intention doesn’t, and I have my own experience of that, as you know. Thank you so much for reminding me of that. I suddenly feel so much better!

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