How one 9 year-old Described her Brother’s Autism in just a few pen strokes

There was nothing special about Thursday evening as I worked my way through the typical bedtime routine for my 9 year old twins. They had already had a bath, clean pyjamas on, eaten some supper and now they had moved into their separate rooms ready for stories, kisses and pre-sleep chats.

It’s hard to split yourself in two (or three, or four even if you are blessed with a quiver full) but my daughter willingly lets me see to her brother first most nights. She sacrifices so much for her autistic brother and this is just another example of how she puts his needs before her own daily. While she amused herself quietly with what I assumed was some colouring in or reading I continued on to settle her somewhat hyperactive brother next door.

I read the same story as always. He chooses the same story every night despite the fact he has a whole basket of books in his room. His autism means routines should never change and repetition is very much the name of the game. Unlike his sister he isn’t going to talk to me at bedtime about his school anxieties or fall outs with his friends. He has no friends. I have no idea what goes on at school (or anywhere he is out of my care) and at nine he has no spoken language. I hug and kiss him. I get nothing much in return. One day I might, but not tonight. I tuck him in, leave the room and turn off his light.

As I go next door to his sister her eyes light up as she clutches a little piece of paper to give to me.

“Mummy, I’ve been thinking about Isaac tonight. Can I show you something Mummy?”

And at that she handed me this:

I asked her to talk to me about it.

Mummy, these are the wires in my head. One is the talking wire, one is the brushing my own teeth wire, one is knowing my times tables in maths wire, one is knowing how to write wire, this one is playing with friends wire, this is the knowing how to read wire…”

She named all twelve straight lines she had drawn and said how for her, like most other children, she was able to do all of the things she listed. She talked about how some of her wires connect right away and others took time but they ‘knew where they were going’ and as she gets older and learns more ‘new things’ she will have ‘more wires that know where to go and connect up straight’.

I was amazed that a child could be so aware, so astute and so insightful. I let her continue on.

‘And this, I think, is my brother’s wires mum. He finds everything so hard doesn’t he? This is his talking wire mum. Look it goes to the connection for brushing teeth. No wonder he can’t talk when his brain gets confused like that! This is his writing wire…it’s supposed to be connected to the writing one at the bottom but instead it’s connected to the playing with friends wire. It’s all so hard when your brain gets confused but I know he is trying! I mean everything must be so hard when the wires are all jumbled up like this!’

I looked at her with tears behind my eyes. If anyone will advocate in life for her brother when I am gone it will be his sister. She understands him like no other.

My daughter knows I write. So I had to ask her.

“Naomi, is it ok for mummy to share this with other people? Is that ok with you?”

She smiled and in her usual determined way took the sheet back from me and pointed to her strokes again.

“Only if you make sure you tell everyone that it’s ok to have autism. Make sure people know Isaac does HAVE wires. He has a brain. He is trying. If I could make his wires straight Mummy I would, do you know that?”

I hugged her tight and kissed her forehead. She doesn’t want her brother to not have autism. I know that. She just wants to hear his voice, be able to play with him, brush her teeth beside him, write stories with him and practice her times tables with him like she does her friends from school.

She might want a brother with straight lined connections, but she could not love her autistic brother more if she tried, with crisscross jumbled wires and all the wonderful quirkiness that that brings.

Her understanding maybe over simplified in many ways but her fierce protection and love can never be denied.

I keep looking at that piece of paper.

She’s so right. My son is severely autistic with significant learning difficulties. He will need care all his life. But she’s spot on: he still has wires. He still has a brain. He can learn. He has potential. Life maybe much more confusing for him with wires that go different ways to what ours do but is that such a massive problem?

Maybe, just maybe, having straight lined connections in your brain is not for everyone. The world would be a very boring place if all our brains looked the same after all.

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Learning to be tomato

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I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.

Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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When an angel captured love

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Do you believe that dreams can REALLY become true?

I do.

Many years ago I visited a friend’s house and my eyes were instantly captivated by a large family photograph mounted on their wall.

‘Wow’, I thought, ‘I would just love to have something as amazing as that of MY children one day.’

Fast forward twenty years and that dream has always remained with me. But the challenge of ever having that dream come true seemed to get slimmer every year. Yes I had the children, but taking an everyday picture of them both was a big challenge let alone getting them into a studio! Eye contact was an issue, understanding instructions another issue, posing impossible, and the bright lights and flashes a trigger for sensory overload and seizures. Beautiful professional photographs just one of the many things families like mine with ‘special’ children have to sacrifice at times.

But then I met an angel.

She read on my Facebook account how I was so emotional and grateful that one of my children’s schools had gone out of their way to allow my children to have a school family photograph taken. When your twins are separated by 14 miles in their education and one school does not even have school photographs taken you realise how this simple act could mean so much to me. What seems a ‘normal’ occurrence to most families became a real act of kindness to me.

Then an angel replied with seven simple words, ‘I can do one better. Call me.’

I spoke to the angel about my children. Did she understand how hard this could be? Would my children even get out the car on the day? Was she aware they have poor balance and co-ordination and would be unable to pose? Did she know my son could scream the entire time we were there? What would happen if my daughter would not smile due to her anxiety? I was as anxious as my children. Would my dream be about to become a reality? Would it be possible to capture love on a camera?

With the skill, patience and dedication you can only get from an angel my children not only coped but they SHONE!

I had a dream over 20 years ago and that dream has come true. I met an angel one day. She thought she was photographing my children but in actual fact she captured love in its purest form. She took two children who find life challenging and she found their beauty and personalities. She transformed everyday moments into priceless memories. She gave my son a voice when he has no ability to speak. She gave my daughter confidence that can not be measured. She took an everyday family and made us feel like we were royalty.

Do you believe dreams come true? My dream came true the day an angel captured love:

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Sometimes angels have names. This angel is called Amber Northfield Studio Boo.She took my dream and she made it come true. I can not thank her enough.

Now which one do I put on my wall?

When other people get involved

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The uniforms are bought, the bags packed, and the children prepared to once again start a new term at school. It is with great anxiety and fear that once again I release my children into the hands of others to be looked after and educated for six hours a day, five days a week.

For the last seven and a half weeks I have pretty much been with them both 24/7 and even though that has brought pressure and stress at times, it has also been a relief to not have to deal with other people and schools for a while.

Now that is all about to end.

Once again other people are about to get involved in my life.

When other people get involved…

1. It is easy to feel like a failure.
While I know my children have thrived this summer under my care there will be teachers and therapists within my children’s schools who will only see the fact that their development has not been stretched perhaps as much as the would have liked, or they have not been challenged educationally or encouraged to socialise with others their own age enough.
Then there is the fact other families will stand in the school playground boasting of holidays abroad, play dates with friends and new skills their children mastered over the summer which my children may never achieve.
Being around other children the same age as mine and seeing what they can do and say has a way of making me feel like an utter failure within minutes, even if unintended.

2. Everything suddenly becomes a big stress.
In summer we ate when we were hungry, if we wanted to have pizza for lunch instead of dinner we did. We ate out now and again, we took packed lunches and went out for day trips and we had fish and chips at the end of a busy day. But now my children are returning to school where one barely eats and drinks and now food will become a huge stress again.
Now the professionals are back involved there is also an expectation to ‘move the children on’ in areas they have become stuck at and we are expected to follow “proven” methods or be criticised even when these may not be right for our child. Stress!

3. The pressure to perform becomes huge.
Did anyone care if my son wore an un-ironed t-shirt last week? Returning to school brings with it a pressure to have children dressed smartly, in uniform, and arriving on time, having eaten healthily and slept well. All of those things are major challenges for my children with sleep difficulties, sensory issues, limited diets and no understanding of time. Forgetting homework, leaving the packed lunch at home or not remembering PE kit has you instantly marked down as a terrible mother and raises my daughters anxiety to a level that makes her ill. There is pressure to keep up with the other children in the class and do weekly activities too. Having other people involved in caring for your children puts so much pressure on us all.

4. I lose knowledge that is vital to communicate with my children.
My son is non verbal and both my children have social and communication difficulties (autism). Being with them all summer has meant we have learnt to understand each other. My son would only need to find a photograph to show me and I would immediately know what he was trying to communicate because I was there with him and I know what he enjoyed. When other people get involved I lose that vital connection and no school diary or ten second talker can make up for the fact I am not with my child and therefore I have no knowledge of what he is trying to communicate. He may have heard a song at school he wants to hear again and I am expected to just ‘know’ and because I don’t we have hours of self harming, frustration and upset all round.
Neither of my children can properly communicate to others when they are hurt or where. Neither will adequately communicate when personal needs require to be met or that a food may make them feel sick. This is the bit I hate: that not knowing and having missing pieces that they can not explain to me and I have no means of working out.

I know there are some advantages of having other people involved though. It is important my children become more flexible and less rigid in insisting only I can meet their needs. They also do need to learn independence even if they will require support throughout their life. There is also the fact that having some professional involvement can actually help by bringing new ideas, support me and help access resources that can make a difference. We just need to learn to communicate, trust and work together.

I need to let go. After almost eight weeks with my children that is hard. But for my children’s sake and my own it really is important…

To let other people get involved.

Conversations with a six year old about disability

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We were sitting waiting in the car; unassuming, ordinary, an almost everyday occurrence. But the conversation was anything but. I have replayed it in my head a few times now because the insight, compassion and sheer innocence of it all was something very special.

Children see the world so differently. And there is so much we can learn from a six-year-old.

Mummy, we are parked in a wheelchair space” she piped up, so matter of factly.
I know honey, it is ok. Isaac is with us (her twin brother who has a number of disabilities) and I have put the blue badge up.”
“But you have not got his wheelchair?”

That is ok too sweetie as not everyone who is disabled uses a wheelchair. Isaac is disabled but he does not use his wheelchair sometimes. The picture is just used to tell other people the space is for disabled people.”
Well that is a bit silly! I don’t like that sign mummy because it is not right. Why have it for cars? They are not disabled. And it is not right on the toilets too! Wheelchairs don’t use toilets, people do!”image
“I know. But they use it as a sign to mean disabled because wheelchairs are something lots of disabled people use. And on the toilets it is just like the sign for woman and men and changing babies too
“Well the baby change one is wrong too! My brother is not a baby and you take him into the baby change too sometimes. Do shops not think that sometimes big children still need changed and they are not babies? That makes me sad because my brother is not a baby.”
I agree. Sometimes it makes me sad too darling. But it is just a sign and nobody means it to upset people.”

There was a pause while I sorted out her brother who was upset and in doing so I knocked over his parking badge. My daughter noticed and continued…

“Well, if I was disabled I would not want a blue badge…”
Another pause while I wonder how I should reply to this but before I can she continues…
“I would want a pink one! Girls should have pink ones!”
I smile to myself but secretly think she has a point.

“Is the car beside us disabled mummy?”
“Cars are not disabled darling. It is people. And yes either the person driving or someone in the car is probably disabled as they are in a disabled parking bay just like us
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“What disabled do they have?” (I should probably correct her grammar but decide that might interrupt the conversation too much)
“I don’t know. Sometimes you can tell quite easily if they need lifted into a wheelchair or if they use crutches but sometimes, like Isaac, you can’t see what someone is struggling with. There are lots of disabilities people can have.”
“But you can’t ask them can you? Because what if they are like Isaac and they can’t talk?”
“That is true
.”

The rain has stopped so I decide to get both children out the car and into the supermarket but my daughter still has plenty to say. As I hold their hands tightly my daughter raises another valid point.

“Why are all the other trolleys next to the parking bits but the one for Isaac always so far away? Everyone else can walk but he needs help.”

Good question!

imageAs we eventually find the trolley we need and strap her brother in she has some more observations.
“People that help like you mummy are very strong. And I think you need to grow too! The handles are very high up even I can’t reach them!”

Another valid point. This child will go far! She sees things most adults don’t.

She proceeds to carry on talking and questioning and commenting as I try to think what essentials we need. Meanwhile her brother flaps and makes noises and presses the same noise on his iPad continually. I finally make it round the store and pay for our goods.

On the way back to the car the rain has got heavier and my little blue-eyed six-year-old decides having a special bother is actually a good thing.

“At least we got to park near the shop so we don’t get wet. I don’t think disabled people like getting wet so that is why they have spaces near the door.”
She isn’t quite finished…
“If I had a shop I would have spaces for people with children, spaces for disabled people and spaces for people like you mummy.”
“Spaces for people like me?”
“Yes. Ones for tired mummy’s like you
!”
I am not too sure what to say to that idea but I do think it would be very popular!

As I drive the short distance home with them I am so grateful for both of them. Grateful for one who can talk, and question and discuss such subjects as disabled parking, changing facilities and suitable shopping trolleys and grateful for her twin brother who is making these subjects such everyday events and breaking down prejudice and taboos without even saying a word.

What does my six-year-old think of disability? She just thinks her brother is special. He has a blue badge, sits in a special trolley and goes to a different school. But he is her brother and she loves him.

They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

So I am a ‘special needs mum’, more by accident than choice. I have six-year-old twins who have an array of medical and developmental diagnosis. There have been a number of occasions when we have sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnosis and each time brings a huge array of different emotions. But over time you realise that while professionals may give you a ‘name’ for what your child is experiencing there is so much else they DON’T tell you. Here are a few things no-one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.
Having a child with a genetic condition, or a developmental disability or who requires on-going support, puts a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts, and extended family members don’t always know what to say or how to support and so sometimes appear to criticise or upset when perhaps they never intended. It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No-one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.
Even couples who are incredibly close and resilient struggle when you add in the added complication of a child with a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep, make it so difficult to maintain a healthy relationship on top of the caring responsibilities of a special needs child. Then there is the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties, and christening become quite a burden to a family who can not readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.
Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs but often in food, treats for your brave soldier and perhaps time off work. For many families giving up work to become a full-time carer is the only option and that brings with it a drop in income that never seems to get replaced. Private therapies cost and toys with the words ‘special needs’ in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.
When I had no ‘name’ for my children’s challenges people were happy to listen, offer a hug and at the most perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnosis was autism) everyone seemed to suddenly become an expert! We needed to urgently start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected, and criticised for everything from the moment we mentioned the diagnosis! No-one told me that at diagnosis! I wish they had. I might have developed a thicker skin quicker if they had.

5. Diagnosis is the start of a journey not the completion of one.
When you have spent months and years fighting to get your children’s needs recognised and acknowledged, when you have been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place, when you have put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a very long journey. It is three years this month since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I am still fighting his corner, still trying to get people to listen, and still pushing for more support. I naively thought everything would ‘fall into place’ after we had a diagnosis. Sadly that never happened and I have discovered it rarely does. They never told me that at diagnosis. I wish they had. I would have saved some of my strength and stamina if I had known.

6. There will be days or years later you will still be sad.
I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later there would still be days I would look at my child and cry. That does not mean I am not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye) and the tears come easy. And I have realised I am not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore but I still hurt. And that is ok. It’s just no-one told me that on diagnosis day. I would have kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.
I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted and that broke my heart. I thought the diagnosis would somehow define them. But years later I realise that has not happened. As time has gone on people see my children simply for who they are not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children I just call them by name. That is who they are. That is who they will always be. They never told me THAT at diagnosis. Maybe if they had I would have realised it would all be ok.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never ever took my child.

My children are awesome. But they never told me THAT on diagnosis day either. That is ok though. I tell them that everyday anyway!
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