What would I go back and tell myself when my kids received an autism diagnosis

There is no correct way to react to your child receiving an autism diagnosis.  For some parents it can be a shock, others are worried, some are relieved.  It's normal to wonder why or how a child is autistic.  When we were at our first autism diagnosis meeting the first thing the paediatrician said was something like 'it's nothing you did or didn't do, nothing that you did wrong.'  

The wait for an autism diagnosis

Imagine your child reaches three years and still doesn't say a word. They don't point to anything, comment or smile. They sit and repeat patterns of play over and over again and get upset if they are disturbed.   You have some suspicions and after chatting with a health visitor you think... may be my child is autistic?

Dare I think about my autistic son's future?

We are thinking that our son may need a different school.  I imagine all parents consider how to get their kids the best education, whether that's your nearest school, one of your local maintained schools, an independent school, home schooling or something else.  Our boys have additional needs and we consider their education just as important as we do for our daughter.  We want them all to have the best opportunities now so they still have the best opportunities in the future.  But sometimes, that future is blurry, unknown, perhaps even unexpected.

The importance of our south-west London autism diagnosis

It appears we are some of the lucky ones. We live in south-west London and our boys were both diagnosed with ASD by the time they were four years old.  They have both received appropriate support from services, organisations and in their different school settings.

Is it OK to 'choose' a child?

There is no doubt this is going to be an emotive subject.  If we could choose to rule out disabilities in our children, is that something we want to be able to do?

Not everyone chooses to have children. Some people are desperate and have difficulty, some like me get them first time round and some others have no plans for kids and get them anyway. But not many will have sat down and thought, I know, what I've always wanted in my life and what would make it complete would be if we could have an autistic child. Or a child who was blind, had Down's Syndrome or an extreme pain disorder?  What if you could choose not to have a disabled child?

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.

#WonderfulWednesday: Parenting an older child with autism.

This week's wonderful wednesday share is from Debbie Roberts and is called 'Parenting an older child with autism'.  It's about exactly that and an example of the difficulties that come with it.

So why is this my wonderful wednesday share?

I read a lot of stories about children with autism.  Possibly because I myself have younger children on the spectrum I have found many posts about parenting children of a similar age.  I've also read many posts about individuals who were disgnosed as adults.  This post that highlights some of the experiences within the teenage year age group.  I have worried about the future before and we touched on that a bit when I shared 'Will he live on his own?' a little while ago.  The difficulties don't necessarily disappear as children grow up.  Sharing this truth is important and this post does it in a wonderful way.

Like our son, Debbie's son has a great memory, which is good as Debbie says hers is terrible.  This honest post gives me a glimpse into just a few things this mum has had to think about with her son. If you haven't read it yet, go over and have a look.

Links
Our blog - Dear Health Minister: I don't want to lose my son
Our blog - Autism and the mysteries of memories

External
Debs Random Writings - Homepage

#WonderfulWednesday: PDA Awareness Day

This week's wonderful Wednesday share is from Life with ASD and the Rest, and is called 'PDA Awareness Day'.  No prizes for guessing what the post is about!

That's right, in a few days it will be Pathological Demand Avoidance (PDA) Awareness Day.  PDA is a little known and often unrecognised part of the autism spectrum.  It is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control. While we all may feel like we don't want to do things because we feel stressed or anxious, PDA takes this to a whole other level. Children with autism are often thought of as being unimaginative but a child with PDA can be extremely imaginative when it comes to getting out of things as a way of coping with how they feel. 

When our daughter tells a lie so as not to follow a simple instruction, or even further just says hers legs don't work, I think, could this be PDA?  These of course are relatively minor examples and kids with PDA can have meltdowns just like those on the rest of the spectrum.  One of things we do to help our eldest have less meltdowns is to help him limit the demands on himself. It's often the final straw that can tip him over the edge.

So why is this post my wonderful Wednesday share?  Mostly because I like anything that raises awareness of any type of ASD, and this does just that.  It's also because it raises the importance of a correct diagnosis and this can be vital in getting the right help.

If you haven't read about PDA or this post yet, pop over now and take a quick look. 

If you have a PDA post, please add a link in the comments under the image below for others to see.  

Links
Our blog - Final straw on a pile of worries
Our blog - Without an ASD diagnosis, we could not...

External
Life with ASD and the Rest - PDA Awareness Day 15th May
National Autistic Society - What is PDA?

Add your PDA links directly into the 'website' box so they hyperlink.

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The slippery slope of medicating my kids

My boys are not in any physical pain. They are not bleeding, their organs aren't failing, they have no broken bones. They very rarely get colds or flu. But this afternoon, I'm visiting another medical professional seeking more drugs for one of my sons.

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.

#WonderfulWednesday: The one with the A word

My Wonderful Wednesday share this week is from 'Random Thoughts from a Random Woman' called 'The one with the A word' about receiving an autism diagnosis for her son.

It's a common thing to post about, but I'm sharing it for two reasons.  Firstly, it caught my attention because it's less than a week until BBC's 'The A Word' comes out.  We have known both our boys are autistic since before they were four years old but it won't be long until at least one of them is also aware of the A word too. Secondly, and more importantly, there's nothing like this on my blog.

I started blogging quite a few years after our kids diagnoses. I'd come to terms with their condition and most of my blogging is about overcoming challenges, things that help and heart felt achievements.  This post from 'Random Thoughts from a Random Woman' gives a lovely example of what that first period after an autism diagnosis can be like. Every parent and person feels differently about the diagnosis.  Some parents and people may have fought for a diagnosis, waiting months in some cases.  Others are scared of it. Either way, being nervous about it all is completely normal.

We have found having a diagnosis for our kids is very beneficial.  We've been better able to access services for example.  Our boys aren't any different because of the diagnosis.  Indeed, most of all it has helped us understand them and soon it may help them understand themselves.

Links
Our blog - Without an ASD diagnosis we would not...
Our blog - What is there had been an autism screening? Would I still have had my kids?
Our blog - How autism is like the new courtesy car

Favourite Friday: 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 both received appropriate support from services, organisations and their different school settings. But what if we hadn't? Here follows 22 reasons why waiting 22 months for a diagnosis is too long. Read more...

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.

Too much in your inbox? You can get Favourite Fridays instead of our daily posts.  Fill in the subscribe box (opens in a new window).

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.

5 things to know before applying for an EHCP (Education, Health & Care Plan)

I've learned lots whilst getting David in to his specialist unit and getting the support for Anthony, his older brother, via an Education, Health and Care Plan (EHCP).  I'm not a legal or council expert, just a parent whose gone through the process a few times and if you think your child might need extra support, here's a few things worth knowing. This post has been updated, read it here.

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

Art Neuro?

It's been well over six months since I raised the question with our various health professionals. We know our son Anthony has autism but does he also have Attention Deficit Hyperactivity Disorder (ADHD)? So how come it was only today I came across the term neuro-disability.

Anthony has been diagnosed with autism, or autistic spectrum disorder (ASD), since he was three years old.  This confirmed his difficulties in lots of areas such as language, social interaction and also sensory processing.  Both Anthony and his younger brother are sensory seekers and demonstrate sensory seeking behaviours.  They move their bodies an effort to 'feel' right.  Constant spinning, flapping, and in Anthony's case jumping to settle their sensory system. 

At school Anthony leaves his classroom several times a day for movement breaks and as he has grown I've wondered whether his constant moving and lack of interaction could partly be due to also having ADHD.  Many kids with ASD  have comorbid conditions, one's that are likely to co-occur and having both ASD and ADHD is quite common indeed.  Practically if this meant Anthony should be getting different support to help him function at school then I knew I should seek further advice and a diagnosis if needed.

Our appointment with the Neuro Development team was today and could be described as dull at best.  I spent an hour answering the many questions that I've answered before and Anthony sat, tapping, tutting and eventually ended up on the floor. Despite me trying to involve him the conversation, the consultant hardly ever asked Anthony a question about himself.  Anthony was paying absolutely no attention anyway, yet another pointer to his potential ADHD. 

At the end of the appointment the neuro consultant talked a bit about 'neuro stimulus' and Anthony's obvious hyperactivity and said he'd be in touch again in a few days after talking to Anthony's school.  We started on our one hour journey home and after 15 minutes went back past a grand building called the Royal Hospital for Neuro Disability.  It suddenly occurred to me - have our kids had neuro-disabilities this whole time and I've never realised it? 

I don't know why but it doesn't feel like this is the right term to describe them.  NHS England defines Neurodisability is an umbrella term for conditions associated with impairment involving the nervous system.  The basic element of the nervous system is the nerve cell, or neuron.  There are billions of neurons in the brain and this along with the spinal cord forms the two main structures of the nervous system.

NHS England goes on to say that this includes conditions such as cerebral palsy, autism and epilepsy.  Other organisations seem to list different conditions.  I've not been able to find a definite list, but NHS England would say our son's have neuro-disabilities. I've always described Jane their younger sister as neuro-typical and  I've always been happy to describe my boys as having a disability but it seems weird somehow to say they have a 'brain' disability. Clinically, I guess it's true, their brains function differently. 

Obviously I'm not a neuro expert and I think I'll probably not be able to stop myself investigating this more. Most recently I came across the term neurodiversity from Steve Silberman's book 'Neurotribes'. Neurodiversity is an approach to learning and disability that suggests that diverse neurological conditions appear as a result of normal variations in the human genome and presents the idea that neurological differences should be recognised and respected as a social category on a par with gender, ethnicity and sexual orientation. Perhaps it is because I heard the term neurodiversity first that I find neuro-disability strange.  

Whether officially my boys are neuro-disabled or neuro-diverse, I guess all that matters is that my son's get the support they need.  That they are given the opportunity to reach their full potential and to lead their lives in the way they wish.  And so I'll wait to hear from the neuro development team as to whether Anthony needs an ADHD diagnosis and what we can do to continue to support him.  

Links
Our Blog - Hyper what else? (Co-morbid conditions)

External Links
NAS - Sensory
Neurotribes - Steve Silberman's website

Autism, facts and absolutes?

Yesterday was the 1st of December, and according to Anthony, who has autism, this meant it was now definitely 'Winter', he had to open a chocolate advent calendar and all the trees were dead.

Why sharing shortbread is truly amazing

Have you seen the episode of 'Friends' where Joey doesn't share food? Joey is going on a second dinner date with a pretty lady and orders an extra portion of fries 'for sharing'. He has adopted this as his strategy to avoid sharing his dinner with his date. If course it all goes wrong as it always does in sitcoms. Joey not only knocks his dinner on the floor, his system backfires when he wants to eat the dessert ordered by his date. Our son David has a strategy that's far less complicated. Try to take food away from David and he might attempt to scratch your cheeks off. That's why I nearly fell over when he handed a shortbread stick to his little sister the other day.

David was diagnosed with autism a bit earlier than his older brother. Possibly this is because we were familiar with some of the signs but looking back I had a gut feeling that David was going to be more affected than his older sibling. All kids find sharing difficult sometimes but just how do you explain sharing to a child who doesn't listen when you talk and has fundamental difficulties in seeing things from another persons point if view. Even more than that and as the Theory of Mind suggests, David may actually expect others to see things from his point if view.

This can be part of the reason children with autism see little point in communicating. David would just go and stand by the biscuit cupboard as he simply expected me to know he wanted a biscuit. After a while, if I didn't manage to guess that he wanted a biscuit then he'd start to get upset. This was particularly the case with things like biscuits or iPads. These are high value items for David. A high value item isn't dependent on financial cost but how much David wants them. These are also items he finds difficult to give up. The only real way to help him learn to cope with going without something is to practice giving it up. Start slowly by offering another high value item in exchange. Then move to switching for a lower value item, like switching a biscuit for an apple. Finally offer help giving up the high value item for nothing, we use a countdown strategy to give David time to deal with loosing what he wants.

We and the school have also recently been working with David in his ability to follow instructions. This has followed something similar to an ABA (Applied Behaviour Analysis) type activity where David has been rewarded immediately when he follows an instruction. Then he is rewarded after following two instructions, then five and then any given number so that he doesn't expect a reward after completing a specific number of requests. I think this work combined with David's greater ability to give up high value items came together when he decided to share his shortbread with his sister.

David had just asked for shortbread by combining the Makaton signs for biscuit and stick. Having retrieved the box of shortbread from the cupboard, Jane his younger sister declared she also wanted one. David had two shortbreads. I asked David to give one to Jane and used the sign for 'share'. I fully expecting him to either ignore me or understand what I was asking and therefore run away or cheat and give his sister a new one out of the box.

But he didn't. He shared his shortbread, straight away without fuss or tears. I could barely believe it. And I reminded myself that if I don't constantly help David to use the skills he learns he won't use them and I won't get the opportunity to be amazed when he does something like sharing shortbread.

Links
Our blog - Theory of Mind, double rainbow and breakfast
Our blog - Conversing about broken gingerbread men (ABA)

As listed on:

How autism is like the new courtesy car

Having a car is essential for us. Despite living in a place with great public transport links, the reality of living with three very different autistic and neurotypical kids is that we can't operate without a car. We have three school drops and medical appointments to get to. And our son David finds travelling on a bus very stressful. We can't afford to be without the car and so we get it serviced and MOT'ed annually at the local dealership which provides us with a courtesy car. It's been the same courtesy car for years. But this year it was different.

"It's a Lupo instead of a Juke," the nice lady at the counter said. It's still a car I thought, and there's something nice about driving a shiny new car. I got the keys and went to switch the barrage of things from our car into this new bright orange Lupo. Except, the Lupo is a much smaller car than we are used to and smaller than the Juke we were expecting. My life didn't really seem to fit into it. For a start it's a four seater not a five seater like the Juke I usually get allocated. This meant every seat apart from the driver seat had a car seat in it. My hubby would not be getting a lift to the train staton, he'd have to walk while we had this car. I had to dismantle to buggy beyond all recognition to fit it in and there was no way to adjust the seat so I couldn't really see the front of the car like I could in the Juke. This meant I crawled around everywhere for fear of damaging the vehicle.

It operated differently to the Juke too. It had this strange auto/manual combo gear box. Flick it the wrong way without noticing and I'd be screeching along stuck in 2nd gear without noticing. There were no parking sensors, but a weird distance thing. So, despite being much smaller than the Juke I felt uncertain about backing out and so went to put the window down to ask one if the guys at the garage to guide me out. But, I couldn't get the window down. I spent a few minutes playing with a switch and eventually worked out I was adjusting the side mirrors. There was in fact a wind down handle right beside me that I hadn't even registered. Thankfully, I was only going to have the car for about four hours.

After I drove it home, I arranged to take my mum and daughter down to the supermarket. I had just about got used to the new gear box but was most relieved to find a parent and child parking space as the idea of parking this unfamiliar car filled me with dread.

Once we'd got a few bits at the shop we returned to carpark. It had got colder and had started to rain. I was glad I had remembered to get the keys out to open the door (the other car had a keyless entry). I popped the car into reverse relatively easily this time and was pleased to see that the back windscreen wiper came on automatically. That's nifty I thought.

An hour or so after we got back home I had a call from the garage to come and get my own car. This was handy as I'd be able to pick up our car before the afternoon school run. I was now fairly comfortable with general operations of the Lupo but driving through the school run and fighting for an on street parking space in the new car still made me nervous.

As I was driving back to the dealership I thought this courtesy car was quite cute really. Different to what I thought I was going to have but it had some nice features too. Even that odd colour choice of orange was growing on me.. a little. It occurred to me how in a sort of way this little courtesy car was not unlike the little boys we had who were diagnosed with autism.

Our lives and society in general was not set up for our beautiful new sons. They didn't fit into the standard or normal settings without (in some cases) big adjustments. All those parenting books were completely useless because our sons simply don't operate in the same way as neurotypical kids. What seems completely obvious to them is a mystery to me and sometimes vice-versa. I'm apprehensive about doing anything different or new with them. It's taken a while to get used to how they work but along the way I've found out that they are really special in ways I didn't expect.

In fact despite always being on edge and not being what I expected, I treasure their differences even though others think what they do is odd. Maybe next time I'll be faster to see the best things in a new courtesy car. Though I expect it'll still take a while to get used to.

See what happened a year later - when autism was still like a courtesy car, it'll make you smile.