I am that mother

Today I have the honour of hosting my first EVER guest blog in celebration of Mother’s Day. Geraldine writes on her Facebook page It’s me Ethan and on her blog Geraldine Renton.

This blog originally appeared Here. Go check her out!

imageI am her.
I am that mother that you spy out in the shopping centre dragging a child kicking and screaming.
I am that mother that follows her son while he is running around the park or the playground; yes a helicopter mother- that’s me!
I am that mother that apologies after my son has pushed, kicked or hit your child. I do try to get to my son before he hits but sometimes I am simply not fast enough.
I am that mother that catches your eye because she is singing a nursery rhyme badly and loudly to a child who is trying to hit her.
I am that mother who has dropped to the floor in the middle of a queue in good ‘ol ‘Pennys’ and rocked her son.
I am that mother who has thrown her shopping bags, pushed past you and ran off screaming “ETHAN”.
I am that mother that looks tired…ALL THE TIME.
I am that mother that smiles at your little toddler while they are showcasing their tantrums for all to see.
I am that mother that stops to speak to your child, who happens to be clapping loudly sitting while in his wheelchair.
I am that mother that holds the door for you because the damn door will slam as you try to push your child’s buggy or wheelchair out of it.
I am that mother that picks up your bags because you had to give chase unexpectedly to a toddler who saw something shiny.
I am that mother who see’s your child is having a meltdown and not a tantrum; I’m the one who moves dangerous objects away, talks to your other kids and then disappears.
I am that mother who stares right back at you when you are discussing my child’s behaviours.
I am that mother that has thanked you for all your help; which amounts to staring and pointing, let’s not forget ‘tutting’.
I am that mother who never seems to be embarrassed when their child is throwing (what may appear to be to the untrained eye) a sh!t fit over a bag.

I am that mother that asks you “Can I help?” while your child is screaming, kicking, biting and your other children are just standing still, not knowing what to do, but knowing enough to stand back and to wait.
I am that mother that smiles at you and reminds you to “hang in there”; while your toddler is asking 50 questions, your other child begging for a new toy and your newborn crying.
I am that mother that smiles at your little family as you walk past mine.
I am that mother who is just like you; only different.
I am a mother to three wonderful boys.
Ethan introduced me to the world of ‘mother’.He is my eldest son, yet in our little world he is also my youngest.
Ethan has a syndrome that takes and takes; it will eventually take his life.
Ethan has shown me how easy it is to judge other people, especially parents. He has shown me ‘all may not be what it seems’ – he has shown me a perspective which I feel a lot of us, in our daily lives forget…
This Mother’s Day, remember every single mammy you see is doing her best.
Smile at each other,
Share a look that says ‘I’ve been there too’
Hold that door open,
Pick up the damn bag,
Smile through the tantrums/meltdowns that you see…
Afterall, we are all mothers, some of us are just a little different.

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We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

My best friends…the beautiful flowers

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Sometimes I just don’t want to know about my daughters day at school. It seems contrary to all good parenting advice but when I asked my six-year-old whether she had any friends the other day she told me she spends her outside social time at school talking to and looking at the “beautiful flowers”. I just can’t bear to hear any more.

I know the school well. I know the names of every single child in her class. I even volunteer within the school for several hours a week. I talk to the Head on first name terms.

My daughter is not being bullied. She is just unable to play with the other children. Her social skills are limited. She takes what the other children say in a very literal way. She is vulnerable. Her interests are far different to the others of her age and ability. She is socially isolated and happy in her own world. She is surrounded by children who know and understand popular culture, current television characters and have physical skills she has yet to even attempt. She has only one current interest which not one other child in the class have even heard of. She is a little girl with autism in a world of mainstream children.

Her perception of what goes on in school is so different from the other children. Where others listen to a story she will home in on that one child who is biting their nails and tell me at home how biting your nails is not good and that child should have been told to stop. It is only when I deduce that the children were sitting on the carpet that I figure she was perhaps having a class story. Her tales of school are all about what children did to break the rules, whose name was taken down the tree today (a behavioural chart used in the class) and who touched her and when (she hates being touched!).

Try as I may she can not grasp that the world can be seen another way. Her autism prevents her from seeing things from other people’s viewpoints. And this is impacting on so much now. Even in the simplest tasks like reading. When I asked her the other night why she still had the same few words home to practice when I was confident in her ability to know those words she said, “I read them to you mummy so why do I have to read them to the teacher too?” It was a genuine question. In her mind she knows them. She knows that and I know that so why would her teacher not know the same thing? She is genuinely ‘blind’ to the fact the teacher will not know she knows them without her reading them to the teacher. The same way she thinks I know exactly what goes on in school because she does so why would I not too?

This is happening to so many children. ‘Inclusion’ is the way to go apparently. It is a very delicate balance between what is right for my child (and many like her) academically whilst balancing the child’s social and emotional wellbeing. School is like a mini real world where she will be misunderstood, become confused at things others find easy and just interpret everything in a different way.

She is the proverbial round peg in a square hole. It is about allowing her to be her, allowing her to be autistic but balancing that against her mental wellbeing and self-esteem when she seems so different. It is a very difficult balance and one that needs very careful monitoring.

So today as I walked my beautiful daughter home from school, with trepidation, I once again asked her how her day had been. “Oh mummy, wait until I tell you what happened to my friends today…” It was beautiful to hear her happy, animated and excited and talking about that elusive thing we call ‘friends’.

Has someone lost a tooth, had a birthday, had a new baby brother or sister, or even asked her to play I silently wondered.

“My friends, the beautiful flowers, opened up for the first time today and now they look even more beautiful!”

Maybe I have it all wrong. There is an area in her playground full of greenery, shrubs and flowers. But the one flower my daughter noticed was the one that was different. Because it was more beautiful, more noticeable and something very special indeed.

I think today she just told me the most beautiful thing about school I ever heard.

An open letter to my friends and family

Dear friends and famiy,

I love you and appreciate you so much. Your thoughts, your support and your prayers really encourage me. But I know that sometimes I hurt you because I am not able to come to things that are important to you. I really am sorry. This letter is not an excuse or even a cry for sympathy, but rather a letter to explain my heart and my actions because I realise that things are not always obvious. It appears sometimes that I ‘back out’ of things at the last minute, or I just plain so ‘no’ to things you find hard to accept. I am also much less able to commit than I ever was before. And even when I am at things I am tired, poor company, very distracted and seem pre-occupied and uninterested in being there. My mind and heart are elsewhere.

I am a mum. Like all mums my children are always in my thoughts. But the needs of my children are very high. And, although in lots of ways my life is like any other mum, is so many ways my life is very different. Everyday is very stressful and nights are very interrupted and don’t last nearly long enough. I am permanently sleep deprived. So if I forgot about your party invite, or that coffee date, or your birthday, please forgive me. One day runs into the next and my diary is bulging at the seems with appointments for two disabled children plus my own affairs. This year I will try and get the balance right even if at times I only get to send you an e-card and online voucher. It isn’t because I don’t care. It is only because there just wasn’t enough hours today. Or yesterday. Or the day before. Belated birthday cards seem to have been invented for people like me, but even then how belated can I really send it? A week, two weeks, a month? It would be better to send an early one for next year sometimes instead.

I do feel bad and guilty at times and even reminders can get forgotten when my child is screaming for dinner and the other requires an urgent nappy change. Please continue to give me grace and patience.

And please most of all extend that grace and patience to my children. They both have autism. One of the biggest ways that affects them is in social interaction. There are some major family and life events that it is just not possible or practical to bring them to. Babysitters are very rare for special needs parents and even if I can manage to arrange one there are certain times of day like bedtime and dinner time when my son is just totally unable to accept a change of person. So if your event clashes with dinner time or bedtime for my kids I have to put them first. One days change of routine and change of person can affect both my children for months. To leave the house, even without the children, takes military planning and co-ordination and my mobile phone HAS to be on. And that is why I may seem distant or quiet.

And if I do have the children I am even more pre-occupied. To have come to church today or to your house to visit or even to an everyday event like softplay has taken a lot of explaining to and talking to my children. I have probably had to google the place and show my children pictures or I have taken photos in the past. My son will have screamed most, if not all, of the way to the event as we have taken him somewhere other than school. I will have had to remind him where we are going at least ten times. Every stop, be that traffic lights or junctions or slow moving traffic, will have caused further screaming. I will have wondered if we will even make it at least half a dozen times. The event may be close to home but we will still all arrive exhausted. And it will always be touch and go if my son will come in. The lights could be too bright, the music too loud, the place unfamiliar and the people too stressful. But most of all the doors could be far too entertaining, especially if they happen to be automatic!

If you have a buffet my son will not understand that social convention means people usually access this after some level of social interaction. We might see people first, he sees food. My daughter sees stress. And even though it might appear I have eyes in the back of my head, I don’t. So watching two unpredicatable and stressed children is very exhausting.

If I visitted your house this year and my son caused chaos I am sorry. He used to be fixated with water and would seek out anywhere he could find this. Unfortunataley when you are only 1 metre high the best place to locate this is in fact the toilet! Though this still interests him he is currently fixated with beds and will think nothing of climbing on and under the duvet of every bed in your house. Whilst his twin sister is glued to me and knotting herself around my legs it is hard to truly keep up with her twin brother. I wasn’t being paranoid when I asked if you could lock your doors. It is common for him to escape. And that wasn’t lightening we saw that day. It was Isaac switching lights on and off continually. And yes he did help himself to food in your house without so much as asking. Sorry.

I need you to know dear friends and family that this is autism. This is my life. I have tried discipline. I have tried training. We are still teaching him. But this is very real sensory and ritual behaviour. This is autism. And this is why when you invite us round I often say ‘no thank you.’. It is because it is stressful; for you, for me and for my children. It isn’t because I don’t care. It is just easier to stay at home.

I am not being anti-social. I am looking to my children’s interests. Weddings, family get together, christenings, parties, family meals and church events of any kind are almost impossible and extremely stressful for me. If I bring the children it is chaos. Or I become invisible all night watching my son playing at the automatic doors or running up and down a ramp or flapping at the lift going up and down all night, while my daughter is hysterically crying for mum. If I come alone I know I am going home to screaming children and one thousand questions from my daughter as to why everything was done differently tonight. Or to a sick child from head banging.

So thank you for understanding. Thank you for inviting me to things even when it feels like I never say yes. And please keep inviting us. We might be having a ‘good day’ and be able to come for a little while. We might have enough time to prepare the children or get that rare sitter. Forgive me if I look like I have come in fancy dress as a cleaner. I probably cleaned something you don’t want to know about just prior to leaving home. Or had a handful of baked beans rubbed into my back that I wasn’t aware of. And forgive me if I leave early. I am exhausted physically and mentally. I eat, sleep and breathe my children. So naturally it is my only real conversation topic too. You see they are my full time job, my hobby, my family, my everything. I don’t get out much. Sorry if I bore you talking about professionals, and hospitals and things you take for granted like eye contact.

So thank you for sharing your events on social media,by email and in your blogs. I want to see your wedding pictures, your birthday party snaps and your summer holidays. It is like being there but without all the stress. I know you want us there and I truly appreciate that. But sometimes life doesn’t go as you expect.

I have two disabled children. I have two beautiful children. I have two amazing children.

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and they are my priority.

Thank you for appreciating that and loving and supporting us. It might be better if I say Happy Birthday, Congratulations, and Happy New Year now in case I miss your events in future. Don’t lose contact. I love texts and messages and even the odd card in the post. I am still here, even if you don’t see me as much as you would like.

And I still care and love you all.

With love,

Miriam.

A label won’t define them

Are you one of those shoppers who reads the labels before buying a product? Do you want to know how much salt it contains, whether it has any artificial products in it or even just how long a use by date it has? Or do you just recognise familiar brand labels and put them in your trolley because you know your kids will eat it? Whatever you do the label serves a purpose but without opening the product you still won’t know what it is actually like.

Autism is the same.

‘Autism’ is a label that was given officially to my son on 31st July 2012. It is a label he will have for life. Some people see his label but don’t see him. Others use the label to get a better understanding of his behaviours and tailor his education to suit his needs. Some see his label as just an excuse for anti social behaviour. Still others are frightened by his label. Many do not understand his label and a few see past his label and get to know Isaac. And even fewer are interested enough to read the small print and see the other labels he has such as global developmental delay, severe learning difficulties and neurofibromatosis type 1. 

So I thought it would be good to explain his label (his diagnosis) a little more:

Autism is a complex lifelong condition that affects how a person sees and makes sense of the world. It is a spectrum condition meaning some people are affected mildly and others more severely. There are four main areas it affects including:

social communication (Isaac can not talk or point and struggles to make his needs known. He does not use social gestures like waving or pointing or blowing kisses. He is unaware of others around him much of the time and can not read facial expressions such as knowing when someone is happy or sad. He can hit or bite as he does not know this is not a socially acceptable means of communicating)

social interaction (Isaac does not give eye contact and ignores people when they are talking to him. He has difficulty following simple instructions. If he wants to sit on a seat and someone is already on it he will sit on top of them as if they were not there. He only plays on his own. He does not understand other childrens games. He will break up a train set unaware his sister is playing with it.)

social imagination (Isaac is unable to imagine dangers exist such as moving cars on a road, or falling down a hole. He can not cope with changes to his routine because he can not ‘imagine’ doing anything differently. He can not cope with new places as he has no concept of the wider world around him. New toys stay in the boxes as he can not imagine they could be taken out. He can not imagine what another person might be thinking so can act very inappropriately. He is unable to work out what other children are playing or that a train set toy is representative of a real life train.) 

sensory issues (Isaac processes sensory information differently to others. His play is all on a sensory level and he finds great delight in water play or exploring feathers. He likes to scan things across his eye line. He hates socks and shoes on. He chews and bites everything. He prefers to have no clothes on. He likes deep pressure. He loves the detail and repetitive patterns on things. He adores straight lines.)

 

But this is only how those areas affect Isaac. Everyone with autism is so unique and the areas of difficulty can affect people in all different ways. It is very likely Isaac’s twin sister will also be diagnosed as having autism later this year. But, she can talk fluently, gives good eye contact, is socially aware and academically thriving. Yet they could both have the same label.

Because a label can not define a person. 

You have to open a tin of beans and taste them to know what they are really like. For all a washing powder label says it gets “rid of every stain known” until you try it on your childs ground in blackcurrant juice stains you will never know how good it is.

Please don’t be frightened of my childrens labels or diagnosis. And please never let it define them. They are funny, boisterous, happy, loving children who are unique in every way. Autism helps us understand them but it will never define them.

Here they are playing together with a toy kitchen. Communicating, interacting, using imagination and experiencing all sorts of sensory feedback like noise and colours and movement. Because no label can define them!

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