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Stories About Autism

10 things autism parents worry about

When you’re the parent of a child with autism it can be difficult at times to prevent your mind from overthinking. When you get a moment of quiet, or a chance to slow down, you start worrying about all the challenges the future brings.

Usually these thoughts like to pop into my head when I’m on the train home from work, or right as I’m trying to go to sleep. I can lay there for hours mulling these fears over in my mind, as once I start to think about them I find it difficult to stop

Most of them are things that I took for granted before I became a dad. They’re not things I ever expected to have to worry about. I thought being a dad I’d ‘worry’ about what school to send my sons to, what subjects they’d want to study as they got older. Would they want to go to university, what would they want to do as a career? They’re questions that many of us would love to be kept awake at night by. Instead we face a future that is scary and unknown. Here are 10 things that many parents of children with autism worry about

Will my child ever be able to speak?

Studies show that around 25% of people who are on the autism spectrum are non-verbal. Of the remaining 75%, many of those who are able to speak still have huge difficulties in communicating. I definitely took this for granted before I became a dad, and nearly 10 years later I’m still waiting for one of my son’s to say his first word. And whilst my youngest son has said the odd word, they are few and far between. Finding an effective way for them both to be able to communicate is so important.

Will my child ever have a friend?

Of course my child will have a friend, all kids have friends right? Socialising can be incredibly difficult for people with autism, especially if being around others can lead to an increase in anxiety, like it does for Jude. Add in limited communication skills, and making a friend becomes a very difficult task. With socialising being such a challenge, sometimes even just leaving the house can be a real accomplishment.

Are we following the right therapy?

A simple search of autism therapy on google produces 74million results. There’s so many theories and beliefs out there, how do you know you’re doing the right thing for your child? How long do you spend following a particular therapy before you can expect to see results? What if there’s a different therapy that will lead to more progress? What if we should have given the last therapy longer and we quit too soon? It’s so hard to know if you’ve made the right decision.

How much longer can we all survive on such little sleep?

Often people with autism can have severe sleep problems, and is as high as 80% within autistic children. This leads to lots of sleep deprived, exhausted parents and children. As we all know a lack of sleep isn’t good for our health, and can make everyday life difficult too. The irony is sometimes we worry about this and it keeps us awake when we have a chance to get some of the valuable sleep we need!

If someone else was their parent, would they be doing a better job than me?

This one torments you when you’re at your lowest ebb. When things are going wrong and your child is struggling, it’s easy to blame yourself. Maybe if someone else was their dad they would have pushed them harder. Maybe they’d be talking already if someone else was bringing them up.

When they finish school what’s going to happen to them?

Are they going to be able to work? If they are, will anyone actually take the chance and employ them? If they’re not capable then who’s going to look after them all day? Where are they going to go, what are they going to do? How am I going to be able to afford it all?

What if I got sick?

I can’t, end of. This one just isn’t an option. I can just about provide them with the level of 1:1 care that they both need now, if I was to get sick just doesn’t bear thinking about. If I was to have a long-term illness, or end up in hospital, I just don’t know how we would survive.

If the meltdowns continue, how am I going to cope when he gets older, bigger, and stronger.

Those moments he turns on me and I’m strong enough to stop him, well right now he’s only 9. What happens when he’s 21 and 6 foot tall? How do I stop him from seriously hurting himself? What if he takes that anger and frustration out on me, or even worse, somebody else?

What if my child gets sick and needs to go into hospital?

We’ve just about managed to stay in hospital for a few hours when he’s had a tooth out, but what if he had an accident? What if he fell and broke his leg? He wouldn’t understand having to stay on a hospital bed and not move. If he had a cast on his leg for months, being so sensory, how would he react?

What will happen when I die?

And finally, this is the big one, that scares every autism parent I know. Who will look after them when we’re gone? We feel like we need to outlive our children as the options available for future care are so limited. If they are unable to live on their own and support themselves when they become an adult, then who is going to carry out that role when we die?

With fears like this running around in our minds it’s all too easy for them to spiral out of control. The future is so uncertain for our loved ones, when once it seemed so clear.

The truth is, worrying about it just doesn’t help. All it does is make today more stressful. We can plan for the future by all means, and work hard on the small things that will make it brighter for our kids. But we need to try and focus on the here and now. Enjoy the good times that we have with our children, and figure out how to make the challenging times better.

Our own minds can be our own worst enemy. Sometimes we have to learn to shut them off and believe that we’re doing a good job, that we’re doing the best that we can. After all, that’s all we can ever do.

10 comments

  1. Steph Curtis - January 28, 2018 8:14 pm

    I think what’s bothering me most lately is ‘am I shouting loud enough’. But yes, pretty much all of the above apply or have applied in the past too. Like you though, I’m all for living in the moment and just doing what can be done now.

    Reply
  2. Charlie Beswick - January 28, 2018 9:24 pm

    Coping with the meltdowns as Harry gets bigger and stronger is definitely a big one for me but yes, dying is my biggest fear. Leaving my boy behind without me seems cruel to us both.

    Reply
  3. Emma Yeoman - January 29, 2018 9:33 am

    Gosh, reality sucks….

    Reply
  4. Miriam Gwynne - January 29, 2018 9:44 am

    Absolutely spot on with every one of them…especially will he ever talk? At 9 with no words at all it is so hard to imagine it will ever happen.
    Great post.

    Reply
  5. Rebecca - January 29, 2018 9:48 am

    I have all of those thoughts running through my head. Especially what happens when J is older and stronger, and I can’t restrain him anymore. He hurts me enough now and he’s only 3!!! Hoping he’s outbursts calm down. But all I can say is we are all doing the best we can x

    Reply
  6. Reneé @ Mummytries - January 29, 2018 6:31 pm

    There are so many things to worry about aren’t there. I try not to do too much thinking about the future tbh, there are so many fires to constantly put out! Wishing you a good week ♥️

    Reply
  7. Jo cooksey - January 29, 2018 9:42 pm

    These are all so true. So scary, I read somewhere that if a child isn’t speaking by 5, then 7 the chances are it gets lower, but I know a boy who started speaking at 11 with the correct support and parents that love them i believe they can achieve anything. Do you really need talk to do certain jobs?

    Reply
  8. Malin - Sensational Learning with Penguin - February 10, 2018 1:05 am

    Yep, worry about all these… Well written post, thank you. Your very much right about having to turn the thoughts off and get on with it, focusing mainly on the positives. Worrying kills my energy, so I try hard not to. #SpectrumSunday

    Reply
  9. Ann from Rainbows are too beautiful - February 10, 2018 2:52 pm

    Oh yes so many of these – the last three in particular. But all we can do is mitigate and continue. Thanks so much for sharing it with #spectrumsunday

    Reply
  10. Amanda - February 19, 2018 10:46 am

    As older sister of a thirty something brother who has Autism, amongst other complex needs. I can really relate to all that you have posted. I’m really happy to say his melt-downs and frustrated lashing out has virtually ceased. He doesn’t speak but communicates his wants & needs in a way we get the majority of the time.
    He’s moved nearer to the family home in the last year and lives with other residents who can verbalise- he’s well-loved by them & his carers.
    I suppose the worries don’t stop entirely but we always worry about those who we love deeply.
    Also I really value the way he has taught me to relate to the world and those of us who find socialising a real hardship, who express their love in ways that don’t always fit within the ‘norms’ (whatever they are).
    You all sound like parents with a lot to give and lots of love – I really admire that…

    Reply

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