Would you change things if you had the chance?

Is it possible to grieve for a child who is alive? To wonder and miss the life you thought they would have but can’t?

I see a lot of posts saying that people wouldn’t change their child and that autism is part of who they are. They say that given the chance, they would have their child exactly as they are. I admire these people and I really wish I could share their sense of peace with the status quo or their wish to keep things as they are. If I’m honest, if I could take away J’s autism I would.

Is it wrong to think of and be sad for the person you thought your child would or could become? For the potential that will never be realised and the future that is so drastically different from the one you envisioned when thinking of having children? Is it awful to wish it could have been different and that events had taken a different turn? These thoughts have me very conflicted. On one hand I know I am lucky. Lucky to have him and to know him, to see all that he achieves in spite of his difficulties, to see how hard he tries and how much he perseveres. On the other hand I look back at his birth and the issues surrounding it that I hold responsible for the issues he now has. I wish that none of that had happened and that he could be living a ‘normal’ life, free from the burden put upon him by his disabilities. A life like his brother and sister can have, albeit restricted for now by the need to support J as we do.

I know I’m lucky he lived through it and survived to come out the other side of his birth and post birth experiences. Someone once said to me that if he had died we would have grieved and moved on from it but this way we are trapped in a constant grief for what could have been, always wondering if things could have been different. I was horrified by this thought. Of course I would never have wished the alternative. He’s a miracle and amazes me every day. I couldn’t and wouldn’t want to imagine a life without him. He’s taught me so much and I still tell myself that it all happens for a reason, though sometimes I find it hard to understand that reason.

I often find myself worrying about what the future holds for J and how he will cope or be looked after when we are no longer around. I worry about how people will treat him out in the big bad world and how he will deal with this. I wonder if he will ever be able to have a job or to live by himself. If he will ever meet someone and fall I love. If he can’t will he know what he’s missing out on and how will this affect him?

I love J so much, I love who he is and his personality. I love his little quirks and that way he smiles at me when he’s up to no good and hoping I will either not notice or just let him away with it! I can’t actually imagine him being any other way than he is.

Why then do I have these other thoughts? The ones where I wish he didn’t have he start in life that he did? The ones where he doesn’t have a global developmental delay or autism or speech difficulties? I read often on the subject of autism awareness and acceptance and many people very eloquently advocate for acceptance of people just as they are. They say they wouldn’t change their children even if they could. I am all for this and believe that we should all accept people as they are. I am an advocate of being kind, always. I fight for my child and his needs and his rights. I find out what’s good, what’s needed and I seek to get it for him. I accept J as he is, for the person he is and I love him unconditionally for it. Does this mean I can’t wish he didn’t have his difficulties?

If I’m completely honest I would take away his autism if I could. Not for me or for anyone else out there but for J and the potential he’s missing out on, for his future and the opportunities he could have, for his present and the difficulties he faces and for his past and the struggles he’s had to overcome. I would take it all away in a second because I’m his mum and it’s my job to make his passage through this life as easy and good as it can be. It’s my job to look after him and give him the best opportunities and chances I can. If I had he chance to change all of that for him then of course I would. It doesn’t mean I love him any less as he is, it doesn’t mean I don’t accept him for who he is and love his little personality. It means I’m able to accept my son as he is, to love and support him in the life he currently has but that given the chance to take away his struggles I would do it in a heartbeat. Why then do I feel so guilty for the thoughts of the life that could have been?

I suppose then that in answer to my question I would mostly like to change the start to life J had. I would like him to be less frustrated by being able to communicate his needs. I would like him to not be overwhelmed by the world around him at times and to know how to cope with his worries in a less stressful way for him.

I wouldn’t want to change his loving, smiling, fun and caring personality. I wouldn’t want to change how much he loves me and how often he shows me this. I wouldn’t want to take away his innocence in how he sees things and the wonder he gets from even the littlest of things at times. I sometimes wish I could see the world through his eyes and capture the raw joy in what he experiences.

Would taking away his autism change these other things? I don’t really think so. Autism is a part of who J is but it’s not the whole. He is so much more than his autism, so capable and resilient in spite of the difficulties and challenges it throws at him. Maybe having these challenges helps to shape in into the little character he is but when I see him distressed and in full meltdown mode I can’t help but wish it was different for him.

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Sometimes I just don’t understand. 

J has come so far with communication. He tries so hard to let us know what he wants or needs. If we don’t understand, he always tries another way to tell or show us what he’s trying to say. This makes it all the harder to take when we simply cannot work out what he’s trying to ask. There are sometimes when, no matter how hard we try to work it out and no matter how much he perseveres in getting his message across, we simply can’t understand. It’s frustrating for us, so I can’t imagine how frustrating it must be for J.

We have tried many approaches to support communication and help him to share his thoughts and ideas, as well as to develop his understanding and ability to listen. We have read numerous articles, attended courses, gone to meetings and workshops in his school, read books on the topic and tried out several approaches to support and develop how we all communicate. Some have been more successful than others. We have tried many things; More than Words, PECS, photo visuals, routine visuals, speech therapy; too many to mention.

I think this makes it harder to take when we still can’t meet his needs because we can’t understand what he is asking. As J gets bigger, his frustration is shown in different ways too. Sometimes he can react well and just move on to something else. At other times, he becomes distressed and cries. On a few occasions he has thrown things or tried to hit. This worries me. He’s not normally violent and we have counted ourselves lucky that this is the case. I really hope that this doesn’t change.

So, what’s the point of this post? I suppose I’m thinking out loud a little and also hoping someone might have experience of this and a successful way of tackling it. If there’s anything we haven’t tried already, which could help us understand when we run out of things to try, we would be willing to give it a try. All suggestions welcome.

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Autism and Behaviour

As J gets older we notice quite big changes in his behaviour. Obviously these things happen for any child as they grow and develop. Their bodies change, their minds change and they form opinions and ideas of their own. All children need support and encouragement to deal with these changes and help them to manage their feelings and behaviour appropriately.

Part of the difficulty we have is knowing just how much J understands. My feeling is that his Autism is not an excuse to allow him to behave in any way he wants. We still have a responsibility to show him the right way, to help him calm his emotions and to choose nicer ways to deal with his he feels. He may take a little longer to understand it and need to be shown more often but that doesn’t mean we shouldn’t keep trying. He will become and adult and we wouldn’t be doing our duty as parents if we didn’t give him the skills to enable him to function in the world. If he doesn’t develop the ability to deal with his feelings and to manage his reactions, he will not know how to deal with other adults and this could end up getting him into a lot of trouble!

Lately he has become a bit more ‘stubborn’ as his teacher puts it. I’m sure it’s her nicer way of saying he is just being awkward and refusing to do certain things! We have found this at home too. He says ‘bup’ whin means no and lifts his shoulder whilst turning away from us, or shaking his head and raising his hand. He takes things from his brother, sister and cousins more often than before and refuses to hive them back. He has started to hit out at times and refuses to say sorry. At times I think it correlates with his mood. If he’s tired or ‘hangry’ it is definitely worse. Sometimes he thinks he’s playing and he takes it too far.

We are trying to find good ways to deal with this new behaviour. We don’t think finger-wagging, nagging or shouting will help. If we speak sternly he has started telling us to ‘shut up’! A phrase he must have learned elsewhere. He’s still non-verbal and uses random phrases he hears at times. This is not a phrase we want to encourage! The question then is, what should we do now? We are trying to be patient, to correct his behaviour by letting him know it’s not the right thing, showing him other ways. His limited understanding and the need for repetition on a long-term basis make this a slow process. If anyone has any useful ideas or tried and tested tips I would really appreciate it!

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Fear of germs

Since J was born I seem to have developed a fear of germs. Don’t get me wrong, I liked clean things and places beforehand but I wasn’t quite as obsessed with germs, bugs and sanitising before he came along. I didn’t realise how bad I was until a trip to Liverpool with my husband. We were out for a meal and then heading out to listen to some music. When leaving the loos I noticed that the woman before me hadn’t washed her hands. This meant I would have to touch the door handle she had just touched. I honestly couldn’t bring myself to do it. I just waited until someone else came through the door and held the wooden part of the door open with my elbow to walk through. Luckily I didn’t have to wait long for this to happen. I think even if I had though, I would still have waited. I couldn’t have gone back to the table having touched the door handle without again washing my hands.

It got me thinking. Am I like this all of the time? Am I as bad as that all of the time? It turns out that I am. I’ve been keeping an eye on it since then. I couldn’t count how often I wash my hands each day. On top of that I use hand sanitiser when I don’t have easy access to a sink. There isn’t enough hand moisturiser to compensate for how often I wash or sanitise my hands. I don’t like to touch door handles, press buttons on pedestrian crossings, sit on train seats or handle money. I can’t cope with public toilets and I’m not overly keen on shaking hands with strangers.

Once I noticed what I was doing and thought about how it came about I got back to J’s birth, or rather the period of time after he was born when he was very ill. It all goes back to his time in special care and the fact that I thought he was going to die.

When visiting the special care unit everyone must sanitise their hands. The doctors and nurses wash and sanitise their hands before examining the babies and again afterwards. Everything is clean and sterile. In the circumstances I took comfort in this. I liked that these measures were in place to protect these vulnerable babies. I think I then overdid this to make sure J was as protected as possible from germs and bacteria, long after he was home and out of danger.

I made people who wanted to hold him wash or sanitise their hands. If they had been outside I made them take off their jackets too. I washed him once people left to take away any unnecessary germs, just in case. I didn’t think the people he came into contact with were unclean, I just wasn’t taking any chances. I couldn’t risk him being sick again.

I know children come into contact with many germs and that it actually helps build their immunity. I work with children and I don’t shy away from wiping noses, changing children or cleaning up mess. I just make sure I give my hands an extra thorough wash afterwards.

I am getting a little better with this. I don’t get as worried by my kids dirty faces or hands. I don’t fret that they put toys in the mud or on the ground and then play with them again before sticking their hands in their mouths, or something equally as disgusting. My children are messy and dirty and I don’t stop them from doing things because of my aversion to germs, kids will be kids and they need to explore and have fun. I do sometimes wish I had a decontamination room for them afterwards though!

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Do you ever feel judged?

I’m usually good at keeping myself in check and not letting people get to me with their judgment but I’m sad to say that today I answered back. On a trip out with the kids, who were actually quite well behaved, I had the displeasure of a horrible woman who mouthed off loudly about how much she hated our of control children whose parents just allowed them to run around and misbehave. I answered her by thanking her for her ill-informed judgement that showed just how little she understood about anything and by saying how much I hated people who ignorantly voiced opinions, as though they had some kind of God-given right to tell others what to do.

To put it in context, we were in a visitors centre for a mill that’s a tourist attraction. We were walking up an internal ramp (which was not in an area full of people) to the cafe area. The kids were walking/running up this ramp and J was giggling. They were not by any means out of control or overly noisy or creating a nuisance. How dare they be excited to be visiting somewhere new and how dare a child laugh in a public place eh? How out of control of them! It reminded me of a previous post about a time where I was a little better at ignoring the judgement.

Upside Mum

Tonight on the way home from picking the kids up from my mums after work, I decided to pop into the pound shop with all three of my cherubs in tow. J had been asking (in his approximations of words) for the ‘pound shop’ since we got in the car. He loves having little toys that he can carry around in his hands when he’s doing other things. It was parents night for the two boys yesterday too and I decided I would let them choose a little toy and a sweet as a reward. I had thought about ignoring his requests but since he had been trying so hard to get me to understand his message I decided to give in.

How bad can it be? I asked myself. We will just be popping in for a few minutes and out again. B can hold W’s hand and I…

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Non-verbal language use

Clearing out old posts I started and didn’t manage to finish. I found this one I wrote about a year ago about J’s use of language, even though he is non-verbal. He has made a little progress with language use and we are so proud to see how hard he tries and what he has achieved since I wrote this post originally:

J is what would be termed non-verbal. He finds it difficult to use words to communicate his needs and in fact, difficult to form words in a decipherable way. This doesn’t mean he doesn’t try. He tries to copy things we say to him, repeats phrases he sees on tv and attempts to tell us which dinosaur or shark is eating who!

There are times when we are able to make out the words he is using. This can be because he uses them in context and also gestures to what he is talking about. Other times we can tell because the rhythm of what he is saying matches a familiar or common phrase. Sometimes he slows it down and we can make out part of the words he is trying to use. It’s an amazing thing to watch. Something many of us take for granted, it’s as natural to us as breathing. For my J it’s so much more difficult. His brain doesn’t seem to process speech properly. The words can get muddled, or the letters within words. An example would be when he tries to say phone – what we hear is oanf. The sounds are all there, they’re just not in the correct order.

The other night I cried with happiness when he asked me for a cuddle and once I gave him this, he turned his head towards me and asked for a kiss. The words were approximations and most people might not have known what he was asking them to do. He said Give Jude a cuddle please – or ‘ig Jude a guggle peese’ followed by ‘ig Jude a iss peese’. Such simple but such wonderful words. He had a huge smile on his face when I understood and did what he asked. B asks for kisses and cuddles all the time, W even toddles over with her lips pursed making smacking noises to get a kiss. These are also wonderful things, but my J had to work so hard to learn to ask me for these. My heart melts that he loves me enough to try so hard to say this to me and that he actually wants me to kiss and cuddle him – not something all children with autism are able to do.

If I’m honest, J being non-verbal is one of my biggest worries for him as he grows up. It’s one of our biggest frustrations at times too. None of the speech therapists who have worked with him have been able to offer us guidance or advice on how to help him with this. I think they don’t really know themselves. They say just to be patient and wait until he’s ready. My issue with this is that I think he is ready, he just can’t process or assemble the sounds/words properly. To me it seems like a processing issue rather than a lack of understanding or willingness. Does anyone have any other good ideas or solutions to help him with this? Is there anything we can do?

He uses PECS symbols to aid communication but he definitely wants to talk. It’s more apparent when his brother or sister do and I can see he wants to join in. I’m really pleased that he’s trying so hard and he wants to do it. I just wish there was something I could do to make the path a little easier for him!

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Proud Moments

All parents are proud of their children for many reasons and we often have moments where we are particularly proud of something they have achieved. Some of these achievements are big and others small. At times in our family we celebrate and are proud of achievements which may seem small to others. J’s autism and global developmental delay mean that he doesn’t achieve ‘regular’ milestones and can’t always do what others his age are able to.

J finds many things difficult. He can’t always follow rules or instructions, has very little awareness of danger or of other people, he doesn’t always understand what people are saying to him and he is still mostly non-verbal. These things present challenges for him every day. He needs to find alternative ways to communicate, to do tasks, to get through the host of things he comes up against just in normal day-to-day life. We are so proud of the effort he puts in and the resilience he shows in keeping trying even when it’s hard.

Each year his school put on a Nativity performance. Every child in the school takes part in some way, at their own level and suited to their needs and ability. Each time I am amazed at what everyone achieves. The staff work so hard, as do the children, to make it all possible. The children are supported to take part and the staff have aspirational expectations for them. The energy in the school is evident in the performance they give.

Normally J has a costume of some kind on and sits or stands on stage with the others. Often he just looks around and listens to the others as they sing, sometimes joining in with noises in tune to the song. This year he completely blew me away. He was dressed as a king when he came on stage. I assumed he would just be doing the sane old thing. However, this year he had a line to say. For a virtually non-verbal child that is no easy feat. His line probably should have been ‘I bring you gold’ but all he said was ‘gold’. Still, that one word was amazing to hear. The fact that he said it at all, never mind into a microphone on a stage in front of a large audience. I could have burst with pride. I’m not a gushy or overly emotional person but it was enough to bring tears to my eyes.

I can’t thank his teacher, assistants and the other staff in the school enough. They all go above and beyond to provide such amazing opportunities for the children. They help them to achieve so much. The school is such a positive, friendly, lively place where children are truly supported to be all they can be and pushed to challenge themselves and learn new things. So, thank you to all of them for helping my boy to make his stage debut and for consoling him when he realised he couldn’t just leave the stage and sit with us afterwards!

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