What a difference a year makes! Happy 8th Birthday J πŸŽ‚

My boy has now turned 8 and I wanted to mark the occasion by thinking about just how far he’s come in his 8 years on this planet. As well as how much of a challenge it has been for him along the way. He’s a remarkable boy in lots of ways. But hey, I’m sure every child is. J is remarkable because of everything he has achieved in spite of his disability, everything he tries even when it’s so much harder for him and for trying and succeeding despite some people writing him off from the outset.

J is mostly happy; he’s fun-loving, adventurous and full of mischief. He is very determined and he perseveres with things, when even the best of us would have long-since given up. Until recently J would have been classed as ‘non-verbal’ as he could not speak. This didn’t stop him showing us what he wanted though. Yes at times it was difficult to figure out but if he could see we didn’t know, he would simply choose another way to show us and keep on going until we worked it out. It must have been really frustrating for him to have to put up with us, the stupid verbal people who had no real idea about proper communication!

When he was younger we really struggled to make sure everything was right for him. We were finding our feet ourselves and having to engage in fight after fight with various people to get him what he needed or deserved. It was, and still is, exhausting at times.

We knew from fairly early on that J was not meeting his milestones. He didn’t sit up, crawl or copy facial gestures as he should. He didn’t goo or gaa, struggled with rolling over and was sick a lot! The doctors eventually put this down to low muscle tone in his core, amongst other issues. He walked without crawling and kept his little hands balled up into the tightest fists most of the time. When he was around 18 months he was referred to a joint assessment team with a physio, occupational therapist and a speech & language therapist. After a few months a programme was put in place to support his movement and he had visits from the OT and physio to support him.

When he was two I took him to a group for children with disabilities and we focused on movement, stories, songs and other fun ways to get the kids engaged. He attended a pre-three nursery placement to support his needs and it was wonderful, the ladies there just ‘got’ him and he was really loved and cared for.

J used to fall a lot and visited the doctor and hospital many times, once needing surgery under general anaesthetic to fix his torn lip 😒 He’s a resilient little boy though and he always bounced back, it never put him off. His awareness of danger is still not fully developed and we have to constantly on guard to keep him safe.

When it came time for him to go to proper nursery we had a big meeting in his pre-three place. I knew he had issues, but working in education and having seen how nursery provision was set up I was sure he would cope fine with the right support. The nursery he was set to go to, who had never even laid eyes on him, were determined this was not the case. They made it clear that they didn’t want him and the message I got consistently from them was that they were unwilling, rather than unable, to meet his needs. They assumed that because he couldn’t speak he could not do anything. His end of year report reflected how little they knew him or had even tried to understand him. His major achievement for the year being that he could ‘bang a drum with support’! I didn’t even bother to ask them what kind of support you need to give someone to bang a drum.

During that year he was diagnosed with Autism, though we already knew this was the case before we got the official confirmation. After this we applied to send him to a specialist nursery who were more able to meet his needs, not least because they were more willing to try. It was a great year for him and he flourished.

After a fight to get him the most suitable placement he moved on to school. I’m so glad I had that fight. His school is a wonderful place, so positive and full of energy. The children are given so many opportunities and they celebrate success loudly and proudly. It’s a unique place, I have never seen anywhere quite like it. You can feel the energy when you walk in the door. J is happy there and he has come on in leaps and bounds. To begin with he used non-verbal communication; pointing, showing, etc. Then he started using PECS which uses a set of pictures in an exchange process to communicate needs and wants. He has also learned Makaton and can show us many signs (though my own ability limits how much of this I can understand – mostly only what I’ve watched on Mr Tumble!)

As a result of all of these opportunities and down to his own hard work and determination, J can also now use many words in context. Some of these are repeated phrases from his tv programmes or the you tube cartoons he watches (known as echolalia). Others are words he has heard from other people. A lot of what he says is down to his own interests and he often won’t repeat something if you don’t hear it or ask him to tell someone else. Not everything he says is clear, sometimes we still don’t understand, but it’s amazing how far he has come!

His development and all he has achieved are testament to his resilience and capability. He rarely gives up. J is very clever, he knows so much about many things. Since before he went to school he knew numbers beyond 20 and could show you every letter of the alphabet when you asked him to point them out. He knew all of his colours and shapes too. Saying them out loud was not something he was able to do but he knew them and it was really just about finding out how we could help him to show us what he knew.

So to you; my beautiful, clever, funny, loving, adventurous, mischievous, amazing eight year old; happy birthday! Enjoy celebrating and being the centre of attention. Be sure to get everyone to sing the song over and over again and keep getting the candle re-lit to blow it out. Make everyone clap and cheer, enjoying the big smile it puts on your face and the joy that shines out in your eyes and your flapping hands from the excitement. It’s your day and you’ve earned that right. You’ve come so far and learned so much. You’ve grown into a wonderful boy who brings lots of happiness to us and you have taught us so much in your life. You’ve taught me to be grateful, to celebrate the little things, to keep going when things are hard and to never underestimate people. Most of all you have shown me that I can also be a strong and determined person when I need to be, that I do have that little bit more fight in me even when I think I’ve used it all up and that I can achieve things others might doubt of me if I just go ahead and do it anyway!

I have so much to thank you for and all of this is only the tip of the iceberg. You have helped me to become the person I am, the mum I am, the teacher I am and to keep on pushing through the hard times. For someone so young, you have shown so many people so many things. I often worry about your future and who will be around to take care of you when we are not. It keeps me awake at times. Then I see how far you’ve come already and it renews my hope. I hope you will continue to flourish, you will continue to find that joy in the little things, you will be able to keep that happy innocence and that one day you will show the world just how much you can do!

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Memories, Milestones and Moderate Tantrums – Happy 3rd Birthday Baby Girl!

My baby girl turns three today. I know people say time flies but I can’t really believe she has reached this milestone already. From tomorrow she will be, in her own words, a big nursery girl. She often tells me that she’s a big girl now, usually when she wants something she knows she’s not allowed because she’s still just a little bit too little!

I’m not sure I’m ready for this. In lots of ways I can believe she’s a big three year old. She’s so very capable, can do lots of things by herself, her speech is just amazing for her age and she certainly knows her own mind. There are times when she knows her own mind just a little bit too well!

In many ways she has been the easiest of my three to get to this point. She has taken most things in her stride and made it clear when it’s not quite time for certain things to happen (like giving up her dummy or staying put in her own room without half a dozen bedtime stories and at least a hundred songs!) However, she’s also been so quick to walk everywhere and give up her buggy – she’s certainly little miss independent when it comes to getting around.

She’s always in the thick of things. My girl has a brilliant imagination, an amazing sense of adventure and an insatiable thirst for knowledge. She has attitude and a joie de vivre that would put many adults to shame and she just generally gets on with things. My boys didn’t know what had hit them, as she’s definitely the boss. She has her daddy wrapped around her little finger and knows how to get her grandad to do just exactly what she wants, without him even realising he’s been conned into it!

My baby is most definitely a force to be reckoned with. She throws herself at everything and has boundless energy. At times I don’t know how she is still standing at the end of the day. She could teach us a thing or two about determination and fun.

On the other hand she’s still so young. She still needs a little reassurance from time to time, needs a hand to hold and a kiss or a cuddle to make things right again when the world takes her by surprise. My girl has such a cheeky smile and always knows just the right look to give to get you to forgive her or make you laugh when you need it. She wears her heart on her sleeve and you always know just exactly how she feels about things. Her face gives it all away. If she’s happy it beams from her beautiful eyes and gorgeous smile and when she’s sad that little pout would just melt you.

I know I’m biased, she’s my baby after all. She is also my saving grace. She keeps me sane. That little face can light up the room and help even the most rotten days feel so much better. There are times when she just knows I need a smile, a kiss or a cuddle. She’s a whirlwind but she’s my girl, my friend and my partner in crime. At times I don’t want her to grow up, I want her to be my baby and always need me to look after her. I want to hold that little hand and see that lovely smile, wipe away those tears and sing that ‘one more song’. These moments don’t last very long and at times we miss how beautiful they are, as we are caught up in the busy throes of life.

I already see the things she doesn’t need me to do for her any more and my heart breaks a little, but I know there are many more adventures to come. We have a lot to do and learn together. She may not need me to zip up her coat or help her put on her shoes, but there will be many different ways she will. I will always be there to hold that hand, calm that fear and wipe away those tears. I hope that as she grows she knows how much I love and appreciate her, how she has helped me so much already and I hope that we will always be best friends and partners in crime.

So, to my beautiful baby girl, happy third birthday. Welcome officially to being a ‘big girl’. Just remember that even big girls are allowed to need their mum sometimes and I will always be here when you do! πŸ˜˜πŸ’ž

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Sometimes I just don’t understand.Β 

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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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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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

A rose by any other name…

I’m changing my name! Ok not me, literally but I’m changing the name of the blog. My wee blog, awetismblog, and its name have served me well so far and I really appreciate all of the follows, likes and comments. Thanks everyone. I hope you will all continue to follow me under my new name. The content will be still be the same and the layout, at least for now, will still be similar. I have just been having a think about things lately. About our lives, family, the purpose of the blog and what it means for us and says about us.

When I started blogging it was purely to share my thoughts and experiences of autism. I think as it has progressed, it has become a bit more than this. It’s more a story of our lives and my thoughts/feelings. My purpose has always been for me to try to find the positive in things and learn lessons from what has gone on. Where I am definitely in awe of my son and his personality and progress in spite of his difficulties, I don’t want autism to be what defines him, or us. Yes autism has a big impact on us and what we do, but it’s not what I want our whole lives to be about.

This is not because I have an issue with the label or that I am in some way ashamed of it. Anyone who knows me knows that I am extremely proud of my family and what they all achieve. I regularly highlight issues associated with autism and its effects. I celebrate the good and learn from the not so good. Life is full of ups and downs, it’s hard, but it’s also rewarding and full of moments that make it all worthwhile. Therefore I see myself as a person who prefers to try to look on the bright side, the upside, and that’s why I’ve chosen this as my new name.

Everyone needs a makeover or fresh start once in a while, this is mine. I really hope that you will all stick with me in my next chapter of my blogging life and continue to lend me the wonderful support you have shown so far. It really has helped me to pick myself up after the hard days and feel good about the better ones.

Thank you!

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Keep Calm and Carry On Linking Sunday

The Pramshed

My Random Musings

Party time

Just a wee quick post about a party we were at yesterday. J doesn’t go to many parties. Not because he’s not invited or because we don’t take him but many of the people he goes to school with don’t seem to have parties. I’m not complaining, we’ve not really had an official party for him either. I don’t think he would cope very well with it. The noise and people would most likely be a bit too much.

He has been to a few of parties though and his tolerance has increased each time. He now settles eventually and at times even seems like he’s enjoying himself.

Continue reading