Off The Scale

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This last couple of months, Thurston has become an expert in driving me up the flipping wall. I don’t think it’s helping that we are in the throes of the Summer Holidays and so he is missing school and being permanently busy. It’s very difficult to keep up that kind of stimulation at home with other children to consider. Although I am sympathetic, he has been an absolute pain in the neck. (A gorgeous and funny pain in the neck of course!)

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We have noticed for a while now that Thurston cannot stand the sound of silence and fills the gaps with humming, reciting episodes of sitcoms, singing or worst of all, screaming. It really really grates on me and I find it incredibly frustrating. If I want him to answer me in the midst of this, I have to ask him if he can hear me before I ask a question, otherwise he just won’t snap out of it. Alex took him for his check-up with the Paediatrician recently and she picked up on it immediately. We had no idea that it could even be a symptom of something and had just attributed it to him being annoying!! She said that it is Auditory Seeking Behaviour and is a sensory aspect of Autism Spectrum Disorder. It is a bit like a comfort blanket for your ears! If he is feeling nervous or stressed, then making noise “hugs” him and makes him feel safer. She gave us some tips on how to help him cope with this. So far, nothing has had much effect but at least I can empathise a little more!

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The paediatrician completely disagreed with the School Nurse that we had seen about his lack of toilet training and referred him to the Bladder & Bowel Team which was a relief as we weren’t happy that the School Nurse kept putting it off, especially since there is a 10 month waiting list!!

The thing that really concerns me at the moment is Thurston’s weight and energy levels. We saw the Dietitian about a month ago and she measured Thurston as being on the 0.4th percentile on the growth charts. He is often on that line so I was disappointed but not massively surprised. However, when the Paediatrician measured him, he weighed 15.9kg which at 6 years old means he doesn’t even make it onto the chart. This meant that he had lost weight between these appointments. I can’t help but feel really terrible about this and I actually feel somewhat of a failure. As soon as you have a baby, so much emphasis is put on the baby gaining weight and thriving and mums are congratulated on their chunky babies. It’s completely understandable, but when you have a baby or child who doesn’t gain weight, or worse still, loses weight, it is very disheartening. All I want to do is feed him up, but it is seemingly an impossible task.

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Due to a very abnormal urine result a couple of years ago combined with his single palmar crease, we were referred to a Metabolic specialist by our Geneticist. We went to the Evelina Hospital in London for further testing as the doctors suspected Barth’s Syndrome. Luckily, that came back negative, however, the doctor still suspected a Metabolic Disorder but without any new symptoms, he couldn’t test for extra syndromes. Since then, we have muddled along with the Dietitian and Thurston’s diet has remained being predominantly made up of a specialist high-calorie formula. Our usual Dietitian left and the replacement we recently saw was verging on ridiculous. Considering his dairy allergy, it seemed unbelievable that she repeatedly suggested cheese and ice cream to fortify his calorie intake. Aside from that, she had no suggestions and simply told us to book in for an appointment in 6 months.

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In the last 2 months, he has eaten approximately 3-4 meals PER WEEK! Even then, these are by no means large or balanced meals, and I am permanently wracked with guilt. My mum has taken to dropping by emergency McDonalds Happy Meals as they are one of the few calorie-dense meals he will try to eat. He doesn’t touch his breakfast. He moves his lunch around his plate but when I piece it back together, there are no bites missing. He has given up on snacks. He has a few nibbles of dinner. And that’s that. In the past, when he has been through phases like this, he has upped his formula intake. This time, he seems to have even gone off of that, and manages 2 bottles a day at most.

Last week, he had a lot of mouth ulcers and his gums were bleeding so he was very sore. We were stuck in a vicious cycle because the ulcers are obviously caused by the lack of nutrition, but Thurston won’t eat if his mouth is sore. The last time this happened, the dentist prescribed a mouthwash which would “sting a lot but cure the ulcers”, but I just can’t stand to cause him any more pain!! This week, his mouth is a little better but he is very fatigued and easily upset.

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Luckily for us, we actually have another appointment at the Evelina in London this week. This time it is with a Behavioural Feeding Clinic in the Neurosciences department. It’s such good timing because if we didn’t have that to focus on and aim towards, I think I would be tearing my hair out. I will absolutely never make an issue out of food or let him see how stressed I am. I will never force food on him, or even make him join us at the table. The food is always there for him whenever he wants it, but he has to want it. When he is tucked up at night though, it does weigh heavy on my mind that he must be hungry and how I wish I could make him see the joy in food like I do! I love him xx

 

 

 

Bright Nights

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Sometimes I have an idea in my head for something I want the kids to wear and it simply doesn’t exist. When Thurston was a toddler I wanted him to have bandana bibs but they were nowhere to be found, and now that we no longer need them I have seen them popping up everywhere! For a long time, I have wanted slim fitting pyjamas but they were equally difficult to come by, but I’ve finally found some that are exactly as I pictured them and I want to share them with everyone!!

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My boys are all on the ‘skinny’ side and traditional pyjamas just swamped them. They’d end up wrapped and tangled in all that hot flannelette material during the night and would end up very hot and uncomfortable. Because Thurston suffered with febrile convulsions I was always very conscious of keeping him cool at night, so I kept him in sleepsuits for as long as possible as they were usually 100% cotton. When it came to buying pyjamas for him, a lot of the high street ones are covered in gaudy cartoon characters attached with that plastic transfer type stuff which causes sweaty nights!

I ordered Indigo a sleepsuit from The Bright Company after finding them on Instagram. It was on sale at £10 and was such a glorious mix of bright colours and pattern. It looked absolutely adorable on her and we had a lot of compliments on it. She has worn it during the day as it is so cute that it easily passes for daywear. It is one of the only sleepsuits that I’ve found true-to-size, no dangling legs to trip over, and the cuffs fold over neatly so her arms aren’t caught up in the sleeves.

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Soon afterwards, I ordered Thurston and Indigo some pyjamas. The pyjamas are just what I’ve been looking for. I got the Slim Jyms on sale for £16 and they are amazing quality. The cotton interlock jersey fabric is nice and stretchy so they never lose their shape. The patterns are all completely unisex and mix n match.

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I’ve also bought him some Short Jyms on sale at £14 which are so nice and cool for Summer nights, and if you’re having a lazy day they could easily pass for t-shirt and shorts!

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There are some gorgeous new colours and patterns for Autumn/Winter 2014 and I can’t wait to get Thurston and Indigo a set of the Mint & Teal and Steel Slim Jyms. I’d also love to indulge in some of the bedding for Thurston, if it’s as soft as the pjs it must be amazingly snug!

I was feeling a bit sad about Indigo growing out of sleepsuits and leaving that piece of babyhood behind her but she looks so snuggly and sweet in these pyjamas that I’m not even bothered now!!

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The Bright Company are such a lovely company, the pyjamas are all handmade in the UK. They often have discounts and competitions over on Instagram too! There is a rumour that they will be going up to older sizes at the end of 2015, so I’m hoping I can get all of my 4 in a set next year! Until then, Louis and Zeke will have to suffice with their dads’ old band t shirts!!

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Eat Me!

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We’ve been weaning Indigo since she was 6 months. To start with we did the traditional purée way and she became bored fairly quickly. I would always just give her a piece of whatever I was eating to chew on, as long as it was appropriate. She seemed to enjoy that more and more and by 12 months, we generally just gave her the same as what we ate, with the odd purée here and there.

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As she has become more independent, I have tried to make sure I give her a plate with a selection of foods, and recently I’ve introduced cutlery too! The Oxo Tot Divided Plate is great for this stage of weaning. It means Indigo can have a little bit of everything and pick and choose what she wants to eat. It also helps me to work out what is a good portion size for her! She has been loving this plate and I’ve noticed a real difference in her eating at mealtimes. If I give her a normal plate she will throw it on the floor almost immediately but with the divided plate, she seems to enjoy investigating what is in each compartment!
We also have the Oxo Tot Fork & Spoon Set. For now, Indigo has just been playing around with the cutlery but I know that eventually that is how she will learn to use it properly. It’s lovely and chunky and curved to sit in little chubby hands!

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One of the hurdles that we are still struggling with Thurston is his ability to drink from cups. He doesn’t have a very strong suck or swallow and so cups have always been an issue. He has his formula from a baby bottle but he has chewed through the teat so that he doesn’t have to bother sucking! He drinks water from a beaker with a spout but I am keen to move him forward into something a but more grown-up. I had tried to get him to drink from a straw several times before but he always tipped the cup upwards and covered himself in water and then would get very angry!!
I gave him the Oxo Tot Twist Top Water Bottle and left him to it. I didn’t really expect much but when I returned from the kitchen he had already mastered it!! The safety of having the lid attached to the cup meant that when he tipped the cup it didn’t spill, which gave him the time to realise that he had to suck through the straw. He drank the entire cup full with no problem. You can twist the top of the cup hiding the straw away meaning it’s perfect for travelling with as it won’t spill!

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I love this range, it’s so scientific looking and easy to use. I am so thrilled that I have finally found a decent cup for Thurston to use and I’m going to get a spare one for when he goes back to school in September!!

Advice

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I spent the morning at my local children’s development centre which is conveniently at the end of my road! I was invited along to a course run by an organisation and the course was called “Behaviours that Challenge”. It got off to a good start because 1) the receptionist returned my lost sunglasses to me that I left there at my last appointment and 2) there was tea and biscuits!

It was really full compared to other courses I’ve been on, I think there were about 30 parents/carers altogether. I was hoping to find out some techniques on dealing with Thurston’s main behavioural problem areas which are violent outbursts and screaming. I was disappointed to discover that the only information to be had was the same old Autism advice of routine, visual aids and consistency. From the start of Thurston’s diagnosis, I have always felt like “routine” has been suggested to us almost as a ‘prescription’ for how to deal with Autism. There seems to be no understanding from anyone in the healthcare profession that there might be another way. All children with Autism are completely different just as all children are different, so I don’t really subscribe to this ‘one size fits all’ approach.

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My aim is to help Thurston to cope in a world without routine, because life doesn’t have a routine. Events get cancelled, people get sick, we move house, people die, we get invited to places at the last minute, the weather isn’t what we expected etc etc. You simply can’t plan for everything and where does that leave an Autistic child who has put all their trust and understanding into a routine that cannot be disrupted? However, the aim of this course seemed to be to coerce these children with challenging behaviour to live within a rigid routine where they know exactly when, how and where everything will happen in the hope that this will limit their frustrations and difficulties. For example, the course leader suggested if your child hates the supermarket to shop online. If you apply this theory to everything the child dislikes then surely the child will end up very isolated and the anxieties will get worse.

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Having spoken amongst ourselves as parents and carers, it was obvious to me that there is no one specific technique that works to ‘fix’ these behaviours. All we can do is try and think outside the box and come up with solutions that work for our own children as we are the ones who know them best. I mentioned a new habit of Thurston’s which has only happened a couple of times but caught my attention which is that he licked the metal fly on Alex’s zip. Obviously, this is just a sensory issue and the taste of the metal is the goal of the behaviour. The other parents recognised this immediately which made me smile as I listened to other stories of kids licking peoples’ boots on the bus and another child smashing up bricks to try and eat them. The sensory issues can be truly bizarre! The course leader quickly fixated on the fact that the zip fly was in Alex’s crotch which she decided made it a ‘safeguarding’ issue that needed to be stopped immediately. The use of a sign hanging in our house of a picture of a pair of trousers with a red cross over it was to be the solution to his ‘inappropriate touching’. This just showed me how people organising these things are missing the real issues. There was nothing suspicious or inappropriate about his behaviour, it just happened to be where he could find some metal. I remember in the early days Thurston lifted his top to show his keyworker his tummy and instead of being impressed at his knowledge of body parts like I was, she told me I shouldn’t be “responding to that kind of behaviour”.

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I find it really saddening that people attach connotations to things that these kids see as natural. No one appears to be trying to see the world from their point of view. Sometimes, I feel it is ok to laugh at these things. I might wait until he leaves the room or he can’t see me, but it’s not a bad thing to be lighthearted or see the funny side of Autism. I asked him the other day if he liked somebody and he said “no”, when I asked him why he said “she’s a d**khead”. He didn’t mean it, he doesn’t think that, he just liked that word, and if I’m honest it was so hilarious!!

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I think that it is possible for an Autistic child to exist in a world without strict routine and that’s what I am striving for. I know it might not be right for everyone, but it is a possibility I’m sure. I never want to limit Thurston’s access to new experiences. I want him to be able to roam free and enjoy everything he wants to.

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The worst part about the course was listening to other peoples’ experiences. The majority of the parents/carers had older kids, mostly teenagers. I do struggle with the ‘glimpses into the future’ as it is just so unknown. Everyone had such horrible problems; their kids were breaking their parents’ bones with violent behaviour; kids were self harming; some teenagers had a phobia of using the toilet. It was so scary, but scariest of all was the fact that none of them were getting the simple help they needed. There seemed to be an agreement amongst us that the help and training goes to the school system and not the families which definitely needs to be changed.

I came away feeling a bit deflated and none the wiser about coping with Thurston’s aggressive behaviour which is a shame, but it was in some way comforting that we are not on our own!

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Homework

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My older boys Louis and Zeke typically hate to do homework. They will whinge, cry, sulk, shout and actually hide away to try and get out of doing it. They don’t out any effort in and just get worse and worse if Alex or I try to get involved and help them. It’s an ongoing issue!

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When Thurston started school, I was naturally worried that he would have the same allergy to homework as his brothers. I was especially concerned because he doesn’t sleep much and it’s a long day at school so I didn’t expect him to want to continue with school work when he got home. I couldn’t have been more wrong. Nothing perks Thurston up like opening up that school book bag!!

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He loves the familiarity of doing a spot of homework. The routine of doing his work and the calmness of sitting down at the table to do a task really make him happy.

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The one thing Thurston loves above all is reading. I remember when Thurston was over 2 worrying that he would never learn to speak let alone read. Yet somehow he has turned out to be a fantastic reader. He didn’t do so well learning to read phonetically and he seems to have mostly taught himself through photographic memory. However he managed it, he is 3rd in his (mainstream) class and enjoys nothing more than reading a book.

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He is a big fan of The Gruffalo and Room on the Broom by Julia Donaldson and loves I Will Not Ever Never Eat a Tomato from the Charlie & Lola range by Lauren Child.
Above all, he is besotted with the classic Biff, Chip and Kipper books from the Oxford Reading Tree. I can even remember these from my own childhood!

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His 1:1 assistant at school told me how much he loved to read this series and every so often I will buy him one as a treat. My mum and sister have also bought him a few so he has his own little selection of them at home now. Having some of his own has meant that he doesn’t get too attached to his school books and so he can carry on moving through the levels.
The books really help with his imagination and he finds them very comforting. We took them on holiday with us and they helped to cocoon him from the stresses around him when he was having a bad day.

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He will fall asleep reading them and even sat in the rain reading one which we have been drying on top of the tumble drier for a couple of days now, it’s turned out a bit crispy.

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We lost track of him for a few minutes recently at a wedding only to find him in a marquee with some old ladies reading “Gran” to them!

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It’s amazing how much these simple books give him so much happiness. They are definitely Thurston’s firm favourites!!

Ripple Effects

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I actually already wrote this blog post a couple of days ago but my daughter whacked the keyboard and somehow it vanished from cyberspace. I’ve sulked about it for a while so I will try and reassemble it from what I remember!!

I wanted to explain some of the side effects of Autism Spectrum Disorder, side effects that happen to the whole family not just Thurston. Autism has affected our lives in lots of ways that people wouldn’t automatically realise and it always helps when someone is understanding of the situation, so I’ve put together a list of 4 issues we face in our family that are ripple effects of Thurston’s diagnosis.

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#1 The other 3 children have nothing in the house that is truly ‘theirs’. As far as Thurston is concerned, everything is up for grabs whether it is his or not. It’s very difficult to expect a 10 year old and a 7 year old to accept that they can’t be attached to their possessions. This also means that we don’t really let them have very expensive items as we can’t take the risk. Not only does Thurston take the other kids’ stuff whenever he pleases, he is also constantly breaking things. It doesn’t matter if it’s a brand new birthday present or a Lego masterpiece that has taken hours of construction, if Thurston wants to see what would happen if he throws it down the stairs or flushes it down the loo then it’s gone.

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#2 Money. I remember when he was first diagnosed that several people made comments to me about ‘all the money’ we would receive and how we ‘must be loving this’ because he was entitled to Disability Living Allowance and I could claim Carer’s Allowance. I don’t know if those people had actually checked the figures on these benefits but it hardly seems like I’ve won the lottery. There are a lot of costs involved with having a child like Thurston. For example, last week we had to replace his school uniform because he didn’t know he had pooed and it had covered his back and his school clothes. I have to replace the teats for the bottles he drinks his formula from monthly because he chews through them due to his sensory issues. They cost £4.49 for 2 and he has 6 bottles. He suffers from Pes Planus and so I have to buy him high-ankle supportive shoes as his insoles push his feet out of normal shoes. When we were looking at schools for Thurston we naturally tried to get him into the same school as our other boys. The school was completely unhelpful and really disappointed us. They weren’t willing to fund a care suite for him and instead insisted I would have to go into school to change his nappies. We found a school that was excited to have Thurston and enthusiastic to take on all his challenges. Although it is a mainstream school, it is affiliated with the local special needs school and is specialised in inclusion. The downside to this is that it is physically impossible for 1 person to do the school run. There is no help available with this at all. Alex had to go part-time at work to help with the school run, which inevitably makes money even tighter. The benefits associated with Thurston’s disabilities do not even cover the costs combined with the loss of earnings.

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#3 I’ve had to sacrifice working for the foreseeable future. With my other children, my husband and I worked opposite shifts to share childcare and I took pride in the money I contributed towards the household. The odds of finding a job to work around the school run (for which I can never be even a minute late as it triggers a meltdown), appointments, meetings etc plus actually being a responsible, professional employee after staying awake for 40 hours is near impossible. Nowadays, the only money I earn is my Carer’s Allowance. Carer’s Allowance is currently £61.35 a week. I’m sure a lot of people don’t even think I should get that considering Thurston attends school full time. However, I am awake when Thurston is awake, he is not safe to be left alone when awake in the night. So if he sleeps from 8pm-1am then I am awake from 1am and that’s that. I also have to complete bundles of paperwork for everything that he needs whether it be DLA, TAF meetings, care plans for the school Medical Officer, Blue Badge applications etc. No one ever sends out appointments they are supposed to, so another chunk of the week is spent on the telephone to receptionists/secretaries to chase up important appointments. Then there is the time that the appointments/meetings take up. For example, next week Thurston has Physiotherapy (a weekly appointment), an Occupational therapy appointment, I am going on a course about Challenging Behaviour, he has a dietician appointment at the hospital, and we have a Team around the Family meeting at school. Then we have to do the therapy ‘homework’ wherever possible at home, making sure he bounces on the trampoline for his core strength, practicing Speech Therapy exercises with him etc. He is not toilet trained so at 6 years old we are still changing nappies plus he needs specialist formula and medication to be administered. If you add all this together, I’m pretty sure the hourly rate from the £61.35 Carer’s Allowance would be a bit of an insult.

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#4 I find this really hard to admit but sometimes I really struggle with the embarrassment that Autism can cause. I’m not the type of person that enjoys attention and find the stares, comments and tuts from the public really hard to take. The difficulty with Autism is that it is an invisible disability and that the symptoms can be interpreted by strangers as ‘naughtiness’. If we are out and Thurston is screaming, laying on the floor, shouting “bloody hell” or hitting me, then I can’t help but feel embarrassed. I’m only human! Sometimes, I can embrace the situation and have ended up doing some bizarre things to placate Thurston when we are out in public. I have sat on the floor in the middle of a Primark aisle because Thurston has been upset that I have been feeding Indigo and he wants to be a baby too. I know my eldest son can be really embarrassed by some of the stuff Thurston does, one of the worst being throwing chips at an old woman in Pizza Hut, whereas I think my middle son is just jealous that Thurston can do and say the things that he wishes he could!

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We’ve adapted as best we can to cope with these challenges and I think we do pretty well on the whole. All the hard work and exhaustion is worth it when I look at the joy on this little face when he’s having a good day!

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Sweet Little Bird

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I am very fussy about children’s clothes and as my older 2 are 10 and nearly 8 years old, they do not let me have a lot of say in what they wear anymore! Their clothes tend to be dictated more by what all their friends are wearing and they have a couple of items that they wear all the time and are reluctant to try new things. My eldest is particularly fond of his 90’s Fresh Prince of Bel Air t shirt and my middle son has some very strange ideas of what pieces from his wardrobe make a good outfit!

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Thurston can be incredibly fussy about his clothes too. Often it is out of habit, he is very attached to a pair of very unflattering trousers he calls “the black trousers” which are more like grey elasticated, cuff-hemmed jeans, awful! Some of it is to do with sensory issues and he loves to have bare arms in the winter and long sleeves in the summer months!

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Lately, Thurston has been a lot more experimental with his clothes and will rifle through his and his brothers’ wardrobes as well as the dressing up box and I’ve enjoyed the opportunity to try new bits on him.
With the addition of Indigo, the only girl, to our family, clothes shopping for the kids has become a bit more exciting again! Not only can I shop from the boys and girls sections now but she has no say in what she wears for now so the pleasure is all mine!!

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My absolute favourite kidswear range is Jools Oliver's Little Bird for Mothercare. It is currently only available in sizes for my younger 2 children and it is absolutely irresistable. Every piece in the collection is so special and the little details included in the items show you how much thought Jools puts into her designs.
There is a retro, nostalgic feel to the range which I love. Rainbows, toadstools and fawns feature heavily and give the clothes an enchanting feel.

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If I was to imagine how I wanted to dress my kids then the Little Bird range is it. They are clothes very much designed for children to be children. They are comfortable and easily washable. They don't make little boys look like mini-men, and the girls clothes are not overly pink and frilly.

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This range is so sweet, Indigo and Thurston always look adorable in it and it is completely affordable too. As it is sold in Mothercare, there are often discounts or offers you can look out for to make it even easier to buy!
We absolutely adore Little Bird and cannot wait to see what Jools has in store for Autumn/Winter 2014!
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