The Dreaded “R” Word

One of the best things now that we are heading toward Spring and Summer is the idea of spending more time outside, on days out, in the garden or 10 minutes down the road at the beach. Early evening strolls along the Seaside with an ice cream and kicking a football on the sand, that’s what living by the sea is all about. Eating dinner in the garden, having a picnic, going on holiday is the stuff you daydream about during the drudgery of school runs in the snow and ice throughout the Winter months. However, more and more, people are trying to threaten the easy going family life that was muddling along happily.

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

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I have seen Despicable Me, Winnie the Pooh, Cars, Cars 2, Toy Story 3 and Shaun the Sheep A LOT! I mean a lot. Each film has been on repeat in my house for 3 months at a time all day, every day and all night sometimes. When I am camped out downstairs with the DVD player helping me keep Thurston company in the small hours, the storylines and songs subconsciously slip into my memory. I could recite Despicable Me to you word for word if you like….”we are going to steal ze moon”. I won’t though!

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

Hiring & Firing

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

Bizarre Solutions to Peculiar Problems

My son is *always* asleep on my arm. I have proof:

While he is asleep, one arm goes dead and so I am forced to sit and think/ daydream about holidays to Paris. When I’m glued to the groove I have created in the sofa is when I usually think of solutions to whatever baffling problem thurston has recently acquired. Some things are simple ‘baby-proofing’ ideas but sometimes a bit of blue sky thinking is required.
Having noticed his penchant for my iPhone and losing 2 iPhones to Thurstons need to give them a bath, I extravagantly splashed out on an iPod touch for him. I uploaded videos to it thinking that if we are in a waiting room or cafe without wifi he can watch Timmy Time or Pocoyo on his iPod. I felt quite proud of myself until i was told in no uncertain terms that only “mummy mycod” was acceptable. Now when presented with the iPod touch it gets a big slap and I get frisked for my phone. So maybe my alternative solutions don’t always work but at least I got a new iPod!!

As well as feeding difficulties, thurston (like a lot of autistic children) has sensory issues around food which makes him fussy to the extreme. He likes food which are crunchy on the outside and soft on the inside which basically translates to fishfingers, chicken nuggets, chips, waffles, toast, baby crisps, gingerbread men and hash brown. Not exactly a balanced diet for a 3 year old. I picked up a really good tip from Wagamama. If u cover anything in Panko breadcrumbs and deep fry it then you’re almost guaranteed at least a taste from your fusspot toddler. You can get Panko breadcrumbs from Tesco in the ‘Ingredients’ range and so far it has led thurston to try fresh chicken and fish, carrot, butternut squash and sweet potato. Plus the deep frying gives much needed extra calories to children who have trouble gaining weight. It also feels so nice to give him a meal that didn’t just go straight from the freezer to the oven. In fact the only downside is trying not to eat any yourself if you’re a mum trying to lose weight!

Birthdays, parties and family get togethers can often be stressful for the thurstonator. I’m still coming up with battle plans and ideas to keep him calm when there’s lots of people and chaos around him. These are the things that have worked and that I will definitely keep a note of for next time!
Birthday cakes for people with multiple allergies can be a nightmare. One year we bought a dairy & soy free cake from the supermarket but it tasted like sawdust. Luckily I (well, my mum) found a fantastic alternative. The recipes in Red Velvet & Chocolate Heartache all contain a vegetable ingredient and they are surprisingly incredible. The one we used was a courgette cake made with rice flour, so it was even edible for gluten-free guests. So far, thurston hasn’t shown an interest in cake (although he did eat some of my granola bar today which made me giddy with prospects of new snack potential!). However at least with the wholesome, all natural courgette cake I don’t have to follow all my nieces and nephews around with the vacuum like a loony!!


When thurston turned 3, I learned a valuable lesson about how to help him enjoy parties. I realised the only way to let him enjoy parties and gatherings is to leave him be. He finds his own way to have fun; standing in the garden by himself in the pouring rain while everyone waves at him from indoors; chasing disco lights at a wedding; watching playbacks of himself on a video camera. Once the pressure is off and he isn’t made to join in with pass the parcel or singing happy birthday, thurston ends up entertaining all our friends and family by coming up with his own version of partying. He knows best!

If anyone has any more tips or strategies to share, let me know!!

Hanj x