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Living with Luke 15

June 30, 2013


Today I am in bits.  I failed Tiddles again this morning and now I’m asking myself, and not for the first time, why?  I totally lost my temper with him over a phone call that I was trying to make to my ridiculous credit card company, and because I was shouting through frustration and the ineptitude of the operator and their company, Tiddles was shouting.  He doesn’t deal well with raised voices and adds his own voice to the shouting by yelling himself.  In the end, because I couldn’t hear the operator I slammed down the phone mid-conversation/argument and literally screamed at him,


The phone call had left me shaking with anger, but instead of venting it internally as I should have done, instead I took it out on one of the most precious things I have, screaming at him like a Banshee.  I shouted more at him, taking him upstairs to his room, more for his benefit than mine, just to get him out of my line of verbal fire.  Did it help me by screaming at him?  No, instead all it did was make me feel even worse because I had really upset him, as well as The Eldest Child, who didn’t have a clue as to why I was yelling at his brother like I was.  Ten minutes later and I was apologising to them both.  Tiddles had already forgotten about it but allowed me to hug him and give him a kiss and so I hugged The Eldest Child for an age instead – I’m sure he felt a little uncomfortable at the length of time that the hug was taking.  But although he hadn’t been the target of the anger, I felt I owed him that much at least, as I couldn’t make Tiddles understand just how sorry I was that I was a disastrous father yet again. 

This week has not been the best of weeks.  The weather has played havoc with my asthma which has affected my breathing, which always makes me a little stressed and panicky.  This in turn makes me a little edgy and coupled with a few other things that have gone on this week it was a volcano waiting to erupt. Whether this was the root cause of my outburst at Tiddles, I cannot say, but I certainly hope that it was, and not a sign of anything more ominous.

I can and do sometimes get incredibly furious and frustrated.  I don’t know if it is anything to do with the lack of outlets for the frustration and anger that have built up over the years regarding both Tiddles condition and his subsequent pulling away from me as he has gotten older or that I just have a naturally short fuse, but whatever the reason, I can go berserk at the most stupid and trivial things.  Obviously I’m not proud of myself at these times.  In fact I absolutely hate myself whenever I upset any member of my family, but Tiddles and The Eldest Child especially.  I’m supposed to be a Superman, aren’t I?  Good, strong, indestructible, funny.  A Man of Steel, if you’ll excuse the pop culture reference.  Tiddles is oblivious to this most of the time, as he is to me most of the time anyway, ignoring me except when he wants something.  Not a problem.  I have gotten used to this over the years.  But maybe it is that feeling of becoming more isolated from him that is ultimately what is at the bottom of all this?  He’s my son, but sometimes I feel like I am a stranger to him.  Maybe he sees me as a bit of a monster?  More so now if this morning is anything to go by.  This isn’t the first time it’s happened, and it probably won’t be the last, but when it does, I’ll just loathe myself even more for failing him once again.

I’m trying Tiddles, I really am.  Every day is a new start, isn’t that what they say?  What has happened before is in the past?  I’m doing my best to be somebody that you want in your life.  But after this morning, is it any wonder that he would rather be in Narnia than over here with me? 

So…How do I rate as a father today?

Awful…bloody awful…


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  1. Donna from mark hall gym permalink

    Hi Steve, I always read your stuff and admire you so much. You are a great Dad. Tiddles loves you, move on, take a deep breath and stop beating yourself up. Life is too short. Love him when you’re angry, love him when you are sad. He will love you whatever. You are doing an incredible job with Luke. He is your special that has been given to you x

    • Thanks Donna. I know as parents we all do this, it just always seems worse when it’s directed at Luke. Thanks for the comments.

  2. Sue Drake permalink

    Welcome to Holland

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this….

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

    The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

    But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

    Written by Emily Perl Kingsley

    • Thanks Sue. I wrote something along these lines about Christmas presents which was based around this piece. It is a lovely article and very apt. Thanks for sharing it.

  3. Sue Drake permalink

    I don’t have a child with Autism myself Steve but I have worked with them for several years so I understand somewhat about the things you write. I guess the difference is that I get to go home at the end of the day to ‘normality’ what ever that may be!! But for parents with Autistic children your day never ends….. Don’t be too hard on yourself, you’re doing the best you can at any given time x

  4. Lisa Tucker permalink

    Your a great Dad, do not beat yourself up. Keep writing, I love reading your blogs every week.

  5. Don’t be so hard on yourself… What I see is a very compassionate father.

    • Thanks. It was a tough moment. Things improved later. Still didn’t excuse my losing it as I did though. But thank you for commenting. It is always appreciated.

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