And a very happy Jew year to you, too.

It’s that time of year again, and my newsfeed is littered with pictures of apples doing honey bucket challenges, and smiling families wishing everyone a happy and sweet new year.

For Jewish people around the world, this year has been pretty much the opposite of happy and sweet, and the situation in Israel has been foremost in all of our minds. The homes of the three boys who were taken and murdered earlier in the year will have empty places at their tables this Rosh Hashana, and many Israelis are still living in fear. But despite this, I have received calls and texts, messages, emails and even the odd card through the door, wishing me and all the Jewish people all the best for the year ahead. And it makes me proud.

Earlier this year, a teen evoked a small media frenzy, and a slightly larger social media backlash to a photo she took of herself at Auschwitz while on a class trip. The world erupted with anger at the ‘Auschwitz selfie’ taken at the scene of so much horror and tragedy, and that she had the nerve to stand smiling with a face full of make up at the site of murder and genocide.

And I knew at once why she did it. (Or rather, I knew at once why I would have done it. As it turns out, it was some kind of memorial to her late father, and she had none of the intentions that I jumped to conclusions over, but it got me thinking.) So here is why I would be proud to take an Auschwitz selfie.

I was 19 when I visited Poland, in the year of mourning for my dear father, and a few months on from my year living in Israel. I had probably never felt quite so close to God, and if I’d realised how fragile and transient that stage is, I would have appreciated it a lot more. I remember being told that concentration camps were a place of death, and it was right to be sad and to cry. But cemeteries, they were a place of life, a place to rejoice. If these people had graves, with names on, with markers or even headstones, that meant that someone buried them. Someone lived on after them to remember them, to place the memorial, to visit and to upkeep it. We were there now, reading these peoples names, wondering and imagining about their lives, and then most importantly, going home to continue our own, because of them and others of their generation and their bravery.

A selfie at Auschwitz? A smiling face amongst all that terror and death? I see it as a flag, a symbol of our endurance. After all, there are no smiling selfies of Nazis. Just last week, a Nazi of almost 100 years old was prosecuted for being an accessory to nearly 300,000 murders. But we Jews? We are still here, we exist, we live on. We smile.

And as I look over my newsfeed, at hopeful and excited faces and witty cartoons, happily taking the place of the videos of Hamas insisting Israel are driven into the sea, calling for the death of each and every one of the Jewish people, I can see life everywhere I look. It is our ability to look to the future, to believe in the strength of our faith and our homeland, and to smile in the face of terror that keeps us united. More than that, it is what keeps us alive.

******

Wishing a happy, healthy and successful new year to each and every one of you!

Overworked and Underpaid

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…

The Fine Line of Friendship

It would be wrong to say that we’re now not friends any more.

We haven’t been for years.

They say there is a fine line between madness and genius, between love and hate, between pleasure and pain. There’s a blurriness there, A haze where you cant quite tell which state you’re in. I think that happens in friendship too. We definitely used to be friends. Oh yes. I remember that part clearly. Lots of laughter, lots of sharing, lots of making the choice to spend time together, to meet up between classes, to wait for each other after the final bell, to awkwardly save each other a spot on the bus ride home, That familiar sensation of shifting your bag across two seats and hoping no-one else asked to sit down before the other one showed up.

And then school days finished, and it took more effort to see one another. But we made plans, we used the lack of awkwardness when we saw one another as proof of the strength of our friendship. We hardly ever see one another, but when we do-it’s like no time has passed! We never wondered whether that was because we only ever lived in the past, with a brief “how’s the husband, how’s the job?”

How long has it been since you were excited to see me? How long has it been since I didn’t wonder about the benefits of our friendship and weighed up whether seeing you was a ‘worthwhile’ use of my time? It must have been years since you made me feel good about myself, since I got home after a night out feeling refreshed and invigorated rather than beaten down and used. I’m sure the same is true in reverse. I’m not the person you call when you need a shoulder to cry on. I’m not the name you search for on your contacts list to share good news. I’m not the spontaneous night out, the I was just passing by, or even the saw this and thought of you. 

And life is too short for that kind of functional friendship, which survives because of a history of existence rather than continued building and fortification. I’m past the fear that if I let go of friendship I won’t find a replacement. The nervous voice inside me that lies, in whispers of “you cant make new old friends” when the truth is, you can meet a soul mate at any age. So I should thank you really. I’m glad that we don’t have to waste time any more. I’m glad that you made the choice for us. You chose you. You made it clear that I’m not worth fighting for, I’m not worth keeping in your life when you clearly need so much space for yourself.

There’s a fine line between friendship, and not. But the real pretence is in the assumption of loss when you move from one side to the other. The idea that when you cross that line you take on a heaviness or a pain that wasn’t there before. In reality that must come earlier on, almost without you noticing. At some obscure point you quite cant put your finger on, that was the moment of loss. Because now? Moving over that fine line into not caring one bit about you?

I’ve never felt lighter.

Eight Years On

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

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?

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

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

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.

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.

Let’s Be Honest

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For a brief period during university, I had my only ‘student’ job, face to face fundraising on the streets of London, or as its more commonly (and delightfully) referred to as, charity mugging, or chugging.

It taught me a lot. About the business side of charity, about the psychology of working for a good cause, about the actual charities I was working to raise money for. But most it all, it taught me about lies.

Like many aspects of life, it is best summed up by quoting Chandler from Friends, this time as he explains to his wife: “It’s always better to lie, than to have the complicated discussion. … except with you!”

There is no doubt that lies are convenient. Need to get off the phone? Oh, my battery is dying. Need to get out of an awkward conversation? Hang on, I just remembered I have to meet someone. Forgot to reply? I never received your email.

In psychology, these kind of lies are referred to as ‘Butlers’. They stand between you and the person you are talking to, as a middle man, making the excuses for you,. Lies are essentially buffers so that you don’t have to hurt people’s feelings by telling the truth, which is more often than not simply, “I don’t want to talk to you.” And socially, there isn’t really anything wrong with that. If we went around telling everyone how boring their boyfriend drama was, or how little time we wanted to spend hearing about their kids new nursery…. We wouldn’t have many friends left to lie to.

But these white lies have become human nature. And what surprised me so much as a chugger, was how many times I was lied to daily, and for no social convention whatsoever. After all, I was never going to see these people again. I wasn’t a relative, a friend, or even an acquaintance. We share no mutual friends, I don’t know what area they live in or even their first names. We are as much strangers as you can be with another human (who you actually know exists) and we will probably spend no more than 3 or 4 seconds out of our lives in each other’s company. Additionally, I wasn’t asking them a personal question, or for their opinion on my choice of footwear or my haircut. No one needed to worry about offending me. Fundraisers are very clearly working, and while often need the sign ups quite desperately to hold onto their jobs, are rarely if ever personally offended by the 99% of people who keep on walking by. (To put this into perspective, if we achieved around 4 or 5 sign ups between 10am-6pm, the day was considered extremely successful.)

And yet without any understandable psychology behind it, 9/10 times people choose to lie. So let’s put aside all the BS for a minute and just be completely honest. I’m off duty, I’m out of the fundraising game, and to be really straight with you- I just don’t care. But whether you are reading this on a tablet or a phone, or on a computer or a laptop, at home or at work, here is a fact. The amount may vary from household to household, but we can all afford to donate per month to any given charity.

You just don’t want to.

We said it! It has been said. We’d rather have the beer with our mates, the coffee with a friend, the subscription to the magazine, the cleaner or the childcare or the wrap from the cafe across the street. In some rare cases, it may take more of a sacrifice, but we still choose to have the extra item on the grocery shop or the variation in our wardrobe choices.

And here’s the amazing thing, no one cares! No one minds. In fact, everyone agrees! We all make choices about our money and where we want it to go. These are all totally reasonable choices, necessities or extras alike. We all believe that we should treat ourselves, or our kids or friends, often before we look elsewhere. And every human on the planet weighs up whether something is a good enough cause to be worthy of our time and certainly of our money. After all, the greatest philanthropist in the world does not give arbitrarily to anyone who asks.

Everyone has their own personal soft spots, myself included. (I wouldn’t go giving me any kind of precious object to look after for example, without being aware I may well pawn it at some point to buy a homeless teenage boy a three course meal.) I am clearly not a cruel heartless person. But I will freely admit here in front of all my millions of avid readers, that I would rather go to Starbucks than save any kind of animal species on a monthly basis. If you stop me in the street and expect me to start welling up as you tell me about abandoned puppies, you have severely misjudged your audience. I am already planning on asking for extra hazelnut syrup.

And before I had worked in face to face fundraising, I probably would have done exactly what you do. Pick up an imaginary phone call, bark out that I’m late for a meeting, tell the fundraiser that I would stop and talk to them on my way back down the road. Or on the off chance that they got me in conversation for more than those few seconds, argue that I really couldn’t afford even £2 a week, which was such a shame as it sounded like an excellent cause. I would look it up on the internet when I got home, and discuss it with my other half. Did they have a brochure or a card?

Now, I save us both some time and say something revolutionary. “No thank you.” If I’ve started talking too early and don’t have to break my stride I may add, “I’d be wasting your time.”

It costs nothing, it doesn’t offend, and best of all-it’s the truth.

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