Bah Humbug

It’s that time of year again, and while I love Chanukah as much as the next Jew, it’s impossible to get away from the Xmas spirit. Winter sales, goodwill to all, and chestnuts available at every corner shop, what’s not to love?

Well, a few things actually. And maybe you’re all too close to see it, but with all the respect in the world, let me give you a run-down of the things I would change if my household kept Christmas.

1. The menu.

I think it’s fair to say that the whole of Xmas day centres around the big festive meal. For thousands of years people have been gathering around the dinner table and breaking bread together to celebrate this pinnacle in the Christian calendar. But who came up with the ideas for the grub? On what other day in the year would anyone choose Turkey, the arguable worst meat of choice to be the centrepiece of the meal? Beef, Lamb, Duck, even Chicken is preferable to Turkey any other day of the year. Let’s call a spade a spade here, Turkey is dry and hasn’t got much flavour, hence why you’re spending 2 to 3 hours preparing stuffing and sauces to accompany it. To top it off, although no one’s arguing with roast potatoes, does anyone eat Brussel Sprouts at any other meal the entire year? Let alone the weird tradition of Cranberry sauce, a foodstuff that just doesn’t exist whatsoever outside of December 25th.
Lastly, every meal should be complimented by the grand finale of dessert. And dessert will never ever mean fruit cake. I don’t care what you call it, or how much alcohol you add to it (although it probably helps), a Xmas Pudding is not dessert. Give me chocolate cake, give me ice cream, even something citrus-y would round off the meal well. But why are we pretending that Xmas pud is in any way appetising? In my house, it would be Haagen Daaz and sticky toffee pudding, maybe with a pavlova on the side. Extra points for the fact that none of those options takes months of my life to prepare. If I wanted to spend 2-3 months feeding something in small increments daily, I would buy a hamster.

2. The decor.

Love the Christmas lights, in fact I think we should add that to Judaism, a festival where we decorate the outside of our homes with ostentatious flashing lights and various plastic accompaniments. I can just see my home now, with a rendition of the 10 plagues of Egypt on my front lawn, and a replica of Mount Sinai on the roof. Fab.
This brings me to Christmas trees. Excellent idea I would even up the ante. Let’s bring all of the outside in, creating an indoor Xmas garden, complete with flowers and grass (astro-turf if need be) and why not woodland creatures, so cold at this time of year and in need of some Xmas spirit just as much as you.
Yes, I’m joking. But it is kind of weird that you bring a tree into your living rooms. Doesn’t it make a crazy mess of needles and twigs? Doesn’t it brings in bugs and the like? Do you have to buy a special spray for that? So many questions.

3. The list of demands.

This one is actually pretty serious, as I’ve read that the average household will spend £868 on Christmas this year. Nearly a thousand pounds on one day of the year, that just can’t be affordable for 95% of the UK. And meanwhile your kids are sitting at home writing a letter for Santa? A magical being that flies in, drops off their hearts desire and leaves again without so much as a thanks for him or his hard working elves [AKA unpaid midget workforce]. (Seriously, does anyone’s kids write thank you notes to Santa?) Doesn’t the whole thing seem a bit entitled? From the outside looking in at least, it seems like the last way I want my children to consider the presents we work hard to provide for them. Maybe it’s a little Scrooge of me, but I like to think that I would use the opportunity to talk to my kids about wants and needs, earning and spending, and ask them to think of one or two things they really want, which Santa won’t be bringing, but their hard-working parents will be.

4. The Xmas season

This is a tough one, because we all enjoy some of the elongated Xmas perks, such as Starbucks red cups which appear Nov 1st, or Xmas songs on the radio from what feels like mid-summer. But when I try to get an email response at work on December 3rd, and get told that the company are “winding down for Christmas”, it can really make me feel peeved. Similarly, spending the whole of December attending various Xmas lunches and functions with the people I anyway see and speak to every single week can be a little grating. Cmon boss, just give us the afternoon off if you’re trying to make us feel festive. It would probably cost you less.

Any other holiday traditions that you would scrap?

santa

 

 

The Poetry of Trying

Did you know that you don’t hide it very well?

To the world you sometimes do, as the doting grandma standing at drop off, your grandson running up to give you a cuddle, one it isn’t hard for you to reciprocate, unlike the ones of my own childhood. You slip into that role quite easily, I suppose my son is far easier to love than me, that’s true.

But to me, you don’t hide it well. I can see it when your eyes glaze over while I’m talking, or when you say the simple word “yeah” while I’m mid sentence, which means you’ve got something of your own ready to say, no longer listening to me at all. I can spot it when we sit in silence next to one another, nothing to say except enquiring about mutual people in our lives, “Have you spoken to your brother?” “No. Any news with your sister?” “No.” And back to silence again.

You don’t do a very good job of making me feel loved. Whether you try to or not I suppose is irrelevant to me, but maybe it’s important in the narrative of the story. Most things which are hard, which don’t get easier, we give up on. It’s human nature. It’s hard for you to find any love for me, you can’t deny that. Most days it’s hard for you to even think of me. Should I give you credit for not giving up?

I want to be fair, and I don’t want to blame you for something which is outside of your control. Love isn’t something we choose for ourselves, it arrives in our lives and takes us by surprise, it rushes over every part of us inside and out, enveloping effortlessly in its warmth. If you could choose to love me, I’m sure you would. After all, it would make all of this so much easier. And yet we have none of the warmth, all we have is the cold. And the trying, of course.

But maybe, maybe you’re not trying any more. Maybe when I expected you to call this week, to find out whether everything was okay with the scan I had for my second child, the next in line for your role of doting grandma, to see how I was feeling, maybe that expectation was ridiculous. It’s been five days and still no call.

Should I take the lack of contact as a sign that you’ve given up on me? That the effort it takes to try to love me, to try to meet my obviously high expectations has finally become too much for you? We all have our limits. Perhaps you can’t keep trying any more.

Perhaps I can’t either.

Wobbly Wednesday (or ‘What I Saw Wednesday’)

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

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

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….'”

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