Where it began

When I started this blog, I had so many things to write about. Experiences that had happened, both good and bad. Positive stories involving complete strangers, how parenting can be hard, emotional and tiring. Yet it can be magical, happy, full of smiles and laughter all at the same time. I didn’t really mention how we got to that point.

It was at 2 and a half, that the process of getting Ethan diagnosed began. It was a visit from a new health visitor that started the ball rolling. We stood in the living room, talking about Ethan, answering general questions about everyday life, voicing any concerns I had.

Ethan had been running around the living room, bumping into me and repeating the same ‘game’ as we called it, over and over. The health visitor watched, as Ethan formed a line with his favourite trains, becoming upset when the line was broken. At the time I had a suspicion that autism was a possibility, but as a first time mum, there wasn’t really anything to compare Ethan’s behaviour to, to suggest that he was autistic. Sure I had read about autism, but never had a first hand experience with a child who was autistic.

When the health visitor left, that’s when I began researching autism even more, looking for information and explanations for the delayed milestones and researching some of the behaviours that Ethan had been displaying. For example being unresponsive when his name was called, and he also went through a period of seeking out hard surfaces to hit his head on. Looking back, it was mainly out of frustration and being unable to communicate how he was feeling.

A couple of weeks later, the health visitor came back and carried out a test with Ethan. The aim was to assess if he could understand how certain toys worked. For example, he was given a doll and a hairbrush to see if he knew what to do with it. After various activities were completed, the health visitor said that Ethan was boardline on the scales that they used to determine differences. He was referred for an assessment with a paediatrician.

At the appointment, the paediatrician spent a bit of time with Ethan, and asked my opinion of the situation, whether I had any cause for concern. I mentioned autism and her reply was ‘I wouldn’t put Ethan on the spectrum at all.’ I left with more questions than answers. At least if autism was the outcome, in my eyes it answered questions and meant there was a direction to go in or next steps to be taken. The feeling of not knowing, not having answers, was scary.

Fast forward 3 months, with numerous tests being carried out and visits to a hospital for blood tests etc. We had an appointment with the same paediatrician and she said ‘at this stage I think Ethan is autistic.’

From that day, my time was filled with appointments, assessments and reports to get Ethan officially diagnosed. It might seem like a relatively ‘easy’ process, but despite all of the time, energy and tears put into those appointments and assessments, it almost felt like an uphill battle.. pushing against a system that at the time, didn’t usually diagnose children with autism until they were at least 3 years of age.

All of those battles, combined with still having to navigate life with little help and support was very hard. I knew one thing, we would get through this stage, it wouldn’t be easy, but we could do it.. we had to. Regardless of having a diagnosis or not, life was going to be hard, I had to do everything possible to help Ethan.

I didn’t know a lot about autism, how to handle certain behaviours, how to communicate in the best way, but we got into our own groove. I learnt about Ethan, I learnt a lot from him and we found our special way of communicating. Most of the time very little speech was used, Ethan would guide me and I would find ways to figure out what he needed or was trying to show me. As much as I was learning first hand from Ethan, I became his voice but I still wanted to know more. As soon as bedtime came around, that’s when I would pick up a book or research online, I would look for parents who were in the same sort of situation as I was.

Even to this day, years later, I’m still learning. I don’t think you ever stop learning, but the challenges change.

The internet has been a great help, a lot of charities offer help and support to families whose children have additional needs. In the UK for example, the national autistic society has a huge range of information that can be looked at, for free and they also have a phone line that people can use if they wish. Social media is a great tool too, there are other parents out there who use the likes of Facebook and Instagram to share their stories and offer a safe space for parents to ask for help, or to generally chat about the challenges that they are facing every day.

Just knowing that there are other people going through what you are, is very reassuring and it opens up a whole new side of living differently. By looking in the right places, you find your people and you feel so much better for it. Like a weight is shared!

Turning 30

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If you had asked me, in my early 20s. Where I thought I would be, by the time I turned 30. I would have said engaged or married, maybe have 2 children and a house that was mine. I had Ethan when I was 21 and graduated from university within 6 weeks of him being born, so that’s where my story began.

I had spent so long, wishing and hoping for those things to become a reality, part of my life story. I think most people have some sort of idea or thoughts about where they will be in 10 years.

Friends got engaged, married, had babies or brought their first homes together. I went to many lovely weddings, engagement parties, hen dos, joint hen/stag dos & house warmings’. At these gatherings, I watched the most amazing people I know, rightfully celebrating life’s huge milestones and achievements.

These people have made such amazing contributions to my life, as well as working their own butts off and going through life’s battles themselves. A small part of me would leave thinking ‘when will it be my turn, I hope I’m as happy as them when that time arrives’.

The questions that were well meant, I began to dread. Normally it would be ‘when are you getting married’ or ‘when are you going to have another baby’. To which I would smile, shrug and redirect the conversation or just simply say ‘I don’t know’. The questions were asked in a playful, friendly way, but for some reason I felt almost defensive about them being asked.

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Looking back on those situations, I know that you can never ‘plan’ how your life will look in the future. Sure you can make wish lists or vision boards, but life has the power to change whether you’re ready or not.

My son was a happy surprise and the reason why I was able to pick myself up, dust myself down and figure out a new life for us. I think if I didn’t have him, I probably would have spiralled and life would have taken a lot longer to figure itself out for me.

I found a new home for us, and put all of my energy into focusing on, how it would all impact on Ethan’s life. It took a while for me to catch up and make a start on myself and my happiness. How I did it? I simply started asking myself what ‘I’ wanted my life to be and how ‘I’ wanted it to be.

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Aged 29, I started renting, learnt how to pay bills, how to put flat pack furniture together and most importantly… how to catch spiders and set them free! What doesn’t kill you, makes you stronger right. I figured those were the ‘hardest’ things to start with. Truthfully, learning to be on my own, be a single mother, who co parented at the weekends, was actually the hardest change to adjust to.

Learning to invest in myself was hard, I had almost ‘forgotten’ who I was as ‘Charlotte’ before I was a girlfriend or mum. I was so focused on Ethan and his ever changing needs, that I almost felt guilty for doing things for myself. Like I was somehow taking away from him, what little time I needed to benefit both of us in the long run.

Day by day, I learn more about myself, what I like and what I don’t like. What I want for myself in life, the sort of person I would like to have in my life one day.

I’ve started exercising and enjoying it, I feel stronger physically and mentally for it… I know who am I right! Pamper afternoons have become a regular thing, something I struggled with years ago. I find myself setting up the bathroom on a Sunday afternoon, with a bath, book and a face mask. I spend a couple of hours relaxing, reading or listening to a podcast and enjoying myself.

Drinking water or more of it, is still a work in progress. But when I remember, I feel great for it.

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I have completed courses, to help me get to a point where I know what I want to do for a job. I want to do something that helps others, leaves me with a sense of accomplishment and that brings me joy. Being a teaching assistant is the end goal for me, I have had so much experience through Ethan, with his teaching assistants and I love what they do for all children, especially those with additional needs.

I’m at the stage in my life, where I feel like I’m in control of where my life goes. Only I can change it for the better and only I am responsible for my happiness, no one else. My main focus, when I’m not making my life better, is looking after Ethan, making sure he’s living a happy life, and has all that he needs. The balance has changed, for the better, it includes myself as much as Ethan.

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My friendships are amazing, I couldn’t ask for better friends. They have been so present in the last couple of years.. when I have needed it most.

Now 30 is here, and you know what?

I’m happy, I feel grateful for just how strong life has made me, these last few years. If someone asked me now, where I thought I’d be at 30.. the simple answer is, I don’t know. But I’m happy about that, life is a bit like the ending of a really good book. Why would I want to cut straight to the last page, and ruin the mystery of what’s coming.

Sure, I have hopes and dreams, but I have to trust that life has even more amazing plans in store for me. I cant always be in control of everything, scary, yes but so exciting and nerve wracking at times.

Who knows where my 30’s will take me, but I’m ready for the journey.

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Home sweet home

 

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Its Friday morning, 6:30am. I wake to see Ethan still fast asleep next to me, usually I would make the most of a possible lie in… and turn over. Instead, I slowly edge out of bed and close the bedroom door behind me. I see the warm sun light coming from the front bedroom, this was meant to be Ethan’s room. I stand for a minute, feeling the warmth of the light on my toes.

Walking downstairs, I take extra time to appreciate the wooden bannister, the coving on the walls. Soon enough I’m in the living room, it looks lived in. Toys randomly laying on the floor, stuffed bears take up the sofa and there are hand drawn pictures of sonic left like confetti on the carpet.

 

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I make it past the obstacles, opening the curtains, the warm morning sunlight beams through the windows and brightens up the whole room. I never get bored of the view from these windows, its a quiet street, filled with more cats than people throughout the day. The view of neighbours’ garden flowers brighten up the street, making it feel more homely.

In the kitchen, I switch the kettle on and sit at the table, which looks out onto a garden, its cold and dark throughout the winter and gets a lot of sunshine and heat during the summer. I get a sense of calm just sitting in the quiet, slowly trying to wake up and get started for the day. Not long after, I hear foot steps and a voice calling, to ask where I am.

 

 

When we moved in. I joked with friends about, how like the house, I looked ‘OK’ on the outside (when people would ask ‘how I was doing, was I ok?) but if someone took a closer look; they would see the cracks & hurt that had been well hidden, disguised.

The house has its problems, some big, some small. Things that will hopefully be fixed and restored to the way they should be.

I always dreamt of owning my own home, and all the things that came along with that. The last couple of years has taught me that, sometimes you end up taking a different route and that’s ok. I get a happy feeling when I put my key in the front door, slowly but surely, I am putting my mark on it and it feels warm, homely and cosy for myself and Ethan.

Dear Ethan

Ethan (NBP)

I don’t quite know where to begin. I wonder if you noticed at the time, that something had changed between ‘mum and dad.’ I tried my hardest to make sure you were shielded from what was happening. You see grown ups make mistakes, no one is perfect. And sometimes, it is those mistakes that cannot be fixed.

I want you to know, that you are loved so very much. What happened between myself and your dad never changed that.

You were my soul focus, the reason, that stopped me from completely breaking apart. I was sad; hurting; aching and then you would wake up and you did it without knowing but you took that pain away every day.

I’m sorry I couldn’t forgive the mistakes that were made, I’m sorry I took you away from the routine you had, from the only life you’ve known. Most importantly I’m sorry I couldn’t fix our family. For me as your mum, to heal, rebuild and try to be happy again, it was the decision I had to make, for us both.

I know when you are older, you might have more questions about why we live in separate houses. You might have questions about the mistakes that were made, and I will try my best to answer them.

For now, I’m trying my hardest to make sure that you grow up happy, loved and secure. Its safe to say its been hard for both of us, to adjust, to adapt to our different life. We take one day at a time and I am constantly reminded of just how far we have come.

Love always, mum xx

Holding hands

Korbond back to school labelling guide review

I’ am the first person to admit that I am nowhere near organised when it comes to labelling school uniform, lunch bags etc. Casing point, when Ethan initially started school last year, I was so overwhelmed with everything. I resorted to using scrap paper and sticky tape to label his drinks bottle, lunch bag etc.

So when Korbond got in touch and asked if I would like to try out their labelling kit, I jumped at the chance. I was willing to try anything that would make getting ready for back to school easier.

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The labels arrived in a practical little box along with a handy guide, explaining what each label was used for. The guide is laid out clearly, detailing each label separately & simply. There are even a couple of top tips included along with a list of the different retailers that stock the labels. (Tesco, Amazon, Sainsbury’s)

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I have been using the labels for Ethan’s lunch box, drinks bottle and shoes. There was also a great tag in the box that can be attached to school bags or book bags. It is a great way for your child to be able to find their bag amongst the craziness that is the bag area at school.

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I was a little sceptical about labelling the bottle. Some labels tend to peel off halfway through the school day. After a week of being used, soaked and washed in the dishwasher. It is safe to say the label didn’t budge, even when wet. That being said when the bottle broke, I decided to re use the same label on a new bottle. It peeled off after a bit of adjusting, and it stuck to the new bottle as good as new.

I was also impressed by the fact that once written on, no water got in between the paper and laminate of the label. It was good to know that once it had been written on, there was no smudging/ ink running. A little tip, I would suggest using a ball point pen, rather than a gel pen, with the gel pen it starts to run after the laminate is sealed onto the paper.

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I also used another of the labels, on Ethan’s lunch bag. The label has stayed on for just over a month now; which is great when you think, how many children have the same design on their lunch bags.

The sticky back paper labels with laminate covers, have lasted a month into the school term and I’ am really surprised at just how sturdy and practical they are. I will definitely be stocking up on more, when they finally fall off everything!

As well as paper labels, I was intrigued to find what looked like a luggage tag, included in the box with the paper labels.

After further research, the tag is for attaching to a rucksack or book bag. There is a little clear window on the back that can be used to store your child’s name and class number on a small piece of paper. The material used on the tag, is strong, durable and lightweight. The design on the tag is eye catching and unique. For example the spots on Ethan’s tag, are the first thing that he looks for when it comes to finding his bag at home time now.

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The last set of labels that I saw were for use in school shoes, again I haven’t seen anything like these before. One is marked ‘L’ and the other is ‘R’. You simply peel off the backs and stick them firmly on to the insole of the shoe. Just like the other labels, they have lasted a really good amount of time. I think they are brilliant as they have encouraged Ethan to learn, which shoe goes on which foot.

The usual time consuming task of having to re arrange the shoes to the right feet, is avoided. A win all around, we feel less flustered when we’re rushing out of the door in the mornings and the little ones are proud to have ‘done it themselves’. There is no need to worry about your child coming home from school with someone else’s shoes on either because there is also room on the label to write their name and class.

Overall, the labels that Korbond sent to me were really useful and helped me become that little bit more organised. I will definitely be buying more labels when the first ones fall off!

Here is the link to Korbond’s website, if you wanted to have a closer look at the labels I used! (I won’t receive any payment if you do look)

http://sew.korbond.co.uk/product-range/korbond-care-and-repair/back-to-school

I hope you enjoyed this little review. Feel free to let me know if you have used the labels, or whether this has proved as a helpful guide for fellow parents.

 

 

And relax

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It is one of the most common thoughts that goes through every new mum’s head when she has children, “What did I do before I had children?”

I can’t personally pin point, what exactly consumed all of my time before I had Ethan at 21. I was a book loving, DVD watching, university student who was either working or at the university library. But that surely didn’t consume every hour of my day, as much as having a new born baby to look after.

Sure, there are obvious things that I took for granted before having Ethan. For example going to the toilet or having a shower in peace & quiet. Even a little retail therapy isn’t as therapeutic as it once was. I made my first trip into town shopping as a new mum, just before Christmas, Ethan was a couple of weeks old & it was definitely a reality shock. People weren’t as polite as they once seemed, getting from one shop to another took twice as long and its safe to say that Ethan didn’t enjoy the experience either.

When you become a parent, new mum or dad, you learn to adapt & become excepting of the fact that someone else is relying on you. To them you don’t have anything to do apart from look after them.

It can be easy to become bogged down by the hustle & bustle of daily life, ‘not enough hours in the day’ is a phrase you can hear me saying at least once a day. I’m guilty of making endless lists of what has to be done, from meal planning to washing & putting away clothes.

We had so many appointments sent to us for Ethan to attend, that making lists was the only sane way to keep track of everything that was going on or that had to be done. However not everything on my to do list, is urgent enough that it has to be done straight away. For example the pile of clean washing doesn’t have to be put away now; it could be left until the following day.

My message today?

Focus on getting some you time in, put the kids to bed, have a relaxing bath or shower. Put new pyjamas on & relax in front of the telly. Or make a start on the book that you brought, but put to one side along with the others. A chapter a night with a cuppa & a candle lit (if you’re a Yankee candle addict like me) will do wonders for a relaxing state of mind.

If your feeling extra indulgent, you could paint your nails or put a relaxing face mask on. I’m not saying take a whole day & go to a spa, although that is a good idea, if you want to treat yourself on your birthday or at Christmas time. For the more creative type, why not try out an adult colouring book or bake a couple of cupcakes!

The idea is to take some time for you, you’d be surprised at how quickly your mind switches off; your able to focus on the activity at hand & let everything else fall away!

I have vowed to myself that I will try to have a little me time at least 3 times a week; to take some time for me & what I want to do. Whether I paint my nails or begin a new book, the possibilities are endless. If anything, I find that waking up the next day, I’m more relaxed,I have more energy & focus to face the day ahead.

So go on, do that one little me thing tonight! Make a little time to schedule something in & sit back and relax! Let me know what it is that you do to unwind & relax; or let me know if reading this has inspired or encouraged you to start making some time for you!

Charlotte

xo

 

Ethan’s first visit to the theatre.

Ethan has fallen in love with the Gruffalo series. It is safe to say that our house at times, has been taken over by the Gruffalo & the big bad mouse. From reading the books, to watching the dvds, making our very own Gruffalo teddy bear & pom pom figures & even taking a walk through a real life Gruffalo trail. You name it we have done it.

When I saw that the Gruffalo’s child was being shown at our local theatre, I was quick off the mark to make sure we had tickets. If ever a new experience arises; that ethan has never done before. I try to make sure that we put our names down for whatever it may be.

Activites such as going to the cinema or to the theatre; can be a no go for families who have children with autism or other additonal needs. There is such a huge level of planning ahead required, running through what will happen in those places, how the child will be getting there etc.That, by the time you get to said place, the child might be too overwhelmed with the environment in question to stay and enjoy the latest movie showing.

The day arrived for us to go & see ethan’s first theatre show, it is always interesting to see what ethan’s reaction will be. We prepared him for 2 days, telling him what we were going to see, where the show would be held & who we would see once at the place. It helps Ethan cope a bit better when he knows what will be happening, ahead of time.

We got to the theatre, there were alot of excited children captivated by the thought of what they were about to see. Not to mention there was a cloud of the Gruffalo child’s picture on sticks; we got Ethan a stick that he immediately fell in love with & held proudly.

Stepping into the main theatre room, I looked around aimlessly for our seats. I realised that the tickets I had ordered were located one row from the front. One part of me was really pleased with the fact that we were up close & personal with the characters, the other part of me thought “how will Ethan deal with the proximity of our chairs to the stage?”

By this point, I had ethan in my arms, he was unsure about the lighting in the room, the amount of people & the level of noise being given off. Depending on where ethan is in our house for example, he usually has to have every light on, before he can walk around confidently. The sound of people chatting & laughing is something that we can filter out for the most part; but for ethan it can often be unbearable for him as he struggles to process sounds like you & I.

After finding our seats, we tried to put ethan in the middle seat to stop him from wondering off mid play. However he refused to leave my lap, clinging onto me for dear life. Hands over his ears, sat on my lap, he repeated the words “don’t hurt me, don’t hurt me” over and over again. He felt safe & comforted most in this position.

Sure others saw ethan, his body language, his size  (he’s very tall for his age) & wondered why he was acting in this way. I didn’t care, my main thought was whether Ethan would be able to enjoy the story that he had come to love, or whether he would have a complete meltdown before it even began. We waited for the show to begin, families were finding their seats around us, taking photos & chatting about the show. Ethan refused to look at a phone from beginning to end.

I hugged ethan tightly, rubbing his hand to calm him & told him about the book to familiarise him with what he was about to see. The lights dimmed, everyone fell silent. Ethan spent the first 5 minutes with his hands over his face. No amount of coersion was going to make him take his hands away; I was just happy that he was still sat down, if it meant he had to watch the whole play through his fingers, so be it.

As the play went on, he slowly but surely let his hands down. He began to become engrossed in the characters, story telling and singing & dancing. He wasn’t so keen for myself or his daddy to sing along with the story or get him involved. It was very much on his own terms or not at all.

As his mum, I was so happy & elated that he was enjoying the new experience. He adapted so well to the environment, from being completely overwhelmed to clapping along, laughing his little socks off & generally interacting with the characters. It was such a heartwrenching thing to experience with him, I couldn’t help but smile proudly, with a little happy tear in my eye,  to see him so happy & enjoying something that he relates to in such a huge way.

Ethan seems to adjust really well to new situations, so that will continue to drive me to, put him outside of his comfort zone. Small baby steps, nothing too extreme, but things that I know he will enjoy & love. Sky diving is a few years away yet!!

Charlotte

xo

 

 

 

 

Don’t judge us

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(Ethan on one of our little family walks.)

Ethan & I were in a queue at our local supermarket, our shopping trip as usual had gone relatively well. Then the time came for Ethan to hand over the box of strawberry ice cream cones; that had been occupying him whilst I, double checked the list & unloaded everything onto the conveyor belt.

Ethan like many children with autism has a tendency to become fixated by certain items & toys, this box was one of them.

I braced myself for what I knew was coming next. I quietly & patiently tried to explain to Ethan that he had to give the box to the cashier, and that he would get it back. At that time we didn’t have a diagnosis for Ethan, therefore we didn’t have all of the tools that we do now, to help Ethan understand the situation clearer. All I could do was take the box from Ethan and give it back to him mid meltdown.

This situation would usually end up going one of two ways. Ethan would either be too distressed during his meltdown to notice that he had been given back the box, or he would become his usual bouncing & smiling self, reunited with his box once more.

During that time, an older lady had appeared behind us in the queue. I suddenly felt very self-conscious of her, I prepared myself mentally with what I was going to say in response to her.

“Oh dear, she laughs, you’re spoilt aren’t you? You’ll get it back in the minute.”

I heard the words leave her mouth & enter my ears, who was she to think that was ok to say to someone she knew absolutely nothing about. I take a second, a deep breath and turn on my feet to face her.

“Ethan, is autistic, he doesn’t understand certain situations in the same way that other children & adults do. He is the most loving, gentle hearted & kind child you could wish to meet. He isn’t spoilt, he’s just different. Don’t judge him, you don’t know him or us.”

I turned back to Ethan who by that point was happy, he had his box back.

For now, Ethan is totally oblivious to the comments or judgements that are made by strangers around him. I feel compelled as his mother & protecter to shield him from strangers’ rude & negative comments, especially on days like the one mentioned above. I will carry on doing so, until he is capable to do this himself.

Do I still get self-conscious now? Of course, as parents, it comes with the territory. Is my response different? Yes! I have learnt to let rude peoples’ comments go over my head.

Don’t get me wrong, some days I have to try really hard, not to let someone else’s comments bother me or affect how the rest of our day goes.I know my son, I know how his mind thinks & works. Complete strangers thoughts are irrelavant to our family. As the age old saying goes “If you haven’t got anything nice to say, say nothing at all.”

Think before you speak, no two families are the same, everyone’s journey is different.

Don’t judge us, on our unique journey through life. We appreciate understanding faces & unlimited smiles. As the saying goes “It takes 10 muscles to smile but 100 to frown.”

Charlotte

xo

 

Thank you …

When Ethan was younger, before we knew the exact reason for his lack of speech. Why when we called out for him; he didn’t respond at all. I would take him to a play group every Friday morning; he loved the toys, from the play house to the slide. I would find myself noticing little things that Ethan wasn’t doing. For example, he ran around like he was the only child in the room, he didn’t see the dangers of certain activities or other children around him. I would hear other children talking to each other or to their mums, these weren’t full conversations, but compared to Ethan who at the time, didn’t say a word, it was definitely hard to miss.

Many children with autism, struggle with social situations and are quite often happy playing by themselves; in their own bubble, away from others. Ethan would quite happily play by himself all day; unless I’m around. In which case, he goes out of his way, to include me in his game of choice whether it is play dough, toy cars or sand play.

When Ethan first started at nursery, he could be found on his own most days, playing with a specific activity for the whole 2 and a half hour period that he was there for. He became so fixated on the play dough or water table, that he couldn’t be moved. He would run into every child that was in his line of sight, he had no awareness of them or the fact that they were going to be hurt or upset as a result of him running into them. However, recently, Ethan who is in his 2nd year of nursery has become more aware of others around him every day. For example he has become attached to a small group of friends, who he looks for every morning as we walk into the nursery. When I leave him, he is usually stood around a table, watching other children & playing alongside them.

Given any situation, Ethan tends to be more interactive with older children & adults. With children of his own age, he likes to run around with them & copy how they behave; but he wouldn’t join in with a game of tag with them for example. Ethan would just see his friends running around; he wouldn’t understand that there was a specific game going on.

In this blog, I want to share a really lovely example of an experience that we had as a family, with other people around us, just a couple of weeks ago.

On one of our Sunday walks around Cosmeston Lake, we were heading off of the usual footpath that most people take around the lake. There were 2 men, late 20’s/early 30’s kicking a ball back and forth. Ethan saw the football, and said ‘I want to score a goal’. With that he bolted for the men, leaving Jamie & I in the dust. We are used to this sort of thing, calling his name & saying ‘stop’ only works in certain situations, this wasn’t one of them. Children with autism, tend to have no awareness of danger at all. Ethan doesn’t know to look left & right before we cross a road & he would be the first person to run flat out around a busy supermarket car park, regardless of the fast cars.

Myself & Jamie run towards Ethan, picking him up, just before he gets caught in the cross fire of the game being played. We apologise for Ethan adding himself to the game & head off on the path once more. As we walk away, a voice catches my attention & I see a ball heading towards us in the corner of my eye. One of the men had taken it upon himself to kick the ball to Ethan, saying ‘here you go’. Ethan hesitates at first, but with a little encouragement he kicks the ball back to the two men on the grass.

This activity only lasts for about 3 minutes, but that was long enough for Ethan. He didn’t necessarily know how to play the game; he just wanted to score a goal. In Ethan’s mind no words were needed either, he got to kick the ball, but he wasn’t really bothered about communicating with the people around him. We tell Ethan that the game has finished, otherwise he would have spent the rest of the day; kicking the ball back and forth with the men. Something that neither we nor the men would have wanted to do; Ethan begins to wonder away, we thank the men for including him in their game. They’re response was ‘you’re welcome, no problem at all’.

In my eyes, I don’t think they truly realised what they had done. In their minds, they had just let a little boy play football with them. To me they didn’t hesitate to play with Ethan, they didn’t get too close to him. They simply allowed him to have fun, no questions asked. Ethan in turn got to do something that he loved to do, usually with daddy, but this time with strangers. He wanted to include himself, have himself seen & heard.

To the men who made Ethan feel welcome, who asked no questions, and who let him join in with their game. Thank you, Ethan walked away happy & so proud of himself for playing football & scoring a goal. If there were more people around who, didn’t judge, who just treated everyone in the same way, the world would be a much nicer place. We as parents wouldn’t feel like, we are constantly being judged, by those who don’t understand what we’re going through as a family. We wouldn’t feel on edge all of the time & we wouldn’t have to have our guard up constantly, feeling compelled to answer to every ‘tut’ or disapproving look that strangers give us in public.

Charlotte

xo

Are you ok mum?

Those four little words sound like a general, daily question ..

On this occasion, they acted as a que to let go & admit defeat. I had just picked Ethan up from nursery; what was to unfold was completely unexpected and caught me off guard to say the least.

He had become attached to a spiderman figure throughout the morning; when home time came around, he did not want to let go of the toy that had become ‘his toy’. Making our way through the nursery had become a battle, compared to the usual experience, of ethan skipping through the building & often tidying up as he went along.

We found a quiet place next to acorn the nursery pet and, we sat on the floor for 10 minutes. This is normally the best way for ethan to calm down, I explain what is happening & then whilst ethan doesnt always appreciate the situation, we manage to leave & slowly ‘forget’ about the item that he had fallen in love with.

Today, however, was not one of those ‘usual’ days. Ethan had a complete meltdown; whilst other children might have a tantrum and the parents are able to distract them or move them away. Ethan cannot be moved, he goes as ridgit as a board, cries histerically, hits, shouts and swings himself around in any way possible.No amount of cuddles, kisses, distractions or explainations are going to work.

In ethan’s mind, he had gotten so attached to the toy, that he could not understand when it had to be taken off of him & left at nursery.

Ethan’s 1:1 came and managed to get ethan to show me a cow he had helped to paint that morning. One of the many lovely nursery teachers came over & asked the question that I usually answer with a happy, cheery smile on my face.

‘Are you ok mum?’ I heard the words and in my head I was thinking, ‘We’re both tired, Ethan is inconsoleable & I can’t comfort him’. As a mum you want to be able to stop your child’s tears & hurt. I looked at the teacher & I felt the lump in my throat build; I thought I could supress the tears, but for the 1st time in that environment I began to sob. Two nursery teachers later & we were on our way home.

I refused from day 1 of our journey, to allow myself to feel or show any weakness, sadness or defeat in the slightest.I was the one to ask the professionals, all of the questions that I needed to be answered, any advice or help was gratefully received. I would chase up appointments or ring up the hospital, when they refused to play ball with regards to Ethan’s diagnosis. These are examples of instances, where I knew there was no room for negiotiation with emotions. Although frustration & confusion were present most of the time.

I sat at home with a cuppa, whilst ethan began to play & I was able to evaluate what had just happened. Usually 9 times out of 10, I’m strong, organised & well prepared for a meltdown like today’s example. I try to make sure that I get everything in place, that will help ethan to go about his day as calmly & peacefully as possible.

Then I remembered, I’m human, everyone has that one moment or day when things just get too much. I’am constantly realising that it is almost impossible to find the answers to each & every question; I won’t always be able to console ethan during a meltdown & thats ok. As long as I’m there next to him to wipe his tears and hug him; that’s all that matters & it’s all he needs to feel safe after the meltdown has happened.

Thank you for taking the time to read my 1st ever blog post, the next one will follow shortly. I promise the next one will focus more on one of the many highlights of our family experience with autism.

Charlotte

xo