However, the logistics of Thurston starting school were complicated to say the least. My two older children already attend two separate schools due to their ages. Louis is already at junior school and Zeke is in his last year of infant school. I looked into sending Thurston to Zeke’s school but they were very uncooperative when it came to his special needs, and made me feel like it would be a hassle for them to have him. Considering the school where he attended nursery were practically biting my hand off to take him, it seemed like a no-brainer where he should go. I’m not willing to compromise on the way he needs to be looked after and I decided to send him to the school where he was wanted. This meant that I now had the challenge of getting 3 children to 3 schools by 8:50am every day. Thurston’s school is a 35 minute walk away or a 6-7 minute drive plus finding a parking space. I do not drive as yet, however even if I did, it is actually not even possible to do all 3 kids in the car. I recently found this out when Alex had a stomach bug and my mum (my lovely contingency plan) had food poisoning on the same day. My lovely dad stepped in to help but didn’t know where each child’s classroom was so he drove me around to pick them up. Zeke finishes at 3pm, so we got him, hopped in the car and went to get Thurston who finishes at 3:10pm. I was 4 minutes late which was enough to send him into a whack-attack and by the time I arrived he was laying on the floor blubbing away, and his teachers looked fairly bedraggled too! I strapped him into the car seat and got back into the car to drive back and get Louis who finished at 3:15pm so he was the last child in the entire school waiting for a parent. I didn’t feel quite as bad about that as Louis loves a drama and a spot of guilt-tripping, so he was quite thrilled with the turn of events!!

All of this proved to me what I already knew, that the school run for our family is literally impossible for one person, it is a 2 man job. I don’t like to rely on family help as they are my kids and I want to do things myself as much as possible. I call my family when I’m stuck and need a hand, but I didn’t want them to be in charge of school runs and childcare on a daily basis. Alex therefore has had to take a cut in his hours and now works 9:30-2:30 so that he can take and collect Thurston every day. Obviously, this means even less money, which is tricky, but for us, it really is the only option. I have had people in the past make snide comments about me receiving Carer’s Allowance and Thurston receiving DLA, but I think people often don’t realise the financial sacrifices that need to be made to ensure a kid with special needs gets the care that they need. I would have loved nothing more than to take my kids to school together and say goodbye at the school gates like the other mums, but Thurston’s needs had to take priority, which means that we have lost a significant amount of earnings, as well as me losing out on important parts of Thurston’s life.

It is lovely for Alex to take Thurston to school and pick him up every day, but I do feel a bit detached from him now. I was so used to doing absolutely everything for him and now, I don’t even do the basics anymore. He even has his Speech Therapist go to school, so his one-to-one is doing his therapy with him. I know I sound like a crazy, over-protective mum, but I’m honestly a little bit jealous of his one-to-one!! He does things for her, he has never done for me. She said he can spell his name in magnets, she even got him to make a pizza! He has recently started talking in little sentences every so often, and people are telling me how well he must be doing at school to have come on so quickly. What about the 4 years I was taking him to 3 therapy appointments every week and taking him to Makaton courses???! Don’t I deserve even a tiny scrap of credit?! The final straw came the other day when I said to him “do you love mummy?” (usually greeted with a firm “oh yes”) only to be slapped in the face with “no, I love Mrs W!”. That one hurt.

I have become secretly pleased and ever so slightly smug when Thurston has little acts of defiance at school. Most mums would be happy to hear that their child has learnt 3 phonics sounds especially a child with special needs. However, I have become so warped with the situation that I am much happier when I hear that he has thrown a big tub of magnets over the carpet or has done a massive fart while they have story time. They are small but significant victories for me!

Of course, in my right mind, I am absolutely thrilled that Thurston has settled in so well to his new school, and the transition was a hell of a lot smoother than I had anticipated. The school could not be more helpful or understanding of  Thurston and his needs, and are actually managing to give him an education at the same time as covering his care and social needs, which is remarkable. It is the best school we could have chosen for him and I know he will do well there, and that it was worth all the financial and emotional sacrifices. It would just be nice if every once in a while he had a little cry that he missed me, just for my mum-ego!!

The whole time Alex was laid up with his back, he had been planning to have a tattoo done of the Eiffel Tower. It means such a lot to us as we spent our honeymoon in Paris almost 7 years ago, and it was one of the only holidays we had as a couple without children. The other one was a completely bizarre trip to Cologne in Germany with a very strange family!! Paris was incredible and has such lovely memories for us, I’m hoping to take the children there next year when I (reluctantly) turn 30! A couple of weeks ago, Alex finally had his tattoo done. He booked in with our good friend Dan Frye in his amazing tattoo studio in Margate (www.signsoftime.co.uk), and he did a fantastic job! I took the kids for lunch with some more lovely friends and my sister while he had it done, and he looked so happy when he came and joined us. It might sound silly to be so excited over a tattoo, but when you’ve been forced to be in pain and have some fairly gruesome scars to show for it, I think it’s a really great feeling when you can finally choose what you actually want on your body!

Since it is now the Summer holidays, we have been fairly busy, since every mum knows that the key to surviving the school holidays is “DO NOT STAY IN THE HOUSE!”. I took the children to the brand new Tracey Emin exhibition at the Turner Contemporary in Margate which we completely loved. I am a massive Tracey Emin fan anyway being a Margate-girl myself and it is so exciting that she has put together this exhibition just for our little town. Thurston actually slept the entire time which was a bit disappointing as he has enjoyed all our previous trips to the gallery. I know a lot of people get very nervous about taking Autistic children to art galleries or museums, but I would strongly encourage people to give it a try, as you might be pleasantly surprised. Thurston likes any exhibits with video installations, and was really interested in Turner’s paintings of volcanoes and even commented that they looked “hot”! A lot of galleries and museums are free entry or simply ask for a donation, so you are not losing anything by giving it a go.

Since we do live by the seaside, a lot of our Summer holidays is based on the beach. From June until September, my house is covered with a layer of sand that I never seem to be able to get rid of completely! At the moment, I would have to admit that going to the beach is not something I am very confident with doing by myself just yet. Thurston is completely inspired by the beach which is wonderful, but also means that he will see that he has complete freedom and no boundaries, and make a run for it, whether it is to the next beach on the coastline or through the water to France. He takes up so much of my energy and attention at the beach that it makes it really difficult for me to focus on my other 2 children. In the school holidays, I do struggle with a little bit of guilt at not being able to divide my time fairly among them and I think they must find it very frustrating too. Luckily for me, last week a friend of mine was renting a beach hut near my house with her family and invited me to join them for a day. I took the kids down by myself as Alex was working, and I’m so glad I did as the kids had the best time. We dumped our stuff at the hut and the kids made a beeline straight for the unusually warm water. Thurston was in his element splashing in the water and was so brave walking into water as deep as his chest. Louis and Zeke played with my friends’ children and their Dad who was so incredibly helpful pulling them around in an inflatable boat singing the theme song from “Jake and the Neverland Pirates”. Thurston even sat in the boat for a while, and was so delighted, I wish I could have captured the look on his little face. The children were so well looked after that I felt more than happy leaving them to play while I went back to the hut to warm Thurston up. It was a perfect Summery day!

Even though it is the holidays, Thurston’s therapy is still ongoing. He graduated his little ‘school starters’ group which was brilliant, and really helpful for him. He is now on a 6 week block of speech therapy to try and start him on some new techniques that he will continue with when he starts school in September. He was a little bit frustrated at the first appointment last week as Louis and Zeke had to come with us and were allowed to play in the playground of the Child Development Centre while he was hard at work. He did really well though and worked very hard. His ability to focus on a task has improved so much over the last year and he sat for 20 minutes without sitting on my lap. It’s still quite hard to see him struggle with concepts that come so naturally to most children. Every single aspect of language needs to be taught to him manually and at the moment, it does seem like an enormous task. The new technique involves colour coding the type of word to try to eventually enable him to have a proper conversation. It uses visual aids which are colour coded eg. pink for a person, green for a describing word, blue for a thing etc. It seems quite complicated at the moment, but hopefully he will get the hang of it and we will soon be able to have a chat! Once his session had finished, I sent him to the playground with his Dad and brothers while i sorted out some paperwork. I helped the assistant to compile a “manual” about Thurston to tell anyone who comes into contact with him at school all about his likes and dislikes and how to talk to him. It made me realise how much of an advocate I am for Thurston, and how much more involved in his school life I will need to be to find out how he is doing. One of the best parts of kids starting school is when they tell you what they have been up to (once they have stopped telling you they can’t remember or that it was boring and they did nothing all day!). It does make me incredibly sad to think that I won’t have that with Thurston and I will have to rely on what the teachers and assistants tell me instead. This is particularly worrying now that he has learned to tell me to “shutup”. Whenever he doesn’t want to talk to me (or wants to make everyone laugh) he yells “shutup, shutup mummy shutup”. I can just picture it now when we are leaving school “did you have a nice day Thurston?” “shutup mummy!”.

Another delightful habit the boys have taught him is to make a fart noise whenever they ask him what noise his bottom makes. Aren’t boys great? They have clearly cottoned on to the fact that you can make Thurston say whatever you want and he is now their own personal parrot, ready to amuse them whenever they are bored. Mind you, I suppose it is some way to compensating them for all the times he has whacked them on the head or smashed their toys. This last fortnight, Thurston has also taken to carrying a large head of raw broccoli wherever he goes. Thurston has never been attached to a particular toy or cuddly animal but “Broccoli” is now a firm best friend and they cannot be parted. At first he was satisfied with toy vegetables until he came to the supermarket with us and realised that actual vegetables were much more realistic! After screaming for 2 aisles after the fruit & veg section for “Broccoli”, I made Alex turn back to go and get some in the hope that this was the start of a healthy eating initiative. He held “Broccoli” all the way round the supermarket and was catatonic when I broke the news that the cashier would need to scan it. Since then, “Broccoli” has been everywhere with us. He eats breakfast with “Broccoli”, watches TV with “Broccoli”, takes “Broccoli” in the garden, cuddles “Broccoli”, packs “Broccoli” in a little lunchbox to keep him safe. After about a week, “Broccoli” began to turn yellow and fall apart and generally looked pretty grim. I tried to entice Thurston with a possible new friend “Onion” but he was having none of it. A fresh “Broccoli” was bought and secretly swapped overnight and now “Broccoli” has had a lovely makeover and looks beautiful. I wonder how long I will keep having to buy replacement broccolis for………

Thanks for reading!

Hanj x

The appointments generally went well this week and everything seemed very positive. I was really reassured by the visit from the continence nurse. She decided that due to his age and diagnosis, Thurston’s lack of awareness in the potty training area was within the normal ranges. As with many milestones with Thurston, he is expected to get the hang of potty training at his own pace, even if it is later than neurotypical children. I’m so pleased i don’t have to push the issue as I really struggle with potty training at the best of times and I had absolutely no clue of how to approach it with an Autistic child. For now, we are going to carry on with pull-ups but encourage him to use the potty or toilet if he asks. The nurse also helped me to claim for free pull-ups for Thurston which is a service available to any child who is over the age of 4 and still using nappy products due to disabilities. It’s not really a topic that people like to discuss and it did involve a lengthy chat about Thurston’s poo-type where I had to choose from a brochure of pictures of other peoples’ poo! I hope one day Thurston will appreciate all the bizarre things I end up doing for him! Even though it’s embarrassing, I’d encourage anyone whose disabled child is delayed with toilet training to get in touch with a continence nurse. I feel as though a weight has been lifted just by talking to someone ‘in the know’ about it.

Thurston and I have been going to a ‘School Starter’s’ Physio and Occupational therapy group for 4 weeks now at the Child Development Centre. I’m so pleased with the progress he is making there and it’s really giving me confidence that he will be OK at school in September. His gross motor skills are coming along nicely and he is actually jumping on the trampoline really well with both feet in the air at the same time which is a triumph! To start with I dreaded going to this group to be honest. I’m not really a baby-group type person, and struggle with the enforced singing and nursery rhymes. However, I’ve started to really enjoy it now and it’s so lovely to see how proud the children are of themselves when they achieve something they couldn’t do the previous week. The parents there are the complete opposite of ‘competitive’ parents and it’s lovely and refreshing for everyone to be happy for another child’s achievements instead of comparing them. There’s no point in comparing them because they all have different disabilities and different strengths and weaknesses, and all the mums realise this and are happy for the other children regardless of their own child’s abilities. I think this is a really important lesson in motherhood, because even in children without disabilities, they all do things in their own time, and being competitive about raising children really can make motherhood miserable. I think everyone should come and visit our little group one day to see how it’s possible to be happy and proud of other peoples’ kids!!

The Team Around the Child meeting at the school was much easier than I expected and my voice held up for the whole time which was lucky! I’d written down some questions on my iPhone before we went in so that I didn’t get too flustered in front of all the people. There was our Key Worker (who has now OFFICIALLY closed our case so no need for her to be at the next one!), the Specialist Teacher, Welfare Officer, Inclusion Leader, Nursery Teacher, Head of Key Stage 1 and Thurston’s new one to one Teaching Assistant for September. It was lovely that Alex could make it too, as he was laid up from his 2nd spinal surgery last time and  I had to go it alone! All our questions were answered about his starting school in September and I don’t have any major worries about it at the moment. The only thing I might struggle with is encouraging him to eat fruit over the Summer so that he will be able to eat some at school snack times! His Organix gingerbread men might tempt the other children away from the grapes and carrots! I do worry that people think I don’t want Thurston to eat healthily when it’s completely the opposite. I spend most of my time worrying over his nutrition, and even took an Open University course last year to try and learn more so I could help him. I make sure he has his specially fortified formula and prescribed vitamins every day, but he really struggles with foods that aren’t dry and boring. I know this is true of lots of little ones with Autism and it is a worry. I try to make his chicken goujons and beefburgers homemade whenever possible, but I am really struggling with encouraging him to be more adventurous with his food. Since he has had medical issues with his swallowing as well, I do wonder if he will ever move on to different textures of food, and I’m not really sure where to look for advice.

Thurston had a great time at his Speech Therapy appointment and steamed through all of his tasks without a hitch. It did occur to me that since he’s been having Speech Therapy from the age of 1, that he has simply learned ‘how to do speech therapy’! I’m no expert, but I wonder if because he’s been doing the same tasks over and over for years in the same room, if perhaps he has actually just memorized the routine of the speech therapy sessions!! Most of his talking and phrases come from copying others, and is very echolalic, so maybe he has mastered speech therapy in the same way?! How sneaky!

After the busy and poorly week, I could have done with a weekend in bed, but instead I soldiered on to London for the day on Saturday to celebrate my best friend’s Hen Day. I took every tablet I could get my hands on, and it was definitely worth it! It was quite a relief to be away from the children for a day actually, and somehow even though we went all over London to Kentish Town, Bloomsbury and the South Bank, went bowling and to a circus, I feel like I got more rest that day than I had all week. We had a fantastic day and it all went without a hitch which I was pleased with as Maid of Honour! It was quite nice to just be me for a day instead of a mum, and chat about all kinds of nonsense with some lovely girls. The Cantina vintage circus on the South Bank was really magical and right up my street. I’m so glad I forced myself to go, and even though my tonsils didn’t thank me for it, my mind certainly did and I felt really invigorated afterwards!

The rest of this week has mostly been spent taking care of Thurston as he has been what I can only describe as ‘iffy and suspicious’! He hasn’t got a temperature or been sick or anything but he just looks ‘off-colour’. His eyes are sore and he has a mouthful of ulcers which are really upsetting him. It has also been 5 days now since he last did a poo so that can’t be nice! He has been really distressed and keeps sobbing whilst muttering “what’s goin on?”, it’s terribly sad.

Tomorrow he is going to spend the day with his Dad who is something of an expert at baby massage and so I am sure he can get the poop out of him!! I am going to take my Driving Theory Test which I have zero confidence that I will pass, but it’s worth a shot! Wish me luck!!

Thanks for reading,

Hanj x

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I had just about got to the point where my house is how I want it to be. It’s not astonishingly neat & tidy, but everything had its’ place and it was easy to clean up and put things away throughout the day. However, Thurston is now so chaotic and unpredictable that within the 1st hour of the day, he has usually hidden marmite toast down the back of the sofa, done some colouring on the fridge, poured formula in his cars toy box, stolen all the fruit from the bowl and scattered it throughout the lounge, and put the iPod touch in the recycling bin. It’s impossible to keep on top of it all and keep the place looking nice.

When I had 2 children, I was so particular about everything. We lived in a little 2 bedroom flat above a shop, and everything was immaculate. The children would play and make their mess, then when the eldest went to nursery and the youngest napped, I would clear everything away and it would look good as new again. I would do activities with them and talk to them all the time, bake with them, take them to the park. It was all very Mary Poppins! It should be possible with 3 children, and of course it is possible, but it seems to take so much more time and energy because of Thurston. I’ve had to completely rethink my standards. Their outfits do not co ordinate anymore. I only attempt to cook with them if there is another adult in the house to be on ‘oven-watch’. I tidy up constantly throughout the day, but I definitely don’t clean it all every day. I have enough trouble keeping on top of the surface dirt of mud, spilt drinks and felt tip, let alone getting out the floor cleaner and furniture polish. I do still hoover everyday but that is only because by the time Thurston has eaten lunch, the floor looks like someone has stamped an entire meal into it and crumbled what ever was left over the top (that’s because that’s exactly what he has done!). I do a big proper clean about once a week so it is clean still, but it’s just not how I’d like it. I’ve had to learn to let go a little bit. If it’s a choice between cleaning behind the sofa or going for a walk along the beach, then I will get out of the house, no question.

It’s not just the house that’s taken a battering lately, but I’ve also learned to accept being permanently embarrassed. We took the kids on a day trip to London at the weekend. We’ve taken them to London before but for various reasons, it was the 1st time we had taken all 3 at the same time. For some reason, it just didn’t work. The older boys were stroppy and whiney, and Thurston was just a complete and utter terror from start to finish. He hated the train, he hated being in the buggy. Despite being knackered, I thought it was fair enough that he didn’t want to be in the buggy and got him out for a walk once we got past Westminster Abbey. This did nothing to help his mood, he got very cross that I tried to hold hands with him, and then became really stressed by the crowds and decided the only option was to take a lie-down in the middle of the pavement which wasn’t exactly ideal. I hoisted him up and he walked a few more metres before lying down again, this time right in front of a horse and guard shouting “Mind out for Thurston!”. I agree, it sounds pretty funny now. I picked him up and he started to shout again, this time he shouted “mummy hurting me” which is a classic he likes to throw out there when there are strangers watching, thanks Thurst!

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Obviously as on any family day out, it poured down with rain. I had brought raincoats for everyone except me naturally and so I was hot, embarrassed and now drenched. We finally made it to St James’ Park and let Thurston roam free which was just what he needed. Due to the rain, there were some incredibly large puddles in the park which were irresistable to Thurston. Once he had stepped in that 1st muddy puddle, there was no going back. He wasn’t dressed appropriately, he was wearing his lovely Clarks shoes instead of wellies, and jeans not waterproofs, but for the 1st time that day he looked genuinely happy. Alex and I let him be, and enjoyed watching him splosh around getting soaked. Some tourists were actually shocked and horrified that we were letting him get so wet but I can honestly say I didn’t care. There was a time when I would’ve cared and probably would have stopped him as soon as his foot hit the water, but I’ve realised that even if you have spent £65 on a train fayre to look at the sights of London, if they end up being happiest when splashing in a colossal puddle, then that is still money well spent. After all, the point of having a family day out is for kids to enjoy themselves. We were probably unprepared for the fact that the final puddle was the puddle to end all puddles and actually Thurston was now up to his knees in grubby park water. We couldn’t even get him out because the puddle was so deep that our shoes would’ve been destroyed. He stayed in that puddle for as long as he wanted to, and I know that he thoroughly enjoyed himself.

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Once we had walked over to Buckingham Palace, Thurston did actually start to get quite distressed that he was so wet and cold. In the past, if it had been one of my other children, I would have looked for a loo or a cafe to sort him out in private. He was screaming and miserable and I have stopped caring what strangers think of me! He stripped off right outside the palace and I can honestly say i wasn’t that fussed. By that point, I just wanted him to be warm and dry and comfortable. By some foresight, I actually had brought some pyjamas with me so I managed to sort him out no problem.

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As for the rest of the week, he has thrown admission forms into someone’s garden and left me foraging in their bushes to find them. He has tried to cut off a Physiotherapist’s finger. He referred to a therapist (persistently) as Nanny. He slapped his new teacher and new teaching assistant round the face for trying to convince him to sit on a carpet. He’s pulled my top down in front of my friends, and he threw my iPhone (which I just had replaced for the 2nd time because of him) into the road. I do sometimes think about the situations he makes me end up in, and I often think to myself “i would only do this for you Thurston”, and it’s really true. I may not be a Mary Poppins-type anymore, but having a child like Thurston has taught me some really valuable life-lessons:

1: Dusting the top of the TV can wait until tomorrow. Build a Mega-Bloks tower instead.

2: It really doesn’t matter if strangers are staring at you. You will never see them again.

3: The kids’ outifts do not need to co ordinate, they just need to withstand stains, falling over and going on the slide.

4: I do still need to pack spare clothes for my child, even though he is 4!

5: Never make firm plans, go with the flow and everyone will be more relaxed.

6: Get out of the house as much as possible. Even if it’s a disaster, you will end up laughing about it. You will never regret going out, but I *often* regret staying in.

7: If your child prefers splashing in muddy puddles/looking at the trees in the breeze/playing a kissing game to going to expensive attractions, don’t be disappointed, be pleased that they are so easily pleased and embrace it. The simple things in life are often the most rewarding!

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Thanks for reading.

Hanj x

It has been a particularly busy week and we have been doing lots of things that are different to usual so I am sure that he is just overtired and cranky but he really has been pushing all of my buttons today. Combined with the fact that I have now barely slept for a week and there is no food in the house (I had mozzarella pearls, smoked mackerel and lemon cous cous for lunch, and egg, spinach and lean bacon for dinner!) and I can safely say my patience has left the building.

I have a theory about Thurston and his wacky behaviour though. I think that in general Thurston is approximately 2 years delayed developmentally, which would mean that now at the age of 4, we are finally heading into the terrible 2′s! Looking back on the morning I spent/endured with him, it was very similar to the same bedraggled feeling I had with my other tiny toddlers. It got to 1.30pm when I realised I hadn’t had breakfast or brushed my hair (despite having done 2 school runs, sorry kids). The curtains had been pulled down off the track, the floor was covered in DVDs and the shelves were bare. Marmite toast was stuck down the back of the sofa. I made him a bottle of formula but he didn’t like the colour of the lid and repeatedly screamed “MILK MILK MILK…”. He followed me to the kitchen, saw me tip the formula into an ‘appropriately’ coloured bottle, then screamed again “NO MILK, GO IN KITCHEN”. He then watched as I made an entirely new batch of formula (uncontaminated by the blue-lidded evil bottle). He lay on his pillow, drank the milk and then started all over again “BISCUIT BISCUIT”.

By 12.15pm, Grandma had arrived to take him to nursery as the weather wasn’t really great for walking. Thurston had ignored his lunch for half an hour because he was too busy making me replay the same episode of “Ooglies” off of the Sky + planner, despite the fact that I bought him an entire “Ooglies” DVD for his birthday yesterday. I decided that he obviously didn’t need lunch and so I tried to get him into his nursery uniform. However, Thurston has a frustrating (yet impressive) party trick of relaxing all of the muscles in his body and going completely floppy. When you add that to the fact that he is double-jointed and bends in whatever direction you move him, it was basically like dressing a fish. Once dressed, he obviously fancied his lunch, which due to his weird mood was a plate of Frazzles, so he went to nursery covered in orange streaks all over his shirt, marvellous. Even as he was leaving, he tried to dump Grandma in favour of going home with one of the neighbours. I am told that all the way to nursery he chanted “Thurston is a nightmare, Thurston is a nightmare”, so maybe I didn’t keep my opinions to myself very well this morning.

He was a beast at nursery too and got in trouble for throwing toys and not sharing. It’s probably unreasonable, but I am always secretly pleased when he plays up for other people because at least then people know I’m not exaggerating! When he got home, he was still pretty grim and spent a good 5 minutes headbutting me in the a**e while I chatted on the phone! That’ll teach me to think I can talk to someone else!! I did manage to briefly cheer him up by letting him sit on the kitchen counter wearing my free sunglasses from Cosmo and a colander as a hat, so I was pleased with that.

Between us, we managed to get some food in him and dunk him in the tub and he did eventually fall asleep, so things are quiet for now. So that was the first day of Thurston being 4. I am keeping everything firmly crossed that he just got out the wrong side of bed this morning (ie. last night) and that tomorrow he will resume to being an adorable little elf!!

Thanks for reading

Hanj x

He’s certainly kept me on my toes this week and I’m fairly shattered! The sleep pattern really is all over the place at the moment as it is so humid and uncomfortable. The current pattern seems to be: Thurston finishes nursery, falls asleep for 5 minutes in Alex’s car, comes home, falls asleep in his dinner until about 6pm then stays awake and won’t go back to sleep til 9pm ish then is up several times a night before finally getting up for the day at 5am. I’m not a fan. Sometimes he will also nap on the way to nursery when I walk him there in his buggy, but more often than not now, he will sit and look through a Peppa Pig book. I love watching him look through a book, as it’s another milestone that I was looking forward to. He looks so serious and thoughtful while he looks at his little storybook, it makes my heart melt.

Another problem caused by the hot weather is that Thurston is covered in a bumpy rash all of the time. I’m not sure if it is a heat rash or a reaction to sunscreen but it’s a shame because I don’t think there’s a lot I can do about it. I kept him home from nursery for a day in case it was a virus and although he slept all afternoon, I don’t think he was poorly, so I will have to just treat the rash instead. A day later there was a bit of relief with a great big thunderstorm. As with all types of wet weather, Thurston was absolutely thrilled! I kept him indoors as it was a full-on thunder and lightning, walls of water, tropical storm, but he would have been in his element if I’d have put his wellies on him and flung him outdoors!! My 8 year old was not at all impressed by the thunderstorm and to be honest, was a bit scared. Thurston on the other hand (along with his other brother) cheered and shouted “hooray” everytime the thunder cracked in the sky! He really does love the rain!

We were due to start a course of Speech Therapy this week with a new Speech Therapist but she was unwell and had to cancel which was a bit of a shame as Thurston was looking forward to it. Hopefully Thurston will be able to make this week’s appointment instead. I’m itching to know what he makes of the new lady! Since we had an unexpected Thurston-free afternoon, Alex & I went shopping for his birthday presents. I always find his birthdays a little bit bittersweet and emotional, so I had been putting off birthday shopping. Birthdays are a bit tricky because obviously it’s lovely to celebrate Thurston and all of his amazing achievements, but it can be hard to be reminded of his age and how far behind he is. Since childhood milestones are generally measured by age, it tends to make birthdays somewhat of a sore point for anyone who’s kid is delayed developmentally. This year is a bit harder even, because Thurston is starting school in September which is obviously really nerve-wracking for me, and looking at all the other children who are about to start school, I just can’t quite see how Thurston is going to fit in. We’ve got a meeting scheduled in for July so I will start a list of questions for that and then hopefully I will feel better. After moping for 10 minutes in the car about how I don’t really like birthdays, Alex made me snap out of it and we went and bought him a car load of presents that I’m really pleased with. I can’t wait for his birthday now, he’s got one surprise in particular that I know is going to make him so happy!

With the Jubilee this week, I’ve been very busy making sure everyone had their Jubilee costumes and party food sorted for school parties and picnics. Thurston’s nursery had a Jubilee picnic (though I found out Thurston had less of a picnic and opted for a relay race with his 1-to-1 instead!). There was a “Futuristic” theme so Thurston went in his Wall-E costume which was ridiculously cute! He looked amazing and was really happy coming home with his Jubilee medal and crown, or “queen” as he called it!

Speaking of Thurston’s ‘alternative’ language, I was slightly red-faced when I took the kids to the park this week. As it happens, Thurston cannot pronounce ‘park’, so when we got there he shouted “big cock, I love big cock”!! Brilliant. The other mums looked slightly concerned, but I couldn’t stop laughing which I’m sure annoyed them even more! Even when I picked him up to leave he carried on “more cock, more cock please”!!

We went out after the park for a big lunch at Chiquito’s. We’ve taken the kids there before several times, but Thurston’s usually only had fries or most times, has been asleep so we hadn’t ordered off the menu for him before. I usually check the allergy information of a restaurant before we go but as it was an impromptu visit, I hadn’t done my research. Alex pointed out that it said on the menu just to ask if you had any queries about allergies so we assumed they knew what they were talking about. When the waiter arrived I asked him if there was any dairy in the chicken bites. He shrugged, screwed up his face and said “what in chicken bites? Doubt it” and didn’t move. I guess I was supposed to base my decision on whether or not to risk Thurston throwing up for 24 hours on this detailed information, but much to his annoyance we made him go back to the kitchen to double check. It just goes to show that some restaurants really need to work on their allergy policies. They are dicing with peoples’ health and it’s really dangerous. I won’t be going back to Chiquitos, I will stick to places who make food fresh so that they can leave out ingredients where possible and they know exactly what goes into it. The best places I have found so far are mostly small, independant places as they know precisely what ingredients they have used and are really helpful. Also, Wagamamas has a pristine allergy policy and everything is made fresh to order.

We’ve just got back from our first time taking the children to Ikea for a day out. We had lots of grand plans for beach walks and al fresco dining this weekend but the rain has pretty much wiped it all out. So we decided to take a little road trip on the spur of the moment. The kids did very well in the car, mostly thanks to The Muppets Movie soundtrack. Thurston was absolutely fascinated by Ikea, especially the showroom with all the little lounges, bedrooms and kitchens. Mind you, he raced through them at such high speed that it wasn’t exactly the leisurely Sunday I had envisaged. He looked so happy that he was allowed to open and shut all the cupboard and drawers and climb on all the sofas! He also ploughed his way through yet another portion of chips and then chose a little blue plastic armchair to take home. Zeke chose a lovely storybook about vegetables (which is the only kind of story he really likes) and Louis got a desklamp to do his work under. All in all, I think it was a success. I’m not really in a hurry to do it again though, I need a great big Nap!

Thanks for reading

Hanj x

Thurston has definitely found the heat a bit of a struggle and has been napping and falling asleep regularly, usually in his dinner which has had a terrible knock-on effect to his sleep pattern! However, he has been very determined to make the most of it and seems to have really benefitted from spending more time outside and having a bit more freedom. At the start of the week, I made an effort to try and ‘tidy up’ my overgrown garden. It was in a dreadful state having not been touched since my husband injured his spine in 2010. As he is still recovering from his surgery, I tried to do the majority of the weeding and raking myself which was easier said than done with Thurston around. Being the little diva that he is, if I am in the garden at the same time as Thurston, I must permanently be watching and cheering everything he does. Focussing my attention on the gardening instead was unacceptable, which I found out in no uncertain terms when I was whacked over the head from behind with a baking tray. I have learnt the lesson that gardening is only doable with 2 adults. One to weed, and one to be the audience member for Thurston’s live performance.

Having tidied the garden, it seemed logical to play in it and so I invited over an old friend from my teenage years and her adorable 3 year old and twin toddlers. We blew up a massive paddling pool and got their swimming cossies out, plastered on the SPF50 and were actually able to sit and drink tea and have a catch up whilst the kids splashed and played. It is so unusual for Thurston to take to people that instantly and the 6 kids played beautifully together. Being a little water baby, Thurston wasn’t in the least bit bothered about being splashed or realistically, drenched by the other kids. In fact, he was one of the main offenders!! I made a pick n mix lunch of french stick, grapes, kettle chips, organix and salad, and the kids were all good as gold sharing their lunches. Thurston joined all of the other kids on the sofa to watch Tom & Jerry and he played with a noisy Peppa Pig book with his new buddy. Although every so often he still took time out to lay with his pillow, there was no instance of him snatching or lashing out, or crying even. It was a lovely moment for me to realise how far he has come and the progress he has made with socialising. I’m so so proud of him. It was nice for me too, to spend time with people and not worry about what they would think of Thurston, he was just one kid in the big mix, which was really satisfying.

Of course, as soon as the visitors went home, Thurston spent the rest of the afternoon asleep on his Dinosaur pillow. This gave the boys a window of opportunity to sneak out and buy a laptop with our tax rebate which is very exciting! I now have a computer which will make blogging quite a bit easier! I naturally started to panic at the thought of another sleepless night after he’d had such a long nap, so at 7pm after a lovely dinner, I threw the kids sandals on them and dragged them all off to Margate beach for a sunset beach walk. We drove so that we could get to a beach a bit further away where we were guaranteed there would still be sand as I am notorious for getting the tides timings completely wrong. I’m so pleased we made the effort to go out, even though it was past the kids’ usual bedtime. We spent over an hour playing on the sand. Thurston was so happy jumping in the rock pools or ‘muddy puddles’ as he called them. He ran and ran and laughed the whole time, especially when his trousers fell down! Louis and Zeke were typical boys and spent their time writing insults about each other in the sand “Zeke smells”, “Louis loves Christians” (!!!). The sea and the sky looked incredible at that time of night and it was really refreshing to let the children just be. It is starting to become a regular thing for us now, to take the children to the beach of an evening and let them just run and wear themselves out. There’s a lovely quality about the beach that puts everything into perspective and reminds you just to enjoy each other and be happy.

I even managed an evening out this week which was brilliant. So that the kids weren’t too jealous, we treated them to dinner at Nando’s beforehand with a couple of our friends. It’s nice to do something with the kids after school when we can, so we don’t get too stuck in a rut. Thurston is very impatient when we go out to eat as he doesn’t understand that food needs to be cooked and cooled before he can eat it, so 6 of us sat there frantically blowing on chips while he barked orders at us all. It’s a good job we all love him!! Despite his outrage, he actually ate his entire meal in super quick time and enjoyed the chicken even though it had no breadcrumb coating. Usually he would struggle with ‘naked’ chicken, but I think because we had gone for dinner staright from nursery pick-up, he was too hungry to care! He did amazingly well and went to bed no problem for his babysitters which was a relief. The boys tried their luck of course and stayed up a little late, but that’s what babysitters are for. I went with my husband and our friends to see Simon Amstell’s new show “Numb” and had a fantastic time. It was the perfect mix of comedy and hippy philosophy that I love. I went home with a lovely warm feeling and felt determined to always look for the joy in life as Simon Amstell suggested.

Next week is the Jubilee weekend, and the children have 1-2 weeks off school so I am looking forward to being outside even more and watching what lovely little boys they are becoming, whilst working on my tan of course!

Thanks for reading

Hanj x

We’ve had a couple of big appointments this week and for once, they went exactly as I hoped and I got really positive outcomes for Thurston. His Physiotherapy review showed that he is hitting all the targets that were set for him including a tiny little jump!! He even stepped over a series of miniature hurdles which was pretty impressive, maybe he will make the Olympics after all! Although he is making fantastic progress, he is getting pain in his right foot and has less of an arch there than in his left, so we are going back to the Podiatrist to see if anything can be done. The Physiotherapist has set up a meeting to hand him over to the Community Physio who will be around if he needs anything during his school life. Also, he is going to join a Pre school physio/speech therapy group over the Summer to try and prepare him for school. I couldn’t have asked for more really.

Today came the dreaded Feeding Clinic review. I have been taking Thurston to the Feeding Clinic since he was a baby and I find it really hard-going. The professionals there are very unapproachable and all talk amongst themselves, and honestly I don’t think they do a lot for us. Today, they discharged us into the care of the hospital Dietician until Thurston reaches the 9th percentile and is off of the specialist formula. He is still very underweight and lacking in nutrients, but only really needs a Dietician’s help, so I was ecstatic to hear that we would never be going back to Feeding Clinic. I probably skipped out of there, I was so happy! Since they had ‘cleverly’ scheduled this appointment at 12pm, Thurston missed his lunch so we took him to McDonald’s (which is recommended by the Dietician for the high fat & calorie content!). The little sneak swiped my pot of ketchup and dipped a chip. I watched him out of the corner of my eye so I didn’t spook him and he picked up the chip, span it round then ate it from dry end to ketchuppy end! Thurston is very anti-sticky food so I hope this is a step in the right direction, and he got a balloon as a reward!

This isn’t the 1st food revelation we had this week. I made a batch of vegan Blueberry Muffins for the family and left the plate out in the kitchen for any passing cake-lovers. Having seen Zeke take a muffin, Thurston decided to be brave and grab one too. He just walked around with it at first, and I thought he was only interested because of the little London bus cake cases my friend had given me. After a few minutes though, he took a big bite and went on to eat a third of one! I’m hoping this will lead the way to more cakes and treats. I’d better get experimenting in the kitchen. Next up, muesli bars!

As usual, Thurston is full of surprises and has recently switched from his favourite Cars 2 DVD to watching marathons of Peppa Pig episodes! I can’t say I enjoy Peppa Pig, but I am grateful for the change of subject. I must say though I am pleased with some of the adorable songs that Peppa has taught Thurston and enjoy being sung to while I do the housework! I thought that the songs were impressive until I realised that he had picked up some new vocabulary from Peppa Pig thanks to George Pig and his love of dinosaurs. Having planned a trip to the Zoo for the bank holiday weekend, I asked Thurston what animals we would see and his reply was “Tyrannosaurus Rex, Brontosaurus and Triceratops”!! I haven’t stopped making him say it ever since!

I wondered if he would be disappointed by the Zoo given that he was expecting to see Jurassic Park, but he was brilliant all day and didn’t cry once. We met some friends at the Zoo who were new to Thurston but he was very friendly and chatty and probably a bit of a show-off. He had great fun splashing in the muddy puddles and running after the peacocks. Just when I thought he was going to be difficult, we went into the Reptile House and saw lizards, crocodiles, tortoises and frogs. All of which, luckily, Thurston assumed to be dinosaurs. So according to him, when you ask what he saw at the Zoo, he saw “Tyrannosaurus Rex, Brontosaurus and Triceratops”.

My other sons are sat next to me as I type and have asked to be included in this blog. How could I say no?! So here are their achievements for the week. Zeke has been a superstar at school and was asked to stand up in assembly to show everybody his homemade game “Muppet Monopoly”. As for Louis, he single-handedly researched and planned our route to the Zoo and was a fantastic navigator.

I’m very lucky to have such weird and wonderful boys

Thanks for reading

Hanj x

Thurston isn’t particularly heavy, in fact he is on the 0.4th centile on all the growth charts, but there isn’t any element of his day that I don’t have to physically help him with. I pick him up over the stair gate in the morning, carry him downstairs, lift him to change his nappy, dress him, lay him down to drink his formula, put his shoes and coat on him, pick him up and put him in the buggy, push the buggy 30 minutes to nursery, lift him out, take his coat off, walk 30 minutes back again, lift him to put him in the car seat, lift him into his booster seat at the table, carry him up the stairs to bed, and then get up and down (or sometimes just up!) all night with him. It was only this week when I’ve been feeling tired that I realised that usually by the age of 2, I wouldn’t be doing 90% of these tasks for him anymore. It actually is quite physically tiring.

My first feelings were a bit despairing. If I’m this cream-crackered by lugging him around now, what will it feel like next year or the year after if he is still delayed developmentally? I can’t really expect my husband to take the brunt because he’s still recovering from his spinal surgery and I don’t want to risk him having any complications. I’m really not in the mood to nurse him back to health yet again!! I’ve just had to purchase Thurston a new 3-wheeler, pneumatic tyre pushchair because even the tired old buggy was feeling the strain. I’m a pretty tiny person, (4ft11in, very tiny) and so carrying Thurston at 3 years and 10 months is definitely getting tricky. When we are out and about, on the beach, or at the zoo, or even the school run, if he is walking I also have to keep up quite a speed so I can grab him at any moment so that he doesn’t head into the sea or walk out in front of a car. He doesn’t have the slightest sense of danger and so I have to provide that for him and be his protective bubble, which leaves little time for slumping on a bench drinking an iced tea. Thurston even loves to reinact dramatic moments for his own amusement which means that if he was to fall over, he would then throw himself to the ground several more times afterwards to relive it. I think it has something to do with sensory feedback but really it’s just another thing that scares me half to death every day!! There is more cardio and stretching at home too, where as well as the usual tasks, I can often be found underneath the sofa looking for lost dummies or removing the sofa covers and washing them because Thurston has wiped marmite sandwich all over them.

The second thing that came to mind was a feeling of outrage that I’m not slim and toned. Given the amount of lifting, stretching, walking and reaching down the back of the washing machine for missing toy cars I do on a daily basis, I ought to be a lot slimmer than I am. We eat pretty healthily as a family, I love cooking and cookbooks and cookery TV shows. I seem to gravitate towards anything gluten-free, dairy-free, vegan etc despite neither having allergies or being a vegetarian. So I definitely am clued up on food, yet there is a good stone and a half that just *will not* shift. It seems so unreasonable. I don’t even drink alcohol and I’ve completely given up chocolate, I’m such a goody-two-shoes! Yet, I don’t think you’d know it to look at me. Given my outrage, my 1st port of call was unsurprisingly Google, where I found some interesting scientific research about how sleep deprivation can cause your body to retain fat stores to use as energy. I’m fairly certain this explains it! The only problem is, there doesn’t seem to be a great deal I can do about it. This week alone, Thurston and I have pulled 2 all-nighters, and all the other nights, I have got up to see to him between 5-6 times. I seem to be caught in a viscious cycle; if I decrease the amount of food I eat, I will not be able to function. Yet, if I don’t change the way I eat, I am destined to stay apple shaped (at best!) until Thurston sleeps through, which at the moment feels like lightyears away.

In this situation, I have had to have a little word with myself and decided that I am going to stay as I am. I know I am eating well and that all of our meals are balanced and nutritious. I talk a lot about acceptance and loving people for being lovely people, so I need to try my best to direct some of that at myself. I’m not giving myself free-reign to scoff Kettle Chips and Ben & Jerry’s, but I think I am going to continue as I am with my home cooking, salads, fresh pasta and vegan muffins and just accept that this is the shape I am for now. If I was to be living on no sleep whilst drinking Slimfast instead of eating dinner, I’m not convinced my family would enjoy my grumpy company! Today I returned a small stash of Topshop purchases that had been sat in my bedroom with the tags on because I’d foolishly bought things to slim down to. I’ve got a nice giftcard now and I’m going to make sure I spend it on things I can actually wear. Right now. If I try and dress for my current shape, maybe I’ll be a bit happier in myself which will be beneficial to everybody!!

I’ve realised that while Thurston does a great job of keeping me fit and active, he does an even more amazing job of wearing me out to the point where I can’t remember my purse when I go shopping, or I smash my iPhone rushing to help him, and he seems to delight in keeping me up all night afterwards to recite entire episodes of Peppa Pig, including very enthusaistic snorting!

Thanks for reading

Hanj x

Last week, we got Thurston’s school place offer. He has been offered a place at the school where he attends nursery which is exactly what I wanted. In fact, I didn’t put down any other options as I’m certain that he belongs there. The school is really helpful and understanding with Thurston’s needs, and more than that, they just seem to genuinely really like him and want him to be happy. Him being happy is all that matters to me. As happy as I am that he is going to the school we carefully chose for him, it has raised a few issues for me, not least of which how I’m going to get 3 children to 3 different schools and back every day, currently without the use of a car. If anyone has any ideas on this, please let me know because I am still puzzled!

Apart from the practicalities, the official-ness of Thurston’s imminent school days is very unsettling for me. I have packed 2 kids off to school before (including one who only turned 4 a week before he started), and honestly, it hasn’t affected me. I knew they would be fine and they were. I was confident that I had raised them to be polite, sweet little boys with no qualms about dobbing in any horrible brats who so much as give them a nasty look. So far, I have been proved right, they are proper little telltale, suck-up, teachers’ pets just as I had hoped. Now that Thurston is abandoning me, I’m starting to feel a bit weird about it.

I always assumed that when I shipped the 3rd baby off to school that I would start to feel broody for another baby, in fact I’m always about 25% broody. However, now that it’s here, that’s not how I feel at all. I’m not broody for another baby because it wouldn’t be Thurston. Thurston feels like he is an extension of me and a lot of the time I feel like I am the only person who understands what he is thinking and how he works. With my other children, I worked 22 hours a week and shared childcare with my husband, so I knew that they were happy and understood with a variety of other people. However, once Thurston was born, I ended up as a housewife/stay-at-home/full-time mum or whatever people call it these days! On top of this, Thurston obviously had a very high, constant need for care and attention, so I’ve always felt (probably overly) clingy to him. Because his lack of communication skills, it is hard for me to trust anyone with him for more than a couple of hours because they might not know that he prefers to watch YouTube in the reflection in the oven, or that he doesn’t want to play with his toy cars, he just wants to put them all back in their original packaging over and over again. Therefore, T & I have been joined at the hip for the last 3 years and 10 months. I know him inside out and despite having little in the way of speech, he is delightful company.

Since it was my birthday 2 days ago (I turned 29 NOT 30!), I’ve been having a think about the last few years and whether things happened for a reason. I’m not sure if I believe in fate, but in 2007, I lost a baby 12 weeks into pregnancy. Looking back on it now, losing the baby meant that I was given Thurston. I wouldn’t have had him if I hadn’t lost the other little one. In a weird way, I feel like I was meant to be his mum, because no one else could be. He is a complete and utter pain in the bum a lot of the time but he is also the funniest, most adorable, creative person I’ve ever met. I am probably ever-so-slightly biased, but Thurston Jonas is truly the most beautiful little boy I have ever seen. His eyelashes are so long that grown women are jealous of him, he looks effortlessly cool in whatever clothes I dress him in, and he has the shiniest golden hair. He is a dream! I might be being selfish, but I don’t want to share him for 6 hours a day, 5 days a week and I might just indulge in a little sulk about it!!!

When my older children come home from school, I am given the low-down on their days. They love to shower me with the gossip of which kids have been in trouble, who has got weird new shoes, what all the other kids got for Christmas. They also tell me everything that they’ve been up to that day (albeit after I have bribed them with custard creams). The hardest thing about the prospect of sending Thurston to school is the likelihood that I won’t know what he’s been up to. There will be 30 hours of every week where I won’t know what he has been doing because he won’t be able to fill me in. At the moment, we have a home contact book from nursery but I’m not sure if that will continue into reception year. Even if it does, I know it won’t contain the level of detail that I need to be happy!! Added to this is the uncertainty of having a child with special needs go to school. I’m hoping that by keeping him at the same place where he goes to nursery will mean that the children there will grow used to him and his peculiar ways and so hopefully he won’t take too much flack for it. The Statementing decision is also due next week, which is probably adding to my anxiety about the situation. I take comfort from the fact that Thurston is now incredibly assertive and if he is unhappy or not getting the level of attention he needs, I’ve no doubt that he will make his feelings known, even if it is by yelling or headbutting whoever’s nearest to him. He works with what he’s got!

Another side to my little buddy moving on, is what on earth am I going to do with myself? I have been at home for the last 4 years, going to speech therapy, physio, hospital appointments. I’ve spent my days teaching Thurston how to eat and say “hello” to people. I don’t know how to be normal. I suppose the ‘normal’ thing to do would be returning to work, but I need to find something that is more flexible than just being within school hours. If I have a job, I need to be able to leave at the drop of a hat, in case Thurston has a sudden temperature or has hit someone in the face with a cow-bell. I’m suddenly realising that being someone’s Carer as well as their parent means you never stop being on call. Hopefully, I will be able to find a couple of things that I can fit around being Thurston’s everything, perhaps working from home. Living in my little Thurston-bubble has meant I’ve forgotten how to be a normal woman. I definitely need to sort that out and even though it’s scary, I am a bit excited about being Hannah again, instead of “Thurston’s mum”!

Since I’m being nostalgic, here’s a few photos of me and my baby! Thanks for reading. Let me know how you all got on with the transition to school! Hanj x

We took Thurston to see the out of hours GP yesterday, he had been so so poorly during the day at home. His temperature was peaking at 39.9 and he was getting more and more lethargic and couldn’t keep any fluids down, so I knew he was going to need antibiotics. We waited around all day for the doctor to call us back and he gave us an appointment of 7.30pm because it was so busy up there. Of course this is no problem, but when we got there we were the only patients and there were 3 doctors! Before we left the house, Thurston had been very difficult to rouse and I was starting to be really quite worried about him. As soon as we were called in to see the doctor, he turned into a completely different child. We introduced him and obviously pointed out that he is Autistic and doesn’t have much speech, only it turns out that when Thurston is poorly or worried, you can’t shut him up! We’ve been to the out of hours doctor many times in the past and they are often fairly grumpy and who can blame them? Thurston had this guy in fits of laughter to the point that he couldn’t actually listen to his chest. There was no stopping him! “U ok doctor? is my ear doctor? u sad doctor? u like toy story doctor? i watch cars doctor. whatsa matter hanj? i go daddy car doctor. my name thurston doctor. bye doctor. have nice day doctor. see soon doctor!!”. He certainly knows how to lighten the mood. If it hadn’t been for the raging temperature and oozy ear, you wouldn’t have known there was anything wrong with him! Once we were home, he instantly became clingy and whingy again and is still not his normal self today. He often takes us by surprise and we never know what to expect from him anymore.

It feels as though Thurston has had a bit of a growth spurt this week not in his size, but in his confidence and risk-taking. He also looks different because he has had his hair cut short (thanks to me sitting with him, alex holding the iPod for him and a very talented and patient sister-in-law doing the hair cut in record, super-quick time). As well as this, he is now sleeping (as much as he does sleep) in a bed and sitting up at the table in his booster seat, so it seems very much as if our little boy has fully graduated to toddler, if a little late by the usual standards. After months of trying to get Thurston away from his baby cups, I spent a gift card that had come free with a catalogue on a Brother Max Trainer Cup. I had literally 0% hope that he would touch it other than to slap it off the table, but I filled it with water and left it out on the coffee table for him. I came back into the room to find him happily slurping away as if there had never been any problem with cups and the other 50 + toddler cups I had tried simply weren’t the ones he wanted. In the past, giving him a new cup would have been like trying to poison him. It completely breaks the trust between us and he thinks I am trying to trick him into drinking something new and will often not drink anything else I give him until the next day! You can imagine my surprise that he finished his entire drink of water, wiped his chin and said “thank you Hanj” as if it was the most normal thing in the world! (anyone who has children with low muscle tone or difficulty with traditional spouts on cups should take a look at brothermax.com, they have really different baby & toddler products to the normal ranges which are really innovative and easy to use).

Since it is the Easter holidays, we have been out and about this week. We had a trip to Canterbury and I spent some time with the boys whilst Alex shopped for my (hopefully many, many) birthday presents. Louis had a bit of birthday money leftover so he asked to go to Build a Bear. My kids go nuts for Build a Bear, they would have every outfit, lightsabre, wig, tent and buggy for their bears (Bear Lightyear and Woody the Cowbear) if they could afford it. Thurston on the other hand, is not a shop lover so I was ready to be speedy and get in and out with as little screaming and slapping the general public as I could get away with. Louis was having Woody the Cowbear stuffed to the fluffiness of his liking when it dawned on me that there wasn’t any screaming. I looked round to see Thurston completely hypnotised by the “stuff station”! This is a gigantic tombola which permanently tumbles fluffy bear-stuffing around, it was like he was in a trance. Louis and Zeke deliberated over their bears and settled on a Spiderman outfit, rollerskates and sofa-bed for their bears before printing off birth certificates and having the bear dressed. They managed all this without a peep from their little brother as he was in a cotton wool dream world! Build a Bear is one of those places that before I went there would have made me cringe with its sickly sweet customer service and OTT sentiment. In fact, I still found it hard to watch as the bear-stuffing executive was asking the kids to kiss the heart (that would be stuffed into the bear) so it was loved, rubbed it on their muscles so it was strong and close their eyes to make a wish, and I probably did roll my eyes and mumble ‘oh god’ whilst I watched them completely fall for this tripe! However, there is something almost relaxing about the place. All the kids that are in there are hyper and noisy, so you don’t feel as noticeable as in other shops. It is also one of the few places that encourages children to accept that everyone’s different. You can buy spectacles for your bear or even a wheelchair. Nonetheless, I’m hoping I don’t have to go back there for a good few months as it was all just a bit too lovey-dovey for me!! (I would have much rather spent that hour in H&M but the lift was broken!).

Somewhere I will be going back to sooner rather than later is Wagamamas! Whilst in Canterbury, we took the kids for lunch to Wagamamas as we had a voucher from Christmas that we still hadn’t spent. I’ve talked on here before about Thurston’s love of the mini Chicken Katsu so I knew I wouldn’t have any trouble getting him to eat but I was surprised at how he went about it. The minute the dish was placed in front of him, he picked up his chopsticks and started shovelling it in. Surprise! Thurston is a chopstick pro! Alex and I are regular chopstick eaters and Louis and Zeke can use the kiddie version without any problems, but Thurston skipped that whole step and went for the full on grown-up chopsticks. Alex and I just stared at him in disbelief, laughing while he devoured his whole Katsu and then moved onto our Ebi Katsu (breaded King Prawn) as he was still hungry. I didn’t even recognise him anymore. This is a child who was referred to Occupational Therapy again last week because he cannot use pencils and here he is chopsticking his way through lunch! There is nothing better than when Thurston surprises me, it feels like Christmas every time!

For Good Friday, we decided to spend the day in Margate doing traditional seasidey things. Lunch had to come first as Zeke’s tummy was starting to sound angry, so we took them to the Greedy Cow Deli in the old town. Alex and I had been there while the kids were at school a couple of weeks ago and noticed that they had kids burgers and nutella sarnies on the menu so knew we’d be fine for the older boys. Out of habit as a mum of a kid with allergies going somewhere new, I packed Thurston his own lunch of Organix crisps and marmite sandwich. We sat outside despite the fact it was pretty damn cold because we couldn’t get the buggy up the winding staircase and I started feeding Thurston his crisps. When our food arrived, he started to cry and shout so I gave him my iPhone assuming this was what he wanted. He wouldn’t stop crying and started reaching across the table shouting at us all. I was just about to give up and take him off for a walk so the others could eat in peace when he grabbed the doorstep sized chunk of toast and rapeseed oil from the side of my salad. He scoffed the lot, and the next piece. Then he ate half of Zeke’s beefburger. I was so surprised but I felt so guilty that it hadn’t even occurred to me that he might want his own plate of food like everyone else! Next time we go there, I will order him his own burger. I’m so proud that he is starting to do things with us as a family, and he is really becoming ‘one of the boys’ rather than ‘the boys and the baby’. It’s a lovely feeling.

After lunch, we went to the beach. Louis and Zeke went for a ride on the mini train and Thurston went for a long walk on the sand to walk off his greedy-guts lunch. Even though his feet were turning in and his left leg was going wonky from being so tired, that kid walked for at least 20 minutes, almost the entire length of the Margate sands. I was so impressed with him, I was even struggling to keep up. At the other end of the beach there was a big bouncy-castle type of maze/obstacle course. It was fairly empty so I couldn’t see any reason why all 3 boys shouldn’t have a go in it. So we took off Thurston’s shoes, picked him up, threw him in the bouncy house with the others and hoped for the best. We followed him alongside the house, watching through the mesh and the joy on his face was so adorable. He bounced and crawled and had a blast. The bouncy castle started to fill up and the boys’ time ran out. It soon became obvious that Thurston wasn’t interested in coming out. No amount of offers of iPhones or daddy’s car were helping. Alex had a word with the owner and I was nominated to head in and retrieve him. So with my shoes off and a benchful of parents staring at my arse, I crawled through the bouncy castle and fought my way back out with a happy boy under my arm. Thanks Thurston.

Another surprising thing happened this week. After telling our miserable key worker Marge (see Hiring & Firing entry) that we would only contact her if she was needed (which she hasn’t been), she came to our house this week to inform us that she is officially closing Thurston’s key working case file! How unexpected! I am so pleased we are now competely key worker free, interfering nosy busy-body free. What a relief! We can handle all of Thurston’s appointments and forms by ourselves so I am very happy that there is now no chance of her just turning up to the house or any of his appointments.

So much of our day to day lives are spent doing the same things over and over. Watching the same movies, playing with the same toys, singing the same songs. When Thurston does something new out of the blue and takes us by surprise, it is refreshing and exciting for everyone. When someone develops so slowly, it really gives you chance to enjoy all the little things that you otherwise might skim over or try to rush along. Any little thing Thurston does is a massive achievement to me because I know how much determination and bravery it takes for him to try something new. I hope he never stops taking me by surprise.

Thanks for reading and keeping me company!

Hanj x

Today is World Autism Awareness Day, and so “Daybreak” interviewed a famous author with a book out about her son with Asperger’s syndrome. I managed to get the children to stop singing “Man or a Muppet” long enough so I could hear what she was saying and I was so disappointed. She stated that all Special Needs children ‘must’ go to Special Needs schools or they will be bullied and never make any friends. She said that putting a Special Needs child into a mainstream school was like “giving a fish a bath”, it was so pointless. It’s very worrying, especially on World Autism Awareness Day that people will have watched “Daybreak” and assumed that this woman knows what she is talking about. She doesn’t. She knows as much as I do, which is everything about ‘her’ child, no one else’s. Autism Spectrum Disorder is just that, a spectrum. Therefore, there is a whole spectrum of ways parents can approach their child with Autism, with lots of different and often surprising results.

Don’t worry, that’s the serious part over! It is a very beautiful sunny Spring day and lots of people all over the world are hosting amazing fundraising events to raise money and awareness for World Autism Day. Last year, my good friend Clair took part in a Roller Marathon to raise money for the National Autistic Society because she is so lovely. Perhaps next year, I will arrange a fundraising event myself, but this year I have been a bit pre-occupied with family stuff and I thought I’d concentrate on this bumper blog edition to raise awareness.

So much has happened in the last 7 days, it’s hard to know where to start. It’s been one of those up & down weeks with good news and bad news in equal measure but the good has just about pipped the bad stuff!

Thurston is turning 4 in a couple of months but for several reasons was still sleeping in a cot. Firstly, it kept him contained which is fairly important to someone who cannot come down the stairs by themselves. Secondly, it kept him away from the other boys which is fairly important for someone who is known to whack people over the head while they sleep. Thirdly (and probably the least valid reason) is that we are lazy and scared and keeping him in his cot was the easiest option!! However, we live in a 2 bedroom house with 3 children who are 8, (almost) 6 and (almost) 4 so it had finally come to the point where we needed some more space and bunk beds for the older children seemed the most obvious solution. This meant upgrading Thurston to a proper bed and finally chucking out the 8 year old decrepid cot. We put a safety gate on their bedroom door and I still carried Thurston up to bed asleep so he didn’t actually have a clue anything was different until he woke up at 2am. He cried for me as usual, then got up and didn’t seem phased in the slightest. The next night, my middle son Zeke woke him up as soon as I put him down and he pressed the button on the lullaby musical book constantly for 10 minutes before I had to take him back downstairs to let the others get to sleep. He went back to bed fairly late and actually didn’t sleep too badly. So far, so good. In the morning, I woke up feeling like someone was staring at me. I get this feeling a lot and it is usually Zeke begging me for food as he wakes up so ravenous that he is often close to tears. I opened one eye and realised that Thurston was stood at the end of my bed grinning at me. Zeke had let him through the safety gate in his desperation for cereal. I didn’t want Thurston to make a run for the stairs because he still cannot descend stairs safely, so I had to talk to him the way people talk to suicide jumpers; very calmly while edging nearer to him! I finally grabbed him and pulled him into bed for a cuddle, then gave Zeke a safety talk! While we have been making the transition from cot to bed, Thurston has regressed a little bit which is to be expected I suppose, and is fighting sleep again, which means a sore face for me. Last night however, there was a definite turning point. Thurston started whinging in his bed at 1.45am. I went in to see him, fully expecting to get up with him but instead, I gave him his dummy and he rolled over, hit the lullaby button and went back to sleep. I probably would have fainted but the thud would have woken him up, so I tiptoed back to bed and miraculously, Thurston slept for a few more hours. I’ve never been so happy!!

When I bought the bunk beds at Ikea, I ended up buying a fair few other things at the same time, so it has been a week of flat-pack assembly and spring cleaning. A couple of days ago when I was sorting out the toy boxes, I bent my finger back and the nail bent with it and cut underneath my fingernail open. OUCH!!! I’m not just letting you know so that you can give me floods of sympathy (although that would be appreciated, I love a bit of sympathy, I’m a wuss!), but it made Thurston sympathetic towards me which was very very sweet. Thurston’s language is mostly Echolalic, which means he speaks in repetition of words and phrases he has heard from others, so the likelihood is he was just copying what my husband and other kids had been saying to me. I don’t care though, it was so adorable! It goes like this:

Me: “Thurston, mummy hurt finger”

T: “mummy hurt finger. oh no”

(i show him my finger)

T: “poor mummy. daddy! hannah hurt finger. it ok hannah” then he HUGS me!!! I love it. Now I realise the next part is self indulgent and silly but never mind. I painted my nails pink last week and they are inevitably now completely chipped and there is just a splodge of pink on one of the nails. Thurston has ignored the genuine cut under my fingernail and thinks that the splodge of nail varnish is the injury. I may or may not have painted a new splodge of nail varnish on that finger so that we can play “poor mummy” whenever I need a hug. There, I said it!! Anything for a cuddle with my gorgeous kid!!

The boys have just finished their Spring terms at school and nursery so we have been busy with Parent’s consultations. The older boys have done beautifully well, I am very proud of them. Louis was taken out by his teacher for a treat of cinema and lunch for doing so well and he is doing fantastically. Zeke’s headteacher rings us weekly to tell us he has had a special mention in assembly for his good work. However, his teacher thinks he may need a spot of Speech Therapy for his “th” sounds. At first she tried to blame me for my common accent (I can’t help it, I’m from Margate!) but she has decided to check with the SENCO to see if he might just need a little bit of help. Thurston’s Parent Consultation was a touch more manic because we took him with us, but that went well too, and with the help of his one-to-one helper, he is making progress which is very reassuring. He is even starting to interact with the other children which is really heartening to hear.

As welll as reports from nursery, we are currently swamped with copies of statementing reports from various Healthcare Professionals. The statementing process is well underway and he is up for review mid-April. This week he was observed by an Educational Psychologist whilst at nursery. His report arrived Saturday morning. It has everything you want from a Statementing report which sadly makes for pretty bleak reading as a mum. Statementing reports are understandably negative with good reason. A few weeks back, Thurston’s nursery funding was dropped by half because someone had written on a report that he was “happy”. Within one afternoon, he became so distressed that the funding was almost immediately reinstated, but you can see why the professionals refrain from saying anything complimentary. The report is very thorough and picks up on a couple of points that I’d forgotten to mention in my paperwork so I was pleased from that point of view. However, the report also includes results from a series of tests looking for Learning Difficulties. The results are in percentiles and so if your score is on the 20th percentile, it means that out of 100 children the same age, 80 children would be expected to score higher than your child. Here is the killer: Thurston scored on the 0.5th percentile. They wouldn’t expect anyone to score lower than him. That is a pretty grim thing to have to take in. Gutting actually. I sat on the sofa, showed him my splodge of nail polish to get a hug and stroked his long blonde hair and kissed him. Nothing else I could do about that really. Luckily, I spent the rest of the day watching my best friend Kate try on wedding dresses otherwise I might have wallowed all day. (Kate looked beautiful by the way xx)

As I said, it’s been a very busy week. As well as moving out of the cot, Thurston has also been evicted from his highchair. This was probably another result of laziness on our part but Alex has been unable to sit at a table during his back-attack and so Thurston has eaten all his meals in his highchair in front of the television. So, once I’d assembled the new Ikea table and chairs, I set up Thurston’s new Disney Cars booster seat and we now eat our meals together at the table like a respectable family! Thurston’s focus on his food has improved rather quickly and so I hope it will help me introduce some new foods to him. He also finished his latest Physiotherapy programme this week and has actually completed all of his targets. Clever boy! He managed to step over a block, do a little jump with both feet off the ground and kick over a tower of bricks. Most importantly, he has begun to properly run rather than a grannyish speed-walk. His little run is so enthusiastic and gorgeous to watch. It also has the added bonus of forcing me to do a little jog a few times a day which can only help me fit into the Maid of Honour dress for Kate’s wedding!

Thanks for reading and please share my blog as your good deed for World Autism Awareness Day

Hanj x

ROUTINE! Now, I am no stranger the the idea of routine for children but I can’t say I’ve ever really been a follower of it. When I had my 1st little boy, I was advised by my Midwife and Health Visitor that he must be in a routine otherwise he will never sleep through the night. At 20 years old, I was very reluctant to be tied down to any sort of routine. I needed some freedom to be able to pop out with the baby when it became too stressful to be cooped up indoors. I was living right on Margate seafront, and the early evening strolls along the beach and eating fish and chips on the sand whilst Louis slept in his pram are some of my fondest memories from his babyhood. It was often frustrating when I wanted to go out but friends couldn’t join me at certain times because that was when their baby napped. However, motherhood is different for everyone and you should do what works for you so I fully understood why some people went for the routine and reintroducing some order in their life after the chaos of having a baby!! For me though, routine would come soon enough since kids are packed off to school at age 4, I was happy to make the most of those chaotic baby years.

Once Thurston was diagnosed with ASD the “routine” argument came back with a vengeance. According to the experts, the only way children with ASD progress and thrive is if they can rely on a fairly strict daily routine. At the Earlybird course run by the National Autistic Society, it seemed that having a routine was the only option. Alex and I were often treated as unrealistic hippy-dippy types when we suggested our alternative theories of exposing Thurston to as many new experiences as possible and helping him to enjoy a childhood free of enforced routine. I do understand the theory of it all. By knowing what is coming up and the order things are done in gives children with communication difficulties a sense of comfort and reassurance which will then make them confident to do things within their routine. I get it, I just dont think it’s the only way to live with Autism, and it just isn’t right for our family. Early on in his diagnosis, Alex and I talked about it and decided to go against the advice of visual timetables and constant routine and find other ways to comfort Thurston and keep him calm so that we could expand his horizons.

Our grand plan has definitely hit a few bumps along the way though. When we had only one and later, 2 children, Alex and I both worked equally part-time hours. I worked at the local hospital during the daytime and Alex worked evenings at the local cinema. We didn’t earn huge amounts of money but we had a perfect balance of equal parenting duties, equal earnings and lots of flexible family time. When we had Thurston and his difficulties became apparent, it became harder and harder for me to think about returning to work. It has been a complicated process sending him to pre-school and earlier childcare wasn’t really an option. So, Alex took an office job full-time and I took on a much more traditional role in the home as well as doing everything that Thurston needed in terms of appointments and form-filling. My income now is Carer’s Allowance. Although we pool all of our money and do not have individual money, it’s definitely harder for me to feel like I contribute. Suddenly, our family dynamic was very different to our anti-routine ways of the past. Alex was in a 9-5 and I was now a Housewife, hardly the Bohemian family life I had in mind. Next came the added obstacle of our older children starting school, now not only was Alex a suit in an office job, but we were out at 8.30am every day to take the children to school. I was now in an enforced routine of my own, never mind Thurston. Naturally, with the children at school, they had a proper bedtime of 7pm every night, and so mealtimes were also regularly pencilled in at 7am, 12pm and 5pm.

In November 2010, we hit yet another problem. My husband sneezed………and massively prolapsed a disc in his spine. A year and a half later and he has been through a Discectomy, Epidural Steroid Injection, Spinal Fusion surgery and months of Physiotherapy. He is due to go back to work this Monday. As a mum, carer and now nurse to a broken husband often off his face on Morphine, the routine became a massive help to me. If I was exhausted from doing everything, at least I had the 7pm bedtime to cling to, and I knew that from 8.30-3.30 every weekday, someone else would be occupying 2 of my children. Living on a combination of Carer’s Allowance and Statutory Sick Pay on & off for a year and a half has also had an impact on our hopes to travel and take the children to festivals.

As I say, Alex is due back to work on Monday. Although this means we will be back to our routine of work, school and household chores and of course in September, Thurston will be at school too, we are refreshed with the excitement at being able to do things out of the house as a family. We might be stuck in an enforced routine from work and school, but we will have the freedom to do whatever we want outside of those times and the possibilities are endless. If we want to do something outside of the routine, we have come up with coping mechanisms so that if Thurston becomes distressed or doesn’t want to be involved in something while we are out or visiting people, then it won’t disrupt the whole outing or ruin it for the other children. If we are staying somewhere different, we take Thurston’s own pillow with us as Thurston is very comforted by stroking the label on his pillow. We take his food everywhere in case it is hard to get people to cater to his allergies. In fact at the weekend, we pre-cooked him some chicken and packed it in a lunchbox for him when we ate at a restaurant. When we sit down at a restaurant table, Thurston doesn’t understand why his food doesn’t instantly appear and can kick up quite a fuss, in fact he once chipped a tooth headbutting a table because the food wasn’t quick enough! He happily sat and ate his packed-lunch chicken appetiser whilst waiting for his fries and we all got to have a drink in peace! We’ve also downloaded a couple of his favourite movies to the iPod touch so that he can escape into the world of “Toy Story” when it all gets too stressful for him.

It is worth going to the effort of finding other ways of coping with the stresses of going out rather than avoiding going out altogether. The positives far outweigh the negatives. Watching the joy on his face when he crawled along the sand on Barry Island; his laugh when splashing in the rock pools on Westgate beach; the way he is entranced by video installations at art galleries; waving at him at the top of the sand mountains in Margate; seeing him bounce up and down when we saw Winnie the Pooh at the cinema; taking him on the Dumbo ride and the Magic Carpet ride in Disneyland Paris; walking him around Trafalgar Square in the sunshine; seeing him wobble along the pebble beach at Brighton and seeing him dance at weddings. It’s all been worth the effort of breaking him out of his routine and putting up with a whingy child the next day.

Thurston is comfortable with going with the flow for the most part and I feel he benefits hugely from experiencing new people, places and activities. Now that Alex is returning to work and Thurston is going to school I might even return to work myself. Hopefully this means we will have a bit more money available to us which means we can expand our horizons even further. We have been stuck indoors for a long time which has given us plenty of time to plan things we really want to do with our kids in the next 2 years. Added to this, I am starting to learn to drive which will give us even more freedom to come and go as we please.

I can’t wait to go to new places and experience new things with my family, I feel like I have a new Joie de Vivre!!

Hanj x

The hardest aspect of Autism for me personally, is the sleep disorders that can come with it. Unfortunately, Thurston has a fairly extreme sleep disorder. I already had 2 kids when I had Thurston, so I was used to a certain amount of sleep deprivation with a newborn, a teething baby or a toddler having nightmares. All of that is completely bearable and understandable. You get grumpy, drink more coffee, people feel sorry for you and ask how you are. Ultimately, you do end up looking back on it fondly in a way, because losing sleep is part & parcel of having a baby. It’s almost part of the fun, you compare sleeping patterns with other mums, share tips (not that I’ve got any, I reckon a lot of it is just jammy luck!), discuss which under-eye concealers work best and usually by age 3, you’re back to normal, sleeping in your own bed all night with your man and wondering whether you should go through it all over again!!

Obviously when Thurston was a baby, he didn’t sleep. Apart from general waking for a feed, he also suffers from Gastro Oesophageal Reflux and so couldn’t lay on his back. He either slept on our chests while we tried to sleep sitting up propped by pillows, or in a vibrating bouncy chair. Not exactly ideal but we didn’t mind, because we assumed that he was a difficult baby and we would have to endure another couple of years of poor sleep and then it would get back to normal. Erm, no! The reflux got worse and worse. Thurston was even gagging on his own saliva and wasn’t safe to sleep in a room without us since the Speech Therapist had said “there is an unacceptable risk of gagging or choking”. We squeezed the cot into our bedroom but it became exhausting dragging ourselves to the end of the bed every half hour and changing all the vomitty bed sheets. I actually started to be frightened of going to bed! By 8 months old, Thurston was sleeping in the bed with us so he could be propped up on our pillows. We had a stash of towels and muslin cloths by the side of our bed. Now don’t judge me, but when your child is vomiting in your bed up to 10 times a night, it revoltingly becomes acceptable to simply wipe his face, stick a towel over the bed sheet and pass out while he has 20 minutes sleep from the relief of finally throwing up!!

The worst night we had with Thurston during this time was the night before Zeke’s 3rd birthday. We had cleared up so much refluxy sick that we had run out of towels and bedsheets and had no option but to just get up for the day at 3am and let Thurston sleep in his bouncy chair (hardly ideal at 14 months old). Naturally, in the birthday excitement, Zeke got up for his Mr Men themed birthday just before 6am and we managed through our slightly hysterical sleep deprivation to enjoy him opening all his Mr Men toys and books before Alex went off to work. By the time my mum and sister came to wish him Happy Birthday, I couldn’t take it anymore. My eyes were hot and Thurston was just flopping over on the floor. I left my sister to babysit and took him to the GP. He prescribed infant Gaviscon (on top of his normal reflux meds Ranitidine and Domperidone) and some Phenergan to allow him to sleep while the reflux was at its worst. I initially felt very relieved that we were going to get some sleep that night but still had to get through the rest of Zeke’s birthday before we could make it to the finish line! We actually had a brilliant time, our friends came with us and we had a blast, but Thurston wasn’t right. He was clingy and miserable and desperate to sleep. It was nothing like having a 14 month old, I felt like I had a gigantic newborn.

(me and T in Chiquitos for Zeke’s birthday)

That night and for the week the Phenergan lasted, Thurston slept. Disappointingly, Phenergan can only be used short term. Damn.

Thurston’s sleep pattern did change. We found a combination of Reflux medicine that worked for him and he stopped wretching and vomitting in the night. We moved his cot into the children’s bedroom and he started to sleep for longer stretches. Amazing! It was just around this point that Thurston began fighting sleep. I don’t mean in the usual whingy, overtired toddler way, I mean proper, full-on fisticuffs!! Every night, I would give him his medicine and a bottle of formula on my lap and just when he was about to drift off, he would freak out and start smashing my face in. I have had black eyes, bruises, scratches, split lips, nose bleeds, earrings yanked out. It was very sad, he was so terrified of going to sleep, of the unknown, that he would do anything to stay awake which meant lashing out at me. During the daytimes, he was really suffering. Laying on the floor for hours and hours stroking the label on his favourite pillow. He was constantly ill with ear infections, tonsilitus, viruses etc. We were exhausted.

When he was diagnosed with Autism aged 20 months, he was placed under the care of a Development Paediatrician. She offered us Melatonin to help him sleep. Melatonin is a naturally occuring hormone which helps us all to sleep. To break through the cycle of fear that Thurston was stuck in, he needed a top up of Melatonin on prescription. The 1st time we gave it to him, he had his medicine, formula and cuddles like usual, then drifted off to sleep after 20 minutes. Peacefully. No fighting. To me, Melatonin is a magical, fairy-dust, miraculous, invalualuable wonder-drug. It’s the holy grail. It is puzzlingly controversial. We have to get the prescription from his Consultant, as GPs are not allowed to prescribe it. I had to sign a form at the pharmacy to state that I understood it wasn’t licensed for children of Thurston’s age. For something that is naturally occurring in all of our bodies, I do not understand the controversy that surrounds precribing Melatonin to children with sleep disorders. I can only assume that the worry is that every sleep deprived parent would start to drug their child to sleep. I wouldn’t like to be that cynical. I hope that parents are intelligent enough to see the difference between a teething baby and a toddler who is so terrified of sleeping that they are making themselves unwell. Perhaps I am naïve.

I wish I could say that Melatonin spelled the end of Thurston’s sleeping troubles. However, Melatonin can only help children ‘get’ to sleep, not ‘stay’ asleep. As soon as Thurston settled into his new pattern of gently falling asleep with his medicine, he began waking up at never-before-seen, lonely hours of the night and assuming it to be the start of the new day. Sometimes it would be 4am (ouch), sometimes 5am (not too bad), sometimes 2am (soul destroying) and sometimes as soon as my head hits the pillow at 11pm (HELP ME!!). My friends always tell me I look too fresh-faced for not having any sleep. I’m not being big headed, they really do say that, but I think that I am always happy and grateful that something has helped my tiny son to get over his fear of going to sleep. My face is fresh because it’s not being battered every evening. Instead of being scratched and slapped for hours, I get half an hour every night to cuddle my son, stroke his hair and watch him drift off to sleep happily. It’s the best time of day.

Nowadays, Thurston’s sleep comes and goes in phases which I am OK with. The bad phases still sound pretty bad to anyone that values their sleep, but I am used to my little routine of making a little bed in the lounge and watching Despicable Me from 2am until the other children get up. Sometimes I get to go back to bed and sometimes I don’t, but it really doesn’t matter any more. He is happy, content and smiling when he goes to sleep and when he wakes up. How can I be annoyed with that? I might need a bit of extra coffee to get me going and I might have bags under my eyes every day for years to come but that’s why Benefit created Some Kinda Gorgeous foundation. So not only am I grateful to Melatonin, but I am also grateful to Benefit!

Thanks for reading, don’t let the bed bugs bite! Hanj x

I reckon I’m quite an easy-going girl, easy to get along with. My husband would probably disagree with the easy-going bit and my friend Paul would definitely disagree that I’m easy to get along with. Aside from that, I like to think I’m friendly and approachable! The last few years, lots of people have come into our lives to help with Thurston that otherwise we wouldn’t have met, with very mixed results.

When we started out on the path of Drs, Health Visitors, therapists etc., I naively assumed that anyone who is involved in working with kids, especially disabled kids, must have fairly good people-skills. For the most part, this is true but there have certainly been some bad eggs!

When Thurston was diagnosed with ASD, we were immediately assigned with a Key Worker. Her job description was to help us with anything that wasn’t medical. For example, application forms, co-ordinating appointments, liaising with therapists etc. That day, it instantly seemed like a fantastic idea. Having battled to get some help by myself for over a year, and chasing up secretaries and appointments, I was relieved to hand over to someone else. I had a niggling doubt though. There was a definite conflict of personalities. The Key Worker (who I shall re-name Marge!) was incredibly negative about everything. She had no optimism about the future and was very opinionated about every aspect of Thurston’s care. Looking back, I was probably bewildered at the time of meeting Marge. I didn’t have any knowledge of Autism and here was someone who seemed to have all the answers. As the weeks went on, I dreaded her coming to the house. She was increasingly judgemental and started to comment on my parenting skills and wasn’t complimentary about them. One day when she came to visit, she commented on Thurston’s inappropriate behaviour which was in fact him lifting his t-shirt up and showing her his belly button. At 2 years old!! How dare he?!

Alex and I attended the Earlybird course which is run by the National Autistic Society. It lasted 12 weeks and was in a children’s centre. We booked our older kids into breakfast club (which they loved!) and dropped Thurston off with my sister every Thursday then drove to Herne Bay and learnt all about Autism. We learned different approaches, therapies, school options. The 2 girls who ran the course were amazing, they were so positive and answered all of our questions. Alex was practically devastated when the course finished (I imagine this was more to do with the lovely blonde girls serving him tea & biscuits than anything educational). During this time we didn’t see much of Marge as we directed all of our questions at the Earlybird team and got much better responses.

When the Earlybird course finished and we ended up at a few appointments where Marge was involved, I started to realise how unprofessional and downright wrong she was about the way she worked with us. Amongst other things, she blamed the size of my house for Thurston’s sleep issues, she said that we were wrong to send him to a mainstream nursery and he would end up “excluded by inclusion” and most bafflingly of all, she claimed that Alex’s prolapsed disc was a result of stress from Thurston’s diagnosis!!! A discectomy and spinal fusion later and she is still sticking by her shocking ridiculous theory. I now know that it is possible to be happy and positive about life with a disabled child and so I finally felt brave enough at the end of last year after a mortifying “Team around the child” meeting to ‘fire’ Madge for good. Naturally, I made Alex make the phonecall as I am still being a chicken about dumping people but she was told in no uncertain terms “don’t call us, we’ll call you!”. And we haven’t!!

Me and Thurston have been to a lot of Therapy sessions in the last few years – Physiotherapy, Speech Therapy, Messy Play sessions, Occupational Therapy, Mini Movement groups, Makaton classes and Pre-Walking groups. He has worked with at least 16 therapists. The majority of them have been helpful and the classes have been enjoyable and really helped us. However, his latest Speech Therapist is a different story altogether. Thurston LOVES her. He has a genuine puppydog crush on her. He even bats his eyelashes when he says her name (which for blog purposes will be Sophie). Everyone who comes to her sessions with me raves about her, the sessions are so much fun and Thurston has made a surprising amount of progress since starting with Sophie considering how uncooperative he has been at Speech Therapy in the past. Sophie makes an effort to work out how Thurston learns best and she adapts the tasks to get him interested. She also liaises with the nursery Speech Therapist without me even asking. that way everyone is on the same page. Thurston has just finished his latest block of Therapy with Sophie, and asks every morning if he will see her that day!

Everything was going really well until last Thursday when Sophie told us she was being relocated. I couldn’t even pretend not to be upset!! I asked where she was going and she said Canterbury. Well, that is only a 40 minute drive from me so I said to Sophie that we were happy to come to Canterbury for Thurston’s appointments. Alex is still receiving Physio in Canterbury so it’s really no big deal. Besides, when you’ve found a Therapist your 3 year old is so enamoured with that he will sit on a chair and do 20 minutes of verbs, you are happy to travel anywhere!! Sophie seemed thrilled that we wanted to stay with her as she is similarly enamoured with Thurston. Her managers however, are less pleased as it would mean moving all of Thurstons’s care to Canterbury and would have an impact on their budget (but that is a whole other blog!!). I was pleased at the thought of moving all his care, I fancy a change and starting somewhere new. Plus, Canterbury has much better cafe options for post-therapy coffee and chatting!

Anyway, the battle of the managers is currently still ongoing. Apparently this problem has never come up before so no one has a policy on it! I won’t go into detail of all the people Thurston and I have ‘fired’ as it makes me sound a bit difficult! For now though, we are stalking our Speech Therapist!

thanks for reading

Hanj x