Tag Archives: children

Wobbly Wednesday (or ‘What I Saw Wednesday’)

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By far the most common question I get asked when I mention that my son R has a visual impairment, is “How much can he see?” Although it’s an innocent question which seems simple enough, there is no clear answer for a child (or an adult for that matter) with Nystagmus, the condition my son and I were both born with, which causes an involuntary eye movement. While sight will vary from person to person, the far more interesting fact about Nystagmus is that it also varies depending on situation, stress levels, schema and mood. As part of Wobbly Wednesday, I thought I’d write a little about our own ‘out of the box’ visual experiences with R, many of which were just as much a surprise to us at the time, even with my own experience with Nystagmus, and bringing up a VI child.

So here we go.

Five times my son could see less than expected. (Yes, even with his glasses on!)

1. As a baby, it was nearly impossible to tell whether R could see in any given situation, but once in a while it was extremely evident what he couldnt see. One day at a lunch with friends, one of the guests was speaking, and I noticed R crawling towards the radiator, which I knew was on, and hot. Not wanting to be rude and leave the table, I uncovered an extremely sparkly charm bracelet I was wearing, and dangled my hand down by my chair legs, at his eye level, moving my wrist so that the sunlight and faux gems could attract his attention and move him away from the heater. I was less than a metre away from him.
R, around 14 months old was sitting up, facing in my direction, but however fiercely I moved my arm, he had absolutely no idea anything was happening. Not knowing I was wearing a bracelet, or that I wanted his attention, with no auditory cues, I may as well have been doing nothing at all. I realised how important my verbal cues had been to him up until that point.

2. I am told all the time what a surprise it is to find out that my son has a VI. He runs, jumps and plays like any other 4 year old boy. Thankfully, he has no fear. But once in a while, this can backfire. On holiday last year, he was almost 3, and we were visiting Hershey’s Chocolate Factory in Philadelphia. The room was large, and it sloped downwards on a walkway and then turned to the right. I told R he could run ahead, and warned him that the floor wasn’t flat, an issue of depth perception that we take for granted, but a person with Nystagmus would find it hard to notice. He took a couple of cautious steps, got a feel for the gradient, and ran down the slope to the end. Before we knew it, he was lying flat on the floor, after running into the metal handrail at the end of the room. it being parallel with the wall, he had not noticed that it wasn’t flush with the wall, another issue of depth perception, and had underestimated how much space he had to go before he needed to turn right. This kind of situation, where he feels like his eyes misled him, can be extremely distressing for a child with Nystagmus, and can cause temporary fear. Completely of his own accord, for the rest of the day in this unfamiliar place, he walked alongside us and did not run ahead.

3. We all know the slightly unnerving feeling of coming across someone in a mask or full costume and not knowing who it is, relying on their voice to give them away. A visual impairment makes this so much more complicated. The Jewish holiday of Purim, (think Halloween for a good VI comparison) means that many familiar faces are suddenly covered. While this is obviously difficult, what you may not expect is how much as small a change as a funny hat or glasses, or a design drawn in face paint can confuse someone who is partially sighted. Last year, R joined in with his friends in dressing up, and was unable to recognise people he saw every day and knew well, because of such simple additions to their attire as a sparkly hat. Friends of mine who knew his condition cottoned on quickly, stooping down to his level and announcing their name when they said hello, (a sensible thing to do with R even in a usual situation) but many people rushed past waving at him, or just said hi breezily, forgetting what a struggle it was for him to recognise them now that they had pink hair, or a huge red nose. By the end of the day, he was more exhausted than I’ve ever seen him, and he slept for close to 15 hours that night.

4. It’s okay, he can sit right at the front.  Another reassurance I get a lot from friends and family. But sitting close up does not help in every situation. (Although it is obviously better than sitting far away!) One good example is the first time we took R to a child’s birthday party, once the kids started graduating from tea and cake and onto entertainers. I sat R directly under the nose of the entertainer, and sat next to him so I could point out anything he might miss. For an adult, the misdirection and horseplay is obvious and predictable, but we forget that our children are seeing all of this for the first time. When the entertainer held his wand behind his back while it flip flopped all over the place, complaining bitterly that he couldn’t find his wand ANYWHERE, looking out into the crowd of children laughing and pointing behind him, my R looked at me blankly. All he could do was follow the entertainers eyes and instructions, which were telling him nothing about what he should be focusing on. The children’s raucous laughter only made him feel left out, which to be honest-he was. Quick tricks with lightning fast fingers meant nothing to him, and fiddly characters looking out of windows and hiding back down again, met with cheers and whoops from happy kids, but confusion and stress from my own. After 5 minutes, he started misbehaving, and after 10, I took him out of the room. His speech delayed, I was moved to tears when he turned to me and said clearly, “I just couldn’t see that.” Nowadays, friends may be offended when I show up late to those kind of parties, bringing him for birthday cake and music rather than the sit down and watch portion of events. But it’s not something which can be solved by him sitting at the front, or another common answer, getting him stronger glasses.

5. Another common struggle is when something isn’t where it’s ‘meant’ to be. R, like I’m sure all VI kids, likes to make his visual field easier to navigate. That means that every single thing has a place. If it isn’t where he left it, even if it is 3 inches to the right, it may as well be in Siberia. As a toddler, he would wait for all the other kids to finish playing with a particular activity at nursery, so that he could put it all away and put it back in it’s right place, for fear of not finding it later. He will talk to me sitting on a particular chair, run off to play, and then run right back to the same chair to show me something else, stopping suddenly about half a metre away from it, because it takes him that long to realise I’m not there any more. If someone appears out of context, where he doesn’t expect them to be, he will not name them until they name themselves. If a person is where they ‘should be’ however, where he expects you to be, he might be able to wave at you from across the room, or maybe even respond if you motion him to come here without words. That doesn’t mean he’s being naughty the next time he ‘ignores’ you, it just means you caught him knowing what was expected of him or in a situation which he found visually easier. Maybe it was a familiar place, maybe he already walked past you and took note of where you are or what you were wearing, maybe he simply slept better the night before and it’s helping his sight today.

There is clearly no easy answer to “How much can he see?” but I don’t mind you asking. I know that it’s a complicated response, and I appreciate anyone who tries to understand it. The only comments I don’t know how to respond to are “Oh wow, he saw that Aeroplane!”  or “I’m sure he recognised me from across the playground!”  because yes, sometimes it may seem like I’m making a fuss about nothing, or that his vision is as good as any other kid in specs that you’ve met before. And some days it is. Which is why most of the time I love how no one has to treat him any differently from his peers. And I’m so proud to know that you can be happy for all that he can see and achieve. But if you happen to come across him on a day where he needs that bit of extra help, I’d really appreciate you knowing how to do that too.

Wobbly Wednesday is today! It is a day of fundraising for better understanding, support and research of Nystagmus and it’s sufferers.
To help, you can Text WWNN14 £ and the amount you want to donate to 70070 or visit https://www.justgiving.com/nystagmusnetwork/donate

The Lying Game

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A Jason manford comment made me think recently. (I know, it’s surprising.)

The quote was a version of the following: That when an adult asks what he thinks happens after death he says he doesn’t know but probably nothing. When a kid asks the same, he can’t help but talk about heaven and angels and fluffy clouds.

And I was so grateful to have a faith. Not because I think I’m better than anyone else, or that my answer has more validity than yours, but because I believe in absolute honesty with my son. Don’t get me wrong, there are plenty of things he doesn’t need to know. But if you listen to their questions carefully, most children want an answer you can give in an age appropriate way. When a three year old asks where babies come from, the answer ‘Mummy’s tummy’ will normally suffice. When they point to a man sleeping rough on the street and ask why he’s asleep on the floor, your child probably won’t question you further if you tell them he doesn’t have a house. And if they do question further? Well then that’s ok too. I’m comfortable to keep giving information layer by layer until their curiosity is satisfied. I see it as a privilege actually.

But I wouldn’t know how to begin to look a child in the eyes and tell them that there is nothing else but this world. To tell them that grandpa has been buried in the ground and that’s it. If that’s really what I believed, that this world is all we have, that our actions are meaningless outside of the eighty or so years on earth we are given, I would not only be at a loss for answers to my children, but I think I’d find it pretty hard to get out of bed myself.

Why do good things happen to bad people? Why does tragedy strike the most worthy of us? Why do some people have to live with illness, or poverty, or heartbreak? The answer that the world is random, that things just occur for no discernible reason is just not good enough, even for me, let alone for an inquisitive child whose favourite word is why.

But truthfully, if I COULD look myself in the mirror and accept those facts as random and meaningless, I would try and explain those beliefs to my children too. We want to protect our kids from painful truths, so we try and sugarcoat things. I get that. But in my world, where I’m not even that comfortable with the tooth fairy, (unless everyone concerned is very clear it’s a game, and it’s all done with lots of heavy winking and tones of jest to make that really evident) I’m not interested in putting an icing glaze on the big issues.

I saw a forum conversation recently about how to explain death to a 3 year old. The answers were really helpful to the original poster, but I read the entire thread in my usual judgemental way, and was left unsettled when I finished. “We told our son that grandpa lives on the moon.” “We told our daughter that auntie Beth is a star now, and then we chose a star for them to look out for so they could wave at her.” “We told our kids that their great grandma moved to Australia, which is really far away so we won’t be able to see her any more. After all, why upset them?” “Our twins were only just three, so we just told them that grandma was feeling too poorly to see them – after a while they stopped asking.”

I don’t doubt that these answers cause less upset in the short term, and maybe by the time they realise you are lying to them, (because that’s what you’re doing, it’s not sugarcoating, it’s lying) the immediate pain of the persons passing is over, or they can deal with it in a more mature way, but what of your relationship with your kids? Their trust in you to be able to face the hard situations with them as well as the straightforward or enjoyable? It seems to me that when the real answers come out, all your kids have learned is that death and dying is something to be so afraid of that it’s better to make up a story than talk about the truth.

For me, death doesn’t need a sense of magic or fantasy. And the truth is, it’s a matter of faith pure and simple. At some point, you have obviously come to your own convictions about what happens after you die, so why not have the strength to share these with your child? I feel lucky to believe in heaven, but I would still start this important conversation with the disclaimer that “no one knows for certain what happens when a person dies but I believe…” As long as your child leaves the conversation knowing that the person who is gone isn’t in pain, isn’t sad, and isn’t scared, so they don’t have to be either, what are you worried about?

The meaning of death and dying, along with illness, sex, and any number of other words, are our responsibility to teach. They are brand new concepts to our children. They aren’t inherently scary words to be afraid of. They are whatever we want them to be. Do we want them to be a lie? Surely it’s our job to teach not only the meanings of the words, but also the emotional responses to these facts of life, in a clear and open way without relying on the quick fix of deception.

That’s how I feel today anyway. Ask me again when my boy loses his first tooth and I don wings and a sparkly pen to creep into his bedroom and retrieve it.

tooth fairy

Overworked and Underpaid

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We writers have a special ailment all to ourselves. Arriving without warning, with no hint to how long it’s going to hang around, and no hard and fast cure (although many old wives tales to try while we suffer) this is known as Writer’s Block. It attacks our inspiration, it stifles our muse, and leaves us with ineffectual fingers hovering uselessly over a keyboard, or nibbling absent-mindedly on the end of our pencils.

Once in a while though, something magical happens and an event occurs which causes the complete opposite of Writer’s Block. Writer’s UN-block if you will. It generally happens like this. You see something which is so obvious, that the words pretty much write themselves. A gift from the universe, an article fully formed in visual form in your minds eye, before you’ve even opened your laptop.

That happened to me this week, at a place which is well known for its inspiration to me, Soft Play.

But truthfully, once I got home, I realised that this is one of those cases where a picture really does speak a thousand words. And all I really needed was a title. So here we go. I had many runners up, but I find the beauty of my choice is that it can be read as entirely sincere, or as totally sarcastic and judgemental. I’ll leave you to decide which way I meant it. Enjoy, and you’re welcome.

Who says Dads nowadays don’t do their fair share? 

This looks like a totally unobtrusive place for a quick 40 winks.. I'm sure the 4 year old will watch the 1 year old... Zzzzz...

This looks like a totally unobtrusive place for a quick 40 winks.. I’m sure the 4 year old will watch the 1 year old… Zzzzz…

Eight Years On

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I grew up with a father who loved me more than any single thing in his life. He put me first, he loved me fiercely, and he would have done anything in the world for me. Eight years ago this week he died, and as most of you who read my blog know, it is a loss which I carry with me daily. It hits me unexpectedly, it catches me unawares, and yet sometimes it also arrives with a punctuality I almost admire; on birthdays, on anniversaries, at moments when I know he would do anything to be there. It’s a dart through my heart and yet I feel it in my throat. choking me, blurring my voice with tears until all I have are my fingers to write, or the very emotion of it will drown me entirely.

Like I said, none of this is news to those of you who read my blog. And tonight is a dark night with my grief. But he brought so much light into my life, so much kindness and joy, and that should be remembered as well. So this year, I’m going to try to push aside the crushing weight of the loneliness, and blink through the stinging ferocity of my tears, to tell you eight things about my daddy, eight little pieces of light which I’m remembering this week, on the eighth anniversary of his death.

1. My parents divorced when I was 2 years old, so I have no memories of them under the same roof. My main memories of my dad as a child are ‘weekend’ memories. Walking the journey from my house to his together on a Saturday morning, playing the number plate game and 20 questions. Being tucked in a bed that was never quite ‘my bed’ and playing silly games like a version of hide and seek where we hit each other over the head with a long green polystyrene tube when we found one another. As I got older, he played board games and card games with me tirelessly, and it’s only now when I think about how exhausting it is playing with my own son, that I think about how he never suggested he needed a rest.

2. As I got older, and craved more independence, he used lifts as a way to spend time with me. In high school, he offered to drive from Hendon to Mill Hill to pick me up every afternoon after school, driving me to Wembley and then himself back to Hendon. It must have been a nearly two hour round trip, to spend 15 minutes hearing about my day. What naivety I had, the days I turned him down so that boyfriends I barely remember could pick me up, or so as not to miss out on the bus gossip. I must have thought that time would be endless for us.

3. The year before he died, I was 18, and we talked more deeply than we had the whole of my life. He told me the reasons why he made aliyah to Israel, and how frightened the decision made him at the time. How happy he was there, how much he felt like he belonged. How he carried around in his wallet a dollar from the first pay cheque he made in Israel, a dollar I still have to this day. He gave me Zionism as a gift, packaged up with happy stories as wrapping paper and fierce belief as a ribbon around it, and told me how important it was that we had a homeland. He taught me with his actions that even though he had been forced to return to England, we should never stop striving to be there.

4. He told ‘Dad jokes’ more often than anyone I’ve ever known. Tell him something was cool? The reply was inevitably ‘has it been in the fridge?’ He would ask what my hairstyle was called, only to hear me say ” a bun” so he could reply it looked “more like a doughnut.” If I made similarly terrible puns in response, his answer would be an expression I to this day have never heard anyone else use, the weird sounding, archaic, yet grammatically correct, “very comedical”.

5. His best friend was my mother. Despite the divorce, despite a fierce custody battle, and years of ups and downs, the very last day of his life he spent on an outing with my mum. They were closer than many married couples, and I put much of my own happy marriage down to the kindness of only a handful of unhappy memories of the two of them together. There were times they understood each other better than anyone in the world, and times where they were making the effort just for me, but I never once in my life felt put in the middle by him.

6. He had magic. Instead of a toy kitchen or a workbench, we had a puppet show and hundreds of card tricks. He made up songs and remembered the nonsensical lyrics long after he remembered why we made them up to begin with. He used to write me birthday cards from all the stuffed animals I had. Not just when I was little, I still have the one for my 19th birthday, four days before he died, signed by Tom Teddy and Herbert the Hedgehog.

7. My son R reminds me so much of my dad. Whether it’s his bright blue eyes, so different from our green ones, his kindness and interest in animals, when we have little interest, or the uncanny way in which R reaches straight for a map when we arrive somewhere and peruses it throughout the afternoon, with the exact same studious expression that my father did.

8. I tell him about his Zeida in little snippets, how he sneezed so loudly that strangers often screamed, how he gave me my first bike and ran alongside me while I practiced, how he made me spaghetti every Tuesday evening, and let me have as much ketchup as I wanted on top.

I tell him how much his Zeida loved me, and how much he would have loved him too-had he been given the chance. And then I tell R not to worry, that I have enough love to give him for the both of us.

Keep Listening

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I recently wrote an article about how difficult and frightening it can be as a parent of a child with a special need, when it comes to approaching your child’s teacher. I discussed the fears and the expectations we all try to balance daily, and the fierce ‘mama bear’ instinct that can be so hard to suppress when we are advocating for our children.

This instinct doesn’t only rear it’s head when we are facing a particularly difficult or frustrating situation, It is there all the time, and probably exists outside of the special needs world as well. It’s an overwhelming urge to do the most you can for your child; a surety that our children give so much just to get through what would be second nature to their peers, that they deserve to have equal opportunities, and sometimes perhaps more than the children around them. Like any parent, we want our kids to have everything. But they sometimes need that bit more help.

Once in a while, we meet a person or a teacher who goes above and beyond. Who waits outside the building to meet you in the morning, because the room looks different today and they know your son doesn’t like change. A friend who brings an extra copy of the story book to rhyme time so that your child doesn’t have to simply sit and listen to words which refer to pictures he can’t see. A teacher who takes the paperwork for his statement home to make sure all the t’s are crossed and i’s are dotted before an important deadline. Who never forgets to crouch down to his level to say good morning, so that he can see their facial expression clearly and know who is speaking to him. Someone in your life who phones you before booking their own child’s birthday party to see if it’s accessible for yours. A visual impairment specialist who somehow knows exactly how to bring your child out of themselves, help them learn confidence and social skills and pride in their own abilities. Who not only encourages your child to be the best they can, but encourages you to give them the freedom they need and simultaneously find confidence in your own parenting.

Those of you who follow my blog will know that my writing is broader than any specific person or place. I am overwhelmed by the response I have received for my special needs article, from parents in countries around the globe, whose children vary from toddlers to teens, all of whom have sadly experienced the emotions I wrote about. I am so glad that my words resonated with all of you, and I truly hope you’ll forgive my foray into the personal just this once, and that the following speaks to you too.

Because once in a while, as the parents of a special needs child, you have experiences that make you forget why it is ever difficult. This week, my 3 year old walked out of nursery with a ‘welcome to big school’ folder, with all the same photos and drawings as his peers. The only difference was that unbeknownst to me, his folder had been made 3 times the size of anyone else’s. My heart burst with joy as he easily showed me who he will be taking with to big school, and explained to me what every page in the folder meant. And the ‘mama bear’ inside me was proudly redundant.

This week, as my son says goodbye to his nursery, I am sad. He entered the building barely two years old, with no language, little confidence, and zero understanding of his own limitations. Among so many other incredible leaps, he can now clearly tell me when he cant see something, is strong enough to ask for help, and yet somehow still has no idea that there is anything in this world which he cannot do. I couldn’t possibly ask for more.

Being the parent of a child with additional needs is often hard, and there is no setting or person in the world who will know your son or daughter and what they need as well as you do. I can only hope I continue to find people in our life who go above and beyond to ensure he is always as happy and secure as I saw him this week.

Do as I say, not as I do?

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I saw a post on a forum recently that made me think. The lady in question was asking for advice on making friends. She is a stay at home mum, and lonely. The friends she does make, she feels like it is only ever her who is making the effort, and they disappear if she stops doing so. She joked, in the way we all do when something is too painful to address head on- that when is she unwell or out of action, the only people to notice are her parents.

We tell our kids to be nice to everyone. We chastise them for leaving someone out in the playground or for excluding one of their peers from a birthday party list or a play date. And when they come home and say that little Jane Smith is not their friend, or remark that they don’t want to play with Billy Jenkins, we are full of ready encouragement to build bridges.

“I’m sure she is lovely when you get to know her”

“It’s not nice to call someone boring. Maybe they were just shy”

“Give him a chance, I’m sure you have lots in common.”

If our children become openly rude, or ignore us, we often resort to threats.

“If you aren’t nice to people, they won’t want to play with you.”

“Remember, you won’t get invited to Sally’s birthday if you don’t invite her to yours. And her mummy says she’s having a Frozen theme…”

But at what point do we change the rules? As adults we readily accept we can’t be friends with everyone. We hoard our free time zealously and portion it out to the creme de la creme of our social circle, the people who make us feel fabulous, who bring out the fun in our lives, the ones who really understand, those who are in sync with what makes us, us.

We might not be as blatant as the average four year old, but don’t we all have our ways of saying ‘you can’t play with us’?

It wasn’t a big deal, I just had a few people over.

Oh, I didn’t see you or of course I would have invited you to join us!

I didn’t know you would be interested in coming with, definitely next time, remind me.

Some of us are nicer than others. We make the small talk, we invite those along who would obviously feel left out or hurt. But at the end of the day, life is busy. We all have kids and jobs and homes and responsibilities, and our time is never our own. We all repeatedly choose one thing or person over another, even down to as simple a choice as whether to call back a friend, or use that precious time for 5 minutes peace and a cup of tea.

I don’t have a judgement to make. Although I have been a victim of it from time to time, generally I’m probably one of the worst culprits of this cliquey behaviour. I make snap judgements about people, I hate it when friends invite a third person along on an outing, regardless of how nice they might or might not be, I just don’t really want new people in my life most of the time. I have zero patience for those that for completely arbitrary reasons get on my nerves, and probably the worst of the list, I don’t dislike any of this about myself. I have no desire to be a nicer person or to be the one who goes out of their way to make the new girl feel welcome.

I just wonder what I will say when I have a 4 or a 5 year old. When R starts deciding he has an opinion on his birthday guest list. Can I in good conscience tell him he has to play nicely with everyone, when I don’t follow my own rules? And why bother anyway, when it’s only a matter of time before he learns the euphemistic language necessary to tell people to go away in a socially acceptable manner.

In fact, maybe I should just teach him that instead.

It’s almost worth it for the day I receive that call from his teacher.

“Mrs Sokolic, your son has told one of the other children that ‘Usually I’d be happy to include you, but we’ve had this game of hide and seek organised for a while now, and I wasn’t the one to set it up…. so….'”

poplar trees

 

Start Listening

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I have never felt so helpless in front of another human being.

I have been a child, strapped into a highchair or a car seat, wriggling for freedom to run and play. I have been a teenager, full of angry hormones, shouting and demanding independence and insisting I know best, met with inflexible rigidity. I have been a woman, crippled with labour pains, fighting against my own body for release and comfort. But standing in front of you, I have never felt so acutely another persons hands wrapped casually around my heart.

You are my sons teacher. But I am his mother. To you, that title may not mean much. Yes I gave birth to him, but I do not have any qualifications or certificates to prove my worth. I don’t have years of experience or references from children now grown. I don’t have a shiny laminated badge with my credentials, and I can’t issue you a formal letter with expectations or give you any funding or resources.

But that title. That word. Being a mother to that little boy means I know. I know the obstinate way he mutters under his breath crossly when he’s done something naughty, I know that as soon as we walk in a room he will be counting the lightbulbs, (including which ones are faulty.) I know from how far his head is tilted to the right how much difficulty he is having seeing something, and I know from the subtle head wobble when he is too tired to try. I know when his frustration at being left out or overwhelmed is causing naughty or difficult behaviour, and I know when it’s just a symptom of the dreaded threenage years like any other fully sighted child.

You are his teacher. But I am his advocate. I’m the only one he has. And it’s a ferocious balancing act throughout which I’m scared nearly all the time.

Scared to argue my case, because I know that we’re paired together my son and I. Who knows how I could unintentionally offend you and without any malice on your part, have it taken out on my helpless child? Frightened of not saying enough, and leaving him without the same opportunities that so many other children and parents take for granted. Practising with my husband in the morning before I approach you, trying to find that elusive tone of voice, or expression that will make my words appeal to you. Hoping that you will put aside the issues of resources and check-boxes, and just look at this mother who has no pride, and would crawl over hot coals if it meant that you would believe she isn’t hysterical, she isn’t trying to upset you or make your life harder, she’s just acting on the most basic instinct on the planet, that of a mother protecting her young.

I am one of thousands of mothers whose child needs that bit of extra help. We shouldn’t have to write letters or shout loudest or cry tears to be heard. We shouldn’t have to pick our battles and decide which parts of our children’s school life aren’t as important for them to access if it turns out that we can’t fight for them all. We certainly shouldn’t have to feel scared that we’re going to be ignored or condescended to or fobbed off with excuses when we summon up the strength to stand our ground against the system.

But in a world where these situations are often the sad reality, please acknowledge how it takes immeasurable courage for me to approach you. I am the advocate for my son. I’m the only one he has. For the time being, I am not only his eyes, but also his voice. And I’m asking you to stop simply hearing me, and start listening.

The Chocolate Wars

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I have a pretty enviable three year old, who does what he is told. He looks for my hand as soon as we get near a road or into a car park, he isn’t a screamer or prone to tantrum, he always says thank you, and he never ever takes things without asking.

Well, he never used to,  anyway.

The last two weeks I have woken up in the morning to various ‘surprises’ in the kitchen. Empty wrappers, chocolate crumbs, empty spaces where expensive imported treats used to be.. All before 7am. After receiving various pieces of advice, I decided to chronicle the events, for other judgemental parents worldwide, and as a testament to the last few weeks of my life-if as I suspect, the stress of this early morning battle of wills actually forces me into an early grave.

Sunday May 11th
Hubby calls me into the kitchen, to be greeted by a virtual mountain of Reese’s cup wrappers. I count the damage, 9. I’m torn between shock that he would take them and eat them without asking, and hope that I don’t have to deal with projectile vomiting elsewhere in the house. I go find R, and after naughty corner, sternly tell him it is not acceptable behaviour, and there will be no treats for the rest of the day, and take away a stuffed toy. No tears from him, but those punishments are usually the end of it in our house, so I get on with the day.

Sunday May 18th
Had almost forgotten about last week’s ‘mishap.’ About 7.30am, I went to throw some rubbish in our kitchen bin, and was confronted by an empty bag of giant milky bar buttons. A bag I could have sworn had been half full. So unsure that it would have happened again, my first instinct was to ask the other man in our house. “Darling?” I called through the bathroom door. “Did you wake up in the night with the munchies, and finish off half a bag of giant milky bar buttons?” Surprisingly, my hubby was not the culprit.

This time I got really angry. Especially after asking R if he’s eaten anything from the kitchen and getting a negative response. Stealing, Lies, Deception tactics… was my son on the road to a juvenile detention centre?! Overreactions aside, (after three minute naughty corner for us to confab) this time we took away iPad, (more of a punishment for us frankly) and favoured toys for a week. Niggling thought in back of head that we needed a consistent punishment if this was going to become a habit. Also occurred to us that taking away treats doesn’t really work when the child in question has already had more chocolate that morning than you would ordinarily allow in a week.

Monday May 19th
“He’s done it again.”
No one wants to wake up to those words. Not for the second day in a row. I blearily went into the kitchen, to find a Musketeers Bar gnawed on on the floor. Should I be glad he at least didn’t try to hide it today? Unimpressed by the peanuts, he had bitten off all the surrounding chocolate, leaving a pile of shavings on the floor. I literally gave birth to a hamster. Sigh.
Again, he denied it, even when faced with the evidence. He started pulling funny faces, looking cross, and basically acting.. well.. three. Eventually I was rewarded with the indignant, “What?! I was so hungry!” which surprisingly didn’t make me feel any better, especially as he had been given a full cup of Cheerios about a half hour beforehand, still untouched in his bedroom. We decided on a consistent punishment, but I have a feeling it’s more about getting through to him.

I turned to social media, and as we all do, asked a question I already had my own opinion on, and waited for someone to agree with me. Should I move the choc to a cupboard out of his reach, or find a consistent punishment and stick with it? I had an overwhelming response towards option number one. Nearly everyone agreed that he was too little to deal with the temptation, and I was causing myself more hassle than necessary trying to get the message into his little boy head.

Of course, like the majority of us, I couldn’t care less what anyone else’s thoughts about my parenting are, and decided to ignore popular opinion and keep at the consequences approach. Short term pain, long term gain. As easy as it might be to just avoid the problem and move it all away, by persevering I would teach R that he can’t have whatever he wants without asking, that lying is wrong, that gluttony is wrong. It would be worth it in the long run when I had built up a three year old who asks permission, who knows that just because something is tempting, it doesn’t mean he gets to just take it. I would be raising a man who is loyal and honest and has patience, and is TRUSTWORTHY.  Either that, or just less calories for me to inhale in the mean time. Win Win.

Tuesday May 20th
Success! No chocolate eaten, one happy little boy reunited with the iPad and lots and lots of praise and play. Oh all of ye of little faith out there! I had an excellent talk with him, explained all the reasons why he can’t help himself, and here are the results. Smug mum alert. I knew I could get through to him.

Wednesday May 21st
Er… May have spoken too soon, if the remains of an ENTIRE EASTER EGG in the bin this morning are anything to go by….
Again, greeted by denial and angry face, and eventual insistence that he was “very very hungry” and then that I was “not at ALL splendid.” (Cue fist in mouth to muffle snort of laughter and maintain stern face.)

If this hadn’t already become a matter of principle, I think I may be ready to move to the ‘move it’ camp. But hey, who DOESN’T love banging their head against a brick wall eh?

We have now enlisted nursery to help, with his favourite Auntie coining the hashtag, “Big Boys Don’t Take Without Asking.” I love it; we’re printing t-shirts.

Not quite, but we have made a fetching sign together, and dare I say it… I *think* he gets the message this time.

Agree with me? Think I’m mad? Feel free to post below. I can only hope this is the end of the saga, but something makes me say “To be continued…”

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Disneyland Paris… through his eyes.

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As many of you know, my son has a genetic eye condition known as Nystagmus. Those of you who have met him, will notice his involuntary eye movement, like a pendulum from side to side. You may know from me that he is partially sighted, as it would never be obvious to look at him, he is fiercely capable in almost every situation.

But when we booked to take him, age 3 and a half to EuroDisney in Paris, I can’t pretend I wasn’t nervous. The noise, the crowds, the simple newness of it all can be a recipe for disaster for even a fully sighted child, let alone one who struggles when we move his coat along a peg without sharing the info first. So when the Nystagmus Network, a fabulous charity working to provide support and information for us all, asked me to write a blog on what turned out to be an incredible trip for all of us, how could I refuse?

EuroDisney has an excellent accessibility policy which covers a wide number of disabilities, and the staff are happy to answer any questions you might have about the parks suitability. As a disclaimer, this blog can only comment on visual impairment, and even then only specifically on Nystagmus… And even then, really on my particular little boy. Hello? Any readers left? … Oh hi Husband.

The first thing you need to know before you book, is that you’ll need clear medical evidence of your child’s condition. We used his sight impairment card, and also took a couple of recent hospital reports which detailed Nystagmus and his difficulties with bright lights, crowds, loud noises, and the like. Truthfully they were happy with just the card, and seemed familiar with it too. Go straight to city hall, on the left once you enter the main Disneyland park, and present this evidence, and they will give you a green card, ticked with visual impairment on the back. On the front it will detail how many people the card admits to an attraction. There were three of us, and the card can admit up to six depending on the individual circumstances of the card holder. Note: this counts for all rides and attractions, but not for parades and shows. (See below.)

Once you have the card, you will not have to queue for any ride in either park. Just look for the disabled sign at each ride, (no mean feat for a sight impaired child and his sight impaired mother!) which is usually by the exit, and a staff member will be along to help you. You will need to show your card for each ride, so keep it handy, and try not to lose or destroy it. One extremely capable parent had somehow managed to have hers laminated, a feat which will keep me puzzling for years to come. Does she carry a pocket laminator around with her?

Nystagmus parents will know, that simply the passage of time itself, as well as any new environment is truly exhausting for our wobbly eyed little ones. Standing in queues, waiting in crowds, sometimes for up to an hour, all for a two minute flash of a ride, is either impossible, or not maintainable for longer than a ride at a time. The card meant that we could get on average three times as much done as those without it, meaning that although we would still need to take a long break for him to sleep or rest every two or three hours, it would be after 10 rides rather than 3. There was still waiting, for rides to begin and behind others with a disabled card, but it was usually in an emptier space, often with seating, and never for longer than five minutes at a time.

The other amazing plus was that we could get off and on the same ride sometimes 3 or more times in a row, using the first time round as a ‘getting used to the feelings/sounds’ and then subsequently pointing out what we thought he could see the next time(s) round. The staff were really helpful and lovely about this. Just remember to get off at the end of the ride, and ask the staff where the best place to wait to go on the ride again would be.

One further note on the rides, which we didn’t think of before we left. An unexpected discovery for us was how much our little man enjoyed the roller-coaster kind of rides. Where he was tall enough to go on, these were by far his favourite. Debriefing in the hotel, we think we can understand why. On those rides, it is a purely sensory experience where he can stop working hard to see and just let go and enjoy. Dark tunnels, light outside, fast movement in every direction, no one on the ride knows what’s coming next, and no one can see anything at all, in fact- there is nothing to see! If your LOs are of the brave variety, I would really recommend being courageous yourself and taking them on Thunder Mountain. I rarely see my son that freely enjoying himself, with no hard work on his part whatsoever. Just wait an hour or two after lunch.

A word on the shows and parades. Disney is known for its productions, and there are various shows running all day long. The staff will be as helpful as they can be, but the disabled areas are not close to the stage in all the theatres we tried, (being more set up for wheelchair access etc) and parents do not stop to look at your disability card before elbowing you out of the way with an Elsa wand so that they have the best view for their hyped up candy floss filled youngsters. Once people are seated, they will not move anyone to make space for a visually impaired child.

You may decide that all the shows are just therefore entirely unsuitable, and you will still have plenty to do at the parks. but where you can, present your green card, and bat your eyelashes, and ask at the door whether you can reserve a seat for a later showing,. This also has the benefit of being able to ask for something specific. (For example our son sees far better on the left than right.) Make sure they write the request down, as staff changes often on the admissions desks.

In terms of parades, it’s a little more complicated. The disabled areas give the best views, ensuring no one will be standing directly in your line of vision, but at the end of the day, it’s a parade! It’s fast moving, lots of colour, lots of music and no way to prepare for each new float ahead of time. The characters were brilliant, coming right up to the barriers to shake hands and wave at the kids in the disabled area, which made the parade worthwhile for us, even though I don’t think our LO got a great deal more than that out of it. Coupled with the fact that the card only admits one carer at a time with the child, meaning we had to separate, after that one try on the first day, we skipped the parades and used the time to get food and drinks where the queues were shortest. The night time Disney Dreams show in particular is late at night, full of loud noises, fast changing pictures, confusing colours and large crowds. Just to make things even easier, you can not stand anywhere remotely close due to the fireworks. Our son immediately asked us to “turn it off” and spent the remainder of the show in a frightened cuddle.

The Disney hotels, Cafe Mickey, and various ‘character meets’ around the parks meant that I personally didn’t feel like he was missing out by not seeing the parades, but it’s definitely something to bear in mind when planning your trip, especially with fully sighted siblings in tow.

I was incredibly impressed with both Disneyland Paris itself, and the accessibility policies they had in place. A number of decades ago, children like my son would not have been able to walk through the park gates without a meltdown of epic proportions. We would have managed maybe two rides a day, and certainly no shows or parades. The whole experience would have been miserable. We are extremely lucky to live in a time where disabilities of all kinds are recognised and worked around. and EuroDisney are certainly to be commended for their work to provide equal opportunities for all visitors.

As with any experience in life, there were elements of our stay which were out of our son’s reach, but these largely went unnoticed. Thanks to a little organisation on our part, and incredible effort and thought from the magic of Disney, the wobble in his eyes was far outweighed by the wonder.

Just don’t mention the edible glue.

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I never had birthday cakes. As a kid I mean. I admit, it’s not the most often cited form of child abuse, so I can imagine you’re finding it hard to drum up appropriate sympathy. I doubt the NSPCC often whisper in hushed tones about birthday cake neglect as they try to rehouse badly cared for children. “Y’know, I heard he had to make do with cupcakes. And they weren’t even chocolate. I shudder to think.”

But it’s true nonetheless. I think the word ‘never’ might be a little harsh, as I have a couple of photos pre the age of 5 of me standing in front of store-bought rectangular monstrosities with calligraphy Happy Birthdays and chalky icing numbers that would never taste as good as they looked. After that age, I remember the odd year where I could sneak a supermarket-bought chocolate cake underneath the rest of the shopping in the trolley, once we’d checked for a V for Vegetarian of course. Our aim in life being to appear to the world as ultra-orthodox even though we were in reality nothing of the sort, these had to be eaten quickly and stealthily, and the trappings thrown in the outside bin so that no passing visitor (like my brother for example) would see that it wasn’t ‘strictly kosher.’ Eating cake in secret wasn’t something I would ever learn to enjoy, the self loathing pretty much overriding any of the butter-creamy goodness they ever had to offer.

So perhaps it’s more honest to say I never had the birthday cake ‘experience.’ No candles to blow out, no friends singing embarrassingly at me, no parents up to their elbows in fondant the night before the big day, cursing at Thomas’s funnel for refusing to stand upright. If I’m honest, it’s that last part that bothers me the most. I’m not the most creative person in the world, and a step by step recipe is going to be the least of my expectations if I’m going to make anything half recognisable, but making my son a birthday cake every year is one of the ways I say, “I know you.”

I know that before you were one, and you couldn’t even see our faces, reading the Gruffalo out loud was the only thing that could calm you down, so committing the entire book to memory was the least we could do for you. We spent the best part of that year regaling audiences across coffee shops and shopping malls and London transport whenever you were cranky. I’m pretty sure a couple people missed their stops to find out how that crafty mouse escaped consumption.

Before you were two, and you began to enjoy the world, you learned to reach out and have your own effect on your surroundings, lifting flaps and beaming at the results of your own hands. We read Dear Zoo over and over again, buying every version we could find. The devil makes work for idle hands must be based on a toddler, as keeping a book in your reach was the best way to keep our house intact.

This year, almost three, and you are making your own sentences, demanding to ‘read’ books to us, and with the patience given at birth (not mine, his) we listen to your babble with the odd word thrown in for good measure.  Each step I follow in making your cake this year is my way of showing how proud I am of your achievements.

I met a five year old recently who had been given a guitar cake for her birthday. “Amazing!” I exclaimed in my special over excited voice I reserve for children and the mentally challenged. When she shrugged I decided to probe further. “So how long have you been playing guitar?”

“I don’t.” She replied forlornly. “I play piano and recorder.”

Hello nspcc? It’s me again, I don’t think you’re understanding the gravity of the situation. She plays recorder, and the cake was in the shape of a GUITAR. That’s not even close frankly. It’s not even a wind instrument… .

It was like looking in a mirror. Over the top or not, slightly crazy or otherwise, this nugget of ‘I don’t know you’ from my own childhood has stayed with me. And so, I’m a little bit obsessed with birthday cakes. Weirdly enough, the birthday itself I can take or leave, buying random gifts last minute on Amazon, and choosing cards based on the ‘least awful one in the bargain bin’ criteria. (All I’m saying is, if I have to buy a five pound card, you aren’t getting a present. Or a card for that matter.) I’m not even a fan of the happy birthday song, as frankly I think if we all put our heads together we could do a lot better both musically and lyrically, but damn-it if I’m not going to get you double figure ‘likes’ on your cake photo on Facebook.

So it’s definitely not birthdays in general I feel passionately about. Although I’m glad I have one.  I once knew a man who had no idea when his birthday fell, or even how old he was. This to me was extremely newsworthy.

But.. but… how do you fill in forms? How do you sign up to things online? What’s life like without that oddly satisfying feeling of seeing your birthday written down on a pint of milk or a movie poster, like a private joke between you and the universe?

He seemed unperturbed, but I wasn’t interested in letting this go.

How did you ever get employed anywhere?!

“Ah, Mr Smith, lovely to meet you. Please do sit down and let me take a few pieces of basic information before we start the interview.”
“Sure, go ahead.”
“Full name?”
“Mr Horatio Brandon Smith.”
“Gender..? Male… Good, UK citizen?”
“Oh yes, for over three decades now.”
“Excellent. Date of Birth?”
“Ah… well actually… I’m not sure.”
“Sorry, I said date of birth. -pause- your birthday.”
“Yes, I don’t actually have that information to hand.”
“How about year of birth at least? … -awkward pause-  How OLD are you?”
“Cant help you there. Somewhere between 50 and 60 I would guess?”

It blew my mind. I mean, when does he have cake with his name on? Just randomly when he feels like it? Has he chosen a day in replacement? If so, how did he choose it? Statistically most people are born in August. Would he go with probability, or purposely choose a less likely month for fairness sake? I still have so many unanswered questions! Unfortunately, we never traded contact info, and it’s hard enough to track people down, let alone without a date of birth to go by….

This generation, birthdays have become a much bigger deal, with endless yummy mummies making their fortune with at-home bakeries sure to make even the pickiest birthday brat girl beam. And if like me, you’re a little bit hysterical and have based your worth as a parent on making the cake from start to finish by yourself, it’s much easier to be creative. Spending a mortgage payment at a shop called Sugar Shack, which is basically baking erotica, and armed with a step by step recipe pilfered from the Internet, I am now in possession of all the cheats necessary to make me a temporary Nigella. Edible markers, edible glitter, edible paint… Another plus of Sugar Shack is the ease you can convince your other half it’s a necessary investment just by reading out the names in your shopping basket. (Just don’t mention the edible glue.)

I’m not naive about the likely reception to my efforts. At the grand unveiling, I fully expect more praise from old high school friends I haven’t seen in a decade than I do from the eponymous hero of the cake itself. I imagine R looking briefly at the masterpiece, sussing it’s food and shouting ‘eat it!” before descending into a full blown tantrum. But that’s part of the magic for me. If a parent had made me a cake with half the effort that this one is going to take, I would probably be a blubbering mess of gratitude. I actually think it would be too much love to take. And while I do love cake, I’m aware that’s not a normal reaction.

Don’t get me wrong, as they grow old enough to understand both the concept of effort and the hassle of food colouring, I fully expect a heartfelt thank you for my yearly forays into domestic goddess mode. But I like the idea that birthday cakes will be the norm. Along with dinner on the table, bed times, cuddles, help with homework, and any number of other things I never had.

Probably the way my grandchildren will feel about expensive birthday cards.

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