My children do SUFFER from autism and I think we need to understand that.

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I have just outraged and angered an entire community by saying that. Before you pin me to your dart board and vilify me on social media please spare me a few minutes of your time to hear me out first.

I adore my children. They are my heartbeat, my reason for being, my everything. I think they are the most beautiful human beings ever created, they are talented, hilarious, kind, amazing and every single day they make me proud.

They also both suffer from autism. I use ‘suffer’ deliberately.

Dictionary.com defines ‘suffer’ as:

verb (used without object)
1.to undergo or feel pain or distress:
2.to sustain injury, disadvantage, or loss:
3.to undergo a penalty, as of death:
4.to endure pain, disability, death, etc.,patiently or willingly

So sticking with the dictionary meaning let’s go through this. Not all apply to autism but here are the ones that do for my children:

Number one to undergo pain or distress. My children both undergo this due to their autism but in very different ways. My daughter feels very real pain when she experiences sensory overload and certain smells make her physically sick. Loud noise hurts her ears and someone walking past her in school is like them sticking needles in her. Her pain is real. Not understanding social situations distresses her to the point she has panic attacks and cries. My non verbal son experiences distress and pain daily as a direct result of his autism. The simplest of things changing or even a door open anywhere in our full street and he will self harm and scream for hours. He just can not cope and has no means to communicate why. That to me is pain and distress not just for him but for us too.

Number two: to sustain injury, disadvantage or loss.
Loss of ability to speak both consistently for my non verbal son and in certain situation for my daughter due to extreme anxiety; that is loss and disadvantage. To be excluded from social events because you are so limited in your interests or find social situations so complex and difficult is loss and disadvantage. To have the level of learning difficulty my son has where at 8 he can not write one letter or number nor can he read is a huge disadvantage in life. To still be wearing nappies at 8 is a disadvantage and loss. To not be able to dress yourself is disadvantage and loss. So yes they suffer from autism according to this definition too.

Number four: to endure pain or disability.
I see autism as a very real disability for both my children. They are unable to do what others in society take for granted. My son will require 24 hour care all of his life. My daughter has mental health difficulties which will require ongoing monitoring for most of her life. Socially they will both require support too. Their autism is life long and they require a much higher level of care than other children their age do. Do they need to ‘endure’? Yes I believe they do. A school day is huge for them both to cope with. The demands placed on them, the sensory difficulties faced and the continuous transition from outside to inside and different rooms puts massive stress on them both and it takes huge strength for them to get through every day. Autism causes them mental and physical pain at times in ways many of us don’t quite understand.

My children live in a world that is different to them and confusing. Their communication difficulties and social struggles make everyday a challenge. They struggle, they endure and they face difficulties. They are suffering.

It is apparently not politically correct to say anyone suffers from anything. The negative connotations associated with the word suffer make some people very angry. I am not dismissing that at all. Yet I am left with a big concern: If we continue to only allow people to use positive and politely correct language when referring to autism like it is ‘just another way to see the world‘, or ‘it is a gift‘, or ‘it is a difference to embrace‘ then are we doing an injustice to those who are in fact struggling daily, in pain mentally or physically as a result of their autism, and suffering as a result of inflexibility, social confusion and misunderstood repetitive movements like flapping?

My children need support. They need people to help them through their struggles. If that means I come across as negative saying they suffer from autism then so be it. Sometimes I have no choice but to break the taboo in order to get the support my children desperately need.

If by stating they are suffering it causes people to want to help, or makes them think about how they treat them then I feel it is justified.

I tell my children everyday how wonderful they are, how precious they are, how loved they are. I celebrate their achievements and accept them but I refuse to sugar coat their struggles and I want to honour them both for the way they cope in all the ways they truly suffer as a result of their autism.

They suffer from autism and I think other people need to understand that.

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Why I cried when my child had a meltdown on a busy train

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Isaac was so excited. He had watched so many trains come and go from the busy platform while he flapped, clapped and laughed at the doors opening and closing and the whistle blow as each train pulled away. He loves trains and even more so when he gets to ride on them.

Our train was due next so I held his hand and gathered up our bags. I knelt down beside him and told him we needed coach B and we would sit at a table. I was unsure if he understood as at 8 he has complex autism, learning difficulties and a brain tumour. I had already prepared him though and just the day before we had been on the same train for the journey down. He had loved that journey and I was sure he would love this one too.

But as I helped him over the large gap and headed for our booked seats on the busy train I had no idea of the huge meltdown I was about to face.

The seats we booked were not where they should have been and instead of a table of four we were instead booked to sit on a row of two with the other two seats behind. No amount of explaining would work and Isaac sat down in the aisle of the busy train and screamed.

He screamed and he screamed. He banged his head and bit himself. He shook and kicked his legs. He could not cope with such a simple change as a different seat. It was awful.

He was scared. I was scared. He was crying, his sister was crying and I was crying inside. It was like a scene from a horror movie with all eyes on the train on me and my son and I had no idea what to do. My son was a danger to himself and others and was causing an obstruction on a busy train that was unable to stop.

I sat on the floor beside my traumatised son and tried to calm him as a member of the train crew approached us. Through the noise and distress of my son and his sisters crying I somehow managed to explain to the assistant what the problem was.

Immediately she did everything she could to help. She checked every carriage on that train for a feee table but there was none available. I tried to see if Isaac would sit on some fold out seats near a window or perhaps even stand at the door. I had told him we would be sitting at a table together and that was all his brain could process. One little change had disturbed him so much his body was in crisis.

And then a stranger offered to help. With tears in her own eyes she came down to where I was and said she could see the distress of my son and would he like her table seat. She was not angry or frustrated, or even annoyed; she showed compassion and gave up her own seat to see my child happy.
I thanked her and we sat at her table and immediately Isaac began to calm down. Everyone was looking at me and I was waiting for a stare or rude comment or cheeky remark. We got none of that. All I saw were people moved by what this lady did and by seeing a child with special needs so upset.

I was so touched but more was to come.

IMG_1108As the train employee returned she handed me a bag. She apologised for the booking mistake, gifted us a whole bag of food from the buffet trolley and called ahead to our destination and booked assistance for us. She then asked what Isaac enjoyed doing and when I said he loves pressing buttons she lead him through the entire train and let him press buttons at doors, toilets and even on her ticket machine.

IMG_1107She turned Isaac’s distress to utter delight. As I walked through the carriage and past the passenger who had give up her seat I looked at her and cried. She too has eyes filled with emotion as she watched my son laugh as the toilet door opened when he pressed the button.

Yesterday I witness kindness on a scale that changed me. I saw not only autism awareness but autism acceptance and compassion. Instead of stares I saw smiles. Instead of rudeness I saw understanding.

My child is not badly behaved or spoiled. He was highly distressed over a simple change that I had no control over. He was told something would happen and that didn’t go to plan. He could not voice what was upsetting him and he was scared we were on the wrong train since we had no table.

I cried when my son had a meltdown on a busy train yesterday because I hate seeing him so anxious and scared, but I also cried at the actions of complete strangers and simple acts of kindness that I will never ever forget.

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I found this bag this morning as I was sorting though our luggage. It reminded me again of yesterday and why I cried when my son had a meltdown on a busy train.

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Why does my brother have to ruin everything?

The nativity was done, the presents bought and the food all ready. When your twins are six they ought to be excited about Christmas Day. One of mine was. The other was totally oblivious to it all.

But we bought him gifts regardless.

The day started badly. Pretty badly to be honest. Isaac refused to come downstairs even though we had changed and dressed him (in his school t-shirt and jumper as he still refuses to wear anything else). So while Naomi was embracing the magic of it all and loving the fact she had received the very toy she wanted, there was a noticeable absence in the room. I should have suspected something. But I didn’t want to miss that magic of seeing my daughters face when she opened her gifts. Plus she wanted me there.
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It was all too late. Isaac was busy upstairs, in my bed by now, having a party of his own. His ‘gift’ was of his own making and the smell was overpowering. The bedding, his clothes, his body from head to toe, and anything else nearby needed urgent attention. So while I attended to a screaming, fighting child, a filthy room, and smelly clothes, I was missing out on my daughter’s special moments. Moments I will never get back. And her happiness at getting presents was tarred by the fact her mum was not in the room to share it with her.

‘Mummy, why does he do that?’

Stress, lack of attention, sensory seeking? Who knows really. He can’t say and I can’t mind read. It wasn’t a good start though.

He came down and saw her new toys and tried to attack her. Despite him having plenty of his own he showed no interest in any of it and started screaming again. Naomi wanted to defend her toys but having sustained quite an injury from her twin less than a fortnight ago (which still has yet to fully heal) she was scared. So she started crying.

‘Mummy, why won’t he leave my things alone?’

Jealously, lack of understanding, curiosity? Who knows. He can’t say and I can’t mind read. How do you support siblings when a child can be so unpredictable and violent?

Later on we went out to grans for dinner. He ate a bit then climbed on a bed in a room, as he always does. He was extreme sensory seeking (use your imagination here) and was not going to be stopped for anything. Finally he returned to us covered in sweat and pulled me to the kitchen. By process of illumination we found he wanted a pineapple. As he pulled the leaves off and played with them, despite having lovely new toys there to play with, his twin sister once again was curious.
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‘Mummy, why can’t he like toys like I do?’

Lack of imagination, developmental delay, sensory issues? Who knows. I can’t always answer as eloquently as I should.

We returned home and I prepared a light tea for everyone. Lots of snack foods and treats. But no meal is complete for Isaac without mashed potato and gravy. And I had not made any of that. And because it was laid out as a buffet his plate was sitting empty (so to him he wasn’t getting any. Why did I not think about that?). He went crazy! Cue screaming, crying, food flying, crockery smashing and a huge amount of stress. So maybe I should have made mash and gravy but he had already had it twice that day and it was all food he usually loves. Surely we can have one mealtime without mash and gravy? I was exhausted, angry, stressed and frustrated. I walked away.
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The son screamed and lashed out more. The daughter cried. The husband’s stress levels were at boiling point.

I returned to comfort my daughter. Through tears she snuffled,

‘Why does my brother have to ruin everything?’

I met that question with silence.

We tried. We failed. I’ve came to the conclusion tonight that Christmas may be best done in private with my daughter in her room. It isn’t fair on her, on us, or on her brother. I have 365 days to work out how to make it better for her.

It starts with the tree coming down tomorrow.