A letter to the parents of a child with no diagnosis

Dear parents of a child with no diagnosis,

I want you to know that I see you.

I want you to know that I feel your pain.

I want you to know that you don't need to do this on your own.

I want you to know that no matter how alone you may feel right now, there will be better days on the horizon.

I want you know that I understand how it feels inside when passers-by, or even worse your own family, judge your parenting by criticising your child. Or brazenly stare as your child has a meltdown in the supermarket. You want the ground to swallow you up and make it all go away.

You want to scoop your child up and hide them from the world.

People can be so cruel. It hurts so much. A raw deep emotion that only someone who has faced those stares can understand.

I also want you to know, that I know how it feels inside to be on the receiving end of your child’s challenges.

You feel every emotion with them, you are in the firing line and sometimes get hurt physically. I want you know that they don’t mean to hurt you. It will get better, and it won’t always be like this.

I want you know that I understand those strange emotions we feel as parents when we are hurt by our own child. We are their safe place, the person they can be themselves with… and that can take its toll.

So, if you are reading this today and recognise anything I am saying, then please…look after yourself too. Because living in a high state of alert and constant stress can make you very poorly.

Trust me I know.

Please believe me when I say that it’s not a sign of weakness to ask for help.

It’s not a sign of weakness to feel overwhelmed with it all.

It’s not bad parenting to battle with your own mental health issues when you’re trying to put on a brave face for the world to see.

The uncertainty of the situation you are in while you are waiting for answers in incredibly stressful. It consumes your every waking moment and haunts your sleep most nights.

I want you know that although the wait for answers may be long, those meetings at school may be strained and the support you receive as a family may be non-existent…that I see you, and I am with you everystep of the way.

I want you to know that on those days when you pick your child up from school and there has been another issue, or when that parent in the playground throws accusations your child’s way without realising how difficult simply getting to school is for your child... well I want you to know that I am here.

Me and a whole army full of parents up and down the country that know how it feels to be stood where you are right now…. Scared. Alone. Overwhelmed. Isolated.  

I want you to know that we are right by your side.

Don’t be afraid to ask for more support at school. Put support strategies in place now. It will do no harm to your child at all…diagnosis or not.

You know your child best so have more faith in yourself. Your child may not yet have that elusive piece of paper but don’t let that stop you doing what you need to do. Timetables, visuals, social stories, sensory diets… whatever works.

No matter what people may think or your family might say. Put any support you can in place now as early intervention is key. We don’t have time on our side like the government seems to think we do. I waited 5 years for my son to receive his diagnosis. Its not good enough.

So, don’t wait.

Be proactive.

Piss people off, don’t worry about upsetting people, become a pain in the rear, be your child’s voice and knock on doors until you get the help your child deserves.

I also want you to know that eventually, when you have that piece of paper in your hand, the one with your child’s formal diagnosis on it for all to see, its not going to solve all the problems and suddenly make everything all better. This is your life now and that can take some adjusting to.

I want you to be prepared for the wave of emotions that will hit you when the day finally comes. You may feel a mixture of relief, anger, sadness and some people even feel grief.

You may feel relief that it wasn’t all in your head, that is not your bad parenting and relief that now you may be able to get the support you need.

You may feel anger, asking yourself why my child? Where is the fairness in that? You may even question your own faith. I know I did.

You may feel sadness and grief. Grief for the life you thought you would have. Mourning the loss of all those things that you imagined you and your child would do together.

No one has the right to tell you how you should feel, or how you should react to getting that diagnosis for your child. It is a deeply personal experience and it is also a lot to get your head around, I’m not going to lie to you.

When your child gets a diagnosis, it can hit you like a tonne of bricks.

But that doesn’t mean that you love your child any less, or want to change them.

Please give yourself time… be kind to yourselves and let all those feelings wash over you, do what you need to do to get through those first hazy days of diagnosis.

Then will come acceptance.

You will still have battles. Face judgements and have bad days.

But there will also be lots of good days. You will want the world to see all the amazing qualities your child has to offer.

Your child will have the protection that a diagnosis provides to help you fight for access to services and get the right support at school.

You will have answers, and with that comes confidence in your own abilities.

And then life will settle into a new rhythm. You will be on a different path and soon that its OK. Its not what you expected, but this new road has some amazing views along the way and has a lot to offer.

I want you to know that no matter how long you have to wait for answers, no matter how hard things are for you all now. There is light at the end of the tunnel. And you never have to do this alone.

And your child may not be able to thank you for everything you do for them… but I can.

Thank you for being an amazing parent. Thank you for never giving up and letting your child know that despite their differences they are never less!

Thank you for your unconditional love and patience. And thank you for putting your own life on hold in order to support your child.

I see you, and I am thankful for everything you do.

Our kids are amazing…. and so are you!

With love,

Mrs M x

Mental health and autism, a rollercoaster ride

As the track clacks rhythmically under the carriage and my grip tightens on the handlebars slowly we climb higher and higher into the unknown.

My stomach flips as I fight to keep my eyes open when every fibre of my body is telling me to squeeze them shut tight and it will all go away.

I reach out to comfort you but my grasp can’t reach you, you’re just too far away from me.

Fear and adrenaline are pumping through my veins, my sense are alert, I am on the edge waiting for the fall and my body feels weak and jittery.

Higher and higher we climb, the world fades around us and all I can see is the two of us surrounded by a sea of nothingness that is swallowing us like a mist.

I wanna get off, I can't do this I scream inside.

Beads of sweat trickle down my forehead, but fear has gripped my hands in place.

I am frozen on the spot.

You turn around and catch my eye. There is a deep sadness that breaks my heart.

We jolt to a stop, suspended in mid-air, silent and still. We wait.

Time stands still.

Below I can see the miles of track that awaits us. The twists and turns, the loops and bends. And the drop. The drop that we are teetering on the edge of.

I want to get off, I can’t do this.

“It’s gonna be OK buddy, I’m here” I whisper to him as I catch my breath and swallow my pounding heart.

I close my eyes as the carriage kick-starts into motion, I can't stop this, I have to ride this with him, I have to be there for him… somehow I have to be brave. No matter how scared I am, or out of control I feel, we are in this together….

Sometimes being a mum feels a lot like being at the funfair. There are moment of immense joy and excitement, thrills and laughter. Those photo moments that capture the memories to treasure forever, that keep us going and give us strength to fight on.

But there are also moments of fear and anxiety, self-doubt and worry. That feeling of adrenalin when you queue for the Big One, or that sickening feeling when you think for a split second that you have lost your child in the crowds.

Some days I am the smiling mum waving proudly as my kids ride the carousel.

Some days I am the driver in the bumper cars, knocking obstacles out of their way.

And some days I am sat behind them on a roller-coaster. With no control over what’s happening, no way of getting off and wondering how on earth we are going to survive this as my basic instincts take over my body.

This is the situation I have found myself in.

You see my sons special interest has decided to take us on an unexpected roller-coaster ride into the unknown. It’s become all-consuming and life changing.

I have always encouraged my sons special interest. I have never seen them as a threat before. For me they have always been a way into his world. They have allowed me to share precious moments of connection with him and they have always been a way of engaging him with the world around him.

But over the last few weeks his all-consuming love for animals has opened the doors to obsession.

It has quickly seeped into every aspect of his life. Swallowing him, filling him with fear and anxiety.

Why do humans eat animals, why is there such cruelty, how can we let this happen?

His obsession and anxieties have stopped him interacting with people, made him confused and angry and taken away his ability to function in school.

How could I let this happen? How did I not see the warning signs?

I feel like I am the top of that rollercoaster, useless and scared.

How do I get him back, how can I help him see that his obsession is making him feel so sad? His love for animals has become something I now fear. He won’t eat, he can’t talk about anything else, and  I feel like he is losing himself. The special interest I respected and admired has become an obsession that I can’t contain.

Mental health and autism provision is chronically underfunded in this country, and I know there are many parents like us up and down the UK in the same position as we are. Scared, overwhelmed and worried for the future.

I know I have to ride this white knuckle drop on the roller-coaster with him, and somehow I have to find the strength to fight for services, support my son and navigate through the issues he is currently facing. I will do that because I love my son. My children are my world and I will never give up no matter how insecure and alone I may feel. No matter how much I want to shut my eyes and make it all go away… it won’t, so I have to do this.

I can’t take him to the doctors and get him a prescription to make it all better like I could if he had a cough or a cold. But his mental health is just as important, if not more so… so should be taken by seriously by the government and policy makers. Because there are thousands of families like mine struggling to do the best for their child. Struggling to help them and barely keeping their head above water in the process.

And I know deep down that I can’t beat myself up for not seeing this coming. The dance that my son tiptoes with his mental health is so delicate, and intrinsically linked to his autism, that it means that sometimes these things are out of our control, and can creep up on us when we least expect it. No one could have seen this coming. All I can do is my best.

So for now, I will hold on tight, and keep going. As scared as I may be, I will never give up, I will never leave him to face any of this alone.

We’re on this roller-coaster ride together my darling boy, hold on tight, I’ve got you x