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


6 thoughts on “The Dreaded “R” Word

  1. I always admire mums who can manage without a routine, maybe it’s because I used to be a teacher pre-baby so I am used to running to a timetable! But doubly so for a child with autism, good on you for finding ways to help Thurston cope when he is out of his comfort zone, you are enabling him and the rest of your family to have amazing experiences and a rich and full life.

  2. Oh those Bazza island frolics, happy happy days. I’m so glad you both took the decision you did, we’ve had so many great days out. Lovely treasured memories xxxx

    1. Had a rather nice outing today in fact, took thurston to the turner centre and he gave me some remarkable insights into the turner paintings “cloud” “hothothot”! Then had an amazing falafel burger outside the greedy cow deli! Wish u could’ve come. We must go there together soon!

  3. Wow what an amazing read, heartwarming funny and honest! You sound like a real team and a loving family who take the good with the bad in equal measures but always seem very positive and as parents, individuals and a couple being positive is a gift! Cherish that always as that is what keeps you strong -beautiful blog who needs a strict routine when you have such perfect children!! Keep doing what your doing xx

    1. Me too alice, it’s been a long time!! I’d love to write a book, no idea how to go about it though! Thanks for all your lovely comments! Xxx

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