The Formula for a Happy Baby

I took a bus ride today with my daughter. She is 11 weeks old. About five minutes into the bus journey a woman sat down adjacent to my seat, and smiled at my baby girl. “What a pretty baby” she commented. “She looks so happy and healthy.” I thanked her, and smiled in return, and then checked the time so that as all mothers of new babies do, I could begin the arithmetic we all spend the first few months working out. How many hours since the last feed, how long the most recent nap was, when you want the baby to settle later than night, and all the other futile calculations that our newborns ignore and do whatever they fancy regardless of.
I mentally calculated that it made sense to offer her some milk, and I put her back in the buggy and reached for my nappy bag. I took out a muslin and placed it over my shoulder. I unscrewed a bottle of sterile water, and reached for my nifty formula holder thingie which allows me to measure out an exact feed and take it with me for the day. I mixed the powder into the water, gave it a shake, and reached for my little girl.

“Oh,” the woman commented with a sad shake of her head. “What a shame to give something so processed and fake to her when she’s so tiny and innocent.”

Now don’t get me wrong here. I have a lot of opinions on breastfeeding, and nearly all of them are wholeheartedly pro. I believe Breast is Best. I believe that it’s a huge failure of the media and an important feminist issue that so many teenagers and even adults believe that breasts are solely for sex rather than feeding our children, I even agree with the ban on discounting formula and I have no bad feelings towards the many NHS hospitals who do not provide it on the post-labour wards.

I do not however, believe that it has magical properties which raise my children’s IQ, or stop them from becoming obese. I don’t think my breast milk will imbue them with a great work ethic or even protect them from allergies and intolerances. Most of all, while I believe that it is an amazing start for your baby if you can do it, I don’t believe it’s the right choice for everyone. And dear stranger, until my offspring is looking far less than ‘happy and healthy’ than you yourself just noted, I certainly don’t believe it is any of your damn business what choice I make and why.

I won’t bore you with my own journey, as we all have different reasons for how we choose to feed our children, and as I recently said about career choices, we only have our own families to answer to. I do however have something to say to the woman on the bus, and anyone else who thinks I or they should be ashamed of the processed nature of the food we give our ‘innocent’ children.

You aint’ seen nothing yet.

If you’re looking for something for me to be ashamed of, come round at 3am, when I tell my baby to shut the hell up when she’s been awake for 3 hours straight for no apparent reason, and then stay to hear my 4 year old repeat it to his Thomas the Tank Engine the following day. Pop by at 5am when I forcibly drag him back into his bedroom and threaten to take away everything he owns if he doesn’t leave me alone until 7. Watch me take lazy mornings off from being the mummy of a new baby to chat to old friends and continually replace the dummy in my daughters mouth rather than interact. Peek through my living room window on the days where I just simply cant be bothered to entertain my son and he has about 4 hours of unadulterated iPad time on the sofa, or when I look at my watch, notice that I’ve missed supper time, swear loudly and announce “Cereal for dinner!” to his great joy.

I could keep going, because like all parents, I have tons that I could label a ‘shame.’ Enough to keep me up at night if I suddenly decide I’m looking to self-flagellate. But reaching for the formula container by choice or by necessity, ensuring that my child is gaining weight, is well fed and happy, simply isn’t on the list.

'Does it come in soy lite?'

Is it any of your Business, if it’s Working for me?

I turned on my computer this morning to find links to four separate articles about working versus non working mums on my Facebook newsfeed.

I have no issue with people discussing the topic, after all, it’s a difficult and often heart-wrenching choice for anyone to make, and deserves discussion. This is especially true today, where the costs of childcare often make the financial side of having a career almost irrelevant, and yet the costs of living are so high that every penny counts. This dynamic forces women back into the workforce where they might otherwise choose to stay home, all for the couple of hundred pounds difference between the salary they receive from their employer, and the cheque they hand over to their childcare provider each month.
We also live in a time where taking five or ten years ‘out’ to have kids, often results in the way back ‘in’ being an impossibility. All very well while the kids are at home, but most of us are hoping for another thirty or forty years of more than waiting by the school gates once they’re out of nappies. Feminism is in the spotlight more than ever, and the debate is still raging whether your parenting choices reflect your opinions on equality of the sexes.

Yes, there’s a lot to say on the topic. If you fancy, we can go out for coffee and I can tell you my own story of how I came to work part time. The bits I like, the bits I don’t like so much. The guilt I feel when I ignore my 9 week old for an urgent deadline, the happiness I share with my 4 year old who I am lucky enough to pick up from school every day.

Oh no, sorry. I wasn’t talking to you. I was talking to the organisations and media outlets who want to get up close and personal with me. Who know what’s best for me, my husband, and our children more than I do. The newspapers who have clearly had a quick look at our yearly income and budget and know how much we need to get by. The university lecturers who eavesdrop on me and the hubby in bed at night when we discuss our work/life balance. The research bodies who know how good I am at my job, and how much my kids like or dislike their childminder, who understand without even asking what my plans for the rest of my life are, the personalities of my children, the aspirations of my other half. I am just so glad that they feel like they know me well enough to give me their opinions as scientific fact as to how I live my life.

I’m talking to Harvard University, who for some reason are putting manpower and funding into research that tells us that “the daughters of working mothers enjoy better careers, higher pay and more equal relationships than those raised by stay-at-home mothers.” Well, I’m somewhere in between on the working scale, so my daughter isn’t completely screwed up then, but I’ll be sure to tell all the strong, unselfish women I know who have made the hard choice to stay at home with their kids that their offspring will be minimum wage women in abusive relationships. Cheers Harvard.

I’m talking to the National Childrens Bureau, who have asked “whether ‘outsourcing’ motherhood is the best way to create a healthy society”. Give me a minute while I call all the fantastic women I am proud to know who work both in and out the home, whether it’s to make ends meet, or to be excellent role models for their kids, or simply because they are bloody great at their jobs, and let them know they are contributing to the loss of functional society as we know it.

I was referring to the EU council, who have thrown their two cents in, calling the “number of mothers working part time… a social challenge.” May I just take this moment to apologise to the whole of Europe, for the gall I’ve had to dare to find some work/life balance in our household. I can’t believe I ever thought I had the right to do a job I enjoy, at the same time as attempting being a hands-on parent.

That’s just three examples, all from the month of June, outlawing working mums, stay at home mums, and part time working mums. In one calendar month. Can you just stop to think for one second what an article that suggested that men were “outsourcing fatherhood” would be like? What the reception would be to the suggestion that the sons of stay at home dads are going to be incapable of forming well adjusted relationships or holding down jobs?

I have hardly met a mum in my life who doesn’t carry around some level of guilt for the choices she makes in terms of her career and kids. The ridiculous thing is, it’s clearly a completely personal decision, based on your finances, your family planning, your own goals, or simply how much you enjoy both your job and being with your kids all day!  And yet so many incredible women carry regret or uncertainty, fuelled by the ridiculous media attention and the questions they force on us collectively every time we switch on the computer or open a paper. “Should you wait to have kids? Do you work too much? Is there ever a right time to go back to work? Should you give in to social pressure to find a job?” The list goes on, when the only question any woman needs to ask herself is, “Is this the right choice for my family?”

We’re there already media, we’re judging ourselves right left and centre. We really don’t need your help.

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

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…

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…”

IMG_3768

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.