“There Is A Voice That Doesn’t Use Words, Listen.”………  Rumi

I haven’t written a blog post for months because……because for some time, due to no fault of his own John’s world has been spinning off its axis, scattering anxiety and misery at every turn. He tried, god knows how he tried to dig deep and believe that things would get better, that somehow his mum would be able to make it all right. Fix everything. Fix him. Make others listen. Make everything ok again.

However I couldn’t make it better but not for the want of trying, believe me.

Eventually, sickeningly, John broke; he thought no one was listening even when he was, in his own way, yelling at the top of his voice for help.

In truth many people were listening but sometimes cries for help fall on deaf ears, especially if those cries are misunderstood because they don’t have a voice. People with communication problems have to rely on their own methods of communicating and behaviour is the most common and when pushed to the limit its also the most damaging to the person needing to be heard.

John’s behaviour had been telling us for a very long time that he was scared, anxious and reaching the end of his tether. His dad & I did everything we could and we knew we were running out of time. John was breaking all of his favourite things in an attempt to get someone to listen. Eventually he no longer trusted me because I hadn’t been able to stop his world spinning, therefore he lashed out at me. John’s final call for help, letting us know that things were so bad for him that he would have to break his mum, his most treasured belonging of all. He knew that only then would he be heard. Absolutely devastating for him but it was his only way.

I was unhurt, just unbelievably sad that John had been pushed to the limit.

The fall out from that was that he no longer trusted himself and didn’t want to be alone with me incase it happened again. All his usual pleasures became painful, he couldn’t even go away on our usual family holiday to ‘Abersoch’ which as you know isn’t really Abersoch but Caernarfon, second only in importance to Christmas in his calendar. His weekends home were spent hiding away in his bed.  When I asked him why his words broke my heart. Two words….”Mummy sae” John speak for ‘Mummy is safe’ He was telling me that if he stayed in bed, wrapped up in his quilt, blinds down and curtains drawn then I was safe from him. That will haunt me for the rest of my life.

Immediately the people who could help him did so, and they did so very quickly. Strategies were put in place to best support him and to gently restore his confidence.  In addition his support team at Nelaons Croft were fantastic and rallied around him making sure that he felt as safe as he could under the circumstances. They were as upset as we were to see him so broken. They were also a great support to me and I can’t ever thank them enough.

The good news is that with a supreme effort from everyone, none more so than from John himself, he has gradually settled  again and is starting to enjoy his life once more.

In June he had a very special trip on his beloved ‘S’ Boat accompanied by two of his favourite friends Kelly & Dale. They had been promising to take him for a few years after hatching a tipsy plan one Firework Night, this seemed to be the most appropriate time to put that plan in motion and we knew it would give him a boost. We were right, he loved it.

I will forever be in debt to Kelly and Dale, they gave him such a wonderful 24 hours, when I picked them up at 6.30 a.m the following morning I could tell they had been awake for most of it! Two very special people indeed.

This was the beginning of his journey back to Johnelmo mode, there have been a few hiccups along the way but I am quietly confident that we almost have our boy back.

Lessons have been learnt by everyone, not always easy ones but definitely important ones.

So, if your loved ones are displaying unusual or challenging behaviour whether or not they have autism, listen carefully to what they are trying to tell you, I guarantee that it’s something important.

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12 thoughts on ““There Is A Voice That Doesn’t Use Words, Listen.”………  Rumi

  1. Oh Julie, my lovely friend, my heart goes out to you and John. I read this with a huge lump in my throat, I could tell immediately how deeply this has affected you both. I’m so used to reading your tongue in cheek, hilariously funny words, so for you to touch the heartbreak instead, speaks volumes. I’m listening for you, I’m always here too. Big hug Gx

    • Thank you Gina, I thought long and hard about writing this but as my blog had been dormant for so long an explanation was required. I have lost readers due to not writing but the ones who care have hung in in there. Life isn’t always one long funny story, sometimes the different cult parts need telling too. Xx

    • Thank you Diane, it’s a real privilege to be his mum. This was a hard post to write as I usually tell funny stories about what we get up to. However it needed telling I think. It may help people realise something is amiss if their child is behaving in a challenging way. X

  2. Life is so hard sometimes with our special young people, thank you for being so honest Julie,sure there will be many good and funny times to come again. So glad to hear that John is getting better and you are slowly healing, how hard for you to see John suffering like that. Glad he got the support he needed eventually, love and hugs, Debbie

    • Thanks Debbie
      We can’t always expect everything to go smoothly but as you know only too well the consequences when things go wrong can be far reaching.
      He seems in much better spirit and his staff at Nelsons Croft said he is bouncing around like Tigger again most of the time. That’s what I need to hear. He is almost back to his old self at home now too.
      Hope everything is ok with you too xxx

  3. so glad you shared this, I had no idea of the difficulties you and John have had, so glad you are both safe and that John is back on track and getting all the help he needs. Much love to you both. There by the grace of god go I x

    • Thank you Clare, life is rarely straightforward for any of us, but just now and again the tide seems to turn and it’s a battle to right it. Thankfully it doesn’t happen often.
      Your support us much appreciated. Xxx

  4. Oh my dear Julie, mum said you were having a difficult time with John but I had no idea that life was so hard for both of you. I have also been keeping my head below the parapet for the last few months but that doesn’t excuse not keeping in touch with friends and family. Hopefully you and your beloved son are returning to a place where life is full of fun again. Sending much love to both of you. Xxx

    • Thanks Lorraine I appreciate your thoughts. Hopefully we are getting back to a bit more of our usual madness and mayhem, I just hope I am not speaking too soon.
      Hope life is good for you too now. Xx

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