What a difference a year makes! Happy 8th Birthday J 🎂

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! 😘💞

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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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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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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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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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”Tale
”Cup

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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