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Taking things for granted

Posted on: March 6, 2012

Its hard work being the parent of a child with Autism – its hard being a parent to any child – but especially those with disabilities.

I don’t write this blog for people to feel sorry for me, I write it to raise awareness for myself, my son, my partner & millions of other people around the world who are all affected by Autism.

Last night A, by himself put his pyjama pants on – he managed to insert one leg – I was so proud of him. He’s already mastered taking off loose clothing, but has never been able to put clothes on – I know its a long way from being able to dress himself independently – but its the small steps that count.

Moments just like the one I just described are taken for granted by so many parents with neuro-typical children.

A started to wave bye-bye only 6 months ago – 3 years old and waving bye-bye for the first time. Something children usually do around 12 months old if not earlier.

I am overwhelmed with pride when he tries something new to eat or copies a word I say. Because sensory & diet issues mean A has a very limited diet, so for him to even lick a ‘strange’ food is a big deal.

When he copies words we say its a massive achievement because of his social and communication delay due to his Autism he’s non-verbal so to hear any word from him is amazing.

When he let’s me dress him in a morning and eats all of his breakfast. When we are outside and he holds my hand all the way to the park. When he can be taken to the shops and cope with his surroundings without a meltdown. When he brings home a picture he’s drawn at nursery that shows he’s focused on an activity for a few minutes ….. These are all examples of ‘small’ things – that for A take a long time to achieve but that mean so much and that are so special.

We all have expectations for our children – we expect them to crawl, walk, talk, make friends, go to school, be part of sports and play games, have fun, get good grades, get a good job, buy a home, have children.

Now A has been diagnosed with Autism these expectations I had have made me appreciate just how much the small things in life count….even the simplest of things are taken for granted – your childs first words, your child communicating with you – your child enjoying playing with friends – family holidays, I could go on forever – its an endless list.

I just want people to realise how much they take for granted and put themselves in a position of being a parent of a child with a disability – we have learnt to not take anything for granted – to appreciate the smallest of achievements and to realise that there are some things our children may never achieve – somethings that others take for granted.

Please as always comments are welcome to be left below.

L x

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6 Responses to "Taking things for granted"

I remember those exact feelings when my son was diagnosed. All those plans for the future evaporating with the doctors words. But take heart; those small advances that your child is making do become greater. My son is now ten, and I am pleased to report, is a happy little boy. That became our ambition for him you see, to have as happy a life as possible. Keep up the good work.
Jonathan

I think you are amazing and love your posts

Totally agree with jmwinspear, felt exactly the same back then. Never thought I’d come to terms with how different our lives would be, and M being autisic, but I have, and do you know what, we have our ups and downs, but its OK. The achievements, when they come, are so worth it. Makes me appreciate things so much.

For me, one of the best things was to stop trying to make life one long therapy, I became obsessed with teaching things, rather than just going with it and living life as it came. Every part of the day was about teaching him something, or looking for some sort if improvement, drove myself nuts and probably everyone around me too. Ive learnt that If M wants to spend 6 hours in his room playing the PS1 then thats OK, another day he might not. He calls it “his world”, and its a very happy place for him. Over time things he gets it, just at a different pace.

A is continuing to surprise you, I bet there are little things that 6 months ago you didn’t think he’d manage, and then bam he goes and pulls it out of thin air with no rhyme or reason. That continues in peaks and troughs, but it does continue I promise you.

Take care and keep up the fab blogs

Jo x

I do not feel sorry for you but I am in awe of you and A. You are all on an adventure that is going to be long and hard but ultimately rewarding beyond dreams. and you have chosen to share the journey with us and for that I personally thank you.

Yeah for A! You are absolutely right, you have to celebrate every single step forward, no matter how small!

One of the things I feel is taken for granted is when your 14 yr old goes outside to play/hang out an is unable to carry typical social activities cause he always starts an argument, gets picked on or just cant handle all the stimuli to process whats appropriate responses. When he is considered “high” functioning I cant keep him in the house 24-7.We discuss his responses each day but as a parent its soooo stressful. He justs wants to fit in.

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