Ideas for helping our anxious son

Stress and anxiety are a big part of our home at the moment.  Our eldest has recently identified anxiety as his greatest struggle when trying to get through the day.  As a teenager who was diagnosed with both autism and ADHD by the time he was seven he has often found it difficult to communicate how he is feeling or what's wrong.  It's great that he can do this but it's heart-breaking to hear your child say "I'm scared every moment of every day." 

How will we cope with an Elf on the Shelf

December came and so did a new comment from our youngest, Jane. “Sarah and Julian both have a magical Elf on the Shelf that talks to Father Christmas.” After a few days of  ‘Elf on the Shelf this..’ and ‘Elf on the Shelf that..’ it became apparent that what Jane was really after was an Elf of her own. She even made a video to Santa on my phone that I found late on Monday night. But Elf on the Shelf is a bit difficult in our house.

This post has been updated. Read the post here>>

An amazing England penalty shootout for our autistic son

My husband spent a good deal of the evening, pacing around the hall, unable to watch the TV.  His stomach of nerves was surely replicated across many households in England.

How an idea from Forest Bathing helps us with our worries

I'll be honest, when it was suggested I try out Forest Bathing I pictured a hidden geothermal lagoon. There are a few in the UK and although the physical health benefits of geothermal water are relatively well known, the Forest Bathing I took part in was much more about mental and overall well being that didn’t just apply to me, but also to my kids.

Thank you little girls

Performance has always been difficult for Anthony. The pressure of a spectacle, the potential of failure and the large number of people are a lot to cope with. We've always been very proud of Anthony's effort to participate in his class performances but I've noted that it's not only his increased ability to cope with summer concerts and plays that gives me hope for his future. It's the actions of the other children too.

WonderfulWednesday: #TimetoTalk with @YoungMindsUK

This last week's social media has been buzzing with mental health and has included a great push for Time to Talk Day 2017.  As such it seems fitting that this week's wonderful Wednesday share is via Young Minds, a leading UK charity committed to improving the emotional wellbeing and mental health of children and young people.

Two changes of direction, two write offs

Explaining to someone who doesn't have much knowledge about autism about the impact of a change of schedule on my son is very difficult. When I worked, I used to do lots of events, and one of the parts of this I enjoyed was I always seemed to be able to get over hurdles and unexpected issues well. I had a sort of practical knack not only for what we could do to fix things but also what was important and needed to fixed.

5 ways watching the Olympics is good for my autistic kids

Last week saw the closing ceremony for the Olympics Games 2016 in Rio.  I've been glued to parts of the games, commiserated, applauded and stayed up too late to watch finals. And I'm not the only one.

Investigations to relax about insects

Insects and bugs. I'm not the biggest fan of watching a magnified creepy crawly on the television.  But on the understanding that they are pretty useful for the planet, I don't have an issue with them too much.

Anthony quite likes ants.. why wouldn't he?  As a boy with autism he likes routines, lines, purpose.  Ants have all of these.

Why my autistic son would be a great father

Anthony, our eldest son with autism, used to say that when he grew up, he'd like to be a..  dad.   Possibly also combined with a part time job as a either a dentist or super villain.

It's not a good day to be a worrier.. and I'm a worrier

BBC News - Brexit: What happens now?

I was shocked when I was woken by the news this morning. The UK has voted Leave.

Immediately my head started to spin.. what will this mean?  What will happen next. It's not a good day to be a worrier.. and I'm a worrier.

Different possibilities can be ok

Yesterday's school run was a disaster.  We only just left the house on time but the journey was doomed. Two sets of road works had sprung up over night (seriously) and that added to a delivery truck blocking a single lane road led to one inevitability... we were going to be late.

I'm not really a stickler for being late.  Admittedly, whether I like it or not I'm more a 'just in time' kinda girl. With two boys on the autistic spectrum and a toddler, waiting if you get somewhere too early can be a disaster. But school... it's so important that the boys days start well if they are going to have a good day. Routines really help them to stay calm and feel safe.  Missing the morning routine of name call or 'placing your pear on the tree' could potentially spell disaster.

But every now and again something happens that means we are late.  The day David was sick on the breakfast table.. we were late. The day a bus broke down in the high street, we were late.  And the day two sets of road works sprung up on our route over night.. we would be late.

I'm frustrated. Mentally I've already figured out every alternative route from our current position and know that all I can do is watch the minutes clock by on the car display.  If only Anthony hadn't got an invisible stick in his shoe, if only Jane hadn't moaned and asked for another piece of toast... if only I hadn't had to chase David around the living room for a minute before I could hoist him into the car.

Being late like this used to be terrible. Anthony would become very anxious.  "Are we going to be late... oh no.. it is my fault?"  Obviously it's never actually Anthony's fault because it's my responsibility to get the kids to school but Anthony knows when he has had difficulty focusing and no doing what he supposed to.  He'd panic the whole way there.  The time I needed to change the format of the morning to deliver the children to their prospective schools in reverse order released a small monster in our son David.  He didn't understand why he was being dragged out of the car to the wrong place and had a meltdown outside the school gate.

But yesterday as I sat in the car... going no where I become calm.  Anthony was giggling and singing, "We're going to be laaaate... we're going t'be laaate," which while being tedious and annoying was a great step forward. We have been late more than once and we have recently had to come out of school for various medical appointments.  When this has happened I've explained that it's ok, no one is upset with Anthony and sometimes things are just different.  Anthony has learned it's ok to be late sometimes.  As long as he knows what's happening he is fine with it.  David has also had to accompany Anthony to school for the odd reason and he is now much better at being out of routine.

And while I'm desperate to try and make the near impossible double drop school run every morning in a calm and civilised manner, being late for school is not the terrible drama it once was.

Anthony made it to school on time (just). David was 10 minutes late but class routine hadn't started. Neither were upset.  So maybe not such a terrible start to the day after all.

Links
Our blog - The slightest change is difficult
Our blog - Autistic Anthony's always to blame, problems on the school run

External
National Autistic Society - Routines & obsessions

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Favourite Friday: Its time to tell him

Last week's favourite post had thousands of hits.  For us it answered the question many parents with autistic children have... when is it time to tell them about their themselves?

There are some things you never expect your children to say.

Anthony is crushing his forehead with his hands.  He's making a haunting noise that's a cross between a scream and a growl. And then he said, "Please, kill me, then make me again with a brain that works properly."

Sometimes I wonder if our son is aware of his difficulties.  Anthony has autism, ADHD and a bit of hypermobility and anxiety thrown in for good measure. He knows some things, like he finds it difficult to sit still and has someone help him at the school.  But this was the first time I've been stopped in my tracks by his awareness.

It was over something as simple as copying a sum from a screen onto a piece of paper. Read the rest of the post here.

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up. See all our Favourite Friday's posts here .

It's time to tell him

There are some things you never expect your children to say.

Anthony is crushing his forehead with his hands.  He's making a haunting noise that's a cross between a scream and a growl. And then he said, "Please, kill me, then make me again with a brain that works properly."

Sometimes I wonder if our son is aware of his difficulties.  Anthony has autism, ADHD and a bit of hypermobility and anxiety thrown in for good measure. He knows some things, like he finds it difficult to sit still and has someone help him at the school.  But this was the first time I've been stopped in my tracks by his awareness.

It was over something as simple as copying a sum from a screen onto a piece of paper.

Anthony was converting a picture sum into a column addition. He was doing the sums very well but after a short time started to struggle. His poor motor skills meant he wasn't always lining the numbers up correctly and he started to forget what he needed to do to work the sum out. "Ohhh mum, my brain and fingers are being very naughty," he said.  A few sums later and he was becoming annoyed and upset by his own inabilities.

"Kill me," he screamed.  "Please, kill me, then make me again with a brain that works properly."

Can you imagine?

I felt my heart thump in my chest, like a booming base drum.  Where was the next beat...?.  The world suddenly seemed in slow motion. I felt my eyes widen and glisten as my stomach shivered. Then I couldn't tell where my failing heart ended and my stomach started.  Oh son.  On the outside I held it together, inside I was a mess.

You see, Anthony's brain works differently as part of his autism.  He processes everything differently.  Sometimes this makes things more challenging and sometimes he sees things in a wonderful way that no one else does. Anthony has also been diagnosed with ADHD.  This is an added complication. Not only does his mind work differently, but then he also loses focus, making some tasks even more challenging.

Anthony knows he can copy sums.  He knows he can work out the answers.  He's learned to overcome difficulties with sensory input and seeing things differently.... and then his mind fails him again with concentration.  Please, give my kid a break, I thought.

Of course I hugged him, helped him focus and worked him through the sum.  I said he had done his sums very well and he could finish. No more homework for him tonight.  I was relieved, to say the least, when he told me he didn't want to die.  That he was just frustrated and being a literal thinker he was pretty sure the only way to get a new brain was to die first, and he didn't want that.  Perhaps I'll talk to him about neurosurgery later...much later.

We've always been in agreement that Anthony should know about his autism, ADHD etc when it seems right.  And we are now on the edge of labelling Anthony's conditions for him. He knows he has hypermobility. When the physiotherapist gave him exercises to do it made sense to tell him.  He says his knees are being silly. Perhaps it's no surprise that he thinks his brain is malfunctioning and being 'naughty'.  He has commented before that his brain is not doing as he asks.

I know we'll highlight all the good things about him.  It's not going to be a brand new thing, we've been drip feeding him the idea for a while. But I'm still extremely nervous.  I feel that thump... thump in my chest again just thinking about it.   Anthony's unexpected outburst means it's time for us to do what we've been expecting.  However he reacts, we'll be there to support him.  But it is time to tell him. It's time he had the opportunity to understand himself.

If you have stories about telling someone you love about a condition they have..please feel free to share your link.  Email me if you don't wish to use the comments box and I'll add your link for you.

Without an ASD diagnosis, we would not

It appears we are some of the lucky ones. Our boys were both diagnosed with ASD by the time they were four years old and they both received appropriate support from services, organisations and in their different school settings.

I don't know how you do it - from a mum of autistic and neurotypical kids

"I don't know how you do it." It's a phrase I've heard so many times.

Often it's preceded by "with respect". It's hard to know whether it's a compliment or a criticism. Do I look such a mess that it seems I'm only just coping? Or are people suggesting that they wouldn't want my kids?

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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Disastrous at decision making

A report released today by the Kings Fund reports that mental health patients are at risk due to budget cuts. I've been listening to Radio 5 Live about it. It occurs to me that many people may not know that quite a few mental health conditions are comorbid with autism - that is that they are common occurring conditions.