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Stories About Autism

I never knew there’d be so many questions

I’ve got a confession to make. I thought being a parent was going to be easy. I never knew there’d be so many questions I’d have to find answers to, questions that seem to just get harder and harder.

I spent most of my working years before becoming a dad teaching kids how to play football and tennis. I loved it. I found it easy to bond with the kids, and loved seeing them progress. I got to know lots of different families, work with kids of all ages, I couldn’t wait to be a dad.

Ok, I knew it would take a bit more hard work than what I was doing as a coach. It would be a lot more full-time for a start, and I knew there would be some sleepless nights too.

I also knew there’d be some decisions I’d have to make along the way, like what school should my children go to, and where to live. Then there’d be easier decisions like where to go on holiday. Other than that how hard could it be?

Once my kids were big enough we’d play sport on the weekends, spend days on the river. We’d go on family holidays, have friends over to our house. We’d go to museums, I’d teach them about dinosaurs, visit castles, go to the zoo.

Life never turned out to be that simple. Ever since autism came along, the choices I’d have to make suddenly became a lot more serious than whether to go to the zoo or the beach.

I wasn’t prepared for autism. I had no real understanding of what it was, and no clue of the impact it would have on our lives. I wasn’t ready for the type of parent it would make me become, the type of person it would make me become.

Those first few years were a confusing, emotional, sleep deprived, scary period.

There were so many questions that seemed like they needed answers. There were no answers. There were too many answers.

Hours spent trying to find those answers turned into days, weeks, months. Laying in bed on Google at 2am, waiting for Jude to go to sleep, hoping to find something or someone that could help. I knew I’d searched 1,000 times already, but maybe another search would reveal something I’d missed.

I couldn’t seem to get enough information, but there was too much information to take in. I was functioning on 3-4 hours of broken sleep every night, trying to find the balance to go to work, and then come home and be a good dad.

Suddenly there were important decisions to make.

What form of therapy are you going to follow with your 3-year-old to help them live a better life?

Woah. Where did that come from?

What happened to deciding whether to go to Spain or France for a holiday?

Finding and choosing the right therapy to follow that could enable your son to speak is a huge pressure.

There’s no right choice. There’s no easy choice. You research the pros and cons of each and every therapy, and you realise what works for one child doesn’t work for another. So, what if you make the wrong choice?

What if you choose a therapy and it doesn’t work?

What about all of that time you’ve wasted, that your child will never get that back.

What if the therapy makes things worse?

Pressure. You can’t afford to be wrong.You make a choice. It works a little, but not as much as you’d hoped for.

You feel guilty. It must be your fault. You’re not doing enough, you’re not doing it well enough. It all seemed so easy when the experts explained it to you. That family on the youtube video had amazing results following this therapy, so it must be you doing something wrong.

You’re tired. Of course you are. You’ve no idea when you last slept properly. Your stress levels are approaching the point of breakdown.

Work is difficult. In the grand scheme of things, it suddenly seems so unimportant, but you need to work. You can’t do as good a job as you want to do because you’re physically exhausted, and your mind is elsewhere. You listen to your colleagues moaning about how tired they are because they’ve been going out too much, discussing the trivial dramas going on in their lives. You don’t know whether to laugh or cry. You’re so tired you do neither. Everything is a blur so you just pretend to listen and try and coast through.

You stop going to see your friends. It’s not because you don’t want to, you miss going out and having fun with them, but when you’re there you can’t relax properly. You feel guilty for being away, knowing that there are meltdowns going on at home. You want to be the one there dealing with it.

To make things worse the crying and screaming meltdowns turn into violent self-harming. You can’t quite comprehend what you’re seeing. It breaks your heart to see your child go through that.

Another decision to make. What do I do when my child starts punching himself in the face?

What can prepare you for that?

You try everything you can think of. You do nothing. You do everything.

Whatever you try doesn’t seem to make a difference. You try squeezing, restraining, ignoring, changing the environment,  bouncing, distracting, even physically trying to shake him out of it (not the proudest moment of my life, but desperation can do this to you)

You drive aimlessly around the streets in the middle of the night, it’s the only thing that makes the screaming and slapping stop.

You go back to the internet, you speak to specialists. You try different diets, supplements, massage, therapies, even Epsom salt baths. Things get better for a little while, things get worse again.

More questions.

Have you given it enough time to make a difference? Have you given it too much time?

Maybe there’s something else out there that will make things better?

Why can’t you just choose the right one? Why is this so hard?

You feel like you’re failing the biggest, most important test of your life. You’re not good enough. If someone else had this job they’d be so much better than you at it. They’d make a much bigger impact on your children’s lives. Every day there seem to be more questions that need answering, more decisions to be made. It never stops.

Amongst all of this unpredictable, chaotic life are two little boys. Two boys who are supposed to be having fun just being boys. Two boys who just need their dad to be a dad.

Life’s confusing for them. They need support, guidance, patience, and they need so much help every single day. More than all of that they need love. True, accepting, unconditional love.

You finally realise you can do that, it’s something you can give them.

You can be patient, supportive, caring. You can love them unconditionally, love them for the person they are, and stop focusing on the person you thought they’d be.

Slowly, things start to get better. It’s not a smooth straight upward curve, there are lots of bumps along the way, but overall things begin to improve.

You stop putting so much pressure on yourself, stop blaming yourself when it seems like there hasn’t been any progress.

You’ve lost some friends over the years, but you make new ones. Friends who are going through similar challenges to you. Friends who understand your life right now, even though you might have never met in the flesh. You support each other. If you have to change plans at the last minute or if you don’t talk for weeks it doesn’t matter, they understand.

All of that research starts to pay off. All of that time you’ve spent with your child means you know them better than anyone else. You begin to understand some of their challenges. You might not be able to stop the challenges or take them away, but you find ways to help them cope. You find ways to try and make life easier for your child, and for the whole family.

There’s still lot’s of decisions to make. They seem to grow in importance every year, but you’re more experienced now. You know more about autism, and about your child, so you feel more comfortable making them.

What school should he go to? Special needs or mainstream?

Things aren’t going well, should he change school?

Things are getting worse again, should he even go to school?

Should we try medication to help him sleep?

Does he need medication to help control his anxiety and stop him self-harming?

What do you do when your two boys can’t be around each other?

Somehow, the years fly by. It’s now seven years since that small, six letter word, ‘autism’ entered your life. You had no idea what it meant. What it would mean for your children’s lives, what it would mean for your life.

You’ve learnt a lot in the last seven years, you understand that word a lot better now, at least in the context of your children. Some days it still feels like you know nothing.

Deep down though, when you really think about it and stop being so hard on yourself, you know you’re a better parent than you were a few years ago, a better person even.

The reason for that?

Your children.

They have taught you just as much as you have taught them; more even.

Thanks to them, you’re growing day by day. You might not always feel it, but you’re stronger than you’ve ever been. Every single day you get up, no matter what time it is, and you go again, always doing the very best you can. You want to keep growing. You hope you can grow faster, find a way to do even more.

The difficult questions seem to never stop coming. They probably never will.

That’s ok.

It might not be as easy as you expected it to be, but you’ll never stop trying to find the right answers to the questions either.

 

19 comments

  1. Jodie - October 30, 2016 9:02 pm

    This is very true! The googling, oh the googling, through the night! Knowing that if you put your phone down and close your eyes for even the smallest of seconds bam they will be awake again. I was positive she had some sort of intuition of when I’d just drifted off, it was relentless!

    • James Hunt - October 31, 2016 10:56 am

      Thanks Jodie. Yes, our kids definitely seem to have a sixth sense about when we’ve just fallen asleep 🙂

  2. The Silent Wave - October 31, 2016 12:37 am

    Wow, incredible piece of writing! 🙂 Your children are so lucky to have you as a parent. I mean that in the most genuine and heartfelt of ways. I don’t have children, but my heart goes out to you in that they don’t come with instruction manuals; It’s All You, making your own way, blazing your own trail, learning as you go <3 What a journey! And you express it so well. 🙂

    • James Hunt - October 31, 2016 10:57 am

      Thank you so much, you’re very kind!

  3. Steph Curtis - October 31, 2016 8:23 am

    Oh wow, this post made me tingle. Yes, so many questions, and constant questioning of yourself as to whether you have done or are doing the right thing. Parenting to an extreme! Am sure your two boys are doing the best they can because they have brilliant parents who have understood them x

    • James Hunt - October 31, 2016 10:58 am

      Ah, thank you so much Steph. It’s hard not to question yourself, but if you can find a way to control it, it does make life easier x

  4. Amanda - October 31, 2016 8:55 am

    Thank you for this post. It’s comforting to know that we are not alone in all this confusion. My husband and I have two sons, an almost 4-year old with ASD (Oliver) and a 1-month old (Maxwell). Ollie was diagnosed at 2 years old, and its has been a journey of highs and lows so far. Now with our second son here, we naturally have concerns about his, and our, future. So, your blog and instagram has been a source of comfort and inspiration for us. Thank you so much for sharing! Your boys are adorable, by the way!

    • James Hunt - October 31, 2016 11:03 am

      Ah, thank you so much Amanda, you’re very kind. It makes it all the more worthwhile knowing my writing helps someone else. I can imagine how you must be worrying about Maxwell. All I can say is try and put that out of your mind for now (I know easier said than done) and just enjoy him being a baby. It is a very confusing time for lots of parents, so you’re certainly not alone. If ever I can help in any way feel free to ask 🙂

  5. Annie - October 31, 2016 1:08 pm

    James and other parents out there, our children are so lucky to have us. It has been confusing, scary and not know what to do and of course always tired! But together we all made progress and are still making. We will never give up. This journey has made us so much stronger, loving and bound really well. Whatever therapy we choose when we do it with love, acceptance they improve. I believe improvement starts when we start to believe in them. We are doing biomed these are uncharted land almost but we are having amazing results…
    James, always love your post and I have no doubt that one day I will read your post about how they start to talk!

    • James Hunt - November 1, 2016 10:19 am

      Thank you Annie, I’m glad things are working so well for you and your family.
      I definitely believe in them, it’s going to be a long, challenging journey, but we will get there

  6. Moi-même - October 31, 2016 6:03 pm

    This is so spot on!
    Comforting to read an honest account of how it is!!
    We’re in the school issues phase at the moment…sigh!!

    • James Hunt - November 1, 2016 10:21 am

      Thank you. School was a challenge for us, but when you find the right one I believe you will just know. Good luck

  7. Giulia - October 31, 2016 10:36 pm

    True and beautifully written. thanks xxx makes me feel less alone xxx

    • James Hunt - November 1, 2016 10:21 am

      Thank you Giulia. It’s so important we realise this, helps us believe in ourselves as parents more x

  8. Catie - November 1, 2016 7:33 am

    Bloody great post. So
    Many hell yes moments for me here and the end is absolutley spot on! Thank you for sharing ❤️

    • James Hunt - November 1, 2016 10:22 am

      Thank you Catie, really appreciate it 🙂

  9. Lynne (Raising my Autistic son) - November 2, 2016 10:05 am

    You sum up the rollercoaster of thoughts and feelings that comes with parenting a child with autism so well. #SectrumSunday

  10. Rainbows are too beautiful - November 11, 2016 4:47 pm

    There are sooo many questions – far more than I guess there would have been had things been different for the boys. We don’t only have more, we are asked more. The number of forms I’ve filled in…. . but at least we are being asked and we are asking the questions. That’s only more likely to result in more positive outcome right? Thanks so much for linking to #spectrumsunday James.

  11. Rainbows are too beautiful - November 11, 2016 4:47 pm

    There are sooo many questions – far more than I guess there would have been had things been different for the boys. We don’t only have more, we are asked more. The number of forms I’ve filled in…. . but at least we are being asked and we are asking the questions. That’s only more likely to result in more positive outcome right? Thanks so much for linking to #spectrumsunday James.

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