My son is not a problem

My son is not a problem - Littlest and Biggest having fun on one of our walks.

My son is not a problem.

He is not a health and safety risk, a difficulty to manage or an obstacle to overcome. He is not a disability. He is not a neurodevelopmental condition. He is a little boy who fears and loves, who laughs and cries.

His behaviour is not challenging. To label it as such hides his worth, conceals his charm, his kindness, his vulnerability. When he rants and wails, when he lashes out at the world, he is the one who must overcome a challenge. He must adapt to things he cannot control. The world creates problems for him, not the other way around, though we try so hard lessen the burden for him. The language that is used to describe his struggle, it is inherently unfair.

He is not a drain on resources, a budget void to be filled, a form to be filled out. He is not a statistic.

He is exceptional.

A tuft of hair, flecked with gold, stands up at the back of his head. Try as we might, we can never get it to lie flat. It always stands to attention, is always a little out of place. The way he speaks is different to other children. Sometimes, it is precise, factual, full of repetitions, patterns and expressions that make him sound older. When there is something important to say, he stammers. You must pause – be oh-so-patient – for his reply. His ideas are unconventional and full of wonder. It takes time for him to process what he wants to say into words, but it is worth the wait.

At other times, he becomes a jumble of nonsense – made up words, learned phrases, noises and verbal ticks. My son does not run around or play fight. He seldom talks to other children, seems always lost in his own world, always quiet, cautious.

When he is excited, he trots on his toes, flapping his hands high up near his head. If he is anxious, he tugs at his ears and bites his lip. The slightest unexpected thing can cause him pain. His bottom lip trembles and he strokes my arm to feel safe. Huge blue eyes, heavily lashed, look up at me and seek my comfort.

To others, he may appear rude. The expected responses of conversation are not his natural reflex. He seems to ignore, will not say hello, may not respond to your call or answer your question. If you are not in his world, it is hard, sometimes impossible, to penetrate it. But when you can – oh when you can – it is a privilege and an honour to see the world through his eyes.

There is no cruelty in his heart. He is never aggressive, never malicious or spiteful. If he seems so, it is only because he is consumed with frustration. If I mention I am cold, he struggles to bring me a blanket, tripping over his own feet–

“Mummy, if you are cold, a blanket will make you warmer.”

If I say I feel ill, he hovers near me, anxious for me to be well.

“Mummy, I will look after you and you will feel better. Are you better now mummy?”

When asked at nursery if he has a best friend, he replied that his best friend is his little sister.

He likes to explain his dreams –

“I was on a very tall hill and I fell down. But I was ok because it was a dream. Dreams aren’t like real life. They are in your head.”

He loves nonsense. The wonders of the universe make him trot and stammer. Sometimes, he dances along to the songs in Sesame Street.

Every day, we are concerned for his happiness, concerned for his health, concerned for his care and education – like all parents. But he is NOT a concern. He is not a challenge. He is innocent. He is a human being. As much as I want society to see autism, to accept autism – to do that, you have to see to see it, and then see beyond it.

I need the world to see past a problem.

I need the world to see my little boy.

 

Biggest in a play tunnel - My son is not a problem


For more posts about autism acceptance, you may like to read:

Not Less

Autism? More like bad parenting.

The Meaning of a Meltdown

 

28 Comments

  1. Jennifer Haden
    3rd March 2017 / 9:14 am

    This is just beautiful, I don’t really have many words. Really brought a tear to my eye. I wish people could see and view children with autism with more respect and compassion x

  2. 3rd March 2017 / 5:57 pm

    Sounds so very familiar to how I felt about my girl at that age (and still do). I didn’t want anyone’s pity either, I wanted them to see what I saw, that she has to try so much harder than every other child to overcome obstacles that they don’t even know about. She is amazing. Your boy is amazing. We just need to keep on talking about them to make sure others realise. You write so eloquently, and from the heart. You will get the message across. (oh and btw one of my heroes, Dr Ross Greene, prefers to call it ‘behaviour which challenges’ rather than ‘challenging behaviour’ – ie behaviour which challenges us to think of different solutions to the issue which cause the communication via behaviour in the first place…)

  3. 3rd March 2017 / 7:17 pm

    This is such a beautiful post, he has a way with words too. Sweetheart

  4. Kim Styles
    4th March 2017 / 12:00 pm

    Very moving and straight from the heart of a mother xx

  5. 5th March 2017 / 10:50 am

    Lovely post. Bit choked up here… My son is high functioning but his behaviour is challenging. I don’t get caught up in terminology because ‘challenging’ sounds better than aggressive or violent. There have been numerous occasions where I have been concerned for his safety (and others) when he’s gone into meltdown. He doesn’t instigate. He reacts and it’s those reactions which are the problem. I am autistic and understand why he reacts the way he does and it’s all about being aware of triggers and signs of overwhelm. As he gets older it’s my hope that these outbursts will lessen as he learns how to understand and express himself verbally or remove himself from the situation. The problem with people who don’t understand autism is that they just see the reactions and make judgement and these judgements are unhelpful to say the least.

  6. Cortland Richmond
    5th March 2017 / 9:03 pm

    It is the adult world that is a problem.

    I’m almost 73, and that could’ve been me, at that age. When my USAF Dad was stationed in Britain, in the early 1950’s, I was sent to a boarding school, St. Pirans, probably because I was too different for the staff at a school in Marlborough to understand.

    You probably don’t need any reassurance, but I extend it to you; I rather envy your little boy.

    • Someone's Mum
      6th March 2017 / 10:44 am

      Thank you so much for such a lovely comment. I do very much appreciate the reassurance – as a parent it is so hard to know if you are making the right decisions. Your comment made my day. I wish you and your family well.

  7. 5th March 2017 / 9:14 pm

    I recall a swimming party that seemed to cause a problem for the staff there and they mentioned that having a child with autism there with inflatables was a Health & Safety risk. I am sure you can imagine my response The only risk there was my response to their ignorance!!

  8. 5th March 2017 / 10:30 pm

    What a beautiful read and you’ve put a tear in my eye for I can only imagine that the world puts a label on your gorgeous son and they don’t ever see beyond that. I particularly love the way you said you are concerns for him, but he is not a concern. Perfectly worded and I really do hope that with the education you are imparting on others (on me!), we can all be a bit more understanding and take the time to truly understand. Xx

  9. Helen P
    6th March 2017 / 2:41 pm

    Great post – the world needs your honesty!

  10. 6th March 2017 / 4:37 pm

    Wow, I love how adoringly you describe your son. I agree, words like “challenging behavior” lay the blame on the child. In the Netherlands, some professionals call it “hard-to-understand behavior” instead. I like that much better than “hard-to-manage”, or “challenging” even though the words are often used as synonyms. #SpectrumSunday

  11. 7th March 2017 / 12:50 am

    This is beautiful. I am mom to a 2 yr old that struggles with sensory processing disorder. He doesn’t eat solid foods because he struggles with oral defensiveness related to his disorder. I can so relate to this because I want people to see how beautiful he is and how much joy he brings instead of just seeing him as, “the boy that doesn’t eat.” I wish people would just ask about him instead of “is he eating yet? Why not? This isn’t sustainable.” I love my son just the way he is.

  12. Shelby
    7th March 2017 / 11:11 am

    Thank you for the wonderful post. I too have a autistic son, he is 12 now. It’s frustrating how people react to him when he struggles with every day life, especially in super markets, he gets so anxious and I hate the way people look at him when he has a breakdown, the loud music, the crowds of people, even the Lightning can effect him and yet you get the ones who roll their eyes and tut at him as if he being naughty. He is our special boy who has a special way of seeing the world, and every day he teaches us something new.

  13. 7th March 2017 / 12:28 pm

    that is a lovely post, it is difficult for people sometimes to see past the disability, but those people actually don’t matter that much in the grand scheme of things, you have a lovely little boy, my kids rarely speak to one another now they have left home #SpectrumSunday

  14. Deborah Mackenzie
    7th March 2017 / 2:37 pm

    Your son is a blessing! It can be difficult at times, frustrating at times, but children with Autism are blessings. My daughter has high coping autism and there have been challenges, but now she is a very well adjusted and productive adult who works full time.

  15. 8th March 2017 / 7:04 am

    Beautifully written. He is a wonderful little boy, I love how caring he is to you. Melts my heart.

    #KCACOLS

  16. 10th March 2017 / 8:45 am

    Our kids are not problems they are gifts. They see and experience the world differently. Thanks so much for hosting #spectrumsunday

  17. 11th March 2017 / 11:42 am

    Beautiful, thank you, and I’m sharing on the SPH FB page. Your love for your little boy shines out of every single word

  18. 11th March 2017 / 9:17 pm

    This is just beautifully written, so heartfelt. Your son sounds like an amazing, caring little boy. x #KCACOLS

  19. Elizabeth
    12th March 2017 / 12:25 am

    Well, whatever else he has to face, at least your lad has a family that accepts him the way he is. Take it from this 33-year-old Aspie who didn’t: it makes a big difference.

  20. 12th March 2017 / 9:46 pm

    Fabulous post! So well written. I would not even pretend that I would understand your situation as I have never experienced it myself. But reading those words, your son is truly exceptional and you ahve all the rights to scream it! Love it! Well done ! Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday.

  21. Leila Benhamida
    13th March 2017 / 11:46 am

    Sending you big love. Straight from the heart.

  22. 13th March 2017 / 9:33 pm

    This is a beautiful post. I’m awaiting an ASD assessment for my son and stuff like your post make me feel stronger about facing the world to get him the support he needs. #kcacols

  23. 14th March 2017 / 9:09 am

    You can really hear the love you have for your son in your words. He sounds like a wonderful boy x
    #KCACOLS

  24. 18th March 2017 / 10:42 am

    What a lovely post! I find it upsetting that some people are too arrogant to understand Autism, to just label a child as naughty. Your little boy is clearly very kind and caring, the world would do well to have more people like him! #KCACOLS

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