Mother Moments

I have had a really really lengthy blog break mostly because of a privacy issue which I hope I’ve resolved. I considered starting a new blog altogether but I’ve decided to stick with this one because I don’t want to lose all my old posts. So I think I will just be a little bit more careful about what I share from now on!

Now that more and more of my friends & family have children, and especially now many of them are reaching school age, I hear lots of proud announcements of how brilliantly everyone is getting on at school or with their development. Of course, I’m happy to hear all about everyone’s parenting triumphs and I’m always interested in how all the kids I love are getting on. It does leave me with a weird dilemma though. What are you supposed to say when your kid isn’t doing so well?!!

Generally I don’t brag about my kids academic life anyway, I think they are fairly average children for the most part. They all have areas they are great in and things that they struggle with. However, it really is a different kettle of fish entirely when it comes to a child with special needs. I’m not sure a Facebook status which reads “if Thurston stopped slapping his teacher round the face for five minutes, maybe he’d learn more” would get that many ‘likes’, but that’s the truth of the matter at the moment. Whatever his wonderful helper gets paid, it’s nowhere near enough. They don’t tend to grade the class on how many laptops they’ve thrown across the room, but Thurston would definitely be top of the class in that subject.

If mothers like me do share these experiences, it’s always greeted with either sympathy or advice. Both of which are well meaning of course, but they both still leave me feeling a bit ostracised. I do try to share Thurston’s achievements but I know they sound trivial and almost jokey to some people. It’s hard to know what to do. As much as I love the updates from everybody, I can’t help but feel left out and a little wounded by the jarring realisation of what Thurston could be achieving if it weren’t for his Autism. 

Another issue that crops up is regression. Thurston will often learn to do something and then due to illness or lack of sleep etc, will lose the skill for a little while. Because of that, I tend to delay announcing any new developments because I know that they can be lost just as quickly which makes me feel a bit of a fraud! 

Thurston’s ongoing health issues present similar dilemmas. When people ask how he is, I’m pretty sure they don’t want the full story. During the past week for example, he hasn’t eaten for 4 days in a row apart from 2 bottles of formula a day because the sensation of a wobbly tooth was too upsetting for him. That makes me feel like the worst mother in the world. Sending your child to school on an empty stomach is not something that any mother wants to share. He is pale as a ghost, didn’t speak for days on end and fainted on a school run. That wasn’t really anything out of the ordinary for him. Lately Alex & I have found it all a bit hard emotionally. 

We’ve got quite a few meetings and appointments planned for the next month and I’m really not sure what the outcome will be. It feels like we’ve hit a tricky bump in the road with Thurston’s health and education at the moment, and we’re losing a lot of his skills that are really important like eye contact and showing affection. 

Hopefully he is happy in his strange little world where he speaks in Welsh and laughs at thin air. I hope he never realised his differences and just continues to find joy in all the tiny simple details in life that everyone else is missing.

Decisions & Dilemmas

It’s taken me a while to start this blog post because I couldn’t actually find the computer. It was hidden in the depths of the older boys’ bedroom where they’d been using it to watch Pointless Blog videos on YouTube. I’m stressed out now from being in their room amongst the chaos of Lego, magazines and a million dirty odd socks! I’m also having to hold Indigo with one arm while I type because she feels the need to be permanently attached to me 24/7!

Anyway, the point of this blog post is to try and work out how to make a decision that has been bugging me for more than 3 months now. We have been trying to figure out which direction to take in Thurston’s education and the complicated nature of the whole situation is causing me so much worry at the moment. I have a constant knot in my stomach from trying to work out what is the best solution for everybody. It’s pretty much all I think about!


When Thurston was due to start school, we lived in a different town to the one we live in now. We booked a meeting with the SENCO at the boys’ school to discuss his admission there. It was made perfectly clear to us that they didn’t want him. obviously, they couldn’t say it as literally as that, but once they had made statements such as “we won’t change his nappies, you will need to come in to do that yourself” and “we don’t want his needs to take our budget away from the other children”, we got the message. So, we sent him to a different mainstream school that is affiliated with a special school and had the best of both worlds. The staff loved him there as he was already attending nursery, and they were well equipped and knowledgeable about his needs. We had no qualms at all that it was the right place for him. However, his school was further away and it became impossible for one parent to do both school runs, so Alex reduced his work to part time so that he could do a school run too. We then lost our home and moved nearer to Thurston’s school which is where we are now. Come September, Louis will be at High School and Indigo will start nursery meaning that we’ve ended up in a situation where 4 kids will be at 4 different schools, and I don’t drive! It’s just a big mess!

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A few months ago, I started thinking about the possibility of home educating Thurston. Although I love the school he attends, there have been some big changes there recently and it’s a lot different to the school we applied for originally. The Headteacher and Inclusion Leader have both left. They were very supportive and experienced with special needs, and since they left, our communication with the school has ceased. We haven’t had a TAF meeting in 6 months where before they were 6 weekly. In fact, I haven’t spoken to the replacements once. He has had a new 1:1 assistant who is great but a lot less pushy than his previous one. If there’s one thing Thurston needs, it’s somebody pushy!! He is also due to move up to Year 3 in September which is a big transition, a whole new Key Stage, which is much more structured and routine, something which Thurston struggles with.

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At the end of last year, I attended a 3 hour long meeting to transfer Thurston’s Statement of Special Educational Needs over to the new Educational Healthcare Plan, which was brought in by the Conservative government with the clear objective of cutting the cost of children with special needs to the educational budget. The entire focus of the meeting was costing. Each time an objective was mentioned, the prices were looked up in a catalogue and noted down. I find it really hard to think of Thurston’s education in these terms. If he was educated at home, I wouldn’t have to. I received the draft of the EHCP last week. The objectives include statements such as “for Thurston to sit in a small group of 2/3 for 5 minutes” and “for Thurston to recognise when he is angry”. Is that the best he can aim for? Thurston has ambitions and interests, and he does well academically. So, is it really appropriate that all we are aiming for is that he sits quietly and doesn’t disturb anyone? Thurston wants to speak French, learn to play the guitar, grow vegetables, cook and write magazines. He should have the freedom to do those things. We could do that if we homeschool. I have no worries about his numeracy and literacy, he has continued to do well in those areas, but I am worried about his creativity and wanderlust being stifled. I want to follow his lead and help him to learn whatever his crazy mind is craving. There are a few small niggles too, such as lunchtimes, P.E. etc. He sits alone at lunchtime as he finds the business of the other children too overwhelming. He doesn’t mind sitting alone, but it’s not good for him (or my mum-guilt!) to do so. Eating should be a sociable time, as we learned from the Feeding Psychologist in London, and eating alone will not do his feeding issues any favours. He has become less involved in P.E. recently, preferring to “talk to the hedge” according to his 1:1. There are physical activities that Thurston enjoys such as swimming, trampolining and running on the sand, all of which would be easy to include in our homeschooling day.

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We are currently stuck in a financial rut due to our situation, and home educating Thurston would free Alex up to work full-time, and eventually look for a job that he actually enjoys. This would make such a difference to our entire family. There are only 2 real downsides to the proposal. 1) I have no idea what to do if it doesn’t work out! Would we just reapply to school with our tail between our legs?! 2) Collecting Zeke from school is a 45 minute walk to and from the next town. Thurston certainly wouldn’t be able to walk this distance so it would mean a double buggy full of 2 & 7 year olds for an hour and a half. I don’t have anyone to help me with this so that’s my only option.

The knot in my stomach  is embarrassingly due to the fact that I’m terrified of telling the school! I can’t stand confrontation and I feel like I’m having to break up with them. I don’t know how to explain my argument clearly to them under pressure!

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I would love to hear anyone’s experiences or advice regarding homeschooling as I’m sure there are a million things I haven’t even considered and I’m probably looking at it with rose-tinted glasses! Please leave a comment or tweet me or find me on instagram! @hannahsunited

Thank you for reading!

Eleven things

I have been a bit absent from the blog lately as life has been very hectic. I’m also struggling with some major decisions and I kinda don’t want to post anything until I’ve sorted out my thoughts!!! My friend Nicki at tagged me in this blog trail and I thought it would be nice to take part! I haven’t tagged anyone else because I mainly read my friends blogs, and Alex’s!! I love reading these though!! 

1. Would you consider yourself to be a tidy person or a messy person? 

I am a tidy person who is constantly browbeaten by living with messy children. Normal kid mess is one thing but my youngest son loves to smash food into every crevice in the house. He also likes to arrange his ‘collections’ in very inconvenient places and then screams bloody murder if I move them at all. I cannot relax in a messy house!

2. Would you consider yourself to be a hoarder? 

I am absolutely not a hoarder. I have only a handful of things from childhood: teddy, nighty, diary. I don’t feel sentimental towards items like clothing, tickets etc. I don’t even wear my wedding ring! If it was up to me, we would have a lot less belongings but I am up against 5 other people who love to hang on to things. When we have a clearout, which is about every 6 weeks, I am as ruthless as possible and try to explain to the children that someone else needs these things more than they do!

3. Would you consider yourself to be career driven?

I am not career driven at all. I have no career ambitions. Before children I loved working and I worked up until I had my third child, but once it was found he had special needs, I just couldn’t bear to leave him so I’ve been home full time ever since! If pushed to choose, I would love to be a writer but to be honest I love being a housewife despite that not being a very exciting answer! I love taking care of my family and putting everything I have and every minute of my day into making them happy. 

4. What book or book are you reading at the moment?

I am currently reading a collection of short stories by Miranda July called No One Belongs Here More Than You. It’s really sweet, I like her writing style a lot. 

5. What are the 5 most recent websites you’ve visited?

Center Parcs (that’s where we are off to tomorrow)

Simon Amstell’s website (trying to decide wether to buy tickets to his last UK show of the tour!)

Cerebra (looking into a new parent autism course)

Gap (a spot of shopping!!)

Amy & Ivor (daydreaming over what shoes to buy next for indigo!)

6. What was the last thing you bought?

It was a dress from sainsburys! I was looking at it at the same time as an old lady which would usually put me off but she was so cool, I decided to go for it!

7. What are your thoughts on exercise? Do you do it? Are you a regular do-er?

I have very good intentions and always get thrown off course by general life. I got into a really good routine recently of going to 3 dance/pilates classes per week. Then it was half term, Indi’s birthday, someone was ill etc and it’s all gone wrong! I’m going to get back on it after our holiday though because I hadn’t realised how much it was helping my anxiety. 

8. What’s your favourite smell?

Fresh coffee grounds

9. How does a typical day go?

It can start anywhere from 11pm the previous night to 5.30am in the morning. Thurston gets me up. He has formula then he has a list of demands or topics to chat about. I try to drift in and out of sleep until it seems like there’s no going back! We do breakfast and get the kids sorted for school, Alex takes the boys at 8.20 then I take Thurston (when he lets me, other times he will go in the car with Alex) at 8.30. Indigo and I do housework all morning and then we play in the afternoon before we pick Thurston up at 3.10. We all have a snack/coffee together at home and do whatever anyone wants to do. Sometimes Louis and Zeke have clubs after school (Spanish, movie & animation, Shakespeare!). We eat dinner all together at the table at 6 and the kids go down at 7.30-8pm after stories and Emmerdale for Thurston!! 

10. When did you start your blog and why?

I started my blog a few years ago as I couldn’t find any other sites where autism was talked about in a way I understood. With several kids, it’s hard for me to talk long enough to get my feelings out. With the blog, I can dump it all at once and my family and friends can read it at leisure. 

11. What are your nails like right now?

Natural! I’ve never had a manicure in my life!

  Thank you for tagging me nicki, this was really fun!

The Misfits. The Rebels. The Troublemakers.

Today is April 2nd which is also known as World Autism Awareness Day. I didn’t realise until very recently how conflicted I feel about it or how many emotions it stirs up for me. Thurston was diagnosed as being severely Autistic in March 2010 when he was 21 months old. We did not push for the diagnosis or suspect that he had Autism. Thurston had a range of special needs, the most concerning being a feeding disorder and he was severely delayed in meeting all of his gross motor and fine motor skills milestones. Autism was never something that had crossed our minds. We walked into a multi-disciplinary appointment and walked out an hour later with a diagnosis.


The day itself falls on April 2nd and so the month following Thurston’s diagnosis was filled with articles and documentaries everywhere about Autism. It was overwhelming and terrifying, and just plain bad timing. I felt obligated to sit through some of these documentaries to inform myself as a responsible parent for what was to come. The first one was about older autistic children and the one that stuck in my mind involved a child who was obsessed with poo, and smeared faeces on any surface he could find. All I could think was that this was my future and I needed to get used to it! The other documentary I remember was the Louis Theroux piece about over-medicating kids with ASD in America. It was piercingly sad and the message was so negative. I was overly saturated with information that I now realise was very specific individual stories and actually had no relevance to us at all.


In some ways I consider Thurston to be very lucky because he has no awareness of himself which makes life as an Autistic person much more straightforward. He has no clue that he is any different to anyone else and therefore he has the same dreams and aspirations as anyone would expect from a 6 year old boy. This is something I’m keen to reinforce with him and although I have to explain to his siblings sometimes that he needs different care to them, he is never aware that he is anything other than one of the kids, same as Louis, Indigo and Zeke.


To this day, it still gives me a knot in the pit of my stomach to read or watch anything relating to ASD. I don’t consider it to be relevant to me as I only know Thurston and I can only do what’s best for him. Sometimes these things spring up on me when I’m not expecting them though. I recently went to see Simon Amstell’s “To Be Free” show which included a huge piece about his visit to an Autistic school and how he felt about that. For the first time, I felt like someone had vocalised the way that I feel about Thurston’s condition. He said that he felt there was a pure freedom in Autism, that these children are unrestrained by society’s norms and conventions, and that they just do whatever feels good for them in that moment. Simon Amstell suggested that it is other people who cause the stress and anxiety around Autism by trying to make people fit into the rules and regulations that we would expect. Obviously, this view is simplified and utopian, however, it was the closest perspective to my own philosophy on Autism that I have heard. For the most part, I want Thurston to do whatever makes him feel good, as long as it isn’t a danger to others. Of course, I have to stop him if the thing he wants to do is splash in a puddle in front of oncoming traffic or throw a puppy at his brother.


Currently, Thurston identifies himself as Barry Hedges. Barry is a lovely guy who tidies up, plays with his little sister and eats his dinner. It is a constant source of amusement for us that Thurston’s idea of role play is to invent a character who is completely average. That’s obviously a fantasy to him! His school has been so pleased with the work ‘Barry’ has been doing and he has been a complete joy at home!


Another thing that really excites Thurston/Barry and makes him feel good is music. He likes to play music on the guitar and is actually a natural with it. We must teach him some technical stuff soon because I really think he might have a talent for it. He creates his own songs, his most recent being “italian men, italian ladies, they have all the feelings”. He also loves to sing along to his favourite music loudly and it’s surprisingly in tune! His current favourites are both Sleater-Kinney songs; Price Tag and Oh!, which he sings on the way home from school every day.


So every year when World Autism Awareness Day rolls around, I am filled with all these feelings. There are the memories of fear and grief from that first year where we had a name for what was wrong with him. Yet with every year, I am filled with more and more pride for what an incredible free spirit he has become. Thurston is so much more than just autistic; he is bright, hilarious, rude, bossy, loud, beautiful, book loving, kind, musical, thoughtful, and above all, a massive pain in the arse! I love him.       

Come find me on Instagram and Twitter @hannahsunited

Tough week

This week has been one of those weeks where everything has been hard or gone badly. I knew it had the potential to go badly because several appointments and important dates in one week rarely ends well.
Firstly, Thurston’s DLA renewal was due so I had the unenviable task of completing the application. The Disability Living Allowance forms are notoriously gruelling. Luckily they only have to be filled in every five years, any more than that and I would have a breakdown. There are 70 questions in total, 2/3rds of which require some kind of essay about your child’s needs. The way I was taught by our case worker to answer these questions was to ‘answer based on Thurston having his worst day’ and to include nothing positive about him. This goes against every mothering instinct I have, I basically spent 4 days writing a book about how rubbish my kid is! It also reminds me of just how many issues Thurston has, some of them I often forget because I am so used to adapting our life around him. When you write it down coldly and factually, it’s much harder to ignore. The form actually couldn’t contain all the information it asked for and I had to supplement with 7 pages of extra information and at least 30 pages of Doctor’s/educational reports. It’s finished now, it’s in the post and I’m done with it! I feel like a cloud has been lifted!

On Monday, we received our secondary school allocation for Louis and he was given his 3rd choice. I’ve honestly never seen him so sad, it was so hard for him. We moved a bit further away from his primary school so that Thurston could be closer to his school which has obviously put Louis at a disadvantage for getting into the school of his choice. I feel so guilty that I’ve helped one of my kids and upset another at the same time. I always assumed they would all go to the same school and go to secondary school with all their friends and the reality is turning out to be much more complicated. At first Louis was desperate for me to appeal and we still have the option to do so. However I am starting to see some real positives in going to the school he was offered and I’m not sure appealing is the best choice. He is a really personable boy and has amazing initiative and ambition and he will do well wherever he goes. The new school is a 5 minute walk away so my mum-nerves would be a lot happier with that walk by himself as opposed to getting the bus!! Why are these decisions so hard?!

Thurston had a couple of appointments this week. The first was a catch up with the bladder and bowel nurse which Alex took him to. I don’t usually miss appointments but it had only been a month since we saw her last and I had booked onto a dance class that I really didn’t want to miss. We spent a couple of days monitoring Thurston’s wees and poos and it actually showed up some surprises and helped the nurse put a better plan together.

The second appointment was at the Orthoptics clinic at the hospital. Since Thurston isn’t great at standard eye tests as he doesn’t understand the questions, he was due to have a test where they put drops in his eyes first. I was already nervous about this as I knew he wasn’t going to react well, especially since it’s only been a couple of weeks since we were at the hospital with him for blood tests! Over the course of this week, I’ve noticed a sore patch on his eyeball. I thought it was bloodshot or scratched but it does look nasty. It seemed like perfect timing with the eye appointment coming up so we went along to see what they made of it. The Junior doctor had no idea what it was and called in the Opthalmologist who was equally baffled and managed to get us in to see a consultant. She couldn’t get him to cooperate much (and he kept putting his feet up on her desk and telling her she had a funny voice!) but she said it is definitely a lump. They will need to do a proper examination to try and find out what the lump is and there was a lot of whispering which never fills you with hope. Apparently it is very rare for a lump on the White of the eye to be so red and inflamed. We are being booked in with a specialist as soon as there’s an opening. Also they’ve had to rebook the eye test as they couldn’t put drops into the lumpy eye!!

I was so relieved to see the end of Friday, we’ve done nothing this weekend and it’s felt amazing. Zeke and I baked baked biscuits, Thurston has organised his Mr Men collection, Louis has been reading his school prospectus and catching up on the Great British Bake Off! Indigo is finally starting to say a couple of words, they are all equally useless: “Duggie”, “wow” and “shoe” are her favourites!

This week looks to be a lot happier and Louis turns 11 on Thursday so hopefully we’ve got through our tough week relatively unscathed!!

Please come find me on Instagram @hannahsunited

I’m linking up with The Ordinary Moments at





I was up with Thurston a lot last night. I can’t remember what times or how many hours but I know that it involved heavy lifting of numerous toys and pretending to understand the system that he was filing his Mr Men books in.

Being nocturnal is one of the aspects of caring for Thurston that never gets easier. When I go to bed in the evening, I never know if I will get to sleep past 12am or whether Thurston will need me to help him with whatever he needs to be doing.
He is still using Melatonin to get to sleep and it does the job. However, he has such a regular sleep routine that I’m not actually sure that it is the Melatonin that helps him to sleep, or if it is the bottle, Emmerdale, bed on the sofa that helps him to nod off. Recently I have wondered that if the Melatonin helps him to sleep, then perhaps that is why he is so wide awake when he wakes? As if perhaps he is only in a light sleep. I remember vividly the days before we had Melatonin prescribed, how he would quite literally fight me to sleep for hours. He would grab, scratch, pinch, slap, kick. It was soul destroying seeing how distressed he would get and I genuinely think he is scared of falling asleep. It’s a real dilemma trying to figure out if coming off the medication is worth a try.

Once he is awake in the night, he will drink his formula in bed with me and then get on with whatever needs doing. Once this week, it was acting out an episode of Emmerdale where a caravan was on fire. Another time it was moving all the toys from his bedroom downstairs and all the toys from downstairs up to his bedroom. Another time he wanted me to list to him all the fonts that could be italicised. That is a hard one to do at 1.30am!!!

The main issue with being nocturnal is that you still have to do everything you need to do during the daytime. Children still have to get to school on time, housework needs to be done, the baby needs feeding. Once in a while, Thurston will fall asleep at school but for the main part, he is puzzlingly capable of staying awake up to 20 hours a day. Given the fact that he is on a limited diet and is anaemic, it just doesn’t make any sense!

Since the new year, I have tried to catch up on sleep as and when possible but it just really doesn’t work for me. I’ve tried going to bed for an hour in the afternoon and before 10pm at night, but it seems to just mess up my body clock even more and I struggle to get to sleep at all. The only way I can get to sleep is to fall into bed in an exhausted heap!

When Thurston’s sleep is going through a really bad patch, we try to only do what is essential. Simple dinners, minimal housework etc. It’s not realistic to keep this up all the time though. We still want to have fun as a family and we want to go out and enjoy our time together. We have dragged ourselves to LegoLand on a couple of hours’ sleep and forced ourselves to go to London for the day with nothing but black coffee for energy. Sometimes I’m so tired that I physically shake, and I’m not sure what I can do to make it better.

Sleep is such a simple thing but a lack of sleep can be all consuming. Having a new baby or being too hot to sleep can be bad enough. Having a child with a sleep disorder who cannot be left by himself is a whole new ballgame. I just need to find some new tactics!

Come and find me on Instagram @hannahsunited

Linking up with The Ordinary Moments

Snatching moments with the older kids

Having a toddler can be all-consuming. You need to watch their every move. Nothing and nowhere is safe. Even though Indigo is our 4th baby and we consider our house to be very child friendly and baby proof, she still keeps us on our toes finding something new to ruin or eat that we hadn’t spotted! If you add the needs of an Autistic child to that, it can be easy for me to devote all my time to the youngest two of the family!



Louis and Zeke are aged 10 (11 in 4 weeks!) and 8 and are generally very independent. They are perfectly capable of occupying themselves and after school, they quite often disappear off to their shared bedroom and catch up on reading, YouTube and Lego! I do get worried that they will end up hibernating in that bedroom away from the rest of us, and I can understand it. Their belongings are safe in there away from the toddler or their brother who likes to think everything in the house is his! So far, I have stuck to my guns and not allowed them a TV in their bedroom or any games consoles. I am very against the idea of giving the boys anything that will make it easier for them to separate themselves off or be any more anti-social than tweenager boys already are!


Despite their grumbles, I do push them into spending time with us as often as possible. We have dinner at the table every day and I put it all out in serving bowls so that everyone helps themselves and it’s friendly and relaxed. They usually fill us in on the school gossip and what movies they are looking forward to seeing.


I’ve really enjoyed snatching a few moments alone with each of the older boys this week. Naturally, boys of this age are not very forthcoming with their feelings, but I feel like I’ve had some really lovely chats with them both.


Louis came down with a bit of a cold on Monday. In all honesty, he probably could have been pushed to make it in to school but he is so pale and scrawny and does such a good “poorly” face that he ended up scoring a sick day. Once the Calpol had kicked in and Indigo had gone for her nap, I ended up having a really great talk to Louis. He finds out what High School he goes to next month and I can really sense his anxiety around it. I vividly remember that nervous excitement of starting somewhere new and feeling so much more mature. He will be getting the bus everyday and making new friends. I don’t let him pick up on how much that freaks me out!! His group of friends is already drifting apart and settling into new groups of kids depending on which school they’ve applied for. He is definitely struggling that his best friend is almost certainly going to a Grammar school instead of a High school. Louis will do great though, I am sure of it. He is so confident, sensible, kind and other kids love him!


Zeke decided to stay at home while Alex took the others to the supermarket yesterday. It was so nice to listen to him without interruption. Lately, he has started to develop a bit of a stammer and mumbles and gets stressed. I’m sure this is because we rush them when they are talking to us because Thurston or Indigo are demanding our attention. This is something I really need to work on. Zeke has such an incredibly creative mind. He is fascinated by animation, stop-motion in particular. He also teaches himself puppetry and has a whole menagerie of Muppets and puppets that he can act with beautifully. He told me all about some new friends he’s made at school recently. He has made friends with a fellow puppet fanatic and together they have started a puppet club at school which they practice at lunchtime and perform to the class on a Friday! Another friend he made was new to the school and Zeke told me he could see he was lonely so he kept him company and now they are great friends. He also befriended a little boy who has a speech disorder and Zeke wanted to help him because he understands how that feels because of having Thurston for a brother. I was so proud to listen to how kind and considerate he is.


These moments weren’t anything amazing, they didn’t cost me any money and we didn’t go anywhere fancy. Yet the boys really appreciated the time I took to chat and listen to them. It seems so strange to me that my older boys are already at these stages in life where we are talking about High School and answering the phone to their friends! I don’t know how to raise anything beyond a toddler. I am just muddling my way through, and sometimes I think Louis can sense that. A lot of the time, Alex and I make decisions for the children that are very against the grain of what their friends do or have and it feels risky, but I hope that they can see we are just trying our best for them!


I’m linking this post up to The Ordinary Moments with


Happy New Year! It seems like December was twice as long as any other month last year and I am so excited to be in the new year full of hope and possibilities. December felt somewhat like an endurance test for me and had incredible highs and some really worrying lows.

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The problem with December for our family is that it is a month of anticipation. For neuro-typical children, this builds excitement but for Autistic children, it can be very frustrating. In our family, the older children are 10 & 8 and are at the maximum Christmas loving stage, meaning it has been all they’ve spoken about since mid-November! Indigo is only 18 months, so while she doesn’t understand Christmas at all, she is overly interested in all the decorations etc and poses a whole new problem. On the other hand, Thurston became very stressed with the constant reminders that he should be excited and “what do you want for Christmas?!” If you imagine having no concept of time, then it must be incredibly daunting. You don’t know why Christmas isn’t right now, or even if it will ever come at all. It’s like the ultimate tease. Of course, school also revolves around the festive season for much of the Winter term which causes everyone to try and jolly him along.

His school were very sweet and gave him the role of Father Christmas in their nativity (named “A Midwife Crisis” all about the midwife shortages, very political!). It was a brilliant move on their part because he wasn’t integral to the play at all and just needed to come onstage at the end to thank everyone for coming and wish them a merry Christmas. So, his participation didn’t affect whether the play ran smoothly or not. I knew that it would never happen, however his 1:1 helper held out a lot of hope for him. On the day, he sat and read a book, joined us in the audience and then lay face-first on the floor!! No one minded one bit, Alex & I were laughing, his helper was so happy that he hadn’t screamed and his headteacher commented how well he had done!

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Just before the school broke up for the holidays I attended a THREE HOUR long meeting with 9 professionals to switch Thurston over from the Statement of Special Educational Needs to the new Educational Healthcare Plan. In theory, this plan sounds like a great idea with a much more holistic approach to the child, however, there is a much greater emphasis on costings which I felt extremely uncomfortable with. Alex was unable to come to this meeting so it was my responsibility to be a good advocate for Thurston. I feel like I got a good outcome eventually and there was only one area that I had to push for, which the school are backing me on anyway. However, the professionals did have their own disagreements within the meeting and I found myself listening to 3 groups of people separately arguing about areas in which my child is failing. I think I felt a part of my heart break listening to the costs involved in his care, and whether it was worth spending the money on an area or skill which they felt he wasn’t going to ever achieve or do well in. I understand why they have to do it this way and to be efficient with their time, they need to be frank and honest and they can’t concern themselves with my feelings but it made for some tough home truths for me.

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Decorating the house this year has been farcical on a National Lampoon level. Firstly, we decorated the Christmas tree only to have Indigo pull the entire thing over in less than a minute. I decided instantly that I wasn’t willing to redecorate the tree every couple of hours and removed it up to Thurston’s room. In all honesty, I wasn’t surprised and although irritating, it was quite funny. I posted the photo to Facebook in a moment of parenting solidarity and was surprised by the number of people who commented that I was cruel for taking it down, should’ve put a fireguard around it, pinned it to the wall, persevered with teaching Indigo “no”, was ruining Christmas for Louis and Zeke by taking it down. (I’ve come off of Facebook now as it was very unhelpful to me in these type of situations!) It really made me wonder. Why does it matter? It’s just a tree. We have an abundance of garlands, fairy lights, paperchains and we even added a mini potted tree that the baby couldn’t get her grubby mitts on it. So why does it matter to all these people, mostly acquaintances, if I have a big plastic tree to put presents underneath. The way I saw it, I was giving myself one less thing to worry about and it felt great. Also, it didn’t compromise on space in our lounge which is at a premium with 4 children at Christmas

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For the fortnight before Christmas day, Thurston was very stressed and easily upset. His violent streak became worse and worse and he would either have screaming outbursts or become very insular, constantly listing things and typing TV channels repeatedly. This is when I find Autism the toughest, when I can’t get through to him. It can feel very isolating. I don’t want anyone to think badly of him, or think he is unkind, so I don’t like to tell people how bad it can get. A few times, I have posted on Instagram about it and deleted the picture because it felt like I was complaining too much, or because I felt jealous that everyone else could just enjoy Christmas with their families. There were 2 instances in December when he became so violent that I had to call my mum for help. At one point he was punching me and I asked him why and he said “because I want to kill you”, which was devastating. I feel so guilty and pathetic for not being able to cope on my own, but both times, it wasn’t safe to leave the other children unattended to help Thurston. The tiniest things can cause huge reactions and my mum mentioned that she needed to ring home because she’d left the oven on which caused Thurston to break down in tears because that is how the Great Fire of London started. Through his tears, he told my mum not to worry because “he was an expert at telling the weather” which caused a tearful Grandma situation. He is just so confused that it’s hard to know what to do to comfort him. Sometimes, unfortunately it is a 2 person job and I need to get a bit better at accepting help.

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When Christmas actually rolled around, Thurston took it all in his stride. I think we’ve finally got the hang of how to make it easier on him. I wrap most of his gifts in tissue paper so it is easy to open, he can open presents at his own pace, no rush. He doesn’t have to eat breakfast with us, he ate a plate of bacon and toast in front of Shaun the Sheep. When we are at my parents’ house he can escape to a quiet room whenever he likes. He chose to eat his dinner alone in the lounge which was not a problem, he watched Toy Story and ate roast turkey, but he insisted his Granddad joined him to help him pull his cracker! No one particularly watches him open his presents anymore which is perfect because the pressure is off, there’s plenty of other children around who will give the giddy over excited reactions that we all love! This year, we also spread out all of the full on family gatherings over the whole week which was so much easier on us all. Christmas Eve with a couple of friends and my sister, Christmas Day with my family, Boxing Day was spent at our house with our lovely friends who have 3 children and our on exactly the same wavelength as us with a relaxed parenting approach, it was my favourite Boxing Day ever! We had Alex’s family to us for an afternoon at the weekend. Having it at our house meant that Thurston was much more relaxed and had his own presents and iPad around him. We spent New Year’s day on a trip to Hastings see my best friend and her lovely family, and Thurston did so well with the change of scenery.

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I have learned a lot about Christmas this year and I feel really happy with our decision to keep it simple. I am throwing the big plastic tree in the tip and I will be going for another small potted tree next year. I’m going to stick with the plan of having people to come to our house instead of trying to pack up and ferry the children around! Luckily for me, my parents’ house is an easy place to visit. They are incredibly accommodating to Thurston’s needs and have fantastically low expectations which means that any small step he might take is met with huge applause and pride from my whole family! I also ignored the older children’s Christmas list which was basically an X Box and TV for their room, and instead they have enjoyed magic sets, board games, books, electrical circuits and racing cars! That has definitely limited the number of arguments in the house. Thurston is enjoying his new Sylvanian Families Country Starter Home and his Peppa Pig House too!

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If you have a child who finds the idea of Christmas stressful or even if you find it stressful yourself, I think it is well worth reflecting on what works for your family and what doesn’t work . There is little point running yourself ragged to make the ‘perfect Christmas’ when all the kids really want are some big shiny boxes on Christmas morning and lots of laughs with their friends and family.

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Being Thurston’s P.A.

So this morning I have spent another chunk of my time on the phone to various hospitals, schools and clinics trying to chase things up for Thurston. Luckily, Indigo was more than happy sitting next to me pretending to be on the phone to Dad and allowed me to get on with my calls. I got a few things checked off the ever growing to-do list but none of it was straightforward. I really don’t know where people come up with these systems but nothing seems to work as smoothly as you would expect for people who are in charge of such important things.


For the last 2 weeks we have been trying to get a repeat prescription for Thurston’s Melatonin (medicine to help with getting to sleep). The GP is not allowed to prescribe it, presumably to restrict the amount of parents looking for a miracle cure to their sleepless nights!! So we have to get our Paediatric Consultant to prescribe it. Thurston’s consultant retired and he has been with 2 Locums since. They have also both left and so we do not know whose care he is currently under. Luckily the secretary found a consultant who could process the request and the prescription was written. Due to the nature of the medication, the prescription then has to be sent to another hospital, counter signed and the prescription is filled at their pharmacy as our local pharmacy does not dispense it! Inexplicably, in this age of technology, none of this is done via email and so the prescription left our consultant’s office on a Thursday and still hadn’t arrived at the pharmacy by Tuesday via their internal NHS mail. I was completely panic stricken as we literally had 2 more doses left. I finally tracked it down this morning and it will be shipped back over to our local hospital for me to collect tomorrow.


Next I had to organise an appointment to meet with a Play Therapist at Zeke’s school who is going to help him dealing with some of the frustrations he struggles with at home with Thurston. Zeke and Thurston are actually very close in age (they are 22 months apart) but due to Thurston’s developmental delays and the fact that Zeke is a late-August baby and so in year 4 already, they are treated quite differently. They have very similar interests which leads to Thurston seriously destroying Zeke’s Minecraft and Lego creations. Thurston for the main part is not being mean to him, but he thinks they are playing together. Obviously, I can completely empathise with Zeke, it must be intensely irritating to have nothing that can be kept safe. I’m completely at a loss for how to improve the situation, I don’t know whether I should get Zeke his own device to play Minecraft on or if that would just cause more problems?! My dad installed a couple of shelves above Zeke’s top bunk to keep his Lego constructions away from Thurston but as a result of Thurston’s recent physio sessions, he can now climb on to Zeke’s bed and reach the precious shelves, so nothing is safe! Poor Zeke. The least I can do is try to help him to find a way to deal with his frustrations. I’ve accepted that is not my are of expertise and hopefully the Play Therapist will be able to help him out. I rang the Family Liaison Officer from the boys’ school to organise this appointment and said I would see her tomorrow at the Team Around The Family (TAF) meeting, however she said that she hadn’t been invited, so I had to go back to Thurston’s school and have her name put back on the list. I just don’t understand why I always have to chase every tiny thing!!


We recently had a very productive appointment at the Evelina Behavioural Feeding Clinic at Guy’s and St Thomas’s Hospital in London. We decided that taking 4 kids to the appointment was pointless and distracting so Alex took the other 3 for a day out in London while Thurston and I tackled the appointment. The clinic consisted of a Consultant, Dietitian, Occupational Therapist, Feeding Psychologist and Speech Therapist. Before these big appointments, I actually spend an evening ‘revising’ all my facts and working out exactly what I want to get out of the appointments. I’ve learned from years of doing this that preparation is key!! The professionals were incredibly kind and helpful and really knew their stuff. I’m always so grateful when we get to go to a London hospital because we get to speak with the real experts. They had some really basic useful tips to share, for example, Hovis Best of Both bread is enriched with calcium so that’s an easy switch that can really add some goodness to Thurston’s diet. They very kindly said that I was “a breath of fresh air and a shining example to other mothers”. I’ve remembered that word for word as it’s the nicest compliment I’ve ever received and made me feel so much happier about Thurston’s feeding issues and my ‘relaxed’ approach to dealing with them. They are arranging sessions for me to see the Feeding Psychologist to work on the next steps to encouraging Thurston to try new foods and increase his appetite. They were concerned about his thin and pale appearance so we did have to squeeze in some blood tests before we left, which reminds me I need to chase the results!!!


While we were in the appointment, Thurston seriously filled his nappy! It was the worst poop smell and I profusely apologised and they insisted it was fine and that I should wait until they were done to go and change him! Something I’m really struggling with emotionally and practically at the moment is Thurston’s toilet training, or lack of it. When I changed him at the Evelina hospital, the room was equipped with a bed for changing. It really made me think about how disabled children really aren’t catered for at all. Rooms like these are called Care Suites and the only other place I have ever seen one is at Thurston’s school. There are literally no shops/restaurants/cinemas etc that have somewhere for disabled children to be changed. I am quite luckily that Thurston is small and mobile and generally I can make do in a toilet. However, as he gets older it will undoubtably become more difficult and also, it is very undignified. Why should he have to lie on a toilet floor on my cardigan? Shouldn’t he and other disabled children have access to somewhere clean and safe to be changed?


Thurston has also been quite constipated lately and along with his anxieties towards going for a poop, he is having quite a tricky time with it all. Alex came downstairs last week to discover that Thurston had emptied his nappy across the lounge and we had to spot clean 6 areas of the carpet. I’ve been trying so hard recently to improve our neglected rental house and keep it clean & tidy, and Thurston is quite literally shitting all over it. This is the poop of a 6 1/2 year old boy, it is quite different to baby poop, and no one likes to talk about it or hear about it. The school nurses had decided recently that because Thurston had done one wee on the toilet (the Teaching Assistant sat him there, he had no awareness and didn’t ask to go) that he didn’t need to be referred to the Bladder & Bowel Team. Luckily, the Paediatrician disagreed and we are now on the waiting list. It’s such a taboo topic and I hate thinking about it. It breaks my heart to send my child to school in nappies and I really struggle with it.


Apart from all these troubles, Thurston has seriously been making us laugh lately. His humour is very inappropriate and he says the things that the other kids are not allowed to say and they absolutely love him for it!! He went through a phase of yelling the catchphrase “sh*t on it, sh*t on the sh*tting thing”. He went to school yesterday with his eyes shut and told the teachers he was asleep and that they weren’t real “you are all in my nightmare”. He made a little picnic on the floor for his baby sister with some gingerbread men and a head of broccoli. He keeps pointing out my boobs and referring to them as “the twins”. He is such a mischievous kid and he sure knows how adorable he is!