Blogging as therapy?

It’s been a while since I posted a blog post. I’ve started many, based on experiences, feelings, thoughts, etc. I’ve never pressed ‘publish’. Lately I’ve been thinking about why. Why when I loved my blog so, have I fallen away from posting on it. Honestly, there are many reasons. I am very busy (who isn’t?) I work full time in a pretty demanding job. I’ve just secured a new (more demanding) job and my children secure a large amount of my time and attention.

However, all or most of these things existed before when I was finding or making time to post, at least semi-regularly, on my blog. So what has changed? Not a lot really.

I would love to be able to write more and share more. Time is difficult, adding in my new additional University course hasn’t helped, but I kind of think it’s not the only reason. I have found my clog to be extremely therapeutic. Writing down our experiences has definitely helped me to process them, to make sense of things, to deal with it and to move forward. To me, at times, blogging is like therapy.

There are things I don’t say out loud. Maybe it would make them more concrete, more real. Writing them here has helped tremendously. Telling people and getting answers and support without having to actually say the words aloud. It had most definitely helped me through some of the more difficult times. This is why I see blogging as a form of therapy. The supportive people and groups is such a great thing. I really wish I could do more of it and properly engage. I am grateful for all of the advice and even just agreement or acknowledgment I have received.

Maybe the reason I have started to blog less is that I have started to accept and come to terms with our life. It has been a long time in getting to this point. I love my J and everything about him. I accept his difficulties and I wholeheartedly support all that he tries so hard to do and to achieve. I know life will be different for us, not what we expected or planned. I think I am ok with that. We are who we are and it’s no one else’s job or business to try to alter or change that. We do our best, achieve what we can and have a lot of fun and love along the way.

Our life is not perfect, but then who’s life is? We have a good time, we are more fortunate than many and we are grateful for that and for what we have. Life is wonderful and it is what you make of it. Whybwallow on the what ifs and think about what could have been? You lose out on what can be and how wonderful life is by not recognising what you have been given and taking full advantage while you can.

I suppose, in a round about way, I mean that I haven’t greatly needed blogging ‘therapy’ for a while. I love that it’s available and I’m sure I’ll be in need sometime all . I highly recommend it, there are so many supportive people who are willing to give of their time and dispense wisdom and advice. I’m happy to say that at the moment I’m happy, fulfilled and excited about our future. However, I know life has ups and downs and I look forward to being back soon with my posts. I now doubt will need that invaluable help and support regularly along the road. Thanks everyone!

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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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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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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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The first time – Achievements of a child with autism from a parent’s perspective

All children have firsts. The first time they sit up, crawl, eat solid food, walk, talk, ride a bike, etc. For some children these things happen naturally, as they are supposed to. They reach these important developmental milestones within the ‘normal’ timescales and all of this is wonderful, all is well with the world. For others these things are a bit more difficult, take a bit more time and for some may never happen at all. The non-achievement of some of these early milestones, combined with the difficult time around and after J’s birth, helped us to identify his issues and realise that all was not well with his wee world. He didn’t sit up when he was supposed to, he walked before he crawled, he didn’t say those first words everyone longs to hear and it’s likely he might not ever be able to ride a bike.

These basic things are the things that are painful for a parent to bear. Initially you tell yourself that he will get there, it’s just taking him a little longer than it took his cousins. Then you make other excuses, like he preferred walking and was so keen to do this that he didn’t have the patience to crawl first. You ignore the fact that crawling is an important developmental stage and the fact that you know a child missing this out can be a sign that something is wrong. You keep hoping that you’re wrong, that one day it will just all suddenly fall into place and he will do it all at once.

Once B came along it all became a bit more real, something we could no longer hide from or tiptoe around. It was more noticeable, more apparent. J was only 16 months old when we had B and B very quickly caught him up and overtook him developmentally in many ways. Don’t get me wrong, there are lots of things J could do when B couldn’t. For example, he recognises every letter of the alphabet and numbers up towards 100 – even if he can’t verbalise them, he can point them out. He has his strengths and they are many. They’re just not the standard things other children do. He doesn’t draw, write, speak or play imaginatively. He has difficulty sitting for periods of time, settling down and issues with sleeping. He doesn’t understand rules, boundaries or safety. However, he is still a little sponge; soaking up the world around him. He just processes it all in a slightly different way from us.

It can be hard for us to understand what he’s thinking, how he feels or what he wants. He can’t always verbalise it the way B does. It doesn’t stop him trying to show us and he really perseveres in making us understand. He’s started using PECS to communicate when he started school, but it’s limited by what he’s learned about it so far and there are some things it will likely never cover.

He has said mummy for a good while now and I still remember being blown away the first time he said it fairly audibly. It took him a good while longer to say daddy. I remember thinking that this must be hard for my husband. He dealt with it well and tries not to let it bother him too much but I know he feels it. Who wouldn’t? He was our first born and we had to wait for our second child for him to hear that beautiful word for the first time. J says it now and it’s so lovely to hear. For all parents with non-verbal children, we feel your pain. If you haven’t heard those words already please don’t give up hope. Persevere and say it to them every day, you never know if one of those days it will sink in and you will hear it come back to you. Believe me, when it does, it is so worth it.

I will always remember the first time J said ‘I love you mummy.’ By said, I mean in his own way, using his own approximations of words but it was definitely what he said. He was lying in his bed, we had just read his favourite story, I was kissing him and tucking him in. As I do every night, as I kissed him on the cheek, I whispered ‘I love you J.’ It brought tears to my eyes when he whispered back ‘I wuv woo mummee.’ 😪 He has said those words many times since and every time he does I remember that first time and how happy I felt. It helps me remember to persevere, to keep trying, to never give up hope. After all, we all need a little hope, don’t we?

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Suddenly Seven!

I can’t believe that J is seven years old today. How did that happen? In some ways I feel like we’ve been through a lot since his dramatic arrival and also that he has achieved so much in spite of the difficulties he has. Yet I still wonder how it can be seven years since we first met him and I still remember it all so clearly, as though it was only a few weeks or months ago. Continue reading

Where has my baby gone?

As W turns two I can’t help but miss her baby stage. I wrote this post when she turned one and though the same feelings still apply, she has grown and developed so much more since!

Upside Mum

I find myself asking this question more and more lately. My baby girl turned one year old this week and I just can’t believe it. The first year of her life has passed by so quickly and she has grown into an increasingly independent and capable girl in the blink of an eye. She’s no longer my tiny baby. I had wanted that stage to last just a bit longer – she’s my third child and the last member to join and complete our family. I long for her little snuggly face and her lasting gaze as she was fed. I miss holding and cuddling her; with her not wanting to climb down and set off on her adventures. I wish for a few more times of her lying beside me and not wanting to follow her brothers around on their travels. That little helpless bundle has long since moved…

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Planning a family holiday that caters for different needs and interests

At Christmas I wrote a post about trying to have a Christmas that was suited to everyone’s needs. Well, now it’s summer and we found ourselves again in a situation where we needed to really consider everyone’s needs and likes and take these into account in planning where and when to go on holiday. I know everyone does this when they plan a holiday but for some reason it seems to be a minefield for us at the moment, given the children’s ages, J’s needs and my husband and I’s leave dates. Combine all of this and we had a major headache on our hands. Continue reading

Fear of Dogs

Firstly, let me be clear, this is not an attack on dog owners. I’m sure most are careful, considerate and nice. The people I’ve encountered seem nice and I’m sure nothing they have done is deliberate or intentional, merely a lack of awareness or understanding.

J is terrified of dogs. Not just a little bit afraid or unsure – extremely terrified. He can cope with them at a distance; on tv, on the opposite pavement and miles down the road. Any time they come even remotely close to him he starts flapping, tiptoe jumping, whining and trying to climb up people’s legs whilst also trying to run away or hide behind them. The terror is written all over his face and it’s very obvious that he’s scared. Continue reading

Autism’s hard, isn’t it? 

These were the words my five year old said to me yesterday. It was just after he had come in from the back garden, where he had been trying to play in the water with his older brother J. J loves water and he’s not too keen on sharing it with anyone else. B had tried many times to play with him and when that failed he tried to get his own water to play with, only for J to come and take over that too. He eventually just gave up and came inside, where he climbed up onto my knee for a cuddle.

His words got to me and my heart broke for him. He has so much responsibility on his little shoulders. As well as the normal things he’s asked to do to help his brother there are the unseen things, the things we don’t really think about. The efforts he makes to play with his brother, the allowances he has to make for his needs, the times he has to forgo doing something he wants to accommodate his brother and the times he keeps his sister occupied so that we can deal with one of the many disasters that seem to befall J. Continue reading