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!

Come and find me on Instagram @hannahsunited

Linking up with http://www.mummydaddyandmemakesthree.co.uk The Ordinary Moments

Dressing 4 kids on a budget!

Lately I have been having a lot of fun dressing the kids. It’s not always been the case and they’ve all been through some very fussy stages when it comes to clothing. Zeke in particular has very strict rules about what passes as acceptable, and Thurston is very specific about trousers and length of sleeves! Since having Indigo, I’ve enjoyed shopping for the children even more. Not simply because she is a girl, but because I just have full range of all the kids clothes now and I don’t have to restrict myself to half the shops!! In actual fact, Indigo doesn’t actually seem to suit ultra girly styles and I’ve found that big frilly dresses can be very impractical for toddlers. Firstly the big skirts get in the way of climbing and crawling. Secondly, the big bows on the back of the dresses must be very uncomfortable when you’re taking a nap! 2015/02/img_3837.png We certainly are not well-off and we generally stick to H&M, Next and Gap for the basics. All the children have a good few basics – a couple pairs of trousers/jeans, plain long sleeve tops or bodysuits for the little one and a couple hoodies/cardigans. They don’t have a lot of clothing and I think that quality over quantity is very important. With good basics, it’s easy to add some really fun bits and pieces and they always look great. 2015/02/img_3855.jpg Little Bird at Mothercare has always been a firm favourite and they now go up to 8 years old meaning I can squeeze 3 of my kids into it! Thurston has a lovely checked shirt from this range with really sweet popper button details. 2015/02/img_3843.png A few special t shirts for the boys make it easy for them to pick out a great simple outfit. Zeke loves this t shirt by hello apparel from Southwood Stores. He’s worn it over and over and it washed brilliantly and is super soft. 2015/02/img_3841.png I like to add some vintage items into their wardrobes and Louis and Zeke love anything with a retro style. My favourite Etsy shop for vintage items is The Apple Bobber. Thurston is so cosy in this sweet jumper.

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I’m so sad that Indigo has now outgrown this knitted owl dress. I’m going to have to display it in her bedroom as I can’t bear to part with it.

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Every so often I do like to indulge in something a little more expensive. I try to choose something casual so that it will get lots of wear as opposed to a sparkly dress which might only get worn once or twice. This Mini Rodini babygro from Cissy Wears has been worn by Indi so many times already and I’m still rolling the sleeves up so she can get much more wear out of it yet! The weightlifter print is so cool and she has worn it with skirts, pinafores, jeans and dungarees. 2015/02/img_3842.png Another favourite from Cissy Wears is this Bobo Choses pink vest. Such a pretty spring colour and indigo wore it so much last summer. 2015/02/img_3845.png Thurston has this super comfy Bobo Choses sweatshirt from Milly Mog which keeps him so warm and has a lovely bird print. This is completely unisex and will be passed down to Indigo to get more use out of it. 2015/02/img_3839.png Recently I’ve started to try and make my own kids clothes. It doesn’t always work out brilliantly but I was pretty pleased with this combination of my homemade ballet cardigan with these Thief & Bandit leggings from Cissy Wears. 2015/02/img_3850.png My favourite recent purchase has to be this sweet denim vest by Finch & Agnes from Archie’s Boutique. It’s the softest, most flexible denim and lovely quality. Because it is a wraparound style, it will last a long time, and will mix with lots of different outfits: dresses, skirts, leggings or even over a romper suit! 2015/02/img_3834.pngHere are my tips:

1: make sure you know what your kids will wear. Past the age of 2, they all have a fixed idea of what they like and even if you love an item, spending your cash on something just for your kids to sneer at it is pointless and irritating!

2: have good basics! I buy nice dark slim fitting jeans for the older kids. This way, whatever t shirt or checked shirt they throw on the top will look great, easy peasy.

3: hoard the sales. Keep your eye out in the sales for things you like and buy them in the next size up. I love getting out a box of stuff and finding all the bargains I bought last season.

4: buy mostly unisex for older children so that things can be passed on to the younger ones.

5: items that have been a little more expensive usually hold their value. I sell as much as possible from the outgrown clothing to fund the next size up!

6: research! I love to screen-grab pics of items I like. I put them all together into a collage and ask the kids their opinions and pore over them for a few days/weeks. I think about what items we already own that would mix well with them. I think about where they would be worn. I end up deleting things and whittling down until I’m left with a few bits that I know I adore!

7: Support independent brands and shops. The smaller shops will source amazing quality and design products that you just won’t find on the high street. My parents own a vintage furniture shop and so I’ve always loved the unique and unusual finds that you get from shopping small and supporting the independent retailers! Sign up to all the newsletters and follow them on Instagram and you’ll soon be inspired!

Here is my current “mood board” of stuff I’m lusting over! I’m not sure which pieces I will end up getting so I will just have to window shop a little longer! Top left: Milly Mog Top right: Archie’s Boutique Bottom left & right: Cissy Wears 2015/02/img_3863.jpg

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/

Festivities

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.

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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.

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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!!

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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!!!

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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?

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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.

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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!

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Off The Scale

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

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

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

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

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

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

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

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

 

 

 

Bright Nights

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

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

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

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

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

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

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

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

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Eat Me!

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

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

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

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