Safe space blogging: Every day is like Sunday – life with Asperger’s syndrome

It’s been a while since I’ve shared a safe space blogging post with you all. This week’s guest blogger is sharing her experience of life with a teenager with Asperger’s syndrome. Greta Thunberg has recently shone a light on the positives of living with Asperger’s. But unfortunately the reality is very different for many families, as this post shows.
It’s good to see so many autistic people doing well in life and making an impact, such as Greta Thunberg, but that gives the misleading impression that autism is a gift that gives you superpowers, when it often isn’t, even when you’re diagnosed with Asperger’s syndrome. This used to be known as ‘mild’ autism, when that can be very far from the truth.

My teenage daughter is not in school or college or work, has lost her friends and is able to do very little as a result of severe anxiety. But she has not given up on life, even though she is not living the life she wants. She still keeps trying…

Sunday began at 2am when she woke me up to unblock the toilet, a regular problem in this house. Luckily we both managed to go back to sleep afterwards.

She loves wet weather, so when I noticed heavy rain outside during the morning, I went in to wake her and offered to bring her out.

First I spent some time trying to persuade her to try on clothes I’d bought for her online, after our first shopping trip in years resulted in nothing being bought.

Afterwards she had a shower in case the clothes had been infected during the manufacturing process.

As a concession, she washed her hair. For some reason she now finds this difficult, and the ritualistic process is very hard to hear, but I know it means she is trying.

Eventually we left the house. I drove around for a few hours in almost complete silence, no radio and very little conversation. The pitter patter of the rain on the windscreen really did help her though, because she was able to chat to someone briefly when we stopped at one of her preferred cafes for a late lunch. We returned home, and she began to make herself a cup of coffee (also good). But then she dropped the lid of the coffee jar on the floor, and it was a while before she could bring herself to pick it up, and then she insisted on supervising me washing it very carefully before putting it back.

After that she retreated to her room for the rest of day, even eating dinner in there.

You see she says she is tired all the time, and I believe her. Her anxiety means she lives in fear every day, and even a small stress such as leaving the house can cause her to shake with terror. It must be absolutely exhausting.

She emerged occasionally looking for support with all her various worries, our last little chat was at 11.45pm. Then I could get some sleep.

That was Sunday over. Every day has been like this for the past few years, so Monday will probably be no different.

Coffee, Woman, Safe space blogging, Aspergers
I offer my blog as a safe space to parents of tweens, teenagers and young adults to anonymously share their realities of parenting, when they don’t feel able to share it on their own blogs. If you would like to share a post, please email me at mumofthreeworld@gmail.com
Safe space blogging, Anonymous blogging, Blogging for parents of teenagers

Author: Sarah Mummy

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16 Comments

  1. I get this. When you’re looking after someone long term and all the individual problems sound minor, but they are endless, relentless, and all day long. It’s so draining. Really good post.

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    • It certainly sounds draining just reading about it! I can’t imagine how it must feel to be going through that every day, it must really take its toll on everyone.

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  2. As a Mum of an autistic adult I can fully understand this type of day. There are times when he doesn’t leave the house for weeks. Thankfully things do get easier as they older but going out and actually socialising are always the most difficult.
    Thanks for giving these bloggers a safe place to voice things Sarah. x

    Post a Reply
    • That must be reassuring to hear things do eventually get easier. I can’t imagine what it must be like not to leave the house for weeks.
      I’m glad to be able to help people to share their stories. I know how important it is to have an outlet to write. x

      Post a Reply
  3. would help you family too take part in research

    my blog,http;//mark-kent.webs.com

    twitter,supersnopper

    Linkedin,AutismDad

    i have aspergers and m.e.

    Post a Reply
    • Thanks very much for sharing.

      Post a Reply
  4. I can’t imagine how difficult this must be. Thank you for sharing your experience and I’m glad you have this space to talk. Hugs. X

    Post a Reply
    • It must be incredibly hard, mustn’t? I’m so glad she shared her story to open our eyes. x

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  5. Gosh this must be incredibly difficult, particularly seeing your child unhappy and being unable to do much to help. I can imagine that living this way day in day out is really tough. Thanks for sharing this, it’s very insightful.
    Nat.x

    Post a Reply
    • Insightful is a very good word for it! It must be incredibly tough to see your child suffer like this every and to constantly need to be there for them, at an age when most young people are fairly self sufficient. x

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  6. Oh gosh that must be so hard for you both, I know that my son’s anxiety has been crippling for him at times and we have been lucky that recently he seems to be controlling it, rather than it controlling him. But it is always there and always will be, you have to take each day as it comes.

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    • It sounds incredibly tough, doesn’t it? I’m glad to hear your son is learning to control his anxiety more, but it sounds so hard for him.

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  7. I cannot begin to imagine how hard this all is, it is such a hard breaking post written by such an incredibly strong mum. I hope things get easier in time. Sim x

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    • It sounds incredibly hard, doesn’t it? It’s great that she was able to share her story to help with people’s understanding. x

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  8. When something is so relentless like this it’s impossibly hard to keep going day in day out. I take my hat off to the mum here who selflessly caring for her child. It’s important to share the realities of living with Aspergers. As you say, many people have an assumption of what it’s like. Everyone is different too of course. xx

    Post a Reply
    • Thanks very much. I am in awe of this mum, but I know she would say that we all do what we have to do for our kids, even if it affects our own health. There is a definite assumption that Asperger’s is ‘mild’ autism and therefore easier to cope with, but this just shows that isn’t always the case. I’m very grateful to her for sharing her story to help us all become better informed. x

      Post a Reply

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