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