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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The nine household items responsible for meltdowns in my autistic children.

Don’t they look so sweet and happy?

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That’s because they usually are!

Yet all that can change in an instant when they see or hear certain household items. There are certain things pretty much every home has that cause both of these little angels to go into complete sensory meltdown in the blink of an eye. They become terrified, traumatised and tearful and we often end up exhausted.

So what could be the cause of such fear you may ask?

Here are the top household items that cause meltdowns in my children with autism (in no particular order).

1. The vacuum cleaner.

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Just the very appearance of this cleaner causes both children to run for the hills with their ears covered! It’s noisy, smelly, changes the carpets and moves their toys. Wisdom has taught me to keep this machine firmly in the cupboard until the kids are out of the way.

2. The hairdryer.

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I have tried to get them to hold it, turn it on and off and even use it on me but no, this item is more like a raoring lion than a plastic air blower to them. Every single time it is needed to be used they fight it even if it is only for my hair. I doubt either of them has a future in hairdressing!

3. Nail clippers.

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Oh boy you have never seen a meltdown until you see my children react to these little things! They run, hide and scream so loud I am surprised my neighbours have never called the police to us. They would rather have nails jagging into them or so long their shoes no longer fit than have me take five minutes to gently use nail clippers. Even the highest trained manicurist would struggle to contain the fear my kids have for nail trimming.

4. The shower.

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We are blessed to have a bath (in which my kids would happily spend all night in) but sometimes for speed it would be lovely to have them step into the shower quickly before school or after garden play. I may as well suggest being eaten alive by a crocodile! Showers in swimming pools, caravans and hotels are avoided like the plague!

5. A hair brush.

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I am a gentle parent, that much I promise you! I brush their hair slowly and calmly and never pull or tug but we still have a huge daily battle to get hair brushed or combed. Gel, spray or mouse is never well recieved so I settle for a basic brush most days. I pray they never ever get the dreaded head lice!

6. The hair trimmer.

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I dread the time we have to use these. We have tried barbers and hairdressers but after badly cut ears, and even being banned from one local barbers we decided to try doing it ourselves. It gets so bad I find myself using a number one so that we can go a lot longer before it is required again. It takes days for my son to recover from a hair cut of any sort.

7. Toothpaste and toothbrush.

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I don’t think there is a brand of toothpaste we haven’t tried in a vain attempt to get my children to brush their teeth. They are too strong, too minty, too lumpy or too colourful! It never ceases to amaze me that my child chews everything he can get his hands on yet goes crazy at the sight of a toothbrush…something that is actually designed to go in his mouth! We have tried apps on the iPad, songs, timers, character toothpaste and brushes and visual timetables but the sensory overload of brushing seems to cause us to hit a brick wall every night. Dentistry is another career choice I reckon I can score off the list for them both!

8. The food mixer.

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Thankfully this gadget isn’t used as often as the others but every time it is used we have meltdown city. It is loud, it vibrates and it makes it impossible for them to stay in the same room. I am eternally grateful it is only ever used for a few minutes although the calming down of the children takes so much longer!

9. Socks.

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Yes you read that right! Socks! They don’t make noise, or make them wet or even go in their mouths yet socks drive my children nuts! We have tried the seemless variety and every colour under the sun but it seems anything that covers their feet is unbearable and ought to be binned. We have had socks thrown out of car windows, left in school, flushed down the toilet and hidden at the bottom of the toy box. They are the last item of clothing put on before school and the first items to come off. Cold feet (with uncut nails!) is the way forward apparently!

As long as my children have no shower, long nails with no socks on, wet (uncut) hair that hasn’t been brushed and unclean teeth and my carpets are not vacuumed all is happy in my household!

They don’t seem to see the problems…unfortunately I do!

If you happen to walk past my house and hears screaming you can take a bet on which household item of these I tried using.

While the kids are at school I am off to have a shower, brush my teeth, dry my hair and trim my nails…and put socks on. It will be nice to do them all meltdowns free for once!

 

 

 

If you burst my bubble I will cry

So it’s the summer holidays here and all the schools are off. Except my children are still going to nursery as usual. They need their routine, I need the break. And it keeps all our sanity intact.

But other than nursery we are staying away from people and places as much as possible. We haven’t been swimming, or soft play or to any of our usual places much (unless they are autism related) since the schools broke up. Everywhere is busy, noisy, and full of ‘normal’ children. The kids can’t cope with the noise or the amount of people and I can’t cope with my little bubble of life being burst by seeing ‘normal’ children and families or else I cry.

Seeing children climbing soft play equipment and not chewing the wire safety surround. Seeing all the children in church sing songs on the stage and doing all the actions without thought. Watching children in parks on see-saws and roundabouts laughing and playing with friends. It is all too much of a contrast to the life my family is leading and it bursts my little bubble and makes me cry. So for now, the four of us just get on with appointments, nursery, family and playing in the garden. And attending things that are special needs specific only. It’s all any of us can cope with so it is as it is.

If I take my kids to soft play one refuses to ever go on the equipment and instead sits at the table with mum and dad watching all the others. She can’t climb or crawl and is frightened of other kids. Add the fact she hates walking without shoes on due to her sensory preferences and you can pretty much forget soft play. The other can climb but has no awareness of other kids so pushes them out his way, bites them or climbs over them. Then he forms a circuit on the equipment and simply repeats the same circle over and over and over and over, only stopping to chew the wire safety surround, stare into space for minutes at a time or flap his hands and arms. He has no interest in the other children and neither looks at them nor cares what they are doing. If they block him he squeals at them until they move. He sticks out like a sore thumb. He gets called names, laughed at, picked on and pushed. Young children bursting my bubble and making me cry. So the only soft play we go to now is an autism group one. Even there he is different. But so are all the other kids. And most of the other kids have little interest in what he is doing. And all the parents think it is there child when a tannoy says one of the children is running around naked!

So the only non-autistic place we go to every week is church. And right now church is very very hard. They keep bursting my bubble and making me cry. They don’t mean to but the older my children get the more obvious their disabilities have become. Both my children should have moved on from creche to sunday school 18 months ago but both are still in creche with the babies. In Sunday school you sit down and listen to stories, you do crafts and play games and sing songs. Isaac can not talk or sing, or play games or hold a pencil, or follow instructions, or sit down long enough to hear a story. So Sunday school is totally unsuitable. Naomi says the singing is too loud it hurts her ears, she refuses to talk or join in games and is highly anxious and upset all the time. And she isn’t toilet trained. But the other children in the church keep growing up and moving on to Sunday school and my bubble keeps bursting! Two weeks ago all the sunday school children were up on the stage at church singing songs and doing actions and praising God. Children a year and a half younger than my twins singing to a crowd of almost 200 people, happy and excited to be showing what they have been practicing for weeks. I was so glad that Isaac was having a very bad day (in fact a very bad weekend if truth be told) and we could get our bags and go home. My bubble was well and truly burst that morning. I just could not pretend my children were normal any more. They should have been up on that stage with the other children. But I don’t know if either of them ever will.

It is exactly the same when we go to parks. Isaac only wants to find a bush to run along side and look at out the corner of his eyes. And Naomi only goes on the swing. The baby one at that. She is afraid to go on a seesaw, gets dizzy on a roundabout, thinks slides are too high and isn’t able to climb on anything. So pretty pointless taking her to the park then! And if the other children run about she thinks they will knock her over or bully her. Meanwhile her brother has escaped somewhere. No, the garden is a much safer place to be!

Being a parent of special needs children is very isolating at times. Even more so when everywhere is noisy and busy and there are queues wherever you go. But one advantage of doing things with just the four of us is that I can let my children be who they are without people staring, or children laughing at them, or others complaining. They are accepted and loved and made to feel special for what they can do and not excluded for what they can’t do. They need to be in that bubble at times too. Because sadly they will be reminded of their disabilities all too often from the world. For my daughter who has high anxiety and low self esteem already spending a summer in a bubble surrounded by only family, friends, or other special needs families will do her far more good than harm. She needs to hear encouragement, friendly voices, cheering, laughter, love and support. Her mainstream nursery provide this, creche at church provides this and family and friends give her this. But busy soft plays and parks and sunday schools full of children all out of nappies and running around just make her feel inadequate and unable. It bursts her bubble and makes her cry.

And as for Isaac, as long as he gets to run alongside a hedge or fence back and forth as often as he wants, as long as he gets fed often, has peppa pig to watch and lots of plastic toy food to chew on he will be fine. He has no concept of holidays anyway and is happy with his shoes and socks off all day and the nursery bus coming as usual every morning. His world is simple. He isn’t aware he is different. He just needs his routine like any other day. Don’t burst his bubble by saying it is the holidays and nursery is off. You will only make him cry.

So we’re staying in our wee autism bubble for now. Hallelujah for nursery through the summer. What was that? Summer holidays finish in 6 weeks and my boys starts school? No!!! What did I tell you…don’t burst my bubble or I will cry!

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