The security of a bedtime routine

Routines.  They keep our home ticking over. We've been following the same routines to get ourselves out the door ready for school for years.  Whenever there was a change needed, we've given time for the routine to change, notice of it happening and sometimes, we even did trial runs.  And it's exactly the same for getting the kids to bed.

Tips for restarting a self-care routine

As a parent and someone who likely has a very busy schedule, I nearly always put my wellness on the backburner lately. If this is your situation then it may be time to re-evaluate and try a new approach.

Dealing with the stress of being stuck at home

The latest government advice recommends a minimum of three weeks of social distancing and self-isolation to tackle the Coronavirus COVID-19 spread. Many families have had to change how they operate - and in a home like ours where routine is king, it can make us stressed and anxious. 

Routines seem to benefit us all

Our recent realisation into how important routine is for David affected more than I thought.  There's something about seeing your child in an autistic meltdown that is like nothing else.  It's devastating. Routines make David feel safe.  And looking at this incident I realised that as much as I like the idea of spontaneity, much of our lives are now routine driven - and that's not necessarily a bad thing.

Supporting independence in the morning routine

Mornings in our home are a sort of regimented chaos.  Three kids who all require some form of supervision, two schools to get to and all their gear. Although my kids may seem old enough to be doing a lot of the morning routine themselves, they have a few challenges

Our mummification mishaps - autism and dressing up at school

Anthony's school topic of this term has been the Ancient Egyptians. Anthony's class have been busy writing about pyramids, discussing Pharaohs and making paper mâché mummies. The highlight was a dress as an Egyptian day and workshop yesterday. Or at least, I think it was.

Anthony is seven years old so has got used to the idea of going to school sometimes in either his 'normal clothes' or something else. As a child with autism we initially took a lot of time to prepare him for a change in his routine like coming to school in different clothes. Now we can give Anthony a days notice that it's a 'special' day at school when he can wear 'normal clothes' or a costume. Anymore than a days notice and Anthony can end up focussed on this change to his routine instead of the activities of the day.  It's probably a bit like the distraction that can be caused by knowing you have a test coming up. 

We used to ask Anthony what he'd like to dress up as.  We've come to realise that this often adds pressure to the day. Anthony finds making decisions very difficult so we'll make suggestions. This relieves some of the pressure and unpredictability in the outcome for him.  More often than not Anthony would be glad of the suggestion and this is what I had expected for Ancient Egyptian day.

During the explanation of Egyptian Day on the way home from school the night before, Anthony suddenly declared he'd like to go as mummy. I was delighted that he had expressed an opinion. However, it meant I'd have a come up with a mummy costume. Usually we'd try out Anthony's costume to give him time to adjust and know what to expect. So, I got out clothes I thought I could adapt and showed them to Anthony and let him know I'd add bandages to them for the morning. I spent a good chunk of the night sewing white ribbons onto clothes. 

In the morning everything went as normal until it was time for Anthony to get dressed. His face dropped, he looked hot and his eyes became all glazed. "There aren't enough bandages on the trousers mum," he said. 

The morning routine is fairly regimented. The routine is consistent and avoids down time distractions so there isn't a lot of time for things like fixing fancy dress costumes. As I looked at Anthony I could see the panic on his face. His costume was not what he expected. It's not the same as Jane being disappointed that her snack is a banana instead of an apple like she'd wanted.  It's a completely different level. It's like a fear of things not being right. Sometimes we can help Anthony deal with this fear but looking at him I could tell this wasn't the best course of action. As part of his routine, Anthony gets dressed before breakfast so has to have his breakfast fully clothed on school days.  Given this, I told Anthony I'd fix his trousers after he'd eaten. As Anthony made his way to the breakfast table he calmed down "Thanks mum, 10 bandages would be enough."

Time was of the essence.  Obviously I'd run out if white ribbon, and the actual bandages from the medicine box were useless. As I began just trawling through washing for a clue I remembered we'd recently torn up an old white work shirt for cleaning cloths. Three safety pins later and Anthony was back on course again.  He was very excited and extremely bouncy.  It would have been easy to assume that this indicated he was all set for the day but I know different.  His excitement and bounciness could indeed be part joy at the fun that was lined up for the day.  However, I suspect he was also coping with the nerves and anxiety at the differences it would mean. 

We are really delighted that Anthony can take part in these activities at school.  Every time he copes with something new or a change to his routine is a chance for him to develop and use strategies to cope with it.  This type of skill could really help him when he gets older and allow him to be independent. Anthony seemed thrilled after school. He wanted to keep his costume on all evening and we had to get changed back into it even after his swimming lesson.

As for decision making, we are still working on that.  We have an appointment next week with some professionals to help Anthony with strategies to make decisions himself.  Despite his apparent keenness on his mummy costume, Anthony collapsed this morning because he changed his mind saying he wished he gone into school as a Pharaoh and not a mummy.  As he was still coping with yesterday, it's just as well we have that regimented morning routine to keep him focused.

Links
Our Blog - Disastrous at decision-making

External Links
NAS - Routines and  change

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The A Word so far; my top five explanations

Have you watched any of The A Word yet?  I'd love it if you did. If you don't have autism in your family you may have wondered what's going on at various points in the last two weeks of the show. As tonight we approach the half way point of the series (I think), I thought I'd throw together my top explanations for what Joe's been up to in the series, as identified not by an expert, just by me and my experiences with our autistic and neurotypical kids.

Building active routines for our autistic and ADHD family

 If you ask me how I feel, most of the time I will reply with 'not bad' or if I'm feeling a bit open 'a bit tired'. I love our family but keeping up with everything and supporting everyone is sometimes exhausting. It's not that I'm physically running around, but I'll work, sort out therapies, deal with meltdowns and spend maybe 2 hours in a car dropping and collecting from schools or respite on a typical day.

Helping my son to focus on what he is doing

There is sometimes a misconception that kids with ADHD can't focus on anything.  With our lad at least, this isn't always the case. Anthony can actually super focus on some things of his choosing. Often his biggest challenge is being able to focus on the task at hand, on what he should be doing especially if it's something he's not interested in.

Tips for kids that struggle to sleep

None of our children sleep great. Estimates say between 50% and 90% of autistic people have some sleeping difficulties, whether that's going to sleep, staying asleep or sleeping at the wrong time. We've had it all. Over the years we've seen a few specialists and received lots of advice for our boys who have ASD and ADHD. Though it didn't all work for us, there's lots that can be tried to help children many children feel calm, safe and ready for sleep.

AutismParenting: Never underestimate the value of routine

Everything in life has an intrinsic value.   Some things are more important to some of us than others. Some value family, some health, some money. My six year old autistic son values routine.  Routines keep him safe.  Routines ensure things happen right.  Sometimes I'm blown away by the impact a tiny change can have.

Identifying normal repetitive play

I have been watching Jane repeat the same play sequence whenever she is presented with a tea set.  Jane has two older brothers with autism so she is more likely to be on the autistic spectrum than another little girl who has no autism in the family.  I'm watching to see if this play might indicate that she has a lack of social imagination. 

Difficulty with social imagination is one of the 'triad' of impairments that leads to an autism diagnosis. Our social imagination lets us understand and predict what other people are going to do or how an unfamiliar situation may turn out. Some children with autism find imaginative play very difficult and others can use their imagination but because they find guessing the next step in a social situation difficult, they prefer to act out the same scenes each time.  

However, children also learn through repetition. Practising new words and skills is part of being a toddler and should be typical as Jane is nearly two and a half years old.

Jane has been repeating a game we have shown her about making a cup of tea.  Pouring the tea from a teapot into a cup and bringing it to an adult. She then asks them to drink it, asks if they are finished and then takes the cup away.  Here are some things I've noticed and engaged in that indicates to me this might be normal play.

Jane's routine is usually functional, which means things can be used for what they are.  However, Jane can also use substitution in this routine.  This means if presented with a tea set without a teapot and presented with another object, for example a jug or bowl, Jane is happy to pretend this is the teapot.  If there are no substitutions, Jane can also pretend she is holding a teapot, and this is using her imagination too.  Beyond, this Jane was quite happy to bring me a coffee instead and when I said I was hungry, she offered me a piece of cake. This shows she can cope with, think about and engage in changes to the play sequence. To my delight this was cooked in an imaginary microwave in the bookcase.  And as I'm handed my cake, it's obvious that Jane is having fun. A few minutes later she's left the activity and come to watch the television.

However, I could be concerned if Jane appeared anxious or extremely focused during the tea routine.  I would note if she was upset by changing it or unable to have intervention in the play. I'd also be concerned if Jane was unable to finish her routine without getting upset or persisted in only playing with this set, whether she was enjoying it or not.  I can also look for a specific type of repetitive behaviour called 'stimming' which tends to be a sensory adjustment.

Repetitive behaviours, obsessions and routines can limit a child's participation in other activities, cause stress or anxiety.  However they can also lead to enjoying special interests or help someone stay calm or cope with a situation like David does. I'm likely to continue to monitor Jane's progress with watchful eyes.  For now, it looks like I'll be enjoying imaginary cake.

External links
Ambitious About Autism - Repetitive behaviours and stimming
NAS - About autism

The difficulties of sleeping alone

When my partner is out or away I'm not very good at going to bed. The children tend to go to bed a bit later.  I have a bizarre dinner like cereal, or baked beans with cheese on them - if I haven't already eaten with the kids at their meal time. I watch movies - more than one.  And I got to bed very late... when I'm tired so when I get into bed I fall straight asleep.

Helping our autistic son with exam stress

A recent report into anxiety and depression in people under the age of 18 showed that 7 in 10 (69%) are very worried about school work and exams and 2 in 3 (66%) were worried about their future. As the top two worries of young people, according to Wysa, many young people will be feeling anxious and stressed now more than any other time in their lives so far. Anthony is in the middle of his Year 11 exams, so what can we and he, do to help?

Favourite Friday: The joy of his acceptance

You never know what's going to bring that massive grin to your face.  You know the one I mean, the one you can't stop even when you try, where you think if you don't stop your cheeks might squash your eyes closed.   The best one's are those that catch you unawares.  That's exactly what happened to me this morning.

Like most families that have autism in them, the morning routine is fairly fixed.  The routine gives the kids the stability they need to start the day and helps us get out of the house.  Today though there was a slight adjustment to the routine.  It was the first day that Anthony would be taking his ADHD meds. 

Getting my autistic kids to be comfortable with face masks

A few months ago I wrote a post about how I talk to my young children about the coronavirus COVID-19 and how do I keep them safe?  It has sparked a few responses particularly as, like myself, many of our readers have children with autism, comorbid conditions or other disabilities and might not be able to wear one. 

My boy was afraid of his own mummy costume

It seems we've had several occasions for dressing up recently.  School theme days, assemblies and the odd party has meant pulling out the sewing kit or creating paper mâché masks.  On this occasion Anthony dressed as an Egyptian Mummy.  But not after some commotion that reminds me he's still a vulnerable young lad.

Taking our autistic kids on long journeys

It's half term and, in the chaos that is my after school pick up routine, there were lots of cars loaded ready to go on a short staycation visit.  Some families are taking advantage of their ability to go away while they have the chance at the moment.  Our kids are used to going on long road journeys in the UK - my folks live on the north coast of Scotland - literally the other end of the country.  They are happy with driving and flying and all else involved like getting through the airport. But not all kids travel well, and if it's something new then some autistic kids like mine can need some extra support. 

My joy of his acceptance

You never know what's going to bring that massive grin to your face.  You know the one I mean, the one you can't stop even when you try, where you think if you don't stop your cheeks might squash your eyes closed.   The best one's are those that catch you unawares.  That's exactly what happened to me this morning.

5 tips for parents of recently diagnosed autistic children

When we were told that our first child was diagnosed with autism, we were handed a small bifold leaflet for the National Autistic Society and another for a local organisation that supported parents of children with disabilities. We were referred to Speech and Language and Occupational Therapy but that took a while to start and I didn't know much about what to do to help our son.  Before the kids were born I had a newborn checklist but there wasn't anything to help with what to do following their autism diagnosis.  Here's what I thought could go on such a list.