Extremes of emotions on holiday

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We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

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Autism awareness video

This is for those of you who have not seen this.
I was approached by a social media group of parents to do something to mark autism awareness day on 2nd April.
This is the outcome:

Thank you once again to all the families who helped me make this by supplying photos of their beautiful children.
You are all wonderful x
Can you spot my own two beauties?

World autism awareness day

It just would’t seem right as a mother of two children with autism to let this day pass without writing in my blog.

I had so many plans to write a positive, upbeat blog about how great my kids are, how much autism has taught me and how proud I am of them.
Yes that is all true but yet ironically, today of all days, autism has hit me right in the face again.

It started off so well with publishing a video on social media that was received well. Both kids got off to nursery and school easily enough and I even got to get a hot cuppa without the phone ringing or the door bell going. Gosh, I even managed a shower!

But then my daughter came home from nursery with that look that told me her morning had been a struggle and she was right on the edge of crying. Call it mother’s intuition or whatever you like, but I just knew this was a ‘big one’. This was something that was going to take days or weeks to recover from. And I was right.

First thing I noticed was the smell. My poor baby girl had been in a dirty nappy for hours and it hadn’t been noticed. She is in a busy mainstream nursery where she doesn’t speak but complies with requests without question, and is hugely anxious about approaching or interrupting staff. So she would never ever say she needed changed. After being refreshed and fed she told me exactly where she was when she ‘went’ and what she was playing with (she is a girl of detail) and how she looked at a member of staff but they ‘never noticed me’. You see, this is autism. She has no idea, even at 5, that the staff can not read her mind. They can not understand that she needs changed simply by her looking at them. And she did say they never even looked at her back as they were ‘busy like they always are.’ So my baby just carried on with a soiled nappy on hoping someone would notice.

It came to snack time. She rarely takes snack but staff are trying to encourage her more. So they succeeded and she sat reluctantly on a chair even though this was uncomfortable. Why? Because the ‘lady told me to sit down’. She was then offered strawberries which she took because she was told to. But she hates strawberries. They make her sick. So she naturally left them on her plate. Staff (who understandably have no knowledge that these make her sick as I forgot to mention it when enrolled her 18 months previously) encouraged her to eat them. So she did. Even though they make her sick. Why ‘because the lady said to eat them.’ Her autism makes her compliant to rules, even if those rules mean she will be in pain and discomfort. She has to obey. That is the rules. That is what you do.

At circle time she went to the carpet. By now she was sore and very reluctant to sit down. So she stood and looked at a member of staff. A silent plea for help. A silent hope that they could read her mind. They told her to sit down. So, despite the pain this caused, she sat down. ‘It made me sad mummy’. Oh baby, it makes mummy sad to hear this too.

She then sat on a bus for 45 minutes to come home. Still no-one noticed. Until finally she got home and it all came out. And shortly after telling the story she was sick. Then sick again. And again. ‘I ate strawberries mummy and I always get sick when I eat them.’ She knows. But would she do it again? Yes she would. Because she can’t seem to break the rules. If someone tells her to do something she will. She is obedient without question, even to her own pain.

She won’t be back to nursery for weeks now as she will be off sick tomorrow and maybe the next day too. And then the schools are off on holiday. Perfect timing as she never wants to go back.

I thought we were getting somewhere. I thought we were getting closer to going to mainstream school. Today reminded me we have such a long way to go yet.

I so wanted to be upbeat on this world autism awareness day. But autism doesn’t take a day off. Autism hits you when you least expect it. Autism can still be hard even when you accept it and embrace it head on.

This isn’t about the nursery getting it wrong today. Things happen. People are human. And they can’t be mind readers like my daughter thinks they are. This is about a little girl who is vulnerable, hurting, and confused.

This is about a little girl who is now sick. This is about my heart breaking once again. This is autism. On world autism awareness day.
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Autism is

I was asked to write a poem to mark world autism awareness month on April 2nd. There are so many misconceptions about autism and I wanted to show people how vast the spectrum can be. So here is my poem.

Autism is

Unable to speak, or maybe speaking too much
Hugging everyone, or disliking touch
Escaping outside,
Or trying to hide
Excitedly flapping
Inappropriate clapping
Autism varies so much

Won’t wear a coat, or wears one all year round
Fussy eater, or would eat dirt from the ground
Screaming or humming
Annoyingly drumming
Toys in a line
The same way every time
Autism varies so much

Struggling to learn, or has wonderful gifts
Obsessions of numbers, trains, films or lifts
Spinning around
Throws things on the ground
Constantly spitting
Aggressively hitting
Autism varies so much

Alone without friends, or controls every game
Always looks different, always dresses the same
Swinging on doors
Head banging on floors
Freaks at the dryer
Keeps climbing higher
Autism varies so much.

Can’t answer questions, won’t do as their told
In their own world or bossy and bold
Over prepared
Anxious and scared
A spectrum so wide
But they all bring us pride
When autism touches our lives.

And here is what autism looks like in my life:

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Things could have been so different

Every so often you get a moment in time when you realise that things could have been so different. A photo, a sound, an item you find, or maybe even something you read. For me it was seeing my children playing together. Because with the vastness of difference of ability, despite being exactly the same age, moments of true interacting together do not happen as often as they should. Naomi wants to play established games with rules, or imaginary games enacting various things she has read or watched, or colouring in and practicing writing. Isaac is still at sensory play, chewing toys or throwing them about the room. And with one talking in full sentences and the other twin still not able to say one word, it makes playing together a very real challenge.

So when they both just wanted to post food cards into a greedy gorilla game it was lovely.

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But that moment did make me wonder…

I wonder what it would have been like if neither of them had autism. I wonder what it would be like if Isaac did not have his complex needs. What would they talk about if they were both fluent speakers? What would it be like to have the moments of quality time reading bedtime stories to two children rather than just one? What if I could ask them both what they would like for dinner rather than only asking one and having screaming from the other? What if they could dress themselves, were both independent in going to the toilet, were going to school together like siblings should, had friends round to play? What if I could take them both in the garden and watch them kick a ball together without fear of one of them running away?

Things could have been so different.

Today Naomi’s nursery asked the children to dress as a character from a book as part of literacy week. There was never any doubt in my mind who Naomi would want to dress up as due to her love of all things ‘Topsy and Tim’. And as my daughter left for nursery dressed in school uniform the same as Topsy in her favourite book, ‘Topsy and Tim start school’, I could not help but once again feel things could have been so different. You see Topsy and Tim are five year old twins, just like Isaac and Naomi. Like almost all twins they share all their experiences together. Even Naomi could not help herself this morning in commenting that it would have been nice if her brother had gone with her dressed as Tim. She wasn’t just referring to today at nursery either, as she is now realising that when she starts school in August her brother will not be there. Up until now ‘school’ to her was where her brother went. Now ‘school’ is becoming two different places as she processes the fact her brothers life will never be the same as hers.

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Things could have been so different.

I could have walked to school with both my children. I could have been washing jumpers with the same logos on. They could have done their homework together, went on school trips together, played with each other in the playground, had the same holidays, had school photos together.

Instead we have different days off, the inequality of one child experiencing horse riding, swimming, sensory rooms, soft play and interactive tv’s while the other will have homework, reading and writing. We have challenges of one child using language to get what they want while the other lies frustrated on the floor, unable to tell us what is wrong. We have the balancing of needs of two very different children who are the exact same age. We have the pride of watching the smaller, younger twin teach her brother simple life skills like brushing teeth and holding a fork. We have five year olds still getting pushed in swings designed for babies. We have five year olds still in nappies.

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Yes things could have been so different.

But then we would never learn to celebrate the simple, everyday events. We would take for granted the wonderful moments in time when they break through all their challenges and play together. We would never experience pride in seeing them achieve things that other children achieve easily. We would never have met some truly inspirational and encouraging people walking similar journeys. And we would never have compassion for others like we do now.

‘What if’ will always be there but it is better to let go, mourn and release the fear and embrace the ‘what is’ of all the wonderful things your child is. All children achieve. All children develop. And all children love. All children bring joy.

Things could have been different maybe, but things are wonderful just the way they are.

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So she’s going to the mainstream

This time last year I was eagerly awaiting news on where my son would be going to school. We had no fight to get his name forward to the council as a child who would not be suitable for mainstream school, but we later had to fight to secure the right school placement. This week we had his second parents evening and he has settled well and is achieving within the right environment. We chose to defer twin sister Naomi from starting school as she was not yet diagnosed and a year could make so much difference to her development.

So here we are a year later. Naomi has grown in confidence, cognitive skills and comprehension and has much more understanding and awareness than last year. But she is still struggling (and always will) in areas affected by her autism diagnosis and also in her physical and independence skills. She is also doubly incontinent too. I have fought unsuccessfully for her name to be taken forward to the council as a child who would benefit from specialist education. Places are so limited and more and more children with autism are expected to attend mainstream schools.

At this present time the only advantage to this is that transition to school can start early. And that is very much a positive for a child with huge anxiety like Naomi. So last week it all began.

The Head Teacher, alongside the home/school link worker came to visit at home and gifted Naomi a school bag and a sticker book.

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And as a thank you Naomi made a card in return:

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I walked Naomi to the school to give them the card and we were able to talk to the office staff and the janitor. Naomi took a book with her and the staff took time to look through this with her. I have to give the school credit for this. And while I have reservations about wether the school can really meet Naomi’s needs, as her mum I will endeavour not to pass these concerns onto Naomi. She needs me to be excited for her in this new adventure. She needs me to support and encourage her and to help her understand this big change.

It’s a bit like one of her favourite bedtime stories ‘we are going on a bear hunt’ where it all becomes a big adventure yet the whole family still feel scared when they finally meet the bear. Only we won’t be running away. We will be facing this together, praying that this really exceeds my expectations and she excels there the same way her brother is excelling in his own way in his specialist school.

Talking of the bear hunt…here is my thoughts on her going to mainstream to the song of ‘we are going on a bear hunt’

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared look at all those children!

Oh yes! A visit from the Head Teacher
She could have brought a pencil, she could have brought a tie
She bought her a school bag!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared, she has an IEP?

Oh no! The IEP from nursery doesn’t count in school!
We call another meeting, lots of people talking
The school will write a new one

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared my daughter still wears nappies!

Oh no! They haven’t got a changing room
She won’t get 1-1, but she’s gonna need assistance
I can see some problems!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared there’ll be plenty of transition?

Oh no! She’ll be treated like the others!
We won’t know who’s her teacher, they’ll be no-one from her nursery
And they wonder why she’s anxious!

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared, she has asd!

Oh yes! Another visit next week
I’ll need to work with them, we’ve secured a csp now
They know my name already!

She’s going to the mainstream
It’s gonna be a big thing
I’m not scared it is just around the corner

What? The uniforms are in the shops? Quick! Let’s look at the photos of the staff again, let’s reread every book on starting school ever written for kids, try on the new jumper, pack the school bag, get the packed lunch ready….oh it’s only March!

Why do I still get scared at her going to mainstream?

Let’s hope my concerns are all proved wrong.

Hopefully this time next year I will look back on this blog and wonder what all the fear was about…

The power of a friend

To have a friend. To share laughter, smiles, dreams, moments in time. To have someone to hug. Someone who understands. Someone who wants to be with you. Someone who looks out for you, seeks out your company. Talks about you. To see a smile on someone’s face when your name is mentioned. To know someone cares and loves you.

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This.

Well what can I say? My daughter has found the magic that we know as a friend.

I have spent hours reading her a social story written by her speech therapist. To the point both Naomi and myself have it memorised. “I can say ‘hi’ to someone and take their hand. We can have fun playing together.” How simple does that sound? But when you can’t get that little word ‘hi’ out because you are so frightened, so anxious and overwhelmed. When you see so many faces of children that you can’t work out who the ‘someone’ could be. When you don’t have the courage to touch another child let alone take their hand. So we read the social story, we talked about it and we even tried to act it out. But we still had a child coming home from nursery with hands on her hips complaining ‘mummy, they want me to talk to other children. Why would I want to do that?’.

How do you explain the beauty of friendship to a child who loves their own company more than anything else? Friendship has to be experienced to see the true wonder of it. The healing that can come through having someone want to be with you. The joy that comes from sharing life with someone else.

And then Sarita started nursery.

Naomi couldn’t say ‘hi’ like her story said she should. So she smiled instead. And Sarita smiled back. That was 9 weeks ago. Now one three year old child has changed my daughters life. She started talking to Sarita on the bus. And then began to talk to her in the nursery room. And one day her nursery teacher asked Naomi a question. And because she had broken her silence by talking to her friend, with Sarita right by her side, my daughter found the strength to answer the teacher in a voice that could be heard.

With Sarita sitting beside her, Naomi has started taking part in snack time. Her little voice can now be heard at singing time mingled beside the sweetest voice of her friend. Naomi is choosing to play beside her friend rather than hiding in a corner looking at books. Where before Naomi would watch on while others participated, she is now following the lead of her friend and joining activities she has never touched in almost two years in the nursery room.

The girls have photos of each other in their homes. I can’t begin to explain just how much Sarita and her siblings and parents mean to me in the short time I have known them. I can not even explain the amount we all have in common. The girls could not have found a more perfect friend in each other.

And my heart rejoices. My 5 year old is experiencing the power of friendship. And in doing so she is linking two families, helping two mothers walk together and help each other, encouraging many and bringing healing.

The power of a friend.

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