My best friends…the beautiful flowers

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Sometimes I just don’t want to know about my daughters day at school. It seems contrary to all good parenting advice but when I asked my six-year-old whether she had any friends the other day she told me she spends her outside social time at school talking to and looking at the “beautiful flowers”. I just can’t bear to hear any more.

I know the school well. I know the names of every single child in her class. I even volunteer within the school for several hours a week. I talk to the Head on first name terms.

My daughter is not being bullied. She is just unable to play with the other children. Her social skills are limited. She takes what the other children say in a very literal way. She is vulnerable. Her interests are far different to the others of her age and ability. She is socially isolated and happy in her own world. She is surrounded by children who know and understand popular culture, current television characters and have physical skills she has yet to even attempt. She has only one current interest which not one other child in the class have even heard of. She is a little girl with autism in a world of mainstream children.

Her perception of what goes on in school is so different from the other children. Where others listen to a story she will home in on that one child who is biting their nails and tell me at home how biting your nails is not good and that child should have been told to stop. It is only when I deduce that the children were sitting on the carpet that I figure she was perhaps having a class story. Her tales of school are all about what children did to break the rules, whose name was taken down the tree today (a behavioural chart used in the class) and who touched her and when (she hates being touched!).

Try as I may she can not grasp that the world can be seen another way. Her autism prevents her from seeing things from other people’s viewpoints. And this is impacting on so much now. Even in the simplest tasks like reading. When I asked her the other night why she still had the same few words home to practice when I was confident in her ability to know those words she said, “I read them to you mummy so why do I have to read them to the teacher too?” It was a genuine question. In her mind she knows them. She knows that and I know that so why would her teacher not know the same thing? She is genuinely ‘blind’ to the fact the teacher will not know she knows them without her reading them to the teacher. The same way she thinks I know exactly what goes on in school because she does so why would I not too?

This is happening to so many children. ‘Inclusion’ is the way to go apparently. It is a very delicate balance between what is right for my child (and many like her) academically whilst balancing the child’s social and emotional wellbeing. School is like a mini real world where she will be misunderstood, become confused at things others find easy and just interpret everything in a different way.

She is the proverbial round peg in a square hole. It is about allowing her to be her, allowing her to be autistic but balancing that against her mental wellbeing and self-esteem when she seems so different. It is a very difficult balance and one that needs very careful monitoring.

So today as I walked my beautiful daughter home from school, with trepidation, I once again asked her how her day had been. “Oh mummy, wait until I tell you what happened to my friends today…” It was beautiful to hear her happy, animated and excited and talking about that elusive thing we call ‘friends’.

Has someone lost a tooth, had a birthday, had a new baby brother or sister, or even asked her to play I silently wondered.

“My friends, the beautiful flowers, opened up for the first time today and now they look even more beautiful!”

Maybe I have it all wrong. There is an area in her playground full of greenery, shrubs and flowers. But the one flower my daughter noticed was the one that was different. Because it was more beautiful, more noticeable and something very special indeed.

I think today she just told me the most beautiful thing about school I ever heard.

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My dear child

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My beautiful child,

Words can’t adequately describe how much I love you. From the very moment I first saw you you have had my heart. Watching you grow and learn and looking into your beautiful blue eyes every day brings me more joy than you will ever know. You are amazing. Whatever else you read in this letter always remember that. You are amazing my child. You are special. And you are very loved. And mum is so so proud of you.

As I write this you are not quite aged 5. You are innocent, living in the moment, and getting thrills from swinging on a swing in the park, playing hide and seek behind trees and still sitting on my knee for tickles. We can still sing nursery rhymes together and laugh at silly cartoons and snuggle up under a blanket together. You are still leaving room in your bed for me and wanting me to read you stories. You tell me about numbers and trains and Topsy and Tim. I love the sound of your voice.

And you don’t know yet that you have autism. You are not aware that you are different yet. We talk about autism because you know your brother has it. And you are aware how different he is to you and other children. You know he can’t speak, or read books like you, or play games the same way as you. You know he cries alot and is rough with you. But I watch you with him and I am so proud of you my darling. The way you move his cup of juice for him so he doesn’t spill it. The way you sacrifically give him the book you are reading because you know he wants it and struggles to wait. The way you help mum wash his hair and reasure him that it won’t hurt. How you will go to his room and find his favourite toy and bring it down to help settle him. How you have recently started to tell him all the things he is pointing at. 

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I am so proud of you. And I pray this kindness and love and compassion you have for Isaac will continue to grow in your life and overflow to others. Your heart is tender. May God keep it that way and protect you and show you the love you show others.

But do you know you have autism too? I tried to explain it to you yesterday but it made me cry. I am sorry I cried, beautiful. I never meant to upset you and it isn’t something I should really cry about. It is raw for mummy just now because it was only confirmed 3 days ago. And mummy’s heart is still tender. Mummy has walked this road already with Isaac and she sees how autism is affecting him, and you and daddy. But mummy loves you more than words can say. You make my heart jump for joy. You bring me delight. You are mummy’s special friend and helper and autism won’t change that.

But as you get older you need to know. Because the world won’t always be kind to you and your brother. And you won’t always be so innocent and care free. It is in your best interest that we keep talking about autism and what it means for YOU. As you have a right to know. You have a lifelong condition and it is my responsibilty to help you understand that. As your development and heart is ready we will talk more and more. I pray God gives me the right words to say to you as you grow and question more. Especially as your memory is incredible and you take everything literally. But, my darling, these are admirable qualities to be proud of, and part of your autism.

Please don’t be embarrassed to tell people you have autism. You know mummy tells people all the time about your brother. And you told mummy one day recently to stop being upset at Isaac because he has autism and doesn’t understand. Mummy isn’t embarrassed you have autism. You NEVER embarrass me. I am ever so proud you are my daughter. Autism is not something to be ashamed of honey.

At the moment you are really struggling socially. But you don’t know and it isn’t bothering you. You love your own company. And that has some great advantages. As you go to school I can see you really excelling academically because you will be happy to sit and work on your own and complete the tasks set. And as you grow and become an adult having the ability to work well on your own will open so many jobs oportunities for you. So never feel you HAVE to socialise if you don’t want to. But as your mum I will be working on making friends and how we can do this together. Because I don’t want you being lonely. One day I pray you will fall in love and want to be with someone. Having the ability and skills to interact with others is necessary in life. So we will learn this together. When mummy doesn’t know how to help I will get people to help me. They might be speech therapists or pychologists or teachers. We will work together for what is best for you. We just all want to help you.

The same with your anxiety. Seeing you so fearful of people is hard to watch. I know your brother has been mean to you and you are so sensitive to noise that hearing people talk and shout scares you. But life is loud my darling. People are not always shouting at you (how could anyone shout at you?), and some people just find loud music nice. Everyone is different. Some shops play loud music. I know how much it hurts your ears when I take you in these places. I am not being cruel. I am trying to help you desenseatise a little. Because sometimes we need to feel the fear and do it anyway. But I am always here for you. Trust me to help you through this. One day you will make the choice yourself what shops you go into and that will be great. But right now you would rather not leave the house and if I don’t help you now I fear for the future. Because you like things to be the same all the time. I know you wanted us to leave the park the other day when other children came to play. But life isn’t like that. You thought I didn’t love you. But it is BECAUSE I love you I made you stay a while. It is ok for other children to look at you, smile at you and want to play. It is ok for people to look at your brother and wonder when he flaps. One day I hope you will understand. Isaac has autism and you have autism. But I can teach you both the skills that don’t come easily. I KNOW you can do this. And I am proud of you for trying.

You were mad I made you put down your game and get on the nursery bus today. Like all young children you would rather play and do what you want than have to comply with others wishes. But your autism makes even the simpliest change hard. So you cried. When I wiped away your tears you thought I would let you stay home. But love is hard. Autism is hard. But we will learn together. We will grow and learn and get through this. Mummy felt your pain and understands. But you are gaining skills you will need for the future. Can I tell you something? Hundreds of us big people don’t like having to stop what we want to do to go to work or school. But we know we have to. It’s rubbish somedays. But the game is here waiting for you and you will be home soon enough.

So yes, my beautiful you have autism. You also have beautiful blue eyes, a contageous smile, a fantastic laugh and you are loved incedibly. Most importantly God says you are fearfully and wonderfully made. That doesn’t change because you have autism. It never will. 

You are so different to your brother, your twin. You are so different in fact to everyone else. Because we are all unique. Don’t ever feel you need to change that my beautiful. Don’t stop being you! Be proud of who you are. Be proud of who God made you. Word’s can’t adequately describe how much He loves you. From the moment He first created you you have had his heart. You are amazing my child. You are special. And you are very loved. And mum is so so proud of you. And always will be. xx

With love, my sweetie,

your mummy x