My superpower, and why I wish I could give it to my son

Later this week I'm getting laser surgery done on my eyes. And I'm not afraid. Once the idea of it terrified me, but these days it seems that nothing is as difficult or worrying as being an autism mum. I'm even looking forward to the six hours sleep afterwards, with someone else minding my children.

I've realised that nothing will ever scare me again as much as my daily failure to make life better for my son.

I don't think I'm a bad mum, because my girls have turned out pretty well: and there were challenges along the way with both of them. But I feel like the worst parent in the world, because I seem to be completely unable to help him to become a well-adjusted, happy, fulfilled and independent adult.

Apart from RDI, all of the advice, strategies and interventions have failed or made things worse here. And we can't progress any further with RDI as I would need to video our sessions and my son objects to that idea, understandable as he is a teenager!

But I have to keep trying, spurred on by the words of one member of his team...

"Do you really want him to be sitting in a darkened room playing video games and eating pizza in 20 years time?"


For me the answer will always be "no", and that image haunts my waking hours and sometimes my dreams too. So I keep looking and looking for answers. So many people will tell you that they have a solution, but none of them have worked so far, and in recent months things have gone into reverse. I would love some help from the adult autistic community, but they seem more concerned with parent blaming than parent helping.

Where to now? I do not know. All I know is that I have to be brave and keep going. That is the superpower that autism has given to me. Yet I would hand every ounce of bravery over to my son. It might make all the difference. If only I could.



18 comments:

  1. You do an amazing job with your son, You push nd help every step of the way. Having an aspie husband who would happily sit playing computers etc, I understand a little bit about your concerns, but my dh holds down a full time job that interests him, he has a wife and two children that are his life, in his teens apparently he was very much a homebird and did very little, but things have changed. SO be yourself and stand behind him as you do and he will reach his potential because you are there x

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    1. That is exactly the kind of reassurance that I needed Carol, thank you so much x

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  2. Oooh good luck with the laser surgery, I had it done 6 years ago and have never looked back :D seriously, it was a great decision for me, hope it is for you too. You are an amazing mum, and you are doing your best for your son, in a world where the system definitely conspires against you rather than helps you. I know you won't sit back and let your fears come true, but also don't burn yourself out looking for the answer. Sometimes change happens when you least expect it x

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    1. A little bit of help from fate would be a wonderful thing :) x

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  3. Hi there,

    I don't really have any advice because I've never been a parent, but I've been in a similar situation to your son's and I think you're doing better than mine did -- when I was his age I was in a boarding school, and my parents were refusing to pull me out despite knowing I was being badly bullied and also abused by staff as well. He's not going to look like a well-adjusted adult because no boy his age looks like one -- it's probably the most difficult time of his life and at least nobody is making it more difficult than it needs to be. He'll probably settle down in a couple of years when puberty has played itself out.

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    1. Matthew, thanks once again for your support: I can tell that home is where he wants to be, but I do wish that there were more suitable schools for him in the local area, well the country actually!

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  4. I'm 25 and autistic, perhaps I can lend a perspective. The truth is, there's nothing wrong with autistic individuals, society just acts as if there is. If society had even a modicum of tolerance and understanding for the autistic experience we could just live life happily. Society is all aware and accepting of autism on the outside with buttons and banners, but in reality we live in a hostile world. Your son will put you through a lot, you will be stressed and emotionally exhausted. I know I gave my mom hell. The thing is, you need to keep showing how valuable he is. I remember having to tell myself something nice each morning because no one else would that day. Being autistic means constantly defending yourself against an unforgiving world, help him with that burden.

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    1. Thank you for the reminder, and I really appreciate the comment. I do say positive things to him, but I have to get them exactly right for them to him to accept them and I don't always manage that.

      I can see examples now of how my son perceives the world to be hostile, but despite all those memes, I can't change the world for him. All I can think of doing is helping him to find a comfortable place in the world as it is.

      But to me that does mean compromises and understanding from everyone, and those things can be hard for teenagers!

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  5. How frustrating and worrying for you. I believe once you keep looking you will find solutions, but the waiting must be awful.
    One day at a time I suppose
    As for your day off.... best of luck I've two friends and a brother who had it years ago and never looked back.

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    1. I try to take it one day at a time, but as each day goes past I worry that I have not achieved enough x

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  6. all the best for the laser eye surgery. I have thought about it on many an occasion but have finally found glasses that I feel comfortable in so don't feel i need it so much now. As for superpowers - you really are a supermum. I'm amazed and the things I've done and people I've had to stand up to in order to help J out especially with his education - things I would never have dreamed of doing before I had him. I think autism gives us the power to be able to be fighting parents when we have to be - defending our kids and standing up for what's right. Sometimes though it would really be nice not to have to fight. x

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    1. It would be great not to have to fight and be brave on behalf of our kids wouldn't it? Thanks so much for reading and commenting x

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  7. Good luck with your eye surgery. I had it done a few years ago and it was a revelation, just make sure you go to bed as soon as possible or it will be very painful. You are a super mom, every day you are fighting for your child xx

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    1. Yes things did get a painful afterwards alright! Thanks for your kind words xx

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  8. Good luck with the operation. As for parenting your son it is obvious you care and are doing the very best for him. Unfortunately puberty is often a wretched time for many young people but for those with additional difficulties it's even harder. My only advice is not to try too hard because your son may perceive that as pressure and feel you're wanting him to be something he isn't. This happened to me recently which came as a shock as I didn't feel I was being too helpful. It made me reevaluate things and to step back a bit more and let him be who he is - an autistic young man who in his words can't do the things his peers can do. I guess it's about accepting their disability which can be hard when we live in an environment that isn't autistic friendly in my opinion. As for the comment about not being holed up in his bedroom whilst I'm sure it was said with best intentions I actually find it a pressurising thing to say to an asd parent. The thing is a lot of teenagers whether they have asd or not love interacting with their peers in their rooms. For my son that's how he interacts socially. Of course I appreciate that we don't want them to become so obsessed with that that they don't want to do anything else and I guess it's a case of trying to get a balance which I know is easier said than done. We've had terrible problems with my sons computer addictions in the past but fortunately going to college is helping him get better balance in his life. He enjoys college more than I ever thought possible and I think this is down to him gaining more control of what he wants to study rather than being told what to learn at school. It's also due to going to a local college, studying his special interests (computers!) and having a part time study schedule which means plenty of down time in his bedroom which he likes. And of course he's that bit older (17) and is less traumatised than he used to be. I guess what I'm saying is that things can improve but It can take a long time (it's taken 6 years for my son to go from being severely agoraphobic to college student). So don't be too hard on yourself, you're a fab mum with a fab son who's probably finding growing up hard. Deb or Mumforautism

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    1. It's really good to hear from you Deb, and get an idea of how things are going for you and your children.

      I totally agree that the environment is not autistic-friendly, but I also know that society is getting harsher on those whom it perceives are not contributing as they should, and that is spurring me on to help my son as much as I can. So glad that College is working out for your son and I too am looking at a College-type environment down the road, but for now we're stuck with very few educational options x

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  9. To be honest I do think you can carry on with RDI without the videoing. Not sure how to put this correctly..... for me, RDI is about parenting and learning how to parent Nick in the most effective manner. Certainly the videoing is extremely helpful as I can reflect on what went on and how I can improve next time. Not sure if you know this but you can join the RDI community platform for a lesser cost and take advantage of webinars, old footage etc to get some outstanding advice and ideas.

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    1. Thanks so much! I haven't given up on RDI, I use everything that I've learned and regularly borrow ideas from your videos. I am still in the community, but I haven't really got the time to explore it, there's just so much stuff there!

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