Charlie Beswick

@ouralteredlife | contributor
I’m Charlie, mum to twins Oliver and Harry. Harry was born with Goldenhar syndrome and autism and our life is an altered one from that we imagined. Its tough at times but we are tougher!
Community Voices

Autism, Love & Life ~ An interview with a step dad

I was thinking recently about the many ways that autism is both a welcome and annoying part of the family. I have written before about the reasons that autism is both www.ouralteredlife.com/9-reasons-why-living-with-autism-is-magical and www.ouralteredlife.com/9-reasons-why-living-with-autism-is-hard but its always been from my own perspective. For a change, I wanted to have someone else’s opinion of our alternative life. My son Oliver was my first choice but he was engrossed on his iPhone playing his latest game. My fiance Andrew asked what I was doing and so I started telling him about wanting another perspective. Before we knew it, I was interviewing him from behind the laptop as.

This is the result…

What did you think when you found out about Harry?

It meant nothing really. I’d never met a child with any disabilities so I’d got no idea how life was different so I went it to the relationship blind – regarding Harry, not you. Every woman’s hard work. *Andrew’s sense of humour here people – pass me the gin*And do you remember the first time you saw him?No. I don’t remember feeling startled so I mustn’t have. I just wondered what his abilities were and what we would or wouldn’t be able to do. I just saw a little boy and you have to admit he was damn cute!True. How much did you know about autism before you met us?Not a lot really. I still don’t think I know much. You tell me bits but it goes in one ear and comes out the other.Don’t you feel like you need to know about it?NoWhy not?Because I think I’m doing ok just as we areIn what way?In all ways, me and Harry get on really well, I understand what he likes and doesn’t like. I don’t need to know about autism I just need to know Harry *my heart melted at this point*

So how is Harry different to your own children?

Oh bloody hell! *laughs* I don’t see him as loads different. He still wants company and seeks help. He wants all the things that any child wants. – love and fun. Its just a lot harder to do it, well…*thinks* yeah, it is harder, there’s no getting away from that and I don’t mean it in a nasty way.So how is it harder?The lack of ability for us to communicate with each other is hard. I don’t know if I’m doing things exactly how he wants me to because he can’t tell me, although he does show us. The difficulty is knowing if you are showing him love in the right way for him.  Harrison needs to hear lots of reassurance whereas B needs cuddles and is more tactile. Oliver wants someone to listen to him and give him feedback. They’re all unique and Harry is no different. I just wonder if I am meeting his needs so I have to do all of them with Harry which can be exhausting.

*Quickly adds* but I don’t mind.

What do you think about his meltdowns?

It scared me for him and for you. I remember when you had to reverse in the car and he went berserk kicking the back of your seat and screaming. He was hurting himself and he was hurting you and it scared me. When he did a runner at your nans 90th I was shocked at how fast he was and I understood then how you could never relax really when we were out. I think it was the first time I saw the effect it had on Oliver too which wasn’t nice to see. That was a big eye opener for me.Has Harry taught you anything?Loads! One thing is the phrase looks are deceiving – because he’s one crafty, clever, independent little boy. I’ve said it for years, he’s a complete boy. He’s ‘all there’ he just functions on a different level, or plane however you say it. He pops back to us when he wants something or to be with us. I think he’s lucky in some ways.How?In that he doesn’t feel jealous or angry or any of the other things that our bog standard kids feel.

*laughs at ‘bog standard’*

I know you always talk about our future including Harry but at what point did it dawn on you that it would always be us three?

It was either his first or second development spike (*that’s how I explain to Andrew the burst of progress he makes after plateauing for a while*) I think I expected that he would carry on ageing and developing just at a slower rate than the others so one day he’d think and act like an 18 year old even though he might be 30. When I realised that he would never really be an 18 year old and that he’d always need us, I just accepted it.  I guess that’s when I thought that God had given me what I had always wanted.

What’s that, an eternal child? *running joke because he likes to keep his children as children for as long as possible*

Yeah, he’s always going to be our boy and I love him.

*Something in my eye, hang on *

If you could go back in time what would you want someone to tell you about entering into a relationship with me and autism?

I wouldn’t want anyone to tell me anything

Why not?

It might have stopped me from entering the relationship if people told me all the negative stuff. Some days at the start it was like “oh my god”

Why?

He was more aggressive with himself and frustrated. I didn’t know him well enough at the beginning to know how to help him or you so I had to learn fast and it was a bit overwhelming sometimes. Plus,  we are restricted sometimes with what we can do so I had to think differently when we were all together than I do when its just me and my brats (term of affection) but what he brings to the family far outweighs the issues.

Like what?

Wow. Loads. Humility, passion, laughter, patience.

My kids have definitely learned so much from loving him without a shadow of a doubt. With Harry, we are never ever going to stop learning. He’s developing and changing all the time. Like the other day when you reversed and I said you couldn’t have done that a couple of years ago without him getting really distressed. Reversing doesn’t scare him now but going off track when we do the walk does. In years he might like going off track but it will be something else that throws him. Its going to be a very interesting life for us all.

Does that scare you?

Of course it does. What scares me most is the pressure on us as a couple. There’s no pressure on Harry but we have a big responsibility for him. We’ll be older parents’ still with a dependent and that’s a lot to think about. Modern society doesn’t help.

What do you mean?

The other kids will probably be with us for a lot longer too. Years ago they’d have a home of their own by about 25. Now, we’ll probably have all 4 with us until they’re in their 30s and that in itself is going to be hard.Yeah, I’ll be needing more gin.

Describe Harry in 3 words

Can I have noisy little b****r?

No *laughing*

Special little bundle!

Much better. Thanks for loving us. We’re a complicated bunch – Harry with his autism, Oliver with his #Anxiety, me with, well…just me.

I know, you’re the hardest one.

Any advice you would give to men at the start of a relationship like ours?

*Long pause. Really long. I wonder if he even heard me*

Keep your eyes open, open heart…..

*ANOTHER pause!*

Open mind?

No, its the heart that will do it. If I’d have thought about it I may have ran off and never discovered how much I could love you all. I fell in love with you and that meant I was able to cope with the kids and that’s hard enough anyway. Being a step parent – you know that! Its hard for any families that meet each other and have to parent each others kids but I think we are an amazing team and I love being a six.

On that note, I’ll leave it there and go give my man a big squeeze. I’ve said it before and ill say it again, the way to a man’s heart is through his stomach but a way to a woman’s heart is through her kids and mine are so very lucky to have Andrew in their life.

Community Voices

Now I understand

This isn’t the baby I dreamed of

This isn’t the life I had planned

I think you have made a mistake here

I really just don’t understand

I don’t think I’m up to the job spec

A baby like this needs much more

Than a woman whose mind is a ship wreck

And a heart that is breaking and sore

But I’ll take him and give it my best shot

And hope that the love finds its way

I can’t promise the earth but I know that

I will give him my best every day

I could never have known he was gifted

With a magic unlike any other

That my soul would be mended and lifted

That he’d create such a grateful mother

I did not even see when it happened

When my heart stopped to grieve and to yearn

For a life that was never meant for me

Just one of the lessons I’d learn

Along with a new-found acceptance

That difference is hard but it’s great

That the love always comes in its own time

But for some there is just a short wait

That the things other mums take for granted

As their babies advance and grow old

Will forever be things I will cheer for

As I watch them carefully unfold

That the well-timed kind words of a mother

Who’s a stranger but walks the same path

Could give comfort as much as another

As they give hope, let me cry, help me laugh.

That I’d have days when I felt really lonely

And times when I’d sit down and cry

Moments I’d looked back on our journey

Asking how, asking when, asking why

But I’d also have days when I’d realise

That it’s fine to be apart from the rest

That a life I may never have chosen

Is now one in which I feel blessed

I would learn that I’m more than a mother

I’m a guard, advocate and a voice

And I’m not sure that I’d change life today

If I were suddenly given the choice

No, it wasn’t the baby I’d dreamed of

It wasn’t the life I had planned

But its made my life richer and brighter

And it’s now that I understand

Our babies don’t come to a parent

Who is special and chosen and tough

They come to a parent who is stubborn

and loving and will never give up

One who will fight for their children

Till they fall to their knees on the floor

But will get back again the very next day

When they realise they need to do more

One who will love so intensely

That words will just fail to explain

One who is glad of the journey

One who evolves through the pain

A parent who knows that its natural

To feel so very lost at the start

And one who will help and guide others

As they learn their new journey by heart.

By Charlie Beswick

Community Voices

Until I knew I could  #MightyPoets

I took one step at a time
One day at a time
Doubting that I could walk the path before me
Questioning myself
Constantly
Was I fit for this journey?
I didn't know if I could do it
Until I reached the top and caught my breath
Until I looked at the path behind me
And smiled
I wasn't sure that I could do it
Until I knew that I could.
And the journey continues...

To the Special Education Teachers Who Work With My Child

I didn’t want to send Harry to a special education school. I wanted him mainstreamed with his twin brother, doing all the things that other siblings were doing together. I wanted him to have loads of friends and memories to treasure forever. I wanted him to know that anything was possible in life. But somewhere along the way, I realized that what I wanted didn’t really matter, and what my son needed had to be the priority. Then I wanted to cry. With a heavy heart, I enrolled him into his first special education school. He is in year nine now, and I have just attended the annual review of his progress at school and discussed the options for life after year 11. I expected to leave the meeting a little deflated, having being faced with Harry’s struggles and restricted options, but I didn’t. I left feeling proud of and excited for him. I left feeling annoyed with myself for ever doubting that the meeting would be anything but positive. I left feeling indebted to the staff who support him daily. I told them I think they are amazing, but in the brief meeting I didn’t have the time or words to say exactly how I felt. So I am doing it now. Here. For all the teachers, teaching assistants and staff who teach, know and love my boy. Dear Staff, I want to say thank you with words that do my gratitude justice. Thank you not just for teaching my boy but for loving him as much as you do. I see it when you share stories about him; the sparkle in your eyes and your wide smile. I hear it when you talk about him; how your voice melts a bit. I feel it when you tell me the things you have had to reprimand him for, with a forgiving eye roll and a little chuckle. If I knew nothing else about what my boy does at school, I would know he is loved, and that is the most precious thing for a parent when they entrust their vulnerable child into the care of someone else. I also want to thank you for just being you. For the firm boundaries that you impose and the hugs you give; for the high expectations you have and the support you offer; for the challenges you see but the faith you have that he can do and be so much. With you he is settled, happy and flourishing. Yes, I love the fact that he attends the school he does but its not the school that makes the difference to his day and life. It’s you. All that you are and all that you give to him. I couldn’t ask for more. I worry what will happen to him when the time comes for him to move on from you but for now I treasure the days he has with you, I delight in seeing the progress he’s making both, academically and socially, and I love the fact that he counts down days of the weekend or holidays until he is with you again. For a child so limited verbally, he tells me a lot about his affection for you all. Rather than thinking of Harry attending a special education school, I like to think of him attending a school which meets the very unique needs he has. My child needs love, understanding and acceptance. He needs to be pushed and challenged. He needs reassurance and praise. He needs humour and social guidance. He needs time and space to be himself. My son needs patience and belief. He needs you. I might have worried that he would live a life in the wings, but I know now that children like Harry live every day as if they are center stage, and that’s a huge thanks to you and the team around him. So thank you for all that you are and all that you do in shaping my very special boy. You make a bigger difference than you could ever understand.

Why It's Hard to Let My Son With a Disability Grow Up

This week I was explaining to one of the classes I teach what it means to feel “emotional conflicted.”‘ Today, as I packed my son’s suitcase for his week-long overnight trip with school, I became the embodiment of that description. When I asked Harry if he was excited to go away with the staff and friends he adores, he told me “no” several times and I just wanted to wrap my arms around him and keep him with me. But that reaction, as natural as it is, is not always helpful. With all children, but particularly those with disabilities, we as parents need to help them spread their wings and grow. We cheer them when they succeed and we catch them when they fall, and all of that is part of the life they carve for themselves. But Harry’s life is full of fears for me as his mum. His vulnerability is immense, his capacity to manage his own life independently is limited but this doesn’t mean that he can’t and shouldn’t live a life full of adventure and challenges. I am the first one to help him see the world, but this is where I come unstuck. It’s always me. I am always at his side. I don’t actually think he always needs me there, but I need to be. Harry’s dad is fantastic at pushing him to be more independent. I know this is where I falter. My partner, Andrew, encourages Harry to walk at our side when we are out and about. Harry’s hand creeps for mine and I feel so relieved to feel the warmth and comfort of his hand in mine, but Andrew encourages Harry to walk alone, to be the young man he is and not the little boy I see too often, to give him some autonomy and to reduce his dependency on me. I get it, don’t get me wrong, and its 100 percent the right thing to do, but wow, I hate it. At one time I thought that having a baby with Goldenhar syndrome and autism was my biggest challenge, but I was wrong. Letting my boy grow up is way harder than I ever expected it would be and as I kissed him goodbye at his dad’s today before his overnight trip I felt a sad ache.You see, I am so excited about his adventure, but I worry what may happen while he is apart from me and taking part in all sorts of daring (and brilliant) activities. I worry daily if he will be OK with the uneven floor surfaces, with the different routines, without his family. But in truth, I am looking forward to my sleep being undisturbed for a week as Harry’s internal body clock is is something he can’t understand or explain. But I feel guilty that his absence generates even the briefest moment of relief. I feel like I am betraying him. I am very much looking forward to spending time with Oliver without the distractions of Harry interrupting almost every conversation we have. Oliver needs this time with me and with his dad and he will benefit so much from that undivided attention and rest. But I feel bad that I am enjoying time without Harry as if he was an inconvenience or problem in some way, which he never is. Then, as I watch the clock for Harry’s return, I feel awful that I struggle to immerse myself in time with my other son who needs me just as much as Harry does. On Tuesday, I will celebrate my 40th birthday with my family, which I am really looking forward to, but I will feel Harry’s absence so keenly. There are so many things I do on autopilot for Harry, without him here I feel somewhat redundant. It’s so weird to not have someone who needs you consistently, and now I realise that the way of life I had once dreaded has become the fabric of who I am and I would never ever change it. It’s only been a few hours since I  dropped the boys off with their dad and yet I am already looking forward to Saturday when we are all reunited. Until then, I will enjoy my time with Oliver, catch up on some much needed sleep, drink in the peace and unwanted release from my usual intense responsibilities, have fun celebrating my birthday through the week with family and friends, and use it as the perfect excuse to drink gin and eat cheese. My toast will be: “To the love that teaches us who we are and gives us the strength to be the best versions of ourselves.” Cheers.

Why I Celebrate My 'Typical' Child

Often, when families have a child with additional needs or a disability, people applaud the strength of the parents in supporting them. Yet siblings are rarely recognized for the incredible part they play and for the impact that having a sibling who requires more care and attention can have on them. My neurotypical son, Oliver, may have different needs from his brother, Harry, but they’re not always addressed as quickly (and sometimes, not at all, which makes me sad even to acknowledge and admit). So here are five reasons why I believe Oliver is the superhero of our story. 1. He is incredibly patient and accepting. Oliver has learned that for a huge portion of the time — rightly or wrongly — he comes second. This is because Harry’s needs are often immediate, whereas Oliver’s can wait. Usually, he wants to show me something on his phone, update me on events at school or share some essential life hack from YouTube, but I am in the midst of actively caring or supporting his brother. Conversations often happen while I am multitasking and we “chat” over or around Harry, so although the conversation happens, it’s not always with the focus and attention I would like to give unless we have some time together, just us. Sometimes, I have to be away from home for days or even longer when Harry has his surgeries and I know Oliver misses me terribly (as I do him), but he never ever complains. He never sulks. He accepts this is our life and that coming second never means he is loved less. It simply means that when you are part of a family like ours, we all have a vital role, none more or less important than the others, but some more demanding on our time. Oliver never had the luxury of those natural egocentric years where the world revolved around him as a toddler. He has always had to share his world (being Harry’s twin also means he never had time as a single baby with me either) but he loves his brother and so he never questions it. He simply accepts that this is our life. 2. He has amazing empathy and maturity. Some adults struggle to sympathise with others, let alone empathise. The difference being sympathy is the feeling of compassion for someone else, whereas empathy is the ability to step into someone’s shoes for a while and really know their journey. Oliver has this ability. He totally “gets” the struggles that other children feel. Not necessarily as young carers like him, but day-to-day ordinary challenges of being a pre-teen in the 21st century. His teacher told me about Oliver’s efforts to include everyone in practical lessons, even the new boy who people were struggling to accept due to his “quirky” ways. Oliver understands inclusion and demonstrates it without even knowing it. Over the half-term holiday, his friend’s parents gushed about what wonderful company and role model he was and I can guarantee that whenever I take him anywhere we have compliments about his conduct and manners. He is considerate and thoughtful. When he wanted to attend a martial arts class a few years ago, we had to take Harry along with us to the taster session and Harry (and I) had a really hard time. We never went back on Oliver’s request. He said he hadn’t enjoyed the class anyway, but a part of me wonders if he said that to avoid the trauma for his brother every week. He was putting me and Harry before himself, something that even many adults struggle to do and one of the reasons I believe he’ll make an amazing father in the future. 3. He constantly demonstrates understanding and forgiveness. There have been countless times when we have gone out as a trio and had to return home early because Harry simply couldn’t cope and had a meltdown (not a tantrum, they are not the same thing). Harry and Oliver have had conflict, and although Harry has been physical, Oliver has never hit Harry back. Oliver, in frustration and anger, has said how hard it can be to love a boy who hits him so much. But moments later, they can be holding hands. Oliver knows Harry’s punches aren’t a sign that he doesn’t like him, as it would be if anyone else did it. He know sometimes Harry’s over excited expression of affection can turn physical and though it doesn’t make it right, Oliver understands and in no time Harry is forgiven. Time and time again we have returned early from utings or not gone out at all. I’m not saying that Oliver doesn’t find that hard, and I worry sometimes that a simmering resentment is being buried within him only to corrode his happiness, but he assures me that he understands and I always make sure we talk through anything that happens. 4. He communicates well. One thing Oliver and I can do incredibly well is talk. We are both incessant chatter boxes, and from a very early age, I encouraged Oliver to recognise a variety of emotions. As such, he has incredible emotional intelligence and is very aware of his own feelings and those of others. Everyone we meet comments on the quality and confidence of his conversations and his eloquence in talking about life with Harry, like on the interview we did with Special Books by Special Kids. He will talk openly with me about his feelings, worries and fears. We discuss strategies to deal with the stares, whispers and questions that we get when we are out and about and self-reflect on what went well and what we could have done better when there has been a situation with Harry. In many ways, he talks like a grown up, and I have to remind myself that he is still a child so that I don’t unfairly burden him with the responsibilities of adulthood, but I love that he speaks so freely with me and can express himself so well. You will never hear me dismissing his concerns or telling him to “man up” when it comes to sharing his emotions because I really do believe that good communication is the key to positive mental health and I want my big boy (three minutes older really does matter when you’re a twin) to know that his voice is always valid and valued. 5. He’s incredibly protective. Without a doubt, Oliver is Harry’s most fierce protector. When they were much younger, Oliver didn’t notice the grimaced faces and pointing fingers, but as the boys got older and he saw it, it used to enrage him. He has asked for permission more than once to punch children who are being mean to his brother, and although my head said, “Sure son, go for it,” I tried to explain why it was more important to educate people than simply punish them for a lack of understanding (and basic manners). When Harry had his big reconstruction surgeries, Oliver cried that he didn’t want his brother hurt. He still has a real fear (not without good cause but that’s another story) that Harry will escape from the house and run off, so he’s constantly checking the doors to put his mind at rest that the house is secure and his brother is safe. Oliver talks about what he will do with his life, travelling and having a family of his own one day. But he always reassures me that he’ll be here for Harry. He tells me that looking out for his brother is something he wants to do as much as feels he should. I hope that’s true, as I am sure that even the most heartfelt of intentions can be influenced by some essence of responsibility. For all of these reasons and more, Oliver is the hero of our story. He has grown up with a brother who has never been a friend or a playmate like you see with most twins. For about the first eight years of their life, Harry preferred to play on his own and only just tolerated other children in his personal space. I can’t imagine how Oliver must have felt on the days when he wanted a brother to play with, to moan at or laugh with, to even fall out and make up with. Although I may not have the life I expected, I have two boys I could have never dreamed of. Harry with his purity of soul, my sunshine boy who radiates love (and mischief) and Oliver, who is wiser and braver than his years, who accepts that our life is different to that of his friends but embraces it regardless. He shows me every day what love means and on the days when I question myself as a mother, when I feel like I’m getting it all wrong, I only have to look at him to know how much I have got right. In the interview we did with Chris Ulmer, my 12-year-old son explained it better than I’ve ever heard from an adult. He said, “Love is an action. It’s not something you say, it’s something you do.” My boy may not have to perform the action of putting on his cape, but he is a superhero in my eyes and I am beyond proud to be his mum.

To My Son, It's OK if You Forget Me When I'm Gone

Dear Harry We recently visited Nottingham for the weekend to celebrate your 13th birthday. Just you and me. I was a bit worried as you don’t always like new places but you do like hotel swimming pools and just as I expected, that’s where your smile shone the brightest! Coming home from 36 hours of being a duo, I expected you to be lost to technology again, but unusually, you still wanted to be at my side. It was my hand you shouted for as we walked around Chester Zoo and it was my name you called repeatedly every time you wanted anything. Nobody else would do. It was lovely to know how much you love me and I can’t tell you how much I love our time together when its just you and me, but it did make me worry a little bit. You see, I won’t always be here to answer your call and hold your hand. One day, just like my Nan, I will pass away and leave you here for a while (with other people who love you very much). My first thought is that I don’t ever want you to look as unaffected by the mention of my name as you are when I talk about Nan, who loved you. I want you to remember every adventure I have taken you on, every pool we have swam in, every time I have nuzzled into your neck and made you giggle. I want you to remember it all. But that comes at a price. With great love, comes the pain of great loss. I miss Nan so much every day that it makes my chest feel heavy sometimes and I catch a little sob in my throat for no apparent reason. I feel her loss like I am missing a part of me, every day, and it makes me sad but I can manage those feelings most of the time. Some people can’t. I have seen what grief has done to others, the people who have the bond that others envy, the ones who have shared moments and memories that link them forever who are unable to continue with what feels like only half a life without their partner, the people who needed each other in the same way they needed fresh air. People like us. I love you so much my boy. I love you in a way that makes my heart full and ache at the same time. I marvel at the things you do, the person you are becoming and I wear myself out trying to give you the very best life and memories because that’s what you deserve. But you don’t deserve the pain that comes in equal measure when I go. I can’t bear to think of you with a heavy heart and no way to tell anyone. Or feeling grief and not knowing what it is as it consumes you and stills the bounce that it such a part of you. I never want you to feel lost or lonely. I don’t ever want your heart to ache with the burden of missing love. I want you always to feel happy and free from the constraints of the emotions that can freeze others: envy, anger, grief. If you were to remember me, it would be for my own selfish reasons so I am writing this now to say that one day, when I am not here anymore, its OK to forget me (even though I am crying even typing this). It’s OK to get on with your life and be happy with the people around you. It’s OK to forget me and all the little things we do now. I have realized that I am making the memories for me as much as for you (maybe more so). I take you to places and we do things together so I know that  our time together is well spent and so that I have a sense of satisfaction and pride that I am doing all that I can for you while I am here. Its OK for you to laugh and be happy when I am gone, in fact, that’s all I really want and if that means that I go to the corners of your mind for a few years, then so be it. I don’t think you will ever fully forget me in the way you have forgotten Nan though. You were so much younger then and you are growing all the time, not just in height by in maturity and understanding, too. But if you do remember me, let memories of me be the ones that illuminate your dark days as you look back. The fuzzy feeling you can’t quite put your finger on but know was a brilliant time in your life. Like sunshine warming your bones, soaking you through and soothing your soul. Let me be that sunshine for you as you are my sunshine boy today. Let the passing whiff of my perfume feel familiar in a comforting way to you for a brief moment. Let my presence in your life touch you lightly after my death without the weight and burden of a clear memory that makes your heart ache for it again. Let my love stay with you so you never doubt that you were loved but don’t recall the finer details of the moments when I showed you. It’s OK to forget me but please know one thing: I will never, ever forget you. I will never forget the first moment I knew there was something very special about you. You were a couple of weeks old and as I held you on my chest after hearing that you wouldn’t need early surgery, you pushed away from me and stared into my soul with one beautiful eye as if to say “See, it will all be OK.” I was so lost then. So very sad. You saved me. I will never forget that. I will never forget the way you cuddle into me and the smell of your hair as I kiss the scar that runs across your head. I will never forget the sound of your cheeky laughter and the wonderful crafty mischief you get up to. I will never forget the bond between you and your brother that makes my heart swell with pride and love. I will never forget the moments that you spontaneously reply to my endless ramblings as I chat away with you. I will never forget the rhythm of the sofa as you bounce beside me making me feel motion sick or revealing remote controls to you as you cover both eyes (even the glass one) and count down from 10. I will never forget holding your little face in my hands and kissing every inch of it. I will never forget the feel of your hand in mine or the sound of your voice as you call for me or say my name in a slow soothing way that oozes love “muuuuuuuummy.” I will never forget you my boy. I promise. Its OK to forget me for a while because I do believe that when your time is up, you’ll see me again and you’ll remember it all because we know each other by heart. One day I will answer your call and hold your hand again. Until then, I will remember for the both of us and love you even more as you live the life I am working so hard to create for you. All my love, always, Mum xxx

How to Help Children Understand Physical Differences

When my twins were born prematurely, I had no idea Harry had a rare cranio-facial condition called Goldenhar syndrome. Taking my double buggy out always attracted a lot of attention and some very awkward moments when people peered into the buggy, saw my boy, and just didn’t know what to say. When my best friend, Caroline, convinced me to take the boys to soft play centers with her and her boys, I experienced the less restrained reaction of other children. Some would cry when they saw Harry. More than once, children shrieked and ran away. Once, a boy got Harry in a head lock and tried to force his “bad eye” to open. I never blamed the children for their reactions, but it really stung me to say the least. Nowadays, I am really comfortable in dealing with people’s reactions and questions, so I thought I wold compile my top tips on the ways that you can help your own child understand facial disfigurement or physical differences in others. 1. Be proactive. I imagine 99 percent of conversations with children happen in response to seeing someone with a facial difference (or even a disability, which can evoke similar questions and reactions). My top tip would be to chat about it now, even before you see someone who looks different to what typical children expect to see. There is no right or wrong age for this, as it very much depends on your own child, but once they are able to understand the difference between boys and girls, then I think it’s a good time to talk about other differences. 2. Model the right behavior. I know this can be hard when people respond instinctively, but we are our children’s first teachers so it’s important we show them the best way to respond in all life situations. If you do see someone with a facial disfigurement, in a wheelchair etc., just smile. Don’t rush the child away or encourage them to look away. I think anyone who looks different for any reason is prepared for the variety of reactions we receive, so to see you explaining about diversity and sharing a smile is so much healthier than ushering children off and whispering as if we are something not to be looked at. 3. Show them images of children who look different. Please, if you only do one thing after reading this, show your children some images of Harry and introduce them to him on the videos I share on our Facebook page. We have lots of children who send him messages and drawings who I am positive asked the first time they saw him why he looked different. But now, they simply see the boy he is. In showing children images of others who look different it makes them aware of those differences and opens their mind to see the similarities instead. 4. Help them to see the similarities. This could be something the child is doing, if you are at the same place, then chat about the fact that they must also like the zoo, cinema or trampoline park. It could be something as simple as a color they are wearing that your child likes, or a bag of crisps they are eating. Think on your feet and find the common ground. There will always be more similarities than differences, but it can take a few minutes to find them. 5. Explain that some people simply look different. It’s simply a fact that there are some children who are born with syndromes like Harry and who may look different to a typical child. There are also children and adults whose appearance may alter after an accident or illness. At some point, maybe when your children are a little older, it’s worth educating them that every face has a story. I don’t ever want anyone to pity Harry, but I want them to know that life is tougher with the world’s eyes on you and a smile can go a long way. Education and awareness promotes understanding and kindness. 6. Prepare an explanation. In sales its called an “elevator pitch” — a summary of what you do in the amount of time that it would take to go from one floor of a building to the next. The more concise the better, and the more you practice it the more natural it feels. In a similar way, it’s a great idea to have a one-liner up your sleeve for the times when there might be an awkward moment to defrost or a very loud question from a little person to answer. For me, I always explained Harrys face by saying: “He was only born with one eye but some very clever doctors are making a new eye for him so that he looks like his brother and a bit more like you. He’s a very lovely boy and he likes bouncing, pizza and Thomas the tank. Do you like any of those things?” Know what you would say and you’ll find that you are able to deal with your natural embarrassment much better in the moments that count, rather than kicking yourself afterwards. 7. Focus on what matters. Ironically, the best way to explain facial disfigurement is not to concentrate on it too much. If you find yourself in the position of needing to explain why some people look so different but you have your elevator pitch ready and have done some proactive ground work first, I guarantee that not only will you find it easier to explain, but your children will grow up accepting that difference is a part of life, and rather than being feared, differences can be celebrated. And maybe our kids will even pass that kindness on to the next generation. For my son and for others like him, acceptance is the gift that just keeps giving. What an amazing thought that is!

'Everybody's Different' Teaches Kids About Differences in a Fun Way

I had no idea my baby would be born with a rare cranio facial condition. Essentially, the left hand side of this face never formed and he was born with no eye, eye socket, nostril or ear. Despite being a twin and having lots of scans, his syndrome was never detected. To say I was stunned is an understatement and I struggled for a while to forgive myself for something which was actually  never my fault. Over the years, Harry has had extensive reconstructive surgery and I have become passionate about raising awareness that people who may look different are still as important and precious as anyone else. So when I saw, “Everybody’s Different: The Appearance Game” mentioned on Twitter, I was keen to find out more.The board game has been created by Focus Games, who pride themselves on developing bespoke games that address specific medical issues as well as sensitive social issues, such as appearance. They developed the game in partnership with academics at the Centre for Appearance Research, who focus on the role of appearance and body image in people’s lives. The idea of playing a game with children to develop their understanding of issues like visible differences really excited me, as it felt like a natural extension to my own assemblies as part of my charity, More Than a Face, and as a teacher myself I could see it being used as part of awareness days. Focus Games and I decided to collaborate, and so I went into a local school to play the game with a group of year 5 pupils and get their feedback. As a teacher, I know too well that sometimes the best lesson plans on paper can fall flat in the reality of the classroom, so I was interested to know whether the game would be as well received as I hoped. The game itself is played by two teams (my pupils opted for a boy/girl split) of any number, although I think three to five kids per team is probably about right. The aim of the game is to progress round the path on the board with the first team reaching the end being the winner — a simple concept. On the board, pupils encounter questions which make them discuss different issues and scenarios. Some cards ask questions such as, “why do people have scars or marks on their bodies” tackling subjects such as physical differences head on. Others say, “Imagine we all looked exactly the same, can you think of a problem this might cause at school?” encouraging pupils to think about the importance of diversity. Some questions even encourage them to use cross curricular knowledge such as, “Name someone in a book or film who didn’t turn out to be how you expected.” Other cards use visual prompts with images to discuss things such as, “why do you think this lady has this appearance?” Some encourage pupils to realize that actually, appearance tells us nothing about the person (which I love as it fits so well with my own views and charity aims.) Suggested answers are given and points are awarded if pupils give sensible answers. There are no wrong answers and pupils only move backwards on the board if they happen to land on a square with that instruction — which the other team always love! It was fascinating to see the children open up in their thinking and their answers as the game progressed, and at times, challenge each other’s thinking. For example, one question asked if a person’s appearance made a difference to how well they could perform their job. Instantly everyone said “No, it shouldn’t matter” but then, and with very little intervention from me, they started to talk about attributes that are important for certain roles — a smart business man who wants to be taken seriously, a strong fire fighter who people will depend on in an emergency. I loved watching them discuss with each other the various tasks and change their opinions in a constructive and positive way. The game took us about 40 minutes to complete. It can be played quicker if two dice are used, but I really wanted the pupils to answer as many questions as they could so I could make an informed opinion. As I packed the board game away, I asked for some feedback. This is what the students said: Robert: “I thought it was really competitive and good fun. I enjoyed it” John: “It was fun! I learned a bit more about certain conditions that people have. I hadn’t heard of some of them” Jimmy: “It was really good. The questions really made me think” Lilly: “I learned more about things I didn’t know anything about before” Layla: “I learned that you can’t judge people by what they look like. It makes you realize how lucky you are when other people struggle” Evie: “I really enjoyed it. I didn’t know anything about alopecia before today” Daisy: “I have learned that everyone is unique and you can’t tell what people are like just from their appearance” When I asked the students if they thought it was a game that other kids should play, they answered with a resounding “ Yes! ” and I have to agree. As with everything, on its own, I don’t think it can completely inform and change opinion, it is an essential tool for prompting conversation on topics which might otherwise not be addressed. In a day and age where social media has never been more influential, “Everybody’s Different: The Appearance Game” is a great reminder that people are so much more than simply what they look like. As a teacher, I see the game being used in groups, and as a parent of a child with facial differenes I would love to see every school playing it on Facial Equality day on May 23, 2018. Read more about the game at www.appearancegame.com.

To the Mom at the Trampoline Park Who Saw Me Bounce With My Child

I see you. Enjoying a life I thought I would have a long time ago. You’re sitting at the edge of the trampoline park reading a book. You look totally engrossed in it, glancing up occasionally and topping up the tea (maybe coffee) from your flask. Your children have their own water bottles at your feet. I’ve called them Jack and Katie (the children, not the water bottles). Katie pops back from time to time for a slurp of water from her daisy bottle, but I never see Jack. I guess he is off enjoying himself. I am enjoying myself, too, but in a different way to you. You see, I’ve brought my two children to the trampoline park just like you have…but I get to bounce. I wear very sexy lime-green socks with rubber grips that make me feel like a cross between Kermit the frog and Spiderman. I bounce with my 12-year-old son, Harry, because he needs me for safety reasons. He has autism and is nonverbal, so he can’t call me if he needs me or let anyone else know who he is or where I am if he was to lose sight of me. So I stay at his side the entire time. He doesn’t tell me he’s having a great time like Katie tells you when she dashes back momentarily, but I can tell. You read your book, I read my boy. His smile and the “happy snuffle” he does when he’s excited tell me he’s happy. He would bounce forever if he could. I get tired; my legs ache from the incredible workout that bouncing gives them and my bladder control isn’t what it once was. More than once I find myself wishing for a “Tena Lady!” My head aches because I need a drink but I can’t leave the arena because Harry is loving the bouncing so much and I can’t FIND his brother, Oliver, to let him know we have nipped off. If I leave without telling him, his anxiety levels would probably be through the roof and feel distraught. So, I bounce. Sometimes I sit down and Harry sits next to me, snuggled in. I love that. I like to stroke his hair and kiss his head. I can feel him smiling. You look up then and see us. You smile at me and it’s not a pity smile or patronizing at all, like some people send our way. Just a smile from one mother to another. Then Harry and I are bouncing again. Legs and bladder to the test once more. Katie comes over to you and notices us. She pulls that familiar face of curiosity and grimacing that we are so used to and you distract her quickly. She asks you to watch her for a minute — which you do — and then she’s off bouncing around and you’re back to your book. We have a small group of boys come over to point and stare at Harry, so I bounce us over to them and introduce my boy. We chat for a few minutes and as soon as the boys realize Harry is just the same in many ways as they are; they leave us in peace. I see an adult with them stand up and watch what is going on. She sits down once she sees me smiling and carries on the conversation with her friend. Meanwhile, Oliver is testing his skill on a new gladiator style activity where he has to jump over and duck under rotating padded arms. It looks like great fun and he shouts for me to watch. I shuffle to the edge of the trampoline we are on (I chose the one closest to the activity on purpose, as I predicted Oliver would love it) and watch him in between whizzing my head around to keep an eye on Harry. People say God choses “special parents” for “special children” but if that was true, you would think the least he could do would be to equip us with 360-degree rotating heads like an owl. That would help me a lot. Oliver loves the activity and does well. He bounces with Harry at times and gives me five minutes to watch them. He’s an incredible brother, but he wants to be off doing flips and bouncing off the walls (literally) and so it’s not too long before he calls me back, kisses Harry and leaves us again. Bouncing. I show Harry how to pull his knees up as he bounces and I sing with him to the resident DJ tunes played overhead which makes him laugh. My boy loves a good dance, so we do some party dance moves and I catch myself wondering if I have sweat stains under my arms and tell myself not to wear grey again. You’re still reading your book. The announcement comes that its time for us all to leave the arena. Our time slot is up and Katie makes her way to you. As me and the boys are getting off the trampoline, you give me such a lovely smile that I want to hug you. You have given me a glimpse into a world I had imagined I’d have. Sometimes it makes me sad. Today, I’m OK with it. Sure, I’m out of breath and I possibly have a couple of unattractive sweat-stains, but my boys have loved the hour and I was an active part in it. Don’t get me wrong, If I could have my head in a book and enjoy a hot drink in peace for an hour I would be delighted, but that would be a different life for me, and although I would not have chosen this one at the start, I wouldn’t change it now. Plus, I don’t know what you deal with outside of this hour. Maybe you need that down time as much as I do. I smile back as you close your book and reassemble the flask. As I put Harrys shoes on and ask him if the day was good or bad, he smiles at me in a way that radiates absolute delight and says “goooood” before kissing me, at which point my heart bursts. You might have the life I will never know. You might enjoy peace, relaxation and average blood pressure, but I have the joy of a life few are ever blessed enough to know, calves of a bison and a lucrative sponsorship deal with “Tena Lady” (OK that bits not true but the calves are rock hard!) Have a lovely life. Follow this journey at Our Altered Life. We want to hear your story. Become a Mighty contributor here .