How do you think that would make you feel?
This week I had to write a 'pen portrait' about L for his tutor group and teachers at his new senior school, to help him settle in, and to help introduce him to everyone. I want them to know what to expect from him, to help them show him what they expect of him, and also for them to know what an amazing kid L is.
It made me so desperately sad to have to sit and list all the things that make him different, and I hated it. I sat and sobbed my heart out until the early hours, in front of a computer screen with a blank document open on it. I know exactly how much work L can be, more than anyone. I am the one that sat by his side when he was so sad that he said he wanted to die, I am the one that stood and fought his corner when he was treated unfairly by kids who should have been taught better and by adults who should bloody well know better, the one that held his hand in the night when he was in pain and discomfort from the casts on his legs.
I have been there throughout. I am still here. It is exhausting.
But he is worth it.
Every hour, every minute of missed sleep. Every single tear I have shed. Every second of every day that I have spent being his mother has been worth it. I will do this every day of my life, until the last breath leaves my body, I will love him and care for him no matter what. Whatever "flaws" he has, whatever makes him different - I will love him, because those things make him the awesome, brilliant, hilarious, clever, lovely young man that he is.
In the pen portrait, I explained a little about Autism, with a little help from The National Autistic Society website because they just explain it so much better than me - how Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them. That it is a spectrum condition, which means that, while all people with Autism share certain areas of difficulty, their condition will affect them in different ways.
I explained that he finds a lot of noise and activity overwhelming. That he will sometimes say inappropriate things, or stand too close to people. That he can be easily led, and doesn't understand sarcasm. How he doesn't like to make eye contact, and sometimes will need to sit and cover his head just to give himself some peace, and I asked them to please let him do this.
I know not everyone will understand, or want to. I know there are people who will abuse, and take advantage, and be unkind. But I hope that by laying my heart bare, by being honest and open - maybe I can help change their thinking. If I can make just one person understand then I know I have helped, even just a little - because a little understanding can go a long way, and it makes a real difference.
Aww how heartbreakingly honest Julie it made me cry, my brother has autism & last week I took him down to enrol him in his second year of college & I wanted to say all of the above things but couldn't find the words. The tutors however just took him in their stride & treated him with respect that any 18 year old should be given but with the additional patience he needed. The world is becoming so much more aware & accepting but we all still worry I'm sure L's school will be the same Xx
ReplyDeleteOh sweetheart. I have had to do something similar for Aiden, it's heartbreaking. Think of the good it will do xxx
ReplyDeleteOh sweetheart. I have had to do something similar for Aiden, it's heartbreaking. Think of the good it will do xxx
ReplyDeleteI'm struggling with my son at the moment (I'm not sure about any behavorial issues but sometimes I do wonder..) I've been thinking of ding this for his misery teachers so understand what upsets him and causes him to scream or get upset or unfortunately recently to lash out :(
ReplyDeleteThanks for sharing, brought tears to my eyes I hope senior school treats him well xx
Yesterday, J's school sent a book home (by accident or design, I don't know) listing every single bad thing he did and said last year when he was going through his awful patch. I couldn't believe that I'd never seen it before, that they'd never shown me it before, that somehow they didn't think it was relevant to take to the paediatrician etc. It made me cry, to see in black and white, how much he struggled without their understanding.
ReplyDeleteI did a verbal portrait for him, going into year one, but some stuff they just have to wait for him to show because they never believe how he can be until they see it.
*hugs* In this, you're never alone. x
That is such a beautifully written post. He sounds amazing and I hope that he settles in well in his new school.
ReplyDeleteAww how heartbreaking that must be. :(
ReplyDeleteThis post is so beautifully written. xx
I feel this way every time I fill in a form, it's like accentuating the difficulties. I'm planning a One Page Profile for school, but interestingly have procrastinated thus far. But yes, we must think of the support it will bring.
ReplyDeleteHayley
I imagine this was incredibly hard to do but trust me it's an invaluable tool in a school to know and learn each individual child's differences as then we're equipped to meet that childs needs much easier.
ReplyDeleteSee it as sharing your knowledge so they can try and emulate how fantastic you are at school!
AliceMegan
This is a very emotional post, it must be really hard and tiring to explain everything for them, but at least they do want to know. Hopefully he will settle in just fine.
ReplyDeleteA beautiful post, so touched me as you wrote the words right out of my mouth! I feel very much the same with my daughter, lovely lovely post xx
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