I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

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The Reasons I Don’t Like People (Thoughts from an autistic 9 year old)

Some people like lots of friends and team sports and doing lots of activities with others. I am not like that at all.

I quite like my own company. I don’t really like people at all to be honest.

I don’t like little babies. They make me felt helpless when they cry. When people cry it makes me feel very sad too and I want to cry so I want to stop them crying but they can’t tell me what they want so I can’t stop feeling sad. I also worry they might be sick. I hate sick. It makes me feel sick too. So I don’t like babies much, except maybe when they are sleeping or smiling or laughing but just a little bit.

I don’t like toddlers. They don’t understand personal space at all! They touch things that aren’t theirs and move things. They put things in their mouths and wander about and I can’t even cope with that. They don’t wait their turn, they try and do things that are dangerous and they throw tantrums when you say no. So I basically don’t like toddlers much. Plus they are still fragile and babies really but walk about like they are the boss which is so confusing! They look cute and makeup words but it doesn’t make up for the other stuff so I’m not a fan of toddlers at all.

I don’t like nursery kids or those who have just started school much either. They look at me like I am clever and follow me and copy me and I hate that! I hate being looked at. I hate other kids watching me. It’s like they think I am God or something. Just do your own thing please and leave me be. No you can’t play with me and no I don’t want to show you what I have. Just find other friends or go away. Don’t play football near me either or in parks. Balls are so dangerous in parks! See that age is so annoying!

I don’t like children my own age or a little older. The problem with that age is they notice my differences. They notice my brothers differences too and laugh at him. Thats so wrong and makes me cry.That’s all I want to say about that.

I don’t like teenagers. They don’t follow rules like they climb up slides you should slide down and show off to friends. They say naughty words and laugh at me and that is wrong. I can’t work them out much either as some times they can be really moody and grumpy and other times nice. Just be the same all the time please. Be the nice one actually.

Adults are not good too. They think they can boss children even when they are not my mum or dad. They shout, change rules, move things, walk over my stuff and sit beside me. They interrupt, have phones that they talk to all the time when I need them and forget my routines. It’s like they forget children even exist sometimes.

Old people are even worse. They talk when I am talking, touch me when I don’t want touched and ask me things that are personal like ‘awwww how old are you then?’ I mean what does it matter how old I am it’s not like you are buying me a birthday card is it?’ Plus they never have a clue about what I like and then just say ‘when I was your age…’ I hear that enough from my dad as it is! I know the world was black and white and flat and there used to not be iPads. I even learnt about Vikings and Romans at school but I live now so that’s what matters to me.

Another reasons I don’t like people is the fact we have people rules but it’s like everyone just forgets them. Isn’t there meant to be rules about who goes first? Some people just forget that queue rule all the time. Then there’s the talking rule thing. Mum says don’t speak to strangers but strangers speak to me when I am a stranger to them so they break the rule! Then I get told off for not replying…ahem…they broke the stranger people rule first not me! Then there’s the truth rule. Aren’t people meant to tell the truth? Even children break that one sometimes and I am like what? That didn’t happen like that why are you making that up? Remember imagination and make believe are for stories people not real life. Tell the truth. That’s the rule.

There is so many rules I wish people lived by that would maybe make me like them more. I’m just going to tell you them because this is my story and the rules say I can say what I want in my own story. So:

Give me space

Give me time

Give me peace

Don’t touch my things

Let me finish talking, writing, watching, listening or whatever else first before interrupting me.

Never laugh at me

Don’t stare at me, copy me or point at me

Don’t touch me

Don’t hurt me

Just let me be me and I’ll let you be you.

Then it doesn’t matter if I don’t like people because we can just do our own thing anyway.

That’s exactly how I like it actually.

The end.

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

Blessed with a different child (A caravan holiday in peak season with a disabled 9 year old)

Back home we live in our own world: You go to school in a town far away and I take you to quiet places where few people go, like the park early in the morning or swimming much later after dinner.

Here we can’t do that.

Here it is obvious that I am blessed with a different child.

Caravan parks don’t isolate the disabled children like education does. Caravan parks don’t give you preferential treatment or appointments like the health service does. Caravan park restaurants won’t let you order mashed potato for breakfast like I make you at home. Here you are the same, but different. A bit like the caravans which on the surface all seem similar yet every single one is different.

When we arrive and unpack those around see I am blessed with a different child even before I park the car. There you sit in the back flapping with excitement and chewing on the nose of your cuddly toy. It’s not something 9 year olds do really and you look…odd.

I forget that others see you and stare. It makes me uncomfortable and reminds me why I don’t take you out as often as I should.

Is taking a disabled child to a busy caravan park in the summer holidays the right thing to do?

I think it is.

I take you to the on-site pool. Other 9 year olds are swimming unaided, playing with friends, drying and dressing themselves and doing hand stands in the water. You are lead by the hand by your mum, still using swimming nappies and a rubber ring and you giggle just sitting at the side dipping your feet in the shallow toddler splash pool. You are every bit as happy as all the other children, just in a different way.

I watch you and smile. Being blessed with a different child has taught me to enjoy your happiness every single day. As I look about I notice a life guard watching and smiling. Your different-ness has made them smile too.

I take you to the busy park. Other parents sit nearby chatting and drinking. I am lifting your legs, guiding you to the steps each time, and encouraging you down the smallest of slides so that children 7 years younger than you can take their turn. You make happy baby noises and wave your hands with excitement. Some parents move their children away, some children leave of their own decision but some carry on regardless. I am not embarrassed by my child but I am embarrassed at how others respond to him.

What’s so bad about seeing someone blessed with a different child?

Being in a busy caravan park with a child who is noticeably different to his peers has made me realise something:

My child is not the issue, the issue is how others respond.

I have not helped my son or my community by going to places others don’t. So from now on I promise to change that.

I am blessed with a different child and I won’t hide that anymore. If he wants to swim at peak times that’s where I will take him. If the park is busy what have I got to be afraid of?

I’m done with the isolation. If I can cope with a busy caravan park in summer season with a nine year old who can’t dress himself, can’t speak, can’t jump and still eats with his fingers then I can do the same back home. If he has a seizure in public so what? If he has a meltdown why should I apologise? He is a child just like any other child. He is beautiful, funny, full of mischief and entitled to play just like any other child.

I thought I was making things easier for my son by protecting him from comments and stares but in reality I have made both more likely because children like my son need to be seen more to be accepted more.

I am blessed with a different child and it’s about time the world saw a lot more of him!

I’m so glad I took him to a busy caravan park in the height of summer season. It gave me confidence and delight to be the one blessed with the different child.

Why Does My Autistic Child Have No Awareness Of Danger?

Earlier today I was walking home with my autistic son. The closer we got to home the less he wanted to hold my hand so, rather reluctantly, I let him go. We were on a pathway with no other way other than straight ahead and I could see our home right ahead.

Without so much of even a glance my son stepped off the path and ran across a road at the end of the street. Thankfully I live in a quiet street but my son’s lack of danger awareness scares me.

My son is almost ten but he still can not safely cross a road himself. He has no concept of waiting at lights for the green man, no idea of road safety, no idea that sharp knives should never be touched and definitely no idea about the dangers of water. He is very typical of most children with autism. My son has no awareness of danger which puts both him and others at risk continually.

But why do so many children with autism have no awareness of danger and is there anything we can do to help them?

There are very valid and understandable reasons why autistic children (and adults because for some this will be a lifelong difficulty) struggle with danger awareness. I will break them down and explain how we can help a child or adult learn danger awareness despite having autism.

1. Rigid thinking and lack of imagination.

This isn’t lack of creative imagination but more social imagination and understanding people and events that have yet to happen or be experienced directly. How this presents in daily life for a person with autism would be a very literally and black and white thinking along the lines of ‘since I have never been hit by a moving car it is therefore impossible that this could ever happen.’ They can not ‘imagine’ that anything other than what they have experienced could happen. Even if they have came across a danger before such as water that was out of their depth a person with autism may struggle to generalise that experience. So if they were out of depth in a pool they visited on holiday once they may only link the danger of deep water to that particular place and time and not generalise that danger to all pools or beaches.

How to help: Never assume someone with autism is incapable of understanding. Use their way of thinking to help them. For example point out speed limit signs when out and talk about the fact that the faster a vehicle moves the more dangerous it can be. Linking speed to danger is a very important message that can be generalised as it is very rule based.

With water point out warning signs that are often universal too and if there are any lifebelts around talk about why those are there and how this points out danger. Never assume anything so when buying fireworks take time to show the packaging to the child or adult and let them see or read the warnings for themselves if they are able to. Repetition is often the key for anyone but especially so for someone on the spectrum who may require extra processing time.

2. Uneven developmental profiling.

What this means is that while they may, on the surface, seem to function similar to children or adults their own age there may be areas like social skills or awareness of the world around them that they struggle with. It is very true that autistic’s see and experience the world in a very different (and wonderful) way but this may mean they focus on or obsess on things to the detriment of other skills. They may have a unique and amazing ability to tell you the make and model of every car that you pass, for example, but have no idea where the local police station is should they need help. It’s not that they are not observant just that they have focussed on something else instead, like how many bricks form a pattern on the next door neighbours wall.

How to help: Give them a reason to focus on what is necessary. So if you feel it would be worthwhile them knowing where the police station is explain why and have a visual chart with a photograph so they have to place the photograph either on the map or somewhere else to help them visualise what you mean by the police station and why it’s important to know where it is. Having visuals for traffic lights or other safe places to cross and looking for these helps too. In your home allowing them to stick warning stickers on things like sockets can help remind them of potential danger too. Visuals simplify, are easier remembered and are portable. I can’t recommend them enough!

3. High sensory needs (that can either overwhelm them or lure them to the point that everything else gets forgotten.)

For my son the lure of water is so high if he sees it he wants to touch it so badly that he can not see anything else going on around him. For others their anxiety levels can rise so suddenly when they have so many sensory stimuli bombarding them at once that they just have to run or drop to the floor and they blank out everything else in order to cope. This may happen suddenly in the middle of a road if, for example, they heard a dog bark and they are scared of dogs.

How to help: If you know somewhere will be noisy then noise cancelling headphones may help. Sunglasses may help with bright lights and having fidget toys may help redirect the need for sensory feedback too. My son has a massive lure (and fixation) on elevators so I allow him that ‘fix’ before I expect him to do what I want. I use ‘first lift, then shopping’ as otherwise he would simply run to the elevator while I shopped. It’s about working with and adapting to sensory needs rather than expecting them to suddenly disappear. Be creative and, if you can, even ask your child about what things stress them or what they enjoy and see if together you can find a way of supporting them.

Of course autism is a spectrum and for every autistic person who has no awareness of danger you may have another, like my daughter, who is hyper aware and as a result makes herself ill with worry at perceived dangers that are extremely unlikely. A shark eating her up at the local public swimming pool is hardly going to happen but she will fear it anyway.

Living with someone who has limited or no danger awareness (or even hyper aware and therefore highly anxious) is difficult. It takes patience, time and a willingness to adapt and understand to help teach danger awareness, but it can be done. I know for some children (and adults) there will be extra barriers such as learning difficulties and communication difficulties and some children will never reach a level of awareness or understanding to have any grasp of danger awareness at all.

I continue to do what I can to help my son learn road safety. While he is learning though I make sure to keep him as safe as possible. The more I teach him about what I feel he needs to know to be safe the more he teaches me about how smart and wonderful his way of looking at the world is too.

It’s all about balance. Independence verses safety, teaching but being willing to learn too.

Lack of danger awareness can be terrifying but with patience and understanding it can be taught. Never underestimate an autistic person’s ability to learn.

Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!

Five Surprising Skills Autistic Children May Struggle With (and tips to help them)

Even before my children were diagnosed as being on the autism spectrum I could see that they were struggling with certain things. The truth of the matter is we all struggle with different things in life and we all have strengths and weaknesses.

When I researched autism I could see so many of the difficulties my children had fitted with the diagnosis like not giving eye contact, not responding to their names, having repetitive play or movements, struggling with communication (speech in particular), and not understanding the play and actions of their peers. However some of the things they struggled with seemed initially to be unrelated to autism but are in fact much more common among those on the spectrum than those who are not. The following everyday skills are not part of the criteria for autism and neither are they things that every child with autism will struggle with but if you have a child on the spectrum you may relate to some of these struggles with your child too.

1. Blowing their nose.

Over the years on autism support groups (online and in person), this seems to be a common struggle for many children on the spectrum. There seem to be a number of reasons why this skill can be hard to learn including understanding the concept, sensory issues and developmental delays. My twins are now 9 and still neither of them understand or have the ability to blow their own noses! For my son the whole ability to understand and follow instructions is a huge struggle and for his sister it’s much more sensory and developmental.

Some tips for helping your child (preferably when they don’t actually need to blow their nose so they can avoid the added grossness of snot!) develop this skill are:

* Using a straw to practice blowing so they understand the terminology,

* Encouraging blowing from the nose gently with the mouth closed.

* Making nasal sounds like ‘Choo’ from the nose rather than the mouth.

* Use a smell that could endure sneezing such as pepper (though always do this under very close supervision)

2. Tying Shoelaces.

It should be noted this skill is not usually developed by any child until around the age of 7 or 8 though for children on the autism spectrum is is often much later. This is due to so many factors such as fine motor control difficulties, sequencing difficulties, co-ordination difficulties and sensory issues involved in pulling the laces tight enough.

If your child is struggling with this don’t panic. Here are a few tips to help:

* Try showing them from behind them as showing on your own shoes will actually be a mirror image of what the child needs to do and this could cause the child to become confused.

* Use visuals to follow showing what the laces look like throughout the process therefore breaking down the language issue and sequencing difficulties.

* Watch YouTube videos of different ways to tie as there may be a way that makes it much easier for your child to grasp independently.

* Invest in self trying laces or elastic laces so that tying isn’t necessary.

* Buy shoes with Velcro or other type fastenings to avoid the need for shoelaces altogether.

3. Hand Writing.

Not every child with autism will struggle to have legible and neat handwriting. My daughter is a perfectionist and her handwriting reflects this, but for many children it is a huge struggle. Some of the reasons for this are lack of motivation, fine motor difficulties, sensory issues with holding writing utensils, processing speed and sometimes other learning difficulties such as dyslexia. Some ways you can help your autistic child with this include:

*Use technology to help but having apps that include letter formation and encourage the child to use a stylus in the same way they would use a pencil or pen.

* Make it fun by playing games or drawing pictures to take the pressure off the child.

* Allow the child to type instead of using handwriting for some tasks so as not to inhibit their creative expression too much by taking the onus off the physical ability to write and onto the actual content. (As adults how often do we actually hand write now?)

* Experiment with different media and materials such as pens, crayons, or paint, to help bypass any sensory issues.

* Stay encouraging! While handwriting is a skill we all need it is less essential than ever for future employability these days.

4. Continence related issues.

Many children struggle silently with continence related issues and many parents are embarrassed to talk about things like bed wetting. While some children, both autistic and neuro-typical, may sail through potty training many will struggle. It is ‘normal’ for many children on the spectrum to have a delay of some sort in this area either by not being developmentally ready in line with their peers, having huge anxiety about one or several areas of the task, having sensory issues around bathrooms or underwear, or struggling with the social awareness of it all. Don’t panic if your child is one of those struggling and don’t feel you are alone. Here are some ideas that may help, though if you feel there could be any underlying medical issues or if something has recently changed with toilet training in any way do seek medical support.

*Try using visual schedules outlining the stages involved in the skill from understanding the need, sitting on the toilet, cleaning up and pulling clothing back up. It may take much longer for someone on the spectrum to sequence naturally so be patient.

* Eliminate any obvious sensory issues or barriers by having something for the child’s feet to rest on while on the toilet so they don’t feel they will fall, empty any smelly bins, having the room calm and tidy and if using a public toilet try and find one without noisy hand dryers if this is a trigger.

* Go often and make trips more routine rather than waiting until urgent. Many children on the spectrum thrive with routine so having regular routine visits can take away stress.

* If your child is socially nervous having a card or code they can use to be excused from school lessons to go could make things easier than having to get the teacher’s attention and communicate the need verbally, all of which can be immensely stressful for some autistics.

* Don’t expect a smooth ride! Change in routine, high anxiety, family change in circumstances and even hormone changes can affect toilet training so much.

* Be respectful always. Don’t laugh at accidents or mention struggles in this area with your child as it could damage their self esteem.

5. Sleep.

No-one told me my son’s severe difficulties with sleep could in any way be related to his autism! A quick google or chat to parents of autistic children and it isvery obvious just how common sleep issues are for anyone with autism. These issues range from inability to settle to sleep, inability to stay asleep or inability to get back over to sleep therefore waking extremely early. Sleep is vital for our mental and physical health and lack of it can have significant effects such as memory loss, fatigue, ill health, poor diet, inability to focus, irritability, mood swings and weight gain. There are a number of key reasons why it is thought autistic children and adults find sleep a struggle and these include anxiety, sensory issues (around clothing, bedding, lights and noise), hormone issues, lack of time awareness and different bodily needs. My son can function very well on four or five hours sleep for example while I can’t!

Some ideas to help your child with sleep:

*Having a clear routine to help establish time and expectations.

* Using visuals such as a grow clock or nightlights.

* Physical and environmental factors such as black out blinds and toy free bedrooms to remove distractions.

* Background noise such a while noise (hoovers/fridges/freezers etc) which can be calming for some or perhaps quiet, peaceful music.

* Technology free time before bed to avoid stimulating the mind too much prior to sleeping.

* Some parents choose to use natural products like lavender oil or prescription medication from paediatric doctors such as melatonin.

These are just five things I was surprised my autistic children struggle with and I could have picked so many others like riding a bike, regulating their body temperature, and even dressing themselves.

Don’t underestimate your child though. If there is one thing my children have taught me about autism it is this: they may struggle in some areas but they excel in others and they bring me untold joy daily.

Have you related to any of this? Feel free to share!