Striving for continence

I don’t normally talk about something so personal but I thought it was worth sharing our experience as lot of children struggle with continence. Continence is something Eliza has always struggled with. She is seven years old and wears pull-ups both day and night. There have been so many hurdles to jump including fear of small spaces, fear of noisy hand dryers and just being in a place that is always different. Lets face it, at home it is easier as the bathroom pretty much looks the same but when you are out and about every toilet place looks, smells and sounds different. It has taken years and I mean YEARS to bypass all these hurdles and we have gone at her pace with the odd nudge forward if we thought she was ready. There was even a time when she was a ‘smearer’ and for months we went through a regular routine involving bathing and cleaning rooms. I’m going to visualize so many parents nodding because they know what I mean. For those of you that don’t, brace yourselves…. Eliza would smear poop all over her walls, her clothes, her face, the carpet and any other surface she could reach. Mainly sensory led we worked hard to overcome that stage and *touches wood* it’s been a very long time since we saw any of that. It has been a long process of reassurance, explanations and visual aids but we are so close now. By we I obviously mean she,  Eliza is the one working towards being continent but I say we as it’s a journey of hers where I have always been by her side guiding her and preparing her. During the last few months she has been using the bathroom more and more and trying really hard to be continent.

After a lovely meeting with the continence team this week we decided it was time to take the next step and move from pull-ups (nappies but shaped like pants/knickers) to proper cotton knickers (Eliza has chosen to call them knickers but some of you may say pants, undies, underwear… but as Eliza calls her pull-ups ‘pants’ we needed a different word).  As it is such a change we thought using washable incontinence knickers would be a step forward – these are simply cotton and look like normal girls knickers but with a built in cotton booster to help with little accidents, you know those ‘not quite made it’ moments. The hope is as time progresses she will then just move on to normal girls knickers in time. We have extra books ready to help her learn about how it’s quite normal to use the loo etc. This is when I decided on a plan that may help her take to the idea even more.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces rather than walks. So I decided to write her this letter…


This letter will be ‘delivered’ to her on Tuesday as she breaks up from School for the holidays. As you will see in the letter, we have mentioned Mrs Claus and a special present. To help Eliza with her next step towards continence and use her love of Christmas I am making up a pretty box, a ‘special present’ from Mrs Claus. Inside the box will be some pretty knickers, books, stickers and a new kids padded toilet seat (you know those ones you can move on and off as needed). It will be wrapped up and will have a letter from Mrs Claus attached. The fact that Santa, in his letter above, will have pre warned her about the present will ready her for the arrival of this special gift. This is the letter from Mrs Claus…


So that is my plan and I hope it helps her on her transition. I thought the special box should come from Mrs Claus, you know, girl to girl as such. So there it is, my cheeky use of something my child loves being used to try and help her with something she struggles with. It wont work for all children, this is just something I know will go down well with Eliza. Although I hope it gives some of you ideas that things like this can work. It doesn’t have to be Christmas, it could be linked to a favourite character or film. This is just something I know MY child will adore and be amazed at. Eliza is very visual, she likes to see/watch and to read and she will read the letters over and over with joy. I am hoping it gives her that extra boost in confidence to at least try the knickers and we will just from there, at her pace like we always do.

A Special Little Girl’s Christmas


Dear Santa

As another Christmas approaches fast, I always think back to one special meeting we had a few years ago. It was a visit that changed how my daughter (and myself) saw Christmas and helped her enjoy what can be a stressful time of year that is full of change. Back in 2012 we came to see you in your magical winter wonderland with Eliza who was 3 years old. It was extremely busy as every child on earth wants to meet Santa and who can blame them, you rock! We had to queue, something Eliza wasn’t very good at them. The queue was in a very very VERY busy crowd of people, another thing Eliza wasn’t very good with. You see Santa, autistic children struggle with crowds, noise, waiting, busy atmospheres and change but Eliza had only one goal in mind which was to meet you.

“Merry Christmas to you all, you have a special little girl”

We spent what felt like years in a queue trying to entertain her as best we could and eventually reached the front of the queue. One of your kind elves led us to a door which opened and there you were waiting for us. The room was amazing and I was lost in the magic of Christmas as I admired the tree, the decorations, the smells and the lights. Eliza ignored you as you tried to ask her what she wanted for Christmas and whether she thought Mummy had been good that year (For the record Santa I am pretty good most of the time, honest). I nervously stepped forward and said “I’m sorry, she can’t talk yet” and you looked at me, smiled and nodded. Eliza wandered around the room being nosy, looking at her face in shiny baubles and picking up things that caught her eye. I started to move in a bit of a panic but you touched my hand and said “Leave her be, she’s OK. Nothing in here that can hurt her”.  A grumpy elf knocked and suggested time was ticking by but you kindly said we needed a little longer. Eliza carried on looking around and then she finally looked at you and came and sat by you. You quickly took this opportunity to greet her again and she smiled. She started to flap, it’s something she does when she is happy. Spontaneously Eliza leaned in towards your hand to give it a kiss at the same time you clicked a secret button to take her photo with you. I thanked you about a million times (probably at least ten in reality) because you made her visit so relaxed and comfortable. As we left the room you grabbed my hand and said “Merry Christmas to you all, you have a special little girl”.

The words you said to me have always stayed in my head. Every year we approach Christmas and I think of that one visit to see you. You see Santa what you didn’t know was that three weeks before we met you, Eliza had received her diagnosis of Autism with moderate-severe learning difficulties. She could not speak other than 2 or 3 words. The world overwhelmed her and she struggled to find her place in it. You made her feel so at ease and she had a wonderful time seeing you. For me as a parent I am so grateful to how you treated her and for the kind things you said to me. Thank you Santa for taking the time to let her anxiety drop, for letting her explore and just being understanding and kind. 

Eliza’s mum xx

The biggest thing that worries me is a thought no parent wants to have

Every single parent goes through moments of wondering what the future holds for our children. For some it is about college, University or employment and for others it could be wondering if they will get married, have children of their own. Those are daydream moments you get that leave a smile on your face. I have a child that has Autism, her learning disabilities classed as ‘moderate-severe’. As much as she improves on a daily basis with her social skills, understanding, communication; it’s unlikely she will live alone and always need some level of support and supervision. It worries me all the time, the future. For the time being she spends most of her days at school, loving being with friends and learning what she can. There will one day come a moment that scares me, the day she becomes classed as an adult. Long before then I will do my best to plan with her what she wants in the future but things change all the time.

“They finish school and do what…”

Services for adults with autism in the UK seem to be a postcode lottery with some areas having great resources and support, others having none. I have friends with older children who have now left school and have nothing in place because respite spaces are tight, funds constantly reduced and generally all services being cut or restricted. So the young adult ends up at home, with parents trying to fight a system that gets harder every year. What does the government expect the parents to do? Leave employment and take care of our children/adults relying on the pittance carers allowance they pay (£62/$81 a week for full time around the clock care). I know there are other benefits and financial help out there but the point being these children will one day grow up in to adults. Autism doesn’t go away, it is a lifelong condition. They finish school and do what? End up at home because of cuts to services, placements and support. It worries me, a lot. Eliza is only 7 years old so a lot can change in the years before she is legally an adult. I sincerely hope there will be more services in place by then.

“What happens when I die…”

The biggest thing that worries me is a thought no parent wants to have. What happens when I die? Who will take care of her? Will she manage without me? Who will understand her like I do? I could go on and fill this entire blog with questions that have gone through my head. She has a wonderful bond with her younger brother already and I know he will always be a part of her life but he will have his own life to lead. I would never expect him to take over her care in the future, even though I am sure he would. Sometimes I can’t sleep because of this question, what really will happen….. I have seen other bloggers write about similar thoughts so I know it isn’t just me thinking these things. We all worry for all of our children regardless if they have Special Needs or not but for those that are extra vulnerable, it sits at the back of your mind all the time.

“I push her comfort zones because she needs it”


Friends often comment about how much I do with Eliza, how we have tried so many different things already – ballet, gymnastics, cooking club and horse therapy to be a few. Why? Because she doesn’t willingly offer me information on what she wants or needs sometimes so all I can do is try things with her and expose her to new experiences. I test her boundaries and I push her comfort zones because she needs it, she needs to learn that the world will do this to her for the rest of her life. As much as we try and maintain a great routine, I often break it in the hope to show her that it’s OK when things do not go to plan because, let’s face it, life doesn’t always go to plan. If she can learn coping techniques and how to be a little more flexible, these will be great for the future for her. I will always try and show her new things, to keep teaching her about life. I read something on a Facebook page last year that has stuck with me ever since. It was a picture of a young lad and the words read something like “The greatest gift I can give him is to teach him how to live without me”. It hurts to read and type that because it hits home. One day we won’t be here for them, they will go on to face this world without us. We can hope services and employment opportunities will be there and that somehow a support network will guide them through what they need. So for now, I test Eliza’s flexibility and I try and expose her to new things. I help her come to terms with change, learn to cope with it. I push her boundaries so that she becomes used to different scenarios, situations and problems even now at the young age of 7. I hope to keep giving her the support and courage to try new things and live life to the fullest. This is all I can do as a parent because, like that post om Facebook said, she needs to learn to one day live without me.




If stripping was in The Olympics….


Are you watching the Olympics? I love it and often sit here making remarks like “If Eliza were in that contest…..”

If stripping was an Olympic sport, Eliza would win Gold every single time. In under twenty seconds she can undress and sit back on the couch, remote control in hand and Mickey Mouse on TV yet this is the child that simply can not undress herself for bed or PE at school…..

Flapping!!! Another Gold, she seriously looks like she would take off sometimes. Flappy when happy though, beautiful smile she has and when she is laughing she has a dimple that is super cute. I wonder if she could flap through high jump, she definitely has the long legs. We tried Gymnastics before with her, she told me how bored she was after only 2 sessions.

Sprinting, well I think we would all have gold medalists on our hands. Someone opens a bag of crisps and whoosh, she is off like a highly trained sniffer dog! Don’t ever forget how fast they go from ‘dead weight laying on the floor refusing to move’ to someone that would give Usain Bolt a run for his money at the blink of an eye.

Shot Put is another. Wow, how I have seen iPad’s and juice cups fly. Not to mention shoes, DS consoles, remote controls, siblings….

A judo/wrestling combo is something that happens daily in our house between Eliza and Noah. That grabbing of clothes, linking legs and throwing each other on the floor. Usually to decide who gets the TV remote or the last pack of crisps. Oh or a toy that neither of them played with for months yet one of them found and it’s suddenly like treasure!

Weightlifting I think belongs to us parents. Lifting that ‘dead weight’ child from the middle of roads, car parks, parks and bundling them safely in the car. Carrying them up the stairs or removing them from the top of a sibling they are sat on. I should have muscles like Popeye by now.

I love to reflect and I have learnt many things from what I have just written above…

– I watch too much Olympics
– A lot of issues are caused by crisps
– I need to get out more

Enjoy your Tuesday and the Olympics xxx

You can follow us here Living With Blooming Autism

Five awesome cheap activities to do with the kids



cropped-822524745o4tleq2tie5zril.jpgAlthough we do a variety of things during the weekends and school holidays, these are probably the five that are most enjoyed by my children and have led to hours of fun. They are all also relatively cheap to do and set up as well as easy to store away for another day (other that the gingerbread, please eat and enjoy that).



Fairly cheap to buy and many accessories to add to make it fun and also great for helping with social stories. We have the clown and his hair grows so you can cut it. You can make pies to balance in his hands. This really helped my daughter conquer her fear of having her hair trimmed and she found it fun. Play-Doh is really good to learn cutting skills, rolling, shaping and great at improving the hand muscles which in turn help fine motor skills. It’s also amazing for letting imagination run wild. We have made Play-Doh cakes, animals, flower garden, faces….. you can make anything you want. It is also fairly easy to clean up afterwards and put away for another day.

Decorating Gingerbread

Another fairly cheap activity and even more fun if you make and bake the gingerbread yourself. Of course they don’t have to be shaped like a person. On the few times we baked in the past we have made gingerbread flowers, houses, stars, trees (apart from summer, this is also a fab winter activity. At Christmas get the kids to decorate festive shaped gingerbread and pop in a jar or tub, add a bow and you have a lovely home made gift for someone). Any shape you wish really, the kids love decorating them. We use a variety of things to decorate – icing in different colours, smarties, jelly beans, hundreds & thousands. Can help coordination, fine motor skills and encourage choice as well as the added bonus of testing touch, taste, smell. It is a great activity for creativity and imagination and of course quite a tasty one!

Kinetic Sand

Prices have come down recently for this so once you have your basic quantities it is quite a good deal money wise. Many packs come with a box to store the sand in a few moulds, rollers, mini spades. We purchased a couple of inflatable trays to use the sand in (as in photo below) and this helps keep the sand in one area and keeps it easy to tidy (and if you have more than one child, stops the fighting if they have a tray each). It’s a good sensory activity and leads to much creativity and imaginative ideas. It is available in a variety of colours and is a perfect activity for indoors if you find yourselves stuck indoors on a rainy day.


Most kids enjoy making a mess!! Paints are quite cheap to buy, as are a few brushes and rollers, sponges, rags. You can even paint with hands, fingers, feet! Paper is the cheapest choice but you can pick up some lovely blank canvas in the sales which make beautiful gifts for friends and family once decorated by your children. We have recently painted wooden bird houses, money boxes, little wooden treasure boxes, canvas, paper masks, balloons, plain white tiles, pasta (uncooked, in case you wondered 🙂 and you can then thread them on string and make pretty jewellery). Just be aware that if you have a stimmer like Eliza, a lot of other stuff gets painted when the ‘flappy when happy’ arms start – hair, tables, floors, cats, noses…… You really can paint anything you like and it can lead to a lot of messy fun. Throw in some glitters, stickers….. whatever your imagination fancies.


Probably the cheapest activity and can be used in so many ways. You have your normal tub of bubbles and a small wand that the child blows through. Simple and fun. Also highly effective for super anxious and upset children/adults to do as it encourages steady breathing in and out. Calming themselves and they don’t even know it. It’s a sneaky weapon I use when Eliza is anxious, I send her outside with bubbles. She thinks she is going to blow fun bubbles, a distraction as such and she has no idea that what she is doing is quite soothing and calming. Don’t forget you can get large bubble wands that can be waved in the air (perfect for the child or adult that can’t control breathing yet or needs a sturdier, larger wand), bubble guns of all shapes and sizes.

Thanks for reading. If you try any that you never did before then I hope you all really enjoy the activities. You can follow Eliza’s journey over at….

Why routine is important to us and why we purposely break it


I used to wonder if routine really worked when we first found out she was autistic. I remember the consultant, speech therapist and even nursery teacher all saying “Routine is key”. To me I was thinking what a boring life that would give her as I didn’t know or appreciate how bigger part of her life routine would become. They all told us to start small, meals at certain times and bath at certain time and so on, gradually introducing other things that were daily life. In time we created a daily planner board so we could add ‘extras’, you know the things that don’t happen daily but need to be seen as happening. Eliza is a very visual child, she likes to see (and memorize) what is happening in her life. When she gets a new timetable for school, she knows it lesson by lesson after a couple of days. Handy for the days that I forget what we are doing but she doesn’t and announces things like “Mummy, it’s swimming today”. Yes, my 6 year old has a better memory than I do!

Yesterday I had a phone call from school mid morning. Eliza had an upset tummy and had had diarrhea so, as per school rules, she needed collecting and has to be off for 48hrs minimum as a precaution. I popped Noah in the car and went to fetch her, checking in at reception to wait for her. The school nurse appeared and asked if I could go to class and collect Eliza as Eliza was refusing to leave class. So off we went, and as I entered the class room I was met with a ‘What you doing here’ look from Eliza and her not so subtle “Goodbye Mummy, see you later” announcement. She wasn’t being rude, she was in her right to say I needed to go because Mummy is never at school unless invited to class events likes sports day. She was confused as to why I was there. This was school, this was her thing and I was not supposed to be there. I had not been invited!! I got down on my knees to her level and asked her to come home, she refused. I explained in basic words that her tummy was poorly and needed a rest at home, she refused. I said I had found the ‘lost’ DS games (They do get ‘lost’ now and again if you catch my drift). That swung it and she got up and fetched her bag and we came home.

When we got home she didn’t want the DS, she wanted to get her sensory fiddle toys out so she did. I had pulled her from school in the middle of ‘Tac Pac’, a sensory programme. She then insisted on eating her lunch that was in her school bag because that is what she would have done. I asked her to get changed out of uniform and she became upset and told me “No, we go back to school now”. I said school had finished for the day and asked her what she wanted to do “Swimming time” was her answer because that is what she would have done in the afternoon. She got teary when I said swimming was not an option because of her tummy. So instead we got a blanket on the floor and pretended it was water, we pretended to swim and she giggled and smiled. When we reached about half past three in the afternoon, she stripped out of her uniform and fetched her pyjamas and asked for a juice and a biscuit. This is her usual routine when she gets home at around that time. She has an hour on her computer whilst I cook dinner so off she went and switched it on and she was calm and relaxed, no more tears and tension because she had some how made it through the day that I interrupted by bringing her home and now ‘normal’ had resumed for her. Even though she was confused and upset, she coped and we got through it by almost mirroring what she would have done in school so she had some sense of ‘normal’ in her day and it made sense to her.

It might seem small and pointless to some, but breaking a routine can cause huge meltdowns, stress, anxiety, upset and anger. That fear of the unknown, unplanned and unprepared takes over and any sense of calm and reasoning just disappears. Two years ago she would have had to be carried out of class screaming and crying because she would not have coped with such a change that was not planned. It is something we work on at home and at school. At school there are things that you can not plan for – snow day, fire alarm or unexpected sickness. There are times at home that I throw in unexpected plans in to her day because they will happen in everyday life as she grows older. Not everything can be planned for so I push her boundaries and comfort zones. I make her try new things like horse therapy or ballet knowing it will trigger feelings of anxiety, stress, anger but also knowing in my head and heart that she is capable of change and can cope when given the right support and understanding. Routine is important in so many ways but so it breaking it sometimes.

Autism & Anxiety


Dear Anxiety

It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.

We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.

I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.

Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.

Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.

Yours Sincerely

Eliza’s Mum