Beyond the Label

When Joseph was first diagnosed with autism, I assumed this label would remove his ability to ever achieve anything in life. Life was pretty tough at that particular stage in both our lives and I couldn’t see beyond the shit. Quite literally.

I was experiencing life as many mums do in that I felt I was there to service Joseph’s basic needs; toileting and feeding. My gut instinct told me that if I wasn’t there to do it then anyone else would be able to fill the gap. I’m certain Joseph liked me but it never felt anything more greater than that.

Lack of sleep felt like a daily kick in the teeth. Each day I wondered whether I would make it through and when I did, the future frightened me. I couldn’t see beyond what we were experiencing and often thought whether this was what life would be like forever. I craved for the life that it seemed everyone around me had; toilet trained, talking children who needed their parent for more than the obvious. He was less than a year off starting school, way off being ready and worrying about it was sending me into a downward spiral and I couldn’t pick myself up.

Joseph had never been the child who had been upset when I left the room and although it made my life slightly easier, I wanted him to at least show a little emotion when I walked away. After all, I had endured twenty-eight hours worth of hard labour before his extraction had taken place. A few tears were the very least I deserved.

And over time, I grew used to our relationship of convenience. We lived side by side and I learned to accept the situation for what it was. What I didn’t realise was that milestones were slowly being hit and the child who had uttered only couple of words (usually juice and crisps) was starting to string more words together, I wasn’t scooping as many turds but sleep was still an issue. Joseph’s personality started to develop and anyone who came into contact with him, couldn’t resist his charm.

Recently, I made an absolute balls up of a collection from an after-school club and arrived twenty minutes late. I couldn’t get in touch with anyone to let them know I was stuck in traffic and by the time I arrived my mind had gone through at least thirty situations as to what might have happened to Joseph. At no point did I consider how he might have felt about me not being there, just whether he was wandering around a foggy village alone and lost.

It will come as no surprise that after my attempted sprint across the car park in my heels and almost falling into the entrance, Joseph was sat in school perfectly safe. What completely caught me off guard was the teaching assistant telling me Joseph had been upset when I wasn’t waiting outside for him. After the initial feeling of relief that he was alive (why wouldn’t he be?) my feelings switched to guilt and then satisfaction. I was no longer the woman he liked, I was his mum who he needed.

He has started to interpret emotions better, knows how to please people and will often offer up a cheeky smile when he knows he has done something a little bit mischievous. He wants my attention more and although I longed for him to shout the infamous ‘MUUUUUUM’, I laugh to myself when I am rolling my eyes to the top of my head after I have heard it for the fortieth time that day; I am human after all.

The imagination he shows when playing is enlightening, although largely on his terms and woe betide anyone who changes the rules!

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He has developed a close bond with his stepbrother and sister and constantly asks where they are if not around. When I see them laughing together, my heart skips a beat. I watch him, flicking his hair to one side and know who he is imitating.

Once he has found something that makes me laugh, he carries out the action repeatedly to see me laughing and he laughs with me, which makes me laugh even more.

There are days when he almost drives me around the bend and I spoke before about us getting on each other’s tits; I want to be in charge, he wants to be in charge and we are more alike than I realised. I still can’t have a poo in peace (known in our house as a PIP) and I sometimes wish to be left alone for more than three minutes. I’m certain I’m not the only person to think that their child drives them crazy although I may be one of the few to admit it.

I need to remind myself of those tougher times to appreciate how far he has come. His autism makes certain situations more difficult for him and he sees life through a different lens but the pleasure he draws from life is infectious. I cannot help but admire him for the way he embraces life and the achievements he has made.

He will always have that label but he will always be Joseph first and autistic second.

Follow our journey on facebook here.

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18 Comments Add yours

  1. Sarah Micklethwaite says:

    Superb read Tina, parenting is tough no matter what, we just adjust to the situation we are in which is what you are doing. If only it was text book style never mind anything extra thrown in the mix. Joseph is a lovely boy with such a great personality and probably more like you than we know and you should take credit for that massively. You are doing a great job x

    Liked by 1 person

    1. Joseph and his Amazing Spectrum Coat says:

      Thank you Sarah that means so much πŸ™‚ x although God help him if he is like me!!

      Like

  2. Great read!
    Your story of Joseph is motivating for many parents, as a director of a day program I see my parents rushing their kids to be prompt and ready for day program. All I can say is, what is normal? my parents crack up because their answer is always, “I want him/her to do things like a normal person.” Well lets just say your embrasing compassion for Joseph and to have the ability to find satisfaction in being “muum.” Is what its all about. Here in California, our services vary… very much so from one provider to another but what is most important for each individual is their circle of support. You rock!

    Liked by 1 person

    1. Joseph and his Amazing Spectrum Coat says:

      Thank you so much for taking the time to read and comment. It’s only when I have read it back again now I can see how far I have come also in my own journey and it feels fantastic to be that person who gives others hope when I so desperately needed someone to give it me 5 years ago.

      Like

  3. What a fab piece, Medders. You are without doubt one of my parenting heroes. Rock on! πŸ‘πŸ’ͺπŸ’ͺ

    Liked by 1 person

  4. Joseph and his Amazing Spectrum Coat says:

    You are simply ‘my hero’ πŸ˜€ xx

    Like

  5. Kathryn says:

    Its lovely to read and hear that Joseph is making progress on the emotional side. Afterall, it’s these little things called ‘ feelings/expressions’, that create and have a massive impact on us (particularly the happy times which we want to cherish and remember forever). I’m too making progress with Jayden’s emotions and although it’s still steady, it’s great when I know he so is proud of himself for making those steps in the right direction too πŸ™‚

    Liked by 1 person

  6. Joseph and his Amazing Spectrum Coat says:

    Thank you for taking the time to comment 😊 So wonderful isn’t it these tiny little milestones…that are actually..massive!

    Like

  7. Astrid says:

    Wow, this is such a beautiful piece. I understand your emotions.

    Liked by 1 person

  8. Joseph and his Amazing Spectrum Coat says:

    Thanks Astrid ☺️

    Like

  9. Tracy says:

    Great post lovely. I love your PIP. I’ve yet to have one in our house lol. My son knows how to manipulate the lock so in he comes and starts telling me about Pokemon ha ha. #SpectrumSunday

    Liked by 1 person

  10. Joseph and his Amazing Spectrum Coat says:

    Haha thanks! I would love a PIP although I am sure I would be more put out if the lock was being manipulated!

    Like

  11. Lynne says:

    I loved hearing more about your story… I appreciate your honesty too. I think this will encourage parents of younger newly diagnosed kids to keep on keeping on. #spectrumsunday

    Liked by 1 person

    1. Joseph and his Amazing Spectrum Coat says:

      Thanks Lynne..see you on the 18th!

      Like

  12. Kelly Kemp says:

    Love this. It can be hard to see past that label at first, and then you start to realise that there is an actual person in there and it’s like blinkers coming off! #PostsFromTheHeart

    Liked by 1 person

    1. Joseph and his Amazing Spectrum Coat says:

      Ahh thank you Kelly 😊

      Like

  13. I love this post so much, I often think how much less we would worry if only we could see into the future. I remember those days only too well, and now with hindsight often do what you do and look back to appreciate how far we have come. #PostsFromTheHeart

    Liked by 1 person

    1. Joseph and his Amazing Spectrum Coat says:

      Thank you, thank you, thank you πŸ’•

      Like

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