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Charlie Beswick on life with Goldenhar syndrome, autism and anxiety and finding the joy in each day

Charlie Beswick on life with Goldenhar syndrome, autism and anxiety and finding the joy in each day Posted on August 28, 2017Leave a comment

Charlie Beswick with her sons Oliver and Harry

It was after giving birth to her twin boys that Charlie Beswick discovered her son Harry had Goldenhar syndrome. This meant Harry was born without an eye, eye socket, nostril, ear and jaw. And on top of all that, he is non-verbal, has global delay learning and autism. If that wasn’t hard enough, Charlie’s brother Oliver suffers from anxiety. That might break most people. But not Charlie.  Charlie has faced some tough and dark times, but she fought her way through and I think you’ll find she’s frank, funny and utterly fantastic.

I am so proud, delighted, thrilled and honoured to have Charlie appearing on my blog to tell you what life is really like with her twin sons. She is the creator of the compelling parenting blog Our Altered Life where she charts her personal journey with Oliver and Harry.

Tooting Mama: Charlie, I love reading Our Altered Life. I think you are an amazing woman. Coping with twin boys, that’s enough for most people. And on top of that, Harry’s condition. Yet you keep on smiling, how do you do it? How do you keep on going?

Charlie Beswick: Ah, you’re too kind!

I didn’t always cope like I do now. At the beginning, I didn’t cope well at all. It’s only with time, support from family and friends, a lot of private counselling, a stint of anti depressants, and some really tough moments that made me assess what really mattered that I can be so strong now.

I’ve always been quite a joker and so I find that humour is a massively powerful ally in reducing the stress of a moment and trying to keep things in perspective.

It’s easy to panic and worry but I have to remind myself that it’s the here and now that matters.

I try to stay grounded. If that doesn’t work, I eat cheese and drink gin.

TM: You mention that it was only when Harry was born that his condition was picked up. You had just given birth to two gorgeous boys, and then to discover one child has this condition. How did that feel? How did you cope? How did you get through those first hours, days even months?

CB: I was utterly devastated. I was sooo proud to be carrying twins and so excited to finally meet them.

Me and their dad Mark had planned the next eighteen years in our heads (as you do). To be told that one of our children had only half a face, potential brain damage, kidney problems and may never walk was horrendous. I couldn’t process it for a while. I felt numb.  Then overwhelmingly guilty, convinced I had caused it somehow.

The first few hours were a blur. Harry was taken to another hospital for more tests so I didn’t see him for almost a week. My head was all over the place. I just felt like my whole world had collapsed.

There isn’t a word for that feeling. It’s like a grief.

TM: Can you explain what Goldenhar Syndrome is? How does it impact your family’s daily life?

CB: Goldenhar syndrome is an ‘umbrella’ term for a wide range of bone and skin abnormalities affecting the face and sometimes the vertebrae too. The ear is often affected, sometimes the mouth, eye cysts are common, cleft lip and palate, breathing problems – oh loads!!

No-one knows why it happens but there’s speculation that the blood supply is interrupted between 6 to 12 weeks gestation and whichever part of the foetus is developing at that time is affected. Thankfully the syndrome hasn’t affected Harry internally but he’s at the severe end of the spectrum facially which has presented other problems.

Day to day, I’d say it’s Harry’s autism that makes the biggest impact but we get a lot of stares, whispers and points when people see Harry’s unique face and of course, he has operations and appointments to factor in too.

TM: And is Harry’s autism linked to the condition?

CB: No. Lots of children with Goldenhar have typical cognitive functioning (is that politically correct enough?!) and attend mainstream school.

Harry had a double whammy with the autism. It runs in my family and it’s my own personal opinion that there is a strong genetic link so I wasn’t surprised when he was diagnosed.

In some ways, it makes life harder. I worry terribly about what will happen to him when I die as he’s 12 but functions around 2.5-3 years old.  He has the typical melt downs and life is a challenge at times.

Oliver struggles massively with anxiety and I think a lot of that stemmed from the extra attention and time that Harry needed as an infant due to all of his diagnosis (plus the fact that Harry was a flight risk and more than once I had to dash off leaving Oliver with my Nan).

But on the other hand, Harry is oblivious to the stares and the children who call him ‘monster’ and ‘weirdo’. I feel it for us both and as much as I do struggle with his autism at times I am thankful that it spares him the pain of understanding their comments

TM: And I have read on your blog that you’ve had to learn to stick on your son’s prosthetic ear. Not something we all get to do! How does one stick on a prosthetic ear?

CB: Ha ha! it’s like living with my own little Mr Potato Head!

The ear looks incredible and at this stage in the reconstruction process, we have to stick it on with a super strong glue. It has to set for half an hour first so that it goes ‘tacky’ and then I press it onto Harry’s head and we count to ten (sometimes adding kisses to slow Harry’s counting down!) Et Voila two ears!

It tends to last for most of the day unless Harry decides to pull it off which happens often. The ear comes off daily anyway and we have to clean it up ready for glue and kisses the next morning again.

TM: How do Oliver and Harry get on? I read in your blog he sees himself as the big brother by three minutes and is Harry’s protector.

Charlie Beswick with her twin boys Oliver and Harry

For years, Oliver and Harry just co-existed in the house together.

If Oliver tried to play with Harry he would either push him away, walk off or ignore him. Oliver found that so hard to understand.

I can’t tell you the point at which it changed but now Harry will sit with Oliver and engage with him, usually to get something that he wants, but its progress.

He likes to snuggle up with Oliver and sleeps with him sometimes at his Dad’s house as he has a double bed there.

Oliver is massively protective of Harry. He obviously didn’t notice the stares and comments when they were little but as they got older Oliver felt really hurt by the things children would say and he’d come to me full of rage, asking me if he could hit them.

It was hard to see and I felt helpless a lot of the time. I had to teach my little boy how to be the ‘bigger person’ and explain why people could be so cruel at times.

No six year old should ever feel that way or grow up so fast. As a result, he is incredibly compassionate and understanding and I’m beyond proud of the young man, he’s becoming.

He adores Harry but at times it makes him sad not to have the sibling relationship that his friends have and when Harry becomes aggressive towards him, he is torn between fighting back and not hurting the boy he loves.

TM: How do you deal with awkward questions and people staring?  

CB: I was pretty much house bound for the first few months after bringing the boys home from special care.

Whenever I took them out, a double buggy attracted a lot of attention. Then there was the awkward moment when people saw Harry’s face and didn’t know what to say.

I just felt like I wanted the earth to swallow me up.

Children would follow us around and I would race down shop aisles trying to finish my shopping so I could get back to the car as soon as possible. It was easier to stay at home than face it all the time.

In the end, I just introduced Harry to the children and answered their questions.

Now, I preempt the questions I’ll be asked and I’m proactive in addressing any curiosity.

I would much rather answer questions than have people just stare. I understand that Harry looks different and people will be curious so I am happy to talk to people.

There’s just no excuse for rudeness and nasty comments though, although we tend to get more of that from keyboard warriors on the internet than face to face.

TM: And talking about staring, you had a funny moment on the phone to Harry’s school talking about his prosthetic eye.

CB: Ha ha! There is never a dull moment with his eye and ear!

On one occasion, I was in the butchers and Harry’s school called me to say that his eye was starting to slide out. I told them just to push on the inside of his nose and that his eye would pop out.

The woman serving me looked horrified. Her mouth was open and her eyes were as wide as saucers!

I explained that his eye was prosthetic and she was clearly relieved.

We both laughed at the time but I wasn’t laughing back at home when I realised she’d forgotten to pack my mince!

TM: What advice can you give to a mother who finds herself in a similar situation to you?

In the early days, talking is essential. Not bottling up the natural fears and worries that you may not want to voice but trust me, you need to or you will implode like I did.

I’d also say to try and find the joy in each day. Some days it might be something tiny but the more you look for the positives the more you find and over time you’ll start to replace the sadness or worries with smiles and gratitude for a life you may never have wanted but will learn to love completely.

Nowadays I think it’s important to get out in the fresh air when my head feels muddled. When I’m stressed I walk the dog around the local reservoir or go to the gym to switch off.

I also listen to chakra clearing music at night as I settle off to sleep (Andrew isn’t always keen on the nights he stays over but I tell him to imagine it’s the plinky plonky music in a spa and that seems to shut him up).

And of course, cheese and gin is my standard ‘go to’ coping pleasure!

I’d also say to surround yourself with people who make you laugh and feel happy and confident in yourself. There will be days when you doubt yourself so stay close to those who believe in you.

TM: Charlie, you have this incredible life, both joyous and yet at the same time incredibly challenging. Over the past eight years, you have been channelling this journey into a book. Tell me more about your book?

CB: Its very honest and raw.

I admit thoughts and feelings that I’m not particularly proud of now but my intention was always to write the book I would have wanted to read when I first had my boys and I don’t think skirting around any issues helps anyone.

I want people to know that even When you feel like your world has fallen apart, a life you never planned for can still be amazing.… Click To Tweet

I want people to read my book and walk my journey with me. To feel my sadness and know my joy.

My boys have made a mother from the broken woman I was and I want to share how proud I am of them, and of myself, with anyone who is interested but particularly those who are lost like I was and wondering how on earth they will get through it

TM: And how can people get hold of your book?

Chapter one can be downloaded for free now from the ‘The Book’ page of my website.

It’s had incredible reviews so far!

That will get people onto my mailing list for updates on the pre-order list which will be open next month.

I also update my Facebook page daily with all the antics of me and my boys as well as book news so I’d love people to join us over there at Our Altered Life too!

If you, like me, are hooked on Charlie’s story, then keep up to date by following Charlie  on:

Facebook: https://www.facebook.com/ouralteredlife/

Instagram: https://www.instagram.com/ouralteredlife/?hl=en

Twitter: https://twitter.com/ouralteredlife

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