The Impossible Dream

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From the day a child is born, it’s our job as parents to teach them the skills they need to survive in the world. Those first weeks of total reliance fly by and before long, they are taking their first shaky steps towards independence. This isn’t the case for all children because many are born with disabilities which make independence a more difficult, if not impossible, goal to achieve.

There are different disabilities. Some are evident and some are not. My youngest son has autism – the invisible disability.

I knew that S was very different to his brothers quite early on. He was late with his milestones, i.e still crawling when all of his peers at playgroup were walking. His challenging behaviour went way beyond the ‘terrible twos’. His ‘tantrums’ were unlike anything I’d experienced before. They were extreme and as bewildering for him as they were for me. Then there were his ‘quirks’ and obsessions..

My fear turned to relief when, at four years old, he was diagnosed with ASD and SPD (autistic spectrum disorder and sensory processing disorder). It made perfect sense and I was relieved that there was a medical explanation for his behaviour. However, an element of fear crept back in as I realised what the implications of his diagnosis could be.

Two years on, S has received the best support we could ask for. He has a statement in place at school and a support teacher who works closely with him for the majority of the school day. He’s also been approved a place at the local autistic children’s group. This is so he can spend a few hours on a weekend with other autistic children. While it’s primarily for him to spend time in an environment where he can comfortably be himself, it’s also to give OH and myself some needed time to ourselves. Parenting any child is hard work but parenting a child with special needs is exhausting and can test even the strongest of relationships. This is why we’ve taken the necessary steps to get support for us as a family, not just for S.

Autistic people are capable of amazing things. Many if the world’s greats, past and present, are considered to be on the autistic spectrum. I don’t see autism as a curse, I see it as a blessing, albeit a mixed one. The autistic person can see beauty where others cannot. They can feel music deeply and when they read a book, they become part of the story. Their obsessive nature means that when they like doing something, like art or music, they excell at it. S loves numbers and by the age of four, knew, off by heart, the entire twelve times table. This is classic autism.

In my heart, I dream that S remains as happy as he is now but in my head, I know it’s an impossible dream because the statistics speak for themselves.

Children with autism are four times (or more) likely to be bullied (at school or via the internet) because of the way they communicate and interact with their peers. Autistic children are generally more trusting, have a poor sense of danger and can be manipulated very easily. The differences between them and their peers become more apparent with age.

I’ve already witnessed incidents in parks and on the playground with children laughing at S instead of laughing with him, as he thinks they are. To him there’s no difference between playing with someone much younger than himself, or older. He has no social boundaries. He thinks it’s perfectly OK to barge in to a group of tweens (or older) and expect them to play with him. I can’t control what other children do or think,  all I can do is help my son to develop the coping skills he needs in order to function. I want him to live, not just exist or be someone that he isn’t in order to fit in. The problem is with society, not him.

The challenging behaviour is a problem but it’s his reaction to an overwhelming world. It’s important to understand that. The behaviour has a function – there is always a reason. When my child displays challenging behaviour in front of other parents, it’s understanding that I need, not judgement.

In a perfect world, S wouldn’t have to learn how to ‘fit in’. He would be free to be himself and his quirks would be embraced instead of mocked. For instance, he came out of school last week and it was raining. He doesn’t like rain so he shouted at it. Parents stared. His peers stared. Wouldn’t they like to have the freedom of mind to be able to shout at the rain?

I wish the world was more empathetic to children like my son. But the truth is that people are selfish and cruel, choosing to boost their own self-esteem by demolishing someone else’s. They knowingly target the vulnerable with no regard of the long-term damage that they are inflicting on another human being. There is a lot of ignorance towards autism and I’m hoping, by spreading awareness, we can change this.

I can’t stop children being unkind to my son but I can intervene and give him strategies to cope. It’s because I was bullied by children and teachers, that I am extra vigilant. I am watching and ready to defend him. Education is the key to giving children an understanding of what it’s like to be different. How S’ autism is approached within the classroom, is something I will be addressing with the school, although I’ve had no real problems with them so far.

Like any mother, I just want my child to be happy.

My problem isn’t with my son, it’s with the people who don’t see him as I do – beautifully imperfect.

CC Image Credit Frankieleon via Flickr

mumturnedmom

 

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25 thoughts on “The Impossible Dream

  1. Your love for your son shines out of this post and I’m sure with such a supportive mum (and family) he will be able to find happiness. Shouting at the rain sounds like such a free thing to do! I do wish society was more understanding – even celebrating – of difference. There’s a long way to go but I hope, through posts like these, we are slowly gaining understanding and moving in the right direction. xx

  2. Oh this post is incredibly beautiful, so filled with love. The title is bittersweet. It’s an impossible dream for many kids, but especially those with disabilities, because the world can be so cruel to those who are different. I love your ferocity to protect your son as well as the practical help you are giving him. Your love will help buoy him most of all. It’s clear you have an abundance of it for all your children.

  3. It’s a full time job caring for a child with special needs. My friend has a daughter with SPD and she has done amazing things with her through diet and chiropractic care, as well as special intervention, but it is full on and never ending. She is an OT, so professionally she is very clued up, but at the end of the day, she is a mum and all you want is the best for your child. I agree that society has a lot to learn and kids can be cruel as it is. We all hope our children will get through those horrible years without being bullied, it’s such a terrifying thought. I know that it doesn’t have to be that way though, because some schools work really hard to help children with difficulties to fit in and in these cases the children can be really supportive to these individuals, protective even.

    • Thanks Nicola, I’m hoping that the secondary school proves to be as understanding as his primary one but thankfully that is a few years off yet and that’s for me to worry about. He just needs to be a little boy. X

  4. Your love and pride for your son are so clear in this post, as is your fierce protection. We all want to protect our kids, even from the things we know they can’t avoid, and sometimes coping strategies are all we can give them. My 8yo asked me what autism was the other day, and we had a long chat about ASD and SPD. His questions were thoughtful, as were his conclusions. It’s my job to make sure that he is mindful and kind and aware; what makes me very sad are the stories I read where parents clearly aren’t teaching their children that, and in fact aren’t those things themselves. Thank you so much for sharing this post with #ThePrompt x

    • Thanks Sara, I’m so glad to hear that you had a chat with your child about autism. If only all parents were like you, maybe autistic children wouldn’t have to endure persecution if there was knowledge and understanding.Unfortunately, some people still want to hurt others regardless of knowledge. That’s how the world is, sadly. X

  5. Tracy from the moment we found each other on twitter I have been astounded at your strength in fighting for the very best for S and when that day came when you had a positive diagnosis for S, I remember it like yesterday. It was a bitter sweet day but at least you had the help now from *the system* which is what you needed for his educational needs. You’ve overcome so much for S, you are like a tiger fighting for her cub and lets not forget your own *issues* in crowds etc? you have and are an amazing mum. Unfortunately I cannot do anything to help how cruel the people who S will have to encounter will behave to him but he will always know his safe place is with his family in his home. You have enlightened me and plenty if other people with children who do not have any *problems* although who knows how they are all going to be when they grow up. I have so much more understanding of things after you have patiently explained your daily trials and tribulations. Never do I now assume that a child is having a ^tantrum* I would like to think i think more deeply about it and if the parent/carer doesn’t look to scary, I would like to think I would now be brave enough to approach them and ask if there is anything I could do to help out just a little. What S lacks in his social control, he more than makes up in his generosity of love for his mummy. That is first class parenting. Love you billions xxxxx

    • Thank you for this comment, lovely lady, it means a lot.
      Just the fact that you think twice when you see a child having a tantrum makes my posts worthwhile. I’ve never had anybody ask of I need any help but it would make such a massive difference. S is such a loving child. I’d much rather live in his world than the reality of this one. Love you trillions xxxxxxx

  6. I love your line ‘beautifully imperfect’
    Your love for your son is clearly overwhelming and your desire to protect, nurture and provide the very best you can for him is just bursting from the page. This world is not neat and tidy, there are people who are just don’t get that we are all beautifully imperfect and that everyone’s needs are different. I only hope through posts and writings like these the awareness & understanding can grow about invisible disabilities.
    Emotional post
    #ThePrompt

    • Thanks Tracey. 🙂
      Awareness is something that us autism parents can do. I’ve started to carry little postcards in my bag which tell people what autism is. Next time my son has a melt-down and I get judged for being a bad parent and him for being a brat, I’ll leave them one. 😉 X

  7. What a beautiful, heartfelt post. you are doing a wonderful job even though it is a difficult one…we all have different challenges to cope with with our children and just have to do the best we can. I recognise so many of the traits you mention in my son, but I am so proud of the way he has grown into a lovely young man. I’m sure your boy will too.

    • Thanks Stella, you should be proud of him – he’s a wonderful young man and is a credit to you. Despite his problems, S is loved by a lot of people. He thinks nothing of hugging people he likes. He’s a very loving boy. I’m proud of him already. 🙂 X

  8. This is a beautiful and informative piece of writing that helps me as a teacher have a glimpse into what it might be like for the parent raising an autistic child. Having worked with a few autistic children I find them endearing, intelligent, fascinating and at times challenging. They truly are amazing and sitting down with one and having a conversation can be a real eye opener into their individual way of thinking. From this post I can tell how special your little boy is to you and despite the statistics the world is slowly becoming a place where people are learning more about the differences of individuals and he will indeed be special to other people too x

    • Thanks Gailann,
      In S’ teachers own words, ‘ I’ve taught children with autism but never one like S’. To be fair, she put herself on a challenging behaviour course to learn more about how his mind works and this benefited them both enormously. X

  9. This post made me realise just how lucky my M is, for the most part anyway. She goes to Cubs, and sometimes loses the plot and needs time out, or has to be restrained (sadly) by me from hurting herself if she gets overwhelmed before I can remove her. There is another child there, un-diagnosed, but who is also on the spectrum, and I haven’t failed to be impressed by the acceptance of their peers. Obviously, if someone gets on the wrong end of a punch they get upset, but it blows over quickly and they are back in a group again.

    I like to think that M and the other child are doing their bit to encourage acceptance and understanding in 20 other children, who will grow up and help others not to judge. The world is slowly changing for our beautifully imperfect offspring.

    • I’m glad that M is doing her bit to spread awareness. But the world won’t change fast enough for me. I’m impatient, innit lol I hope I’m proved wrong and secondary school proves to be the making of him. And like M, if he can change a few minds along his journey, well that can only be a good thing. X

  10. This really is a beautiful, yet heartbreaking, post Tracy. Much of what you’ve written here about S reminds me of my eldest whose five and a half. You’re right unfortunately, society can be a cruel place, but we need to equip our kids as best we can for it. I’m more than sitting on the fence about home education…

    And yes, talking to the rain without inhibitions would be a wonderful thing. Hugs lovely xxx

  11. Lovely, moving post. It’s so sad that children (and adults) can pick up on differences and use them to bully. He is a lucky boy to have a mum like you who wants the very best for him.

  12. A lovely post, your emotion shines through. I have always tried to be understanding when it comes to children with autism. I don’t know a lot about it but I do understand that all children are different. I would love to shout at the rain the sometimes! In fact the next time it snows I might do! I think you are totally right to fight for your son’s right to be himself but also prepare him for ‘fitting in’. It is a shame that so few people understand autism. Posts like this give a glimpse of what it’s like for you and your son. I hope it raises awareness. xx

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