Reconnecting 

I keep meaning to keep a kind of ‘Thurston Journal’ because he makes me laugh, weep and amazes me on a daily basis and then when I come to write a blog post I can’t remember any of the things that happened. I would love to update the blog more frequently but honestly, Thurston has my computer a lot of the time. In fact I’m writing this in the WordPress app on my iPhone. Thurston is currently using my crummy laptop to update his spreadsheet of Ninja Warrior UK contestants: names, ages, occupation, fastest times, position in the competition etc!!

   
 At the end of last year, I was really starting to panic that Thurston was slipping away from me and heading into a regression. Over the last 6 months or so, we have lost a huge amount of eye contact. We have to really work to get eye contact from him now and even then it is fleeting and often exaggerated with huge wide eyes and pronounced blinking which is emphasised with his oversized anime-style eyelashes. As well as that, he seems to have acquired some new tics. Some are sounds, such as sucking his cheeks into his mouth and others are gestures like his ‘skywriting’ where he uses his hand to write in the air. He was very self-motivated and only satisfied when doing exactly as he had planned. 

  
A couple of weeks ago, school also raised some concerns. His 1:1 has known him since he was 4 and so knows him very well. She observed that he was having periods of ‘absence’ where he was in a trance and unresponsive to everyone around him, a few times a day. After a quick trip to the GP and a referral, I took him to be seen by a paediatrician really quickly. He explained that Thurston is having a form of seizures. Either they are a type of seizure associated with Autism called focus seizures, where Thurston’s brain becomes overwhelmed and effectively removes him from the situation. The other option is that they could be a type of epileptic seizure called Petit Mal which is also common in autistic children, but can be treated. So, he’s referred Thurston for an EEG test to try and discover which of the two it is.

  
Before I realised there could be an explanation for the sudden change in Thurston’s demeanour, I decided to be a bit more proactive and change things up a bit to distract him and also to help him to enjoy our time together a bit more. I know that sometimes he can find it harder to cope with home life than school life. It’s unstructured, people are always trying to touch his stuff, he doesn’t have an adult’s undivided attention etc etc. 

  
So now we try to incorporate something that Thurston enjoys into our activities. Over the festive period we discovered 2 new things that Thurston is interested in. Stick Man & Ninja Warrior UK (see above!). As a New Year’s resolution we had already decided to be a bit more active as a family and take more walks (and stay away from shops with the kids as much as possible!). We are really lucky to live right on the coast and so we have our pick of dozens of beaches as well as countryside and nature walks. It’s been surprisingly easy to get Thurston excited about these outings by marrying them with his interests. When we are walking through the countryside we are always looking for our own ‘Stick Man family’ and find the ‘family tree’ to return them to. Also, you can add Ninja Warrior events to any walk or playground with ease! I think it’s has definitely the time we all spend together and we’ve all managed to share a lot of laughs with Thurston on our  outings which Thurston has named “The Miles Adventures”! 

  
We’ve got a few weeks to wait before his EEG and finding out what’s going on with him. However I’m really pleased that I’ve managed to make a small difference to his wellbeing at home and helped his siblings to have fun with him! Even though I haven’t started the ‘Thurston Journal’ yet, I must share his latest excuse for why he couldn’t possibly go to school one day this week: 

“My shoes are too fitness and my thumb-up is hurting!”

  

The Good Life

The Christmas decorations came down on New Year’s Eve and our house is feeling lovely & fresh again, as long as you ignore the huge pile of cardboard and wrapping paper cluttering up the kitchen until the recycling is collected! For the first time I can remember, there isn’t a tonne of toys waiting patiently for new homes. In fact, all of the Christmas presents seem to have been quickly absorbed into the house without any extra clutter. So I’m starting to wonder if I am finally becoming organised at last?!!  

  I spent a good chunk of time and a small amount of money towards the end of 2015 painting the rooms of our rented house white and seriously decluttering. I am by no means a hoarder and do not get sentimentally attached to objects at all, but life had got in the way and our house had amassed an unnecessary amount of stuff. I found some really great tips online for how to go about decluttering sensibly so that I wouldn’t regret giving things away. One of the main problems I was trying to tackle was not just mess but the way that Thurston approaches play. He is definitely a collector and has a huge amount of Moshi Monsters and Disney Cars, they are firm favourites and will be for a long time I think. However, that meant that for all birthdays & Christmases, we had ended up buying anything that had Moshi Monsters or Disney Cars emblazoned on, Moshi HQ, Moshi Supermarket, Cars Wrestling Ring etc etc. When Thurston would go to his room to play, more often than not he would end up throwing every toy around the room, and tipping out all the toyboxes in frustration.

 
It seems obvious now that he was simply overwhelmed by the choice and number of toys. He didn’t need them and was satisfied with organising his collections. Of course I’m too much of a wimp to permanently get rid of Thurston’s toys as I can never quite predict his reaction, they are safely boxed up in the shed should he want them. His playing is so much calmer now in his bedroom, much less stressful and destructive. He can find his favourite things quickly, and if he does tip everything out it takes a few minutes for me to tidy the entire room away again.  

Once I’d seen the effect this had on Thurston, I realised it would be great for the rest of the house to feel as calm, so I did the same to all the rooms in the house and it really has worked. Thurston’s toys are the only things I actually saved in the shed, everything else that was unnecessary has gone and not one thing has been missed. I’ve actually left baskets empty and corners bare and it feels so much better. We have stopped using our bedroom as a dumping ground and actually make a point of keeping it fresh and minimal, although my husband did scoff at me when I told him he’d have to switch deodorant brands because his didn’t blend in enough! Now that it’s tidy and easy to maintain, we actually all use that room rather than collapsing there in a heap at 11pm every night!  

I did start to get antsy as we approached Christmas that all my hard work decluttering would be undone by truckloads of big presents, but I’ve been pleasantly surprised. The older boys are really taking pride in their bedroom since I got them a proper desk and shelving, so they were thrilled with bits for their room like fairy lights and Lego storage. Indigo got an extension for her wooden toy kitchen and a replacement toy pram for the one that the boys bent out of shape using it as a skateboard! Thurston was desperate for a keyboard to practice his new pianist skills with. Alex & I were treated to a couple of gorgeous bits for the house which was lovely, and all of us got plenty of books & music which are always lovely presents. So all in all, my plan has worked. There is a place for everything in the house now and after Christmas, everything tidied away with ease. 

  
We are still getting a weep-inducingly tiny amount of sleep as Thurston hasn’t improved at all at night. When I am utterly exhausted, the last thing I want to do is worry about a messy house so although initially, it took a big effort to sort the house out, it is now so easy to maintain. I can have a quick tidy round in half an hour if needed, that is a gift in itself. 

   

In 2016, I want to extend this simplicity to other areas of our family life. I want to try and narrow down the amount of grocery shopping I do, and make sure that I only buy what we need and use everything up before I buy anymore. I would love to get better at using leftovers, growing my own herbs and baking my own treats. One thing I am desperate to do this year is save some money. Our situation is very complicated and finding a way to earn money whilst being a carer is really hard. Alex is eager to change jobs and is actively looking for something new with a better salary, and perhaps an ounce of job satisfaction – not too much to ask?! In the meantime, one thing I am keen to do is make the most of the little money we do have and make it stretch as far as possible so that we can put some money aside for when something/somewhere takes our fancy! 

  
I hope that these are realistic expectations for the year and I know I’m going to give it my best shot. We’ve been stuck in a bit of a rut due to our circumstances for a few years now, and with the lack of sleep & stress etc, it has felt like we have been paddling upstream for the most part. I really want this to be the year when we can push through it all and start making some changes for ourselves! Without wanting to sound too cliché, I just want to live a bit more simply this year; get outside, run around, eat well, enjoy each others’ company and save the cash! Happy New Year!   

 

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!

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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 http://www.onthechangingmat.co.uk 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.

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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.

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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.

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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.

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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!

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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.

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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!

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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?!

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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.

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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!!

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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!

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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 http://www.mummydaddyandmemakesthree.co.uk

 

 

 

Nocturnal

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.

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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.

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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!!!

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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!

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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!

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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.

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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!

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Linking up with http://www.mummydaddyandmemakesthree.co.uk 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!

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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!

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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.

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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.

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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!

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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.

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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!

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I’m linking this post up to The Ordinary Moments with http://www.mummydaddyandmemakesthree.co.uk/