Pity Party: My emotions after my son was diagnosed

Nikki and Sawyer

3rd in the new series on the Art of Autism titled ‘Happy Sawyer’

By Nikki Mann

It’s like this: The build up to diagnosis feels a bit like climbing a really steep hill, without knowing what you will find at the top. The whole way up, you know which direction you’re aiming for, but you have no idea what is waiting for you, or how you’ll feel when you finally reach the top. You climb for so long that climbing starts to feel like walking and the higher you get, the less you remember about what life was like when you were still on the ground. If you’re lucky, when you reach the top you will find what you had been hoping for. You’ll be exhausted from the climb, but you will feel like it had all been worth it, and you’ll start to plan what life will be like when you find your way back to the ground again.

It’s also like this: Life immediately after diagnosis feels like you have reached the top of the hill and found what you were looking for, but before you have a chance to process what happened, someone pushes you off the edge of the cliff. Without warning, suddenly you find yourself floating completely alone, in an expanse of water so huge that you can’t begin to imagine which way you should swim first.

It took me a couple of weeks to find my purpose again after Sawyer was diagnosed. Numb is probably the best way to describe how I was feeling, closely followed by confused, guilty and alone. Now by alone, I don’t mean that I wasn’t lucky enough to have a great support system in my family and friends (I was), only that I didn’t have anyone who could understand exactly what I was going through. I was lucky enough to have plenty of people around me who would listen to me talk about Sawyer, who would hug and reassure me, and whom I knew would love him unconditionally. But I didn’t know anyone who had been told their young child was autistic, or could advise me on what to do next. And so I did what I had felt like doing for a long time, but hadn’t been able to do – I threw myself a pity party. And I sulked.

The funny thing about time spent sulking is that it does tend to be rather reflective. I had spent a very long time disallowing myself to process any feelings, or slow down long enough to think about the gravity of what was going on. I suppose it’s fair to say that I didn’t feel like I could think about the future until we had a diagnosis, which would also account for my absolute obsession with making sure we got one sooner rather than later. I admit that it sounds a bit strange now even to me, since Sawyer didn’t magically change when we finally got the piece of paper that said ‘ASD’, yet diagnosis had felt like a massive brick wall in the distance, with the future of my family hidden behind. Once the wall came down, I started to see glimpses of what life would have in store for us, and for the first time I realised – I was scared.

A multitude of emotions and thoughts washed over me during the time I spent in Sulk City. I suppose the feeling that acted as the engine for all the others was an overwhelming sense of fatigue. Imagine it like this: you have to stay up all night at work for the most important project of the year. You attack it enthusiastically, fuelled by coffee and the adrenaline buzz of the 9am deadline that you have to meet. 8.55am and you don’t even feel tired, in fact you feel amazing! You meet the deadline and make your way home from the office. Coffee wears off. Adrenaline fades, and suddenly you’re alone on the train trying desperately not to fall asleep before you reach your stop. Who knows where you could end up?

With hindsight I had taken on a lot over the years. I was a mum of 2 small children, and my youngest had taken a liking to waking up at 4.50am. Every. Single. Morning. My eldest demanded more energy than most children his age and in order to feel less guilty about being a working mum, I had taken on the role of Chairperson at his preschool playgroup. On top of that I had planned our wedding almost entirely by myself, the whole time pretending like everything was a breeze. When I look back now I think a lot of the decisions I made in the run up to Sawyer’s diagnosis were driven by guilt. I had taken on more responsibilities both in work and out, and although I wanted to do all of them, it’s an overpowering feeling to believe that you aren’t doing a particularly good job of any of them. I was too focused on Sawyer’s diagnosis to commit my full self to work; I had too much work to allow time to Chair the preschool effectively; I was too busy with all those things to spend as much time with my friends and family as I would have liked. I became the person who cancelled stuff, and I hated it.

The strange thing is, at the time I didn’t actually feel like I had too many responsibilities, despite feeling a bit drained. I just thought I was rubbish. My friends would tell me (still do) that I was taking on too much and needed to give myself a break, but I refused to listen. I think that truthfully I was taking on more and more tasks because I didn’t want to slow down and feel like I wasn’t doing enough. If I had gaps in my day then surely that would mean that I was being lazy when I could be dedicating that time to getting Sawyer’s diagnosis more quickly. Guilt. After feeling guilty about my ‘failure’ to get a diagnosis for so long, finally we had one. The coffee wore off, and I just wanted to go to sleep and sulk, but not necessarily in that order.

This next bit is difficult for me to write, but I feel like it must be said. I can’t imagine I’m the first person to ever feel like it, but I’ve never heard anybody admit to it, so deep breaths, once it’s said it’s said: In the weeks following Sawyer’s diagnosis, I felt like I was mourning the loss of a son I would never know. Done, said. Now please don’t misinterpret what I’m saying. If someone had offered to take Sawyer away and replace him with a non-autistic version I would have grabbed hold of him and ran away so fast you wouldn’t have seen us for dust. I wanted my son. The only son I had, and the only son I would ever have. What I was mourning was the loss of my son’s normal childhood (let’s not forget that Sawyer was still only 3 years old at that point). I had no idea if he would ever speak properly, make friends, go to birthday parties or enjoy cake (he still hardly ate anything). Thinking further in to the future I didn’t know if he would ever be able to endure a trip to the cinema, or go ice-skating. Would he grow up and find girlfriends, or be able to drive a car? I felt like my opportunity to raise a ‘normal’ son had been stolen from me, and so on top of feeling exhausted and scared for his future – I was angry.

Once I’d done as much crying, sulking and shouting as felt necessary, the pity party was over. I tidied up my mind and did my best to put guilt, sadness and anger back in to their boxes. What right did I have anyway? I had a healthy, amazing son who was happy, safe and loving. I’d had my time to grieve, cry, scream and shout but that couldn’t last forever, could it? I had a job to do. Sure, one task had been completed, but the work was just beginning.

***

Sawyer

 

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5 Comments

  • Dear Nikki Mann,

    Why do you need the diagnosis in the first place?

    Why not just feel you child, see what is hard for him, find the way for him to do the best he can do and be the happiest he can be?

    If diagnosis helps to get something for your child which you feel is right, go for it only for this reason.

    Tagging hurts. It is the average society who needs to be diagnosed as ignorant and insensitive –
    Not us, those who sometimes suffer and sometimes are lucky to be different, to be unique, to simply be what we are.

    Love,

    David Goren

    • Hi David,

      It was important to us, and helped Sawyer, for many reasons.

      The clear diagnosis meant I could start to research autism and better understand the complexities of Sawyer’s personality. That, in turn, helped me find strategies to use that make him feel more comfortable and confident.

      Diagnosis also allowed us to apply for funding that has made a huge difference to his school life, giving him access to education that he otherwise wouldn’t have had.

      The ‘label’ of autism also helps other people better understand him, and make allowances that help to keep him stress free and happy. It opens up conversations and starts to remove the stigma.

      I completely agree with you – society as a whole is what needs to change. And I hope my words about our journey with autism will help to do just that.

      Thank you for taking the time to read our story x

      • Dear Nikki,

        I am so happy to hear that it worked for you, and that you are getting the right support and benefits!
        I was talking this way only since my very personal case was different.
        I was moved from your pain upon diagnosis which touched my different kind of pain – so my response was coming from my heart.
        Sending you all my blessings, and to all the diversity of colors on the spectrum.

        Love,

        David Goren

    • David: she and her son need the diagnosis so that they can have access to the proper help, support and experience. It’s not about tagging. An autistic person will get tagged in any case as strange, unsociable, etc. There seems to be a wide movement at the moment that is telling parents to stay away from professional help for their child. The consequences will be disastrous for both the children and parents. Diagnosis is absolutely important to help the child grow up with the self-confidence that he/she is not doing it wrong, same for their parents.

      • Dear Mathead,

        I understand. I also understood from Nikki that it did help her much, and I am so happy for that. I was moved by her suffering, which touched mine.
        I am not supporting any movement of any kind. What you say does make much sense.
        My very personal case was different, which is why I was talking this way.

        My own faith is that we on the spectrum happened to be unique – which does cause suffering, and is often bad, but sometimes it also gives us unique abilities. I highly believe in the merit of human diversity, and every disadvantage may turn to be an unexpected advantage. We happen to be different – not less. This view and faith did unbelievable miracles in my life. My personal story probably makes me be more sensitive, and I am sorry if my reaction hurt. It is probably due to my own defense mechanisms.

        Love,
        David Goren

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