Dear Fortnite, please bring back Playground Mode

Dear Fortnite,

Please bring back Playground Mode in the next update - it makes the game accessible for my autistic son.

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.

I don't want another additional needs child

I don't want another additional needs child. Are you horrified?  I would have been.

"Do you think we should have another?"

"I don't know."

"If we had another like Jane, then maybe.  But what if they were like Anthony... or David...or had greater difficulties?"

"I just don't know if we would could cope?"

"Me neither."

And here is no way to know if our next child could have difficulties until they did.  There is currently some agreement that autism is likely genetic but there is no medical type blood test or otherwise to see if your child has autism.  Autism is a diagnosis decided by a panel who look sat your child's difficulties and discuss whether these represent a triad of impairments that warrant an autism diagnosis.  There is no Non-Invasive Prenatal Testing (NIPT) for autism, although there may be one day.  Even if there was, whatever your view, I don't think I personally could choose between a baby with difficulties and a baby without.  This means, if we don't think we could cope with another child with autism or any other disabilities then the safest option is to not have anymore kids.

So that was it.   No more kids.  And despite my husband and I having a complete understanding of each other here (notice I've not even said who said what above) and being in agreement, I've felt a bit disappointed with this decision since.  I've always advocated that some of our children are 'different not less', but this whole situation felt like it was counteractive to my long standing belief. 

When Anthony was diagnosed with autism, there was very little said by the professionals on what to do next.   By the time David was diagnosed, we'd had a much better understanding of Anthony's autism and it's been fascinating to see how the condition differs in our beautiful boys.  Jane loves both her brothers and as they've growth we've also added ADHD and hypermobility to the list of things to think about on a daily basis.   It is true, there is a lack of autism awareness and no one will understand our autistic children like we do.  In many ways this means they miss out. As a family we are not put off by these challenges.  The boys have a variety of conditions but Anthony was still followed by David and then by Jane.  So if their difficulties didn't stop us then.. what's changed?

Having children or not, how many and when is all very personal.  Some people have large families, some wish for families and have difficulty having them.. some people have no desire for kids and end up with them anyway.  There is no right or wrong way, only what's right for you.  What could cause confusion or regret is the pressure to do something, society says or fear brought about by a lack of information.  But the only pressure my partner and I have is that which we put on ourselves.  We want to be good parents, and sometimes that means drawing a line with what we can cope with or what we think is best for our family.

Like many parents, bringing up our children may be the greatest achievement of my life. Yes, some of it has been difficult, but it's also been filled with immense joy.  The day Anthony was in a swimming gala, the day David first signed for a hug, the day of Jane's first Christmas show.  But all of them and the rest of our experiences make our family the fantastic entity it is.   I was feeling sad with our decision because I wouldn't be able to accompany another child through their life and experience these things again.  Worse, I felt it was my fault for concluding that we wouldn't cope.. and that's what had changed.

I've had experience of raising kids with autism, and ADHD and Hypermobility for that matter.  I know some days are difficult but I also know some days are filled with the kind of joy that makes you think your heart is going to burst.  Recently Autism has been highlighted through mainstream via media such as the BBC series, The A Word and last week there was a parliamentary debate in the House of Commons on Autism awareness.  It highlighted a general lack of understanding autism, not only from the everyday population, but health professionals and those in education. 

Like it or not therefore, having autism in the family can be a challenge.  My three kids could already be going to three different schools to meet their individual needs.  We have difficulty going out to some places because it's a two adults to three kids ratio and all the kids needs watching. Nevermind whether we can talk the dog with us or not.    I spent three hours on the phone the other day trying to find out why no-one was prepared to refer our son for the tests that everyone agreed he needed. Sometimes as a couple we feel we are spread to thin.

It was in the collapse on the sofa last night from what turned out to be a day of dramas that I turned things around in my head. 

My husband announced, "Chelsea have scored!"

"Great.." I said (nonchalantly rolling eyes)

I've little understanding for the following of football when you have no 'team' like my other half.  What difference does Chelsea scoring make to my life.... absolutely nothing.  Or so I thought.

Turns out that Chelsea scoring meant there was a lot of very happy people in Leicester.  A team that was nearly relegated last season has beaten the odds to come top of the league.  'History is being made' said the TV.  Apparently Leicester are the first new champions of the something cup in 38 years.  When I said they'd beaten the odds, I've been led to believe that you could have got 5000:1 on the chance that Leicester would have won the cup at the beginning of the season.  'Anything's possible...things can change," said the TV.

That's right I thought. Things can change.  Just because we sometimes feel spread a bit thin now doesn't mean we always will.  David may end up talking, Anthony may get his anxiety under control, Jane may ...well anything and you never know the dog may stop trying to escape the garden.

Just because we don't feel we can cope with another child now doesn't mean that I'm failing.  The time might come when we do... or maybe not. We may even adopt one of the many kids waiting for adoption who have additional needs.  After all we've got some experience there. Let's not get ahead of ourselves here though.  The point is that suddenly our decision felt better.  The future is not set.

Life changes and you can only go with what you've got at the moment.  It doesn't mean it will stay that way or that it will change how you expect.  My husband and I were not tongue tied at the idea of being tube-tied, neither of us were up for it. I may not be ready to draw the line under 'no more kids ever' right now, and I may or may not be in the future. Perhaps I just need to spend a bit more time here and hope the future will take care of itself.  After all... I've got that phone call to make, that medication to order, the dog to walk and the .........

Links
Our blog - Why I hope I would still have my kids

Autistic Anthony's always to blame, problems on the school run

A quarter of people with autism are non-verbal. They don't talk at all and may use other methods of communication. Our eldest son Anthony can talk well. He attends a regular mainstream school.  But that doesn't mean he's always understood. His honesty and difficulty communicating often means that without someone there who understands him, he is blamed for what's gone wrong.

Such an event happened on our way to school last week. Our school run, like many family's, is a busy one. David goes to a specialist ASD unit but we are lucky that this is located half a mile on the otherside of Anthony's school. This means we drive to David's school and park then Jane goes in buggy and Anthony goes on his scooter while we run this get to Anthony's school on time.  Yes, every single school day we are seen running across a cemetery. The traffic is so bad that it is more consistent to cut through the cemetery, with many other parents, than it is to try and drive and find somewhere else to park. Without the scooter for Anthony, we would be late everyday.

But with the scooter comes an extra hazard. We have practice stopping at roads and missing objects a lot. 

"Stop at the road"

"Look out for the gentleman" 

"Say excuse me"

"Careful by the buggy" 

These things get hollered a lot. 

Anthony has slipped on ice once this year, but on Friday it appeared he'd scootered straight into a little girl walking to his school.  It happened soo fast. My view was blocked for a second as we past a tree and then suddenly the little was on the floor and Anthony was stood their apologising. "I'm sorry," he said. "I couldn't get past. I hit her."

The girl was probably about five or six.  She was very upset, there was a lot of tears.  The girl's mother was giving her lots of hugs and said that these things happen. She even said for us to go so as there was no need for us both to be late for school. I think mostly the girl was just a bit surprised, but it looked like she'd hurt her hand and bumped her knee as she had fallen. I couldn't help feel guilty. I should have been closer, I should have shouted more warnings to Anthony. 

Then by the time I'd dropped Anthony to his class and talked to him and Jane, who was still in buggy, about being careful, I felt guilty in a different way.

I saw some great quotes on Twitter from The National Autistic Society and the AutismCon on Saturday.   According to a speaker, 99% of public say they have some understanding of autism but 84% of autistic people feel they are not understood. 

By the time Anthony had got to school I had determined by some answers from him (but mostly by conversing with Jane who is nearly three in comparison), that the little girl had infact stepped in front of Anthony and thrown her hand out to the side to point at something. Anthony had been passing but still hit her hand.

Despite the mum having said that these things happen I still felt like I should have defended him in some way. I felt guilty for almost assuming he was to blame.  I wanted to bump into the lady on the way back to our car, though what would I have said? "Excuse me, actually it wasn't only my son's fault that your daughter got hurt?"  Of course not, because I think the same, these things happen.

Anyone when they are in a stressful environment or hurt can have difficulties communicating. People whose first language is not English but can converse in it perfectly well can have difficulty and revert to their native tongue when stressed or in pain.  It's the same for lots of kids. My son will revert back to basic communication. "I hit her." He absolutely did hit her hand. "I couldn't get past." Well, no, neither would I if a hand was suddenly thrust into my path. "I'm sorry." Of course, no one wants anyone else to be hurt. 

I guess mostly I'm just aware that one day, these difficulties might have more serious repercussions. He's not going to grow of autism. What if he was asked to make an instant police report or appear in court? What if he was involved in a car accident? And this brings up the other point I saw from AutismCon. John Wilson said, "How do you communicate you are different if you have challenges with communication?"

This is undoubtedly something my boys and countless other autistic people face. And we will have to figure out how to help them with this.  He can learn. In the meantime, I can be proud that Anthony was very truthful about his actions, he didn't try and hide from what had happened. I can be proud that he was concerned for the little girl that was hurt. I can be pleased that his sister was there to help clarify what has happened. And I can try harder to keep up with him, so I'm right there if something happens. 

How do your kids handle confrontation or stressful situations? 

Links

Our blog - Our terribly truthful child

Our blog - Anthony's first experience of guilt

Our blog - Autism and the misunderstandings of empathy

External links

National Autistic Society (NAS) - Conferences

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Favourite Friday: Dear Health Minister, Please I don't want to lose my son

I have this secret fear.  It sits way in the back of my mind and only comes out when I hear things that make me shake.... and then I think, please, I don't want to lose my son.

It smacked me on the face when I was listening to Radio 5 Live on Monday. I was listening to a mother who is desperate to be part of the team that looks after her son with learning disabilities. Despite her borough doing everything it can, there is a shortage of facilities and services so her son is miles away in a care facility.  A facility that she has since discovered has abused him.

As I'm listening I feel my body temperature rise and it's as if my palms have been instantly covered in sweat.  Please, don't let this be the future for my son. Read the rest of this story on the original post.

On 'Favourite Fridays', Rainbowsaretoobeautiful publishes its most popular post from the previous week. If you missed it, then here's your chance to catch up.

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To the boy who showed interest in my son's special interest

This post has been featured on The Mighty Site.

You wrote him a short note saying you thought karting sounded interesting and could he tell you about it. All we can say is thank you.  Thank you for giving Anthony the opportunity to write. Thank you for providing him with motivation.  Thank you for allowing him to show what he knows.  Thank you for giving him confidence in himself.  Thank you for showing him someone cares about what he thinks.

Silly things you shouldn't do when your kids aren't there

We've been lucky enough to get a night off as a couple. This is no small thing when you have kids with additional needs. Two boys on the autistic spectrum and a toddler are hard work even for the experienced mum, but their grandparents have had training and can definitely cope for the evening.

But when you are only away for the night, it's a break but not one that's long enough to do things like you would without the kids.

It's nearly the end of dinner and here's what I've noticed so far on our night away.

1. I instinctively looked to see what was on CBeebies when I turned on the TV in our room

2. I kept looking for my bag, then remembered I had my wallet and keys in my coat

3. I looked for the special hair washing jug so I didn't get water in my eyes when I washed my hair in the bath

4. When we went for a walk I constantly took my hands out of pockets and then realised there was no hand to hold

5. I got way too excited at the prospect of there being both chicken nuggets and garlic bread available at the buffet bar

OK, some of these things are because the boys are on the autistic spectrum. They have sensory issues, have difficulty with hair washing, are very picky eaters and like to watch the same things on tv, but lots of kids like the same comforts.

What do you end up doing without the kids that you don't need to? 

As on:

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.

Cheery after chess, autism and games

Clubs are a bit hit and miss at school. We've found that after school ones seem to be a bit too much for Anthony. As a boy with ASD, ADHD and hypermobility, the sports ones require too much information processing and a lot of the clubs are sports related. Anthony was until Christmas only enrolled in a lunchtime computer club. 

Last term, all the Year 3 classes started playing chess on a Wednesday afternoon. At first I was a unsure how Anthony would react to chess.  It can seem a bit complicated and requires a lot of focus. However it turned out that rules and systems worked well for him. He totally got chess.  Most of the time he played with his teaching assistants but he started to request it at reward time. So, when the club renewal came round, I enrolled him in the Chess Club. 

He seemed keen and he received a chess set as a present for Christmas. We've had a few games but mostly they have been lessons really as we help Anthony realise what will happen next on the board. He's quite keen on using his queen a lot. He says it's because it's such a strong piece. But then he often looses her early in the game. A few times at home this has ended in tears and I wondered whether Chess Club was going to be a disaster. Mostly I was keen to ensure that he had lost a few times with me so I could see his reaction.  This way I could help him cope with loosing.  

When the day came. Anthony's teaching assistant took him to the club at lunchtime and left after a few minutes. When I collected him from school, she grabbed me before Anthony came to the door to tell me that he'd lost both his games.

My heart sank and I was prepared for the worst, but I needn't have been. He was almost pleased about it. "I'm getting lots of experience of chess and I'm seeing what others do to win." he said. 

My son may not be the king of the Chess Club but he's no pawn either.

Links
Our Blog - Mummification mishaps - autism and dressing up at school

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SEN: Choosing a mainstream school

When your child has special educational needs (SEN) it feels like there is an even greater weight to getting the right school for them. Many children with SEN can attend regular mainstream schools and have their needs met well there. Both our boys have an ASD diagnosis but only one is in a mainstream school.  Our eldest son positively blossoms in this setting. So what can I share about getting him a mainstream school?

Nervous about 'nearly' as school restarts

It takes all kids a while to learn about time. Waiting can be difficult for the best of us. When we leave the kids with carers I use the same language to indicate how long I'm going to be away from them. 'Right back' is in a few minutes, 'soon' is an hour or so and 'later' is pretty much saying I'm going to be away all day.

Finally, excited to see a Christmas show

Yesterday I was at my daughters Christmas show. I have three children and attend all the shows etc that I can, but this is the first time I've attended with nerves of excitement instead of nerves of anxiety or a feeling of indifference. 

It's because despite being only two and a half, Jane was by far the most interested and engaged in the Christmas show possibly because she's the only child without autism in the family. She's only been at nursery for two mornings a week for four weeks. But that hasn't stopped her being a full participant in the Nativity Play. 

Our little 'angel' did all the actions, quietly sang songs, enthusiastically clapped in all the right parts and identified afterwards that she was actually wearing a Cinderella dress but it was ok. She even filled in gaps during the songs which had no actions with a bit of Makaton sign language. Clever girl. As well as that she could actually re-tell the nativity story afterwards. 

There was no fear of clapping, loud noises or the need to make sure everyone else (including the technical staff) were doing their jobs right. There was no excessive fidgeting or lying down. And I knew this would be the case. It's not at all that I'm disappointed when I go to see the boys at their shows. Because they are both on the autistic spectrum, these events are more challenging.  

If you've read my other posts, you'll know that in some ways I'm more over joyed by the boys smaller achievements. Attending their events tend to come with different expectations, more weight and nerves. I guess I'm just lucky to be able to enjoy their achievements and glorious little Cinderella too.

Links

*Baubley Babbles - Our ideas to help us communicate over Christmas posted every school day over the holidays*

Our blog - Watching our son stand in Christmas show

Our blog - The hope I see in the kind acts of children (school performances)

Our blog - Why our chatterbox goes to signing classes

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Anthony's first experience of guilt

If you have read 'Our terribly truthful child' you will know that Anthony is a seven year old boy with autism who has never told a lie, ever. But, that doesn't mean he has never done anything wrong.  And as of last week, it doesn't mean that he's never felt guilty either. 

One of Anthony's special interests, which is nearing an obsession at the moment, is playing a app game called Marvel Champions. Special interests are very common with autism. As Ambitious About Autism say, 'people with autism tend to be more all-or-nothing than most people: something is either absolutely not interesting or absolutely fascinating.' An obsession is a special interest taking over your life or your ability to function due to an inability to stop thinking about or doing your obsession. 

Marvel Champions is just on this border at the moment and it was this game that led to Anthony's first experience of guilt.  Usually Anthony only plays the game when his father is home. This allows some control for us. Sometimes Anthony's father can't be at home because of work or something else and then Anthony is allowed to play the game with certain restrictions. One of these restrictions is that Anthony is not allowed to spend the game tokens without asking his dad. So, if his dad isn't there then Anthony has to wait. 

Last week this proved to difficult and when asked to come down the stairs for dinner Anthony burst into tears. It took me a while to work out that Anthony wasn't crying because he'd accidentally spent his game tokens. He was upset because he was having difficulty reconciling the fact that he had chosen to spend the game tokens despite knowing he shouldn't. 

My son cried for nearly an hour. Then had his swimming lesson and then started crying again. At one point I thought we weren't going to get him to stop crying in order to get into the pool. His whole concern was about how sad and disappointed his dad was going to be. 

It's interesting that Anthony would get so upset by this. He barely blinks when he does some other things that 'disappoint' us like for example hurting his sister, or not trying to do homework. I think it's the first time he's really felt guilty about something. 

I'd tried several strategies and then finally told Anthony a story from when I was a little girl and did something similar and how I felt about the fact that it had upset my parents. Anthony was mesmerised. It culminated in a phone call to my own father to get him to re-tell the story again and explain how my own father had  felt about my 'crime'. 

In many ways I think this shows Anthony maturing. He has always struggled with interpreting his own and others feelings. My heart when out to him. Feeling guilty is awful, but in some way I'm pleased that he's been able to achieve this milestone and that I was allowed to work through it with him. 

Links
Our Blog - Our terribly truthful child
Our Blog - Autism and the misunderstandings of empathy

External links
Ambitious About Autism - Obsessions and Special Interests

Favourite Friday: Anthony's two minute silence 11 Nov 2015

If you've read 'Anthony's always aloud' you'll know that our seven year old son with ASD is always on maximum volume. His whole being is set up to move about and make noise. He is constantly balancing his sensory system and moves about so much he's currently also being assessed for Attention Deficit Hyperactivity Disorder.  This is also in recognition that he has difficulty focussing, listening to instructions and remaining on task. But on Remembrance Sunday he stunned his whole family by coming back from his club with a reward for being the quietest and most respectful during the two minute silence. Read more...

We've introduced 'Favourite Fridays'. Each Friday Rainbowsaretoobeautiful will publish the most popular post from the previous week.  If you missed it, then here's your chance to catch up. 

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Please note this post has been amended to include notes on how to help children on the autistic spectrum cope with world event's following the Paris attacks last week.

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.

Understanding autistic siblings - it's starting with sleep

Many kids with autism have sleeping difficulties.  We've been dealing with them for many years.  In '5 tips to get more sleep when you have autistic kids', it seemed that one of the hardest things to deal with when you have autism in the family is exhaustion. There are many suggestions for helping kids with autism sleep. Sensory aids such as weighted blankets, routine changes or in some cases melatonin supplements.  

Rocky reality: Autism and imagination

We were so pleased when Anthony started using his imagination. It was something we absolutely encouraged. Suddenly Anthony was Tree Fu Tom, Ironman and then Anakin Skywalker. We recently watched the new Star Wars trailer. We watched and waited for the same questions, the questions we've taught Anthony ask so he is able to understand that the movie is not real.

Final straws on a pile of worries

Many kids with ASD have 'triggers' for major meltdowns. Or at least that's the way it seems.  It was long ago that I figured Anthony couldn't possibly have as many 'triggers' as it appeared.  Everyone has days where things seem to be stacked against them and we have a 'what else could possibly go wrong today' feeling. 

Tearful transition turns out ok

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. David has always struggled with transitions.  Sometimes it's easy, sometimes it's difficult and sometimes it's a disaster. This post has been updated, read it here.