Today Sonny and I did something a little different to what we usually do. We enjoyed a little quality time together, just us two. We’ve had a really lovely half term over all and it came at a crucial time for us. It’s amazing how this one in particular changes when you take school out of the equation. He’s enjoyed time at home, going out and about with minimal demands. I can’t wait for the summer holidays!
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The walk to school each morning takes us roughly 20 minutes and that’s on a good day. As tiring as the walk can be and no matter how many times I get frustrated with myself for why-oh-why not learning to drive pre children, the long walk in the crisp morning air is good for us. We try to find ways of passing the time and make the walk to school appear quicker.
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Last week I wrote a piece on why I’ve chosen to fundraise for a local charity called SPACE for this years World Autism Awareness Week. I wanted to take the opportunity to explain a little more about the charity and what makes them so worthy of your donation. Space is a Hertfordshire based charity supporting parent/carers of children and young people on the Autistic Spectrum, with Attention Deficit Hyperactivity Disorder (ADHD) or a related condition. The group has been running since 2007 and became a registered charity in 2017.
Read more ›Space is a charity supporting and relieving the needs of families and carers of children and young people diagnosed or under assessment for ASD, ADHD and related conditions but not exclusively.
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With the reality of Sonny turning 6, I feel a monumental shift coming in the dynamics of our family and Autism parenting as I’ve known it to be. A whole new bundle of worries and what if’s.
So why is it that Sonny’s now 6 do I feel apprehensive? I mean we have no upcoming transitional milestones such as his first day of school, first school trip or first sleepover. We’ve accomplished diagnosis. All those milestones have either been and gone or are nowhere close enough for me to start fretting over.
On the way home from school this evening my eldest son, aged eight, opened up to me and ranted all the way home. As insignificant as this may seem to others, it meant a great deal of importance to me. You see, he’s a special needs sibling, he’s also the eldest of his two brothers and he has learnt through trial and error, keeping quiet and staying out the way keeps him out of the chaos at home. It’s unfortunate and it hurts to watch him saunter to his bedroom as soon as we get through the door, but truth hurts. The reality of our situation is that often he just wants to be alone, doing his own thing, away from the drama. I can’t say I blame him either.
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Riley struggles the most when it comes to having a sibling with special needs. Even though Sonny was only diagnosed with Autism in December, the effects of his disability have been felt throughout our family unit for years. You hear about young carers and a little about what life is like for them but Riley wanted to share with you his thoughts and feelings. He wants you to know what life is like having Sonny for a little brother.
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Having a child with special needs is often lonely. The fight for support never ends and it causes exhaustion and illness. I have suffered chronic pain since the beginning of our journey and I believe that is through continuously high stress levels. They say parents of special needs children have the same stress levels as combat veterans. With the support I have received from fellow SEN parents, life has changed so much for the better. If just one parent reads my blog and feels a little more equipped and a little less alone, I’m happy.
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It’s easy to get caught up in negative thought patterns and behaviours when the day gets tough. It only takes one thing to really get your goat and that’s it, it all spirals from there. Except I learnt that’s only IF you let it. One thing I always try to do is see the positive in everything, in everybody. It hasn’t always worked in my favour but one things for sure, only when you recognise the great in every day and look back do you realise, life is actually quite wonderful.
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13th December 2017 was a perfect day for diagnosis. That day drew a marker in the sand. Our two year struggle understood and validated by professionals. No one can take that away from us, we fought hard to get here and finally we can move forward. I gathered up all the stress and anxiety from that time, all the tears and tantrums and packaged them neatly in a little box. I sealed it shut, labelled it ‘Chapter 1’ and put it away with all the other things that belonged in 2017.
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Sonny refused to eat his breakfast. He was reluctant to put on his shoes and at no cost was he going to wear his coat. It was incredibly windy outside and on our walk to school I told him the story of the wind and the sun. If your not familiar with it, it’s one of my favourite Aesop’ s fables. The wind and the sun have a competition to see who can get the little boy to take off his coat. Sonny loved it and he put on his coat and clung to it tighter the harder the wind blew.
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This week, after a nearly two year wait, we received Sonny’s official Diagnosis of Autism Spectrum Disorder. Two years is a long time to tread water and I’m so relieved it’s finally over.
I needed to have it confirmed what I knew in my heart was true. I needed someone to acknowledge our struggles and tell me this is why. I needed to hear “it’s nothing you’ve done wrong.” I needed that proof and confirmation to be able to tell all those who judge us on face value because ‘Autism doesn’t have a look.’ Autism is a hidden disability.
There are many things I thought I would never experience as a parent. A long time ago I was guilty of being that ‘judgy’ parent. I would be the lady silently assuming that your child, the one kicking and screaming in the supermarket was plain and simply spoilt. I would see children lashing out and screaming in the faces of their parents and look on in horror thinking ‘my child would NEVER do that.’
‘I would never be THAT parent’
Picture the scene. You’re stuck in the middle of the ocean, no boat and no oars. There’s nothing around you to hold on to, there’s no one to guide you and there’s nothing in the distance signposting help nearby.
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Not too long after that incident, I sat with the Head Teacher, SENCO and Class Teacher for a good length of time. We discussed his behaviour plan in great depth, what was working well and what wasn’t working so well. We hashed over what we could do to make things better and the outcome was pretty good.
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On the last day of term, I felt such relief! Finally, we had so much to look forward to. I was excited for the lazy mornings, leisurely afternoons and chilled evenings watching movies, snuggled up together on the sofa. Quality family time. However, Sonny finished reception like a compressed spring. The problem you face with a compressed spring is what happens when you finally decide let it go.
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Life with three boys would be challenging for anyone, but throw Autism and the end of the school year into the mix and it’s a whole different field you’re playing in. I’m not afraid of arduous work, but there becomes a point in which enough is enough. ‘You can’t pour from an empty cup’
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This morning Sonny was knocked off his scooter by a car reversing off of it’s drive. The lady in the car appeared to be in a rush. Although she may have saw me walking towards her with the pushchair and Riley next to me, she failed to notice Sonny on his scooter only ever so slightly ahead of me. She obviously thought she could reverse out on to the road with plenty of time and space between us.
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Sonny.
Today you are going on your first ever school trip. You’re off to visit a farm with your 1:1 for the day Mrs H and all your friends at school. You’ve been excited about it for weeks now, asking me every morning if it’s Wednesday yet… if it’s ‘the Wednesday yet. You’ve been reciting the days of the weeks using your fingers in an attempt to work out just how many more days you have left to wait.
The time has finally come, it’s here and you’re off on a coach with the whole of Reception. Are you feeling nervous?
The historical Knebworth House is local to us. A mere 10 minutes drive, it’s famous worldwide for its rock concerts, open air cinema and as the home of Victorian novelist Edward Bulwer Lytton. We pass it all the time on our travels but have never been.
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I was going to keep quiet and fly under the radar as I have done my entire life in fear of ill thought or rejection. I was going to plod on, keep calm and stay quiet like always. Say nothing and keep my scars hidden where no one can see to pass judgement on them.
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Those of us who have been following our journey and have read our most recent blog post will have known that two weeks ago we received some devastating news. Our entire family was brought to it’s knees. Those that know me well, will know that family means everything to me, Joe and our boys mean everything to me.
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Just when things settle down and the future you’ve always dreamed of, craved even, is just millimetres from your outstretched fingertips, life throws one hell of a curve ball. I don’t just mean a little hiccup or minor bump in the road, I’m talking CATCH! as quickly as the word sounds, a forceful chest pass, ball-on-fire type curve ball.
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I loved the way my nicknames for them flowed effortlessly off the tip of your tongue and how they would chase you around calling your name. It was the way you nibbled their toes and pretend to pass out from the stench of their feet, even though they didn’t smell at all. It was the way in which you snuggled together on the sofa with the iPad while stroking their hair the same way I do.
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A lady passes us most mornings on route to school, happy, smiling and completely free of judgement at the sight of me, sometimes stressed and often in a hurry, a young girl with three young boys in toe. A few weeks passed quite standardly, weeks of smiles, hello’s and blasé comments about the weather, be it pouring with rain or warm beaming sunshine there was always something to say. I wasn’t a lover of small talk until one day this lady said something to me that took me by surprise.
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We have Grandmothers, Mothers and Aunts. Grandfathers, Fathers, Uncles and even older siblings that share some of the parenting, each with their own important role. Beyond our circle of friends and our family unit, we have teachers.
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Sonny suffers terribly with anxiety and having toys to hold helps to keep him calm. He has a strong need to fiddle and chew resulting in nails so bitten they have bled or become infected. I have brought so many different things in a desperate bid to distract him from chewing his fingers; Playdoh, Blutac, Theraputty, twisty toys, bendy toys and stretchy dinosaurs. We even tried various techniques I had learnt on an Autism course, but still Sonny chews his fingers.
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Reception performed their school play this morning to their parents and the rest of the school. Except this time, Sonny wasn’t going to be there. We went to school this morning and walked past the long queue of parents, eagerly waiting to get inside and for the play to begin. Me… I walked home feeling just a little disheartened.
I love you today because one, two, three, four, five years have passed since I gave birth to you. Five little but long years ago, I held you in my arms for the very first time. And since then I have continued to hold you, guide you and protect you from the world that surrounds you. The world that overwhelms you so.
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To the mum that high fived me for getting through another morning school run, I salute you! I see you fellow mamma, looking occasionally rushed and flustered on route to the classroom door. We get one other. We don’t pretend this whole mothering thing is easy. It’s certainly not.
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It’s merely the middle of the week and I am already waving the white flag of parenting. By definition, waving a white flag is a recognised symbol to signal a ceasefire. It is also used to signify surrender, since it is often the weaker party which requests negotiation. A wave of chaos has entered our house, which is typical after a busy or exciting weekend but it’s caught up with me already.
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Chicken pox. One of childhoods most common illnesses. His two brothers have had it and I had wondered how it would differ for Sonny when he caught it. Would it? How would it? Would it be harder for him, having Autism? His little brother Zachary was poorly with chicken pox two weeks before and I assumed him now knowing what Chicken Pox looked like, may help to prepare him. (Who was I kidding!)
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Have you ever felt so angry, so on the edge of control, so at the brink of sanity and rational thought, that it’s scared you? Have you ever been pushed so far, that when despite begging out loud for it to stop, it doesn’t and you explode? Have you ever lost it? Do you remember what that felt like? Red hot blood coursing through your veins that leaves you shaking in despair.
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At the age of 3, Sonny weighed a total of one and a half stone. Yes. You read that right. To compare, his healthy baby brother only 1 year old, already weighed a stone. This picture below hurts my eyes and my heart. He was nothing but skin on bone and you could see his skeleton through his pale skin. His face bony, his eyes sunken and gaunt. When he was sat down you could make out every outline that formed his pelvis and his spine. His age 18 to 24 month clothes hung from his body, never fitting him right. I felt consumed with guilt each time I saw his fragile body without clothes as though it was somehow my fault.
There are so many times in which I find myself in a constant flurry. These last few weeks, it’s been all day most days. In this I know I’m not alone. So many things to do, so many places to be, so many people needing your attention and sometimes – sometimes there are just not enough hours in the day.
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There is one question I get asked most days and if only I got a pound each time, I’d be filthy rich. Three boys? And you’re how old? How on earth do you do it?! You must be busy. You must have your hands full. How do I do it? I don’t really know in all honesty. I don’t know any other way.
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Your natural hair colour will always be the prettiest. You were born perfect just the way you are. Changing the way you look on the outside won’t change how you feel inside.
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Instead he became fond of the softness of the skin on your head as he kissed you. Fond of your little fingers, how they were just like his only very small, and how adorably cute you looked when you smiled at him for the very first time.
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Every small step for us is an important one. It doesn’t matter if the day doesn’t go to plan, if it isn’t perfect or doesn’t mirror the way everybody else is spending theirs.
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Knowing all I know now, I wondered how on earth we ever reached the end of that pier in the first place. I don’t remember too much about the walk back to our spot on the beach but it must have been calm. Quiet and reflective. My little boy was different. I knew it then. I just needed to know why. I needed to know how I could help him.
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On Friday, Joe, Sonny and I took to the road. We had dropped Riley off at school to take the coach to the Peter Pan pantomime. Zachary went for a play at his Nanny’s house while we embarked on an adventure of our own. We’d been invited to Luton and Dunstable Airport Fire Station to meet some very special people.
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I did it again Sonny. I underestimated you. It seems to be somewhat of a habit of mine. Does your Autism make me more protective of you compared to your brothers? It’s almost as though my innate motherly instinct takes control and does all it can to protect you from disappointment or harm. I allow Riley and Zachary to go that little bit further, I allow them to make mistakes, I give them room to stretch their wings and fly.
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Did I cherish you enough in those two years before your brother was born? Did I soak up every little bit of you? Your little fingers and toes, the smell of your freshly washed hair after bath time, the dimples in your cheeks when you smiled at me? Was I everything you would wish a mother to be and more? I hope so.
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