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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Visiting the doctor

I dread taking J to the doctor. He really doesn’t like it. We always have to wait past the appointment time, so he’s already had enough before we even go in. He hates the confined space and wants to either escape or play with all of the items around the room. Some doctors are more accommodating than others, some have toys he can play with to distract him and others allow him to explore the things around him. Others can be impatient with him, have a stand-offish manner and are sometimes quite dismissive.

With all of these previous experiences stored up in my mind, I took him for an appointment yesterday after I finished work. I started to build it up as soon as I left work. On my drive home I began to play out all of the possible scenarios in my head and plan possible reactions and diversions for each one. What would I use to divert his attention if he became distressed, how would I get him to sit and wait in the waiting area, what would I do if he refused to get up to go in, how would I stop him spinning the fan or opening the filing cabinet? The list goes on and on. We have had so many appointments with so many different people over the last few years. Each one brings challenges, new surroundings, new people, different levels of experience or tolerance but almost always the same or similar reactions from J. He does not like it!

Today started off no differently from usual. He was whining as we went in and very unsettled. He wanted to play with the bead run where some smaller children were playing. I managed to keep him back until they moved away. He then jumped around the table moving the beads and running back and forward to check I was watching. He was happy with this but kept saying his approximation of ‘doctor’ and whining intermittently. We waited a long time past his appointment time. He then decided he needed the toilet. We have been trying to train him, so I didn’t want to say no. This meant a journey back to the main door, which was a bit away and I was worried we would miss our slot. I waited in the reception queue to tell them but it was long and he was dancing around holding himself. A very nice lady in front of me in the queue said that she would let them know I was taking him if he was called to go in. She asked his name and smiled at us. I thanked her very much and hurried off to the toilets.

People who know me well know how big an issue I have with public toilets! This was a major ordeal for me. I had to clean up the toilet a bit to let him sit on it, hold his hands and hold him so that’s he didn’t touch it and make sure his trousers did not touch the edge or get wet! Then came the hand washing and drying. He hates hand dryers so that was an issue, luckily I had tissues to dry his hands.

On returning to the waiting area the nice lady told me that his name hadn’t been called yet. I thanked her again, though it probably wasn’t enough to show how grateful I really was. It was so kind of her and it’s not something I’ve ever had before. We waited again and J was getting really fractious by now. I was starting to worry about how he would be when we got in.

Eventually a young doctor came round and called J’s name. He smiled at J as we walked over. J began to whine and say ‘doctor’ several times and the doctor replied ‘yup, that’s me!’ As we walked to the room J started saying ‘ahh here’ while touching his hair. He seemed to think the doctor was going to cut his hair! The doctor reassured him that he wasn’t going to cut his hair and this seemed to put J as ease.

I have to say, this doctor has been the best GP J has seen so far. He was calm, friendly, funny and he really seemed to make J feel a bit more comfortable. There were even some toys that J could play with and a little table for him to sit at, which just made his experience better. It wasn’t perfect, J still whined and was unsettled but he let the doctor feel the lump on his head, look in his mouth, take his temperature and sound his chest. He even gave the doctor a cuddle because he knew who Spongebob Squarepants was.

As we were leaving he did try to steal a couple of smurf toys and was a bit reluctant to leave without them, but we can’t have everything. He got through the appointment and the doctor got to check what he needed to check. All in all I think that made it a huge success. Small steps for most but a massive leap for my boy!

Thank you to that doctor and to the lovely lady in the reception queue, who both made a relatively unpleasant task a lot more bearable.

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Do you ever feel judged?

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 will hold J’s. I am now telling my stupid self that it can indeed be extremely bad. It will not go as smoothly as you think or hope. The kids will not follow all of the instructions you give and J will certainly not take kindly to having to hold your hand when he wants to run off on an adventure to find toys.

I reminded them all before we went in that they had to walk, stay close to me, not touch anything they weren’t buying and that they needed to use quiet voices when inside. I knew I was asking a lot but I hoped they would listen and not go completely mad. They did manage this for a short time. We walked in together and made our way towards the toys.

J was excited, bouncing as he walked and flapping his hands wildly. This immediately drew the attention of a girl who worked there. She stood and stared at him and then at me. I ignored her and walked on past and up to the toys. W chose a toy and J chose three. I asked him to put two down and just choose one. He shook his body, meaning no and started to walk away with all three. I gently reminded him to take just one and put the other two back. He shook again and turned away from me to run off. I took his hand and firmly told him to put two toys back.

At this point I noticed the girl had turned around and was watching us again. She had a look of slight annoyance on her face. I looked back at her, making eye contact, willing her to either look or go away. She didn’t. I took two of the toys from J and placed them back where he got them. We moved on to the craft items for B to make his selection. I had to hurry him along a bit as J was becoming impatient.

We headed for the sweet aisle. As we walked round the corner there was a big wedge of plastic lying on the floor and J accidentally kicked it with his foot, which sent it skidding along the tiles. At this point I heard a loud tut and turned to see the same girl now standing at the bottom off the aisle we were in, glaring at us and shaking her head. I loudly said ‘oh dear J be careful, you nearly tripped over that big piece of plastic that has been left lying in the middle of the floor’ and stared back at her. At this point I became quite annoyed. Had she been following us and watching us the whole time? Was it just a coincidence? What had we done that she found so distasteful?

All of the questions were going round in my head. Then I became quite indignant. The kids hadn’t been misbehaving. J was relatively good, pushing the limits a bit but fairly calm considering how he can be at times. I was also annoyed that she was behaving in the manner she was and very clearly passing judgment on us, with very little reason or knowledge of the full situation. We are as entitled to shop as anyone else. We weren’t making a mess, breaking things, running around or being overly noisy. We were buying quite a few things and despite it being a pound shop I had managed to spend over £20. I decided that I wasn’t cutting our trip short and leaving without some of the things we came in for, just because their shop assistant was ignorant to feelings and behaving in an unkind manner. I shook my head back at her and finished shopping.

When we got to the checkout she had been called over to serve to lessen the queue. I actually found myself hoping that we wouldn’t be served by her and even considered allowing someone else to go ahead of us if she became free first. Then I gave myself a shake and told myself I was being ridiculous to be upset like this by someone who means very little to us in the grand scheme of things. Why should I care what she thinks of us or how she behaves?

That’s the point though. I do still care. It upsets me that people feel that they are free to openly stand in judgement of me. That they think it’s ok to show their disapproval of my child and our situation. That they somehow think it’s ok to behave in a way that is so unkind. Would her reaction have been the same if she hadn’t seen J flapping and bouncing when we came in? He was doing it quietly and not getting in anyone’s way, it’s just a stim he has at times. She didn’t appear to be looking at my other two or disapproving of them.

Sometimes I wish I was brave enough, or confrontational enough, to have a word with these people. To tell them how inappropriate their behaviour is and how unwarranted their judgement is. I wish I could show them what it’s like to be us for a few hours, or just for one outing or shopping trip. To show them how hard it is for J and for me just to be there and do that. To let them feel the anxieties we have in the situation.

Again I look for the lesson or the positive to take from the situation. I realise I’m glad I didn’t make a scene or say anything. It was better just to ignore it. My kids hadn’t noticed and me saying something would have drawn their attention to her behaviour. I don’t think it would have made a difference anyway. You can’t make everyone understand or expect them to be reasonable. My mum often uses a famous quote; ‘Never judge a man until you have walked a mile in his sandals.’ I realise that whilst I felt judged by this girl, if I said something and lectured her, I would also be passing some kind of judgement. I too would be engaging in behaviour that could upset someone else. I remind myself of my own favourite quote to ‘Be kind, always!’ and decide to show a level of kindness and tolerance that she did not show to us. If she had said something to us or told J off then this may have been entirely different but for now I bite my tongue, lick my wounds, pick myself up and move on.

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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