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

Cars on Repeat

I gave birth to my son Louis when I was 20. I had Zeke just over 2 years later. Having children was brilliant for me, I love being a mum. We carried on doing the same things we did as teenagers but with 2 crazy boys hanging out with us too. We went out to eat, went to the cinema, took the kids on daytrips. I went to work half the week and their dad worked evenings and weekends. We were a team. I look back on those 3 years of being a family of 4 really fondly as it was a stress free relaxed time for us. I never really considered any of my parenting decisions. In fact, I wouldn’t even describe them as decisions. Everything in our family seemed to evolve to the next level effortlessly and organically. I didn’t particularly discuss motherhood with friends, preferring to catch up on the latest gossip or go to Topshop instead. They were really easy days. I hope we can guide our family back to those care-free times, but we are definitely in an alternate family universe right now.

I had fairly difficult, although contrasting births. Louis took 45 hours of labour, an epidural, hormone drip and a ventouse to finally evict him from my belly (he now tells me it was cos there was something good on the belly TV). Zeke was induced and flew out only 19 minutes later without so much as a paracetomol let alone gas & air. Once Zeke arrived, I felt that I was done with pregnancy and birth, it was just too scary! Only a few months later, I felt incredibly contented with multiple motherhood. It was a breeze compared with the uncertainty and shock of being a first time mother. I started to feel broody and since everything was so perfect, I didnt have much trouble in getting Alex along for the ride (so to speak!) in adding another member to our family team. Along the way we lost a baby, which only consolidated our resolve that having another kid was exactly what we wanted. I got pregnant again towards the end of 2007. Compared to my other pregnancies, this was notably plain-sailing. No pre-eclampsia, no hyperemesis. Just growing satisfyingly round and planning being a family of 5. I went 2 weeks overdue and at exactly 42 weeks pregnant I was booked for an induction. Having had 2 quite shocking inducions previously, I was fairly nervous.

Luckily for me, it was 3rd time lucky and I went into labour all by myself (which i am still absurdly proud of!) in the early hours of the morning. Apart from a fairly traumatic experience of having an electrode attached to the baby’s head while he was still inside me, the birth was incredibly straightforward. Almost textbook. I had a little boy. We named him Thurston Jonas. He was incredible, unlike any other baby I’d seen. He had a remarkable mop of black hair which made me so happy. I’d been very patient through 2 blonde children and was thrilled to see ‘me’ in one of my sons. The 2 days we were in hospital, Thurston and I were mostly alone together. It was almost blissful, I breastfed him, cuddled him and stared at him. Almost instantly, I knew that Thurston was different. At first, all I knew was that he was different than my other children but then I expected that. Louis and Zeke were already very individual personalities. I couldn’t believe that mixing our genes together produced such varying results.

Once at home, the atmosphere felt much more tense. Thurston was a fussy, clingy baby and I struggled to get to grips with being a mum of 3. That’s all I thought it was. I struggled mostly by myself as I couldn’t face any criticism of how I was doing. Thurston cried. He cried, and screamed all the time, day and night. Not whinged, *cried*. I couldn’t do anything besides look after him. My toddler would fall asleep on the floor as I couldn’t even lay Thurston down long enough to take Zeke to bed for his nap. My 4 year old had to quickly learn how to make a drink and even a sandwich because I was permanently attached to my red, angry child. Soon, his skin turned red and angry and began to bleed all over his chest, staining all his little clothes. He was sick after every feed, he was miserable (and so was I!).

I spent the Summer of 2008 in my lounge with the curtains shut trying to get to grips with this new phase of motherhood. I stopped breastfeeding and switched him to soya formula to try and ease his sickness. By Christmas, we were all exhausted but I felt oddly optimistic. There’s something about New Year that provokes a blind optimism which felt promising. Thurston was also reaching 6 months which meant I could start weaning him on to solid foods (this sounds hilarious now, as at 3 1/2, I am still weaning him onto solid foods!). It seemed as though maybe Thurston’s problems were all tied into being a colicky newborn and not agreeing with his formula.

The day I began weaning was the turning point. I knew as soon as he projectile vomited the one spoonful of carefully prepared baby rice that I was in for a battle. Thurston was completely unable to swallow anything more solid than formula. He was referred to a Feeding Specialist Speech Therapist. Then a Paediatrician. Then a Dietician. After that, Thurston didn’t meet any of his milestones anywhere near ‘on time’. He lay on the sofa day after day stroking a label on the end of his pillow. I’m his mum and I knew he wasn’t as he should be. He was then referred to a Physiotherapist. Then an Occupational Therapist. Then a Developmental Paediatrician. Along the way, he was diagnosed with Hypermobility Syndrome, low muscle tone, Gastro-Oesophageal Reflux, allergies (currently standing at dairy, soya, sweetcorn, corn syrup & starch, shea butter, Calpol and broccoli), Febrile convulsions, Glue Ear. However, nothing explained his developmental delay and so we were given a Developmental Assessment.

It took one hour at the assessment for the Paediatric Team to evaluate Thurston. He was instantly diagnosed as having Autism Spectrum Disorder and was classed as severe. Aged 20 months.

I can’t say I had much of a reaction that day. I hurried home to my other children and we all went to Nando’s. We were determined to carry on as normal, despite it now being obvious that nothing was normal. I’m still processing what his diagnosis means almost 2 years later.

We are still trying to be the family we want to be although we definitely have to make some comprimises for Thurston’s benefit. We all look at our iPhones hidden behind cushions so that he doesn’t take over. I stay up all night when he is struggling and watch Cars on repeat. If we are in the car, we list names of TV characters to keep him calm. Louis and Zeke are *never* allowed to choose what is on the TV!! At the cinema, Alex & I take it in turns to walk around the foyer looking at the 20th Century Fox logos on the posters. We won’t stop going to the cinema though, as we want to give Thurston all the experiences that we give our other children. We adapt to Thurston, no matter how ridiculous his latest obsession is!

Hanj