If I could talk to that mother who left the hospital that day I would tell her this about the year she’s about to live.

Photo: @nedintheclouds

 

Photo: Adam Robertson

As part of National Autism Awareness Week I wanted to share this inspiring letter from Claire.

Claire is a mum of two beautiful boys and writes a blog Ned In The Clouds about Autism and her son Ned who was diagnosed when he was 2.  Claire also organises the phenomenal ‘Aut:ction’ fundraising event, an Instagram auction which is now in its third year and has so far raised over £17,000 for the National Autistic Society. For more information and to get in involved visit Claire’s Instagram @nedintheclouds.

 

It’s been a year. A year to the day that we sat across from the doctor who told us “your son is on the autistic spectrum”. A year since everything changed forever.

At first it’s too much. It’s too much to bear. Your heart feels like it’s going to beat out of your chest and you want to scream at the mothers outside the hospital “why him? Why my son?, why not yours?”. You don’t though. You thank them for opening the door and nearly burst from holding it all in.

You somehow get home without screaming and your husband quietly ushers your newly disabled little boy into the house so you can stay in the car and let that scream out and hurt your hands hitting the dashboard.

That’s all you’ll allow yourself for now though because there’s a little boy indoors and he needs his lunch.

You have to tell people then. Telling your family is just about the hardest conversation you’ll ever have. Because they love that boy like you do. But they don’t cry- at least not in front of you. They ask what they can do. They rally round and make tea and cut out magazine articles about therapies and schools and tell you you’re doing a good job. And they really mean it. And sometimes you’ll even believe them.

The paperwork they gave you at the hospital has been sitting in a drawer because you can’t bear to look at it but slowly you will feel brave enough to look through the support group leaflets and the stuff about benefits. Benefits you never wanted. There are questions you’ll have but no one to ask. But there is work to be done. Forms mainly. Endless, endless forms. It’s a headache. (It doesn’t end by the way. There is always paperwork. A constant, consistent weight on your shoulders and a pain in your arse).

Then you have to tell the rest of the world. They don’t make “My child has autism” e-cards so you have to be brave and just do it. But not too brave. A text message will do. The replies are awkward though. Of course they are. It is awkward. Be ready though because here’s the truth. Some of your friends will let you down.

But, some of them won’t. And over the year you’ll make new friends. Wonderful, hilarious mums of kids who have special needs like yours. A group of women who just GET IT. You are an army and together you are stronger.

You’ll also make new friends that you’ve never met in real life. Hooray for social media. People who’s lives your child will touch just by being him and who support you when no one else does. They won’t ever know how grateful you are for them even though you tell them over and over.

You enter a world that you never knew existed. You are enveloped by workshops and courses and lectures. You bump into the same people at all of them and suddenly you realise you are in the special needs community. They have accepted you as one of their own. You are a fellow warrior.

You’ll get lucky. You’ll find him a place at a special nursery. A place of kindness and understanding but also skill and knowledge. You’ll learn a lot from them and so will your son. They will give him his voice.

He doesn’t change by the way. That happy boy you walked into the hospital with that day stays that happy boy. He learns more words and with help and a lot of work he will learn to ask for things. Slowly, slowly every day there is a tiny step forward. You’ll change your expectations. You’ll be thrilled at the smallest of things. The black and white of the paperwork may remind you that his developmental charts and graphs remain the same but you can see it. You can see it happening in front of your eyes. He learns a new word. A new concept or a question and it’s like he’s conquered a mountain.

The worry never leaves you though. There is a ball of it in the pit of your stomach that turns over every time you remember. You go to bed each night and each morning the same thing happens. It hits you afresh every day. My son has autism.

You have to push the distant future away because it will drive you to madness. Will he get a place at special school? Will he learn to talk? Will he make friends? Will he cope with the world? Will he live with us always? How will we afford it? Will he find love? And the big one. The one no one talks about.

What will happen to him when I die?

So you push the sick feeling back down and think about the next few weeks instead. You can cope with small blocks of time. The next meeting, the next school party, the next bus ride.

But do you know what? There is joy. Joy in every single day because you have a clever, beautiful little boy who laughs like a drain and wants to be tickled and cuddled and thrown upside down. His brother will join you and be hilarious and will look at his older sibling like he’s the king of everything.

You will have BBQs and go to the seaside and paint the stairs and live a life of laughter and love.

You won’t believe it now but there is humour in autism. And sometimes it’s ok to laugh. You’ll find yourself in ridiculous situations and singing ridiculous songs in public. You will be a better person and a better mother than you ever thought you could be. Your husband a better father although you always knew that he would be. You and he think as one. Bonded through love and through a situation neither of you could have expected. You’ll pull together and love fiercely. Those two little boys and each other.

You won’t believe it now but you will be ok. I promise. That little boy will make it easy. Keep telling his story. He is your heart and for now you will be his voice. Until he finds his own of course

X

For more information on Autism or to make a donation to support the life-changing advice and support they offer families visit The National Autistic Society.

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2 Comments

  1. March 29, 2017 / 10:22 pm

    This is so beautiful and Claire is such an amazing woman. I’m totally in awe of her and of Ned xx

  2. Ruth
    March 30, 2017 / 10:41 am

    So beautifully written, however there are many parents that find themselves without partner post diagnosis, I am one, despite having been with their father 15 years. He couldn’t comprehend a not “perfect” son and he and his family do not accept the diagnosis of now both children (an older sister later diagnosed) and have cut all ties. In a way its good, no more criticism of being a bad parent with uncontrollable children and my “Earth Mother” approach to parenting having caused the problem. I may well be an Earth Mother, but more, I am a Warrior Queen, Advocate and Shining Sun. They are my wonderful blessings, not disabled not disabled but Abled Differently.

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