Wednesday, 20 February 2013

The Drums Inside My Head

Some nights I just want to curl up and shut out the world. If I could, I'd stop it spinning and climb off, just for a little while, until my head stopped pounding. Sometimes I need to shut the world out but it's usually those times when I can't. I have a responsibility to a teenager with autism and unless you've been there yourself, just take my word for it that a responsibility of this magnitude is so great, the pounding inside your head feels like drums, beat beat beat, smashing against your skull until you can take it no longer. My teenager says she's weird, uncool, stupid, an idiot. She wants to be like the cool kids, she wants to be 'normal'. She goes into hysterics as she raises her voice at me, telling me I don't understand. She cries, then she cries some more. I look at her and feel completely useless. I wonder if I'm a rubbish mum, if someone else can do better. I ask myself if I need help to raise this teenager who has discovered she isn't like other kids.

I tell her how special she is, how incredible she is, how amazing she is. She tells me her life is confusing. I tell her she has more friends than I've ever had in all my 43 years. She tells me she knows. Then the cries some more, not really knowing why she's crying. I want to hug her, hold her close to my chest like I used to when she was a babe in arms. But I know as soon as I hug her she'll cry even more. And I want her to stop crying; I want her to laugh, to smile, to look at me with those gorgeous Malteser eyes and the red rosy cheeks. Instead she looks at me with tear stained cheeks and a snotty nose. She's still my baby. But she's growing up. It's as hard for me as it is for her, in so many different ways. I'm learning every day, just like she is. I'm not autistic. Sometimes I wish I was so that I understood her better. Then she goes to bed and I cry. And then I say 'Fuck you, autism, fuck you.'

20 comments:

  1. As the mum of two teenage girls I know how hard it is to parent a teenager, but the added complication of autism must make it so much harder. You're a great mum, and Amy knows it too xx

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  2. Oh it must be so hard. Life with my lot makes me feel like that sometimes, but I have a friend who has a daughter with Aspergers and I know how difficult she is finding it as you really have no idea what is going on inside their heads. From what I've read, you are an amazing mum and you have a brilliant sense of humour which must help. For every bad day I hope that there are lots of good ones.

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  3. Hi Kathryn, Danny has Aspergers so I can relate to what you go through. Constantly. I blogged about him last night, but about his anger at having a heart condition, not the Aspergers. I also wish the World would stop spinning just to have a much needed rest. :-)

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  4. Oh Kathryn. I can relate to this. As you know Caidan, my 3 year old boy has autism. I also have a teenage daughter who doesn't have. I know how hard autism is and I know how hard the teenage years are. Add them together and yes, the drums just get louder and louder sometimes. Teenage years are confusing enough. But when you see the world from a different angle, it must be so very hard for a teenager with autism to understand anything at all. But your daughter is so very lucky, because she has YOU. A mum who will always do what is right for her girl and always be there for her. But a mum that has to understand that sometimes all she can do is hug her girl tight and tell her how much she is loved and how special she is. Sometimes, in years to come, that is what your daughter will draw on in the tougher times. Her mum's love and strength and belief in her. And you have that in abundance. Keep on keeping on and when the drums beat, look them in the eye and dance yourself silly xxx

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  5. A truly moving and magnificent post! Not having autistic children I can't begin to imagine how this feels for you, but as a parent I know how we bleed for our kids whatever their challenges and my heart goes out to you in this. xx

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  6. I've never been one of the parents who says that they wouldn't change their special needs child as it makes them who they are.

    I'd like to kick the disability into touch and let all our kids have the same angst ridden teenage life as other kids. Brain differences cause all sorts of problems and I'll bet there are plenty kids who haven't got any brain damage who are doing exactly the same thing as Amy, but just from a different slant.

    I've stopped saying words like special etc as I got a rude awakening at an adoption meeting with some special needs carers who'd found through experience that the kids didn't want to be special, they wanted to be like everyone else and us singling our kids out to be special made them feel worse. I've stopped doing that, but it was flipping hard as choosing them to adopt etc, it's natural that I wanted to tell them I thought they were special so that's why we chose them. Is that even making any sense?

    Amy's angst sounds scary and at the same time normal to be so unsure at her age, and your reaction is pretty normal too. Go with it, you can only do your best, and your best IS good enough.

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  7. Amy's a very lucky girl to have you as her mum.

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  8. Oh huni, you're an amazing mum and you're doing a brilliant job. Teenagers are hard work anyway, I was an awful teen and I'm not autistic so please try not to beat yourself up.

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  9. hang in there mom...teen years are a hard transition...even more so with autism...i have walked that road with a couple families...

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  10. I think a lot of it is to do with being a teenager but the Autism is something else to deal with too.
    I do feel empathy. 16 yr old grandson feels similar feelings (that he has difficulty expressing) and he's suddenly aware of how different he is & he won't go to college and he won't go anywhere that he might be recognised. My daughter is so upset and worried.
    Yes Blast that awful condition.
    Maggie x

    Nuts in May

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  11. It's probably a combination of autism and hormones too. Every 13-year-old starts to get feelings of inadequacy and becomes self-conscious about their figure or personality compared to their classmates, so maybe Amy is no different. I can appreciate autism makes the problem more acute. Don't worry, you are doing a grand job. All you can do is be there for her. Hopefully this stage will pass. x

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  12. Amy would feel so much worse if she didn't have you honey. xxxx

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  13. Hey Kathryn, yup I can related to this completely. All we can do is keeping telling our kids how much we love them because of their autism, not despite it. I agree with Addy too, hormones are a flippin killer, particularly in autistic teens. Chin up hun and remember, you are a great mum and Amy is lucky to have you support her through this difficult time. Feeling the way she is something all teens go through, but with the combined difficulties of autism, its harder for her to process, rationalise and see the sense in what you are telling her. She will eventually. Here for you always Kathryn. x

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  14. Oh I can so empathise with this. My 14 year old son rarely expresses how he feels but a few times recently he has said how difficult his life is. I can't recall his exact words now but they got to me at the time and it made me realise that his life is much harder than I could ever imagine. As others have said I'm sure a lot of this is the heedy mix of autism and hormones. All we can do is to be there for them. Deb

    PS and I would so love to shut out the world too - life feels just too dam hard at times.

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  15. You seem to me to deal with Amy really well. As a worker with teenagers with all sorts of needs but a lot of them on the autistic spectum may I just say that even if you had it you would not understand how she feels as they all seem to see things differently and no 2 are the same. and having reread that I am not sure it sounds very sympathEtic. I am sorry I don't mean it to sound like that and I have all the synpathy in the world for you as I can see how difficult life gets for you and I think you deal with it brilliantly. keep up the good work

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  16. Oh yes, I am with you on this one! I guess I am fortunate in that Nick is so severe that he doesn't understand that he is different. I guess....

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  17. I can relate to you about autism and the problems arising about autistic children. As a matter of fact there are so many of them now. If you are not autistic it is impossible to understand them but you must try real hard sometimes. Learn to cope up and have more patience for they need it most of the time. Be your daughter's bestfriend because autistic children seemed unable to make friends of their own they have a world of their own. Include yourself in their own dreamworld and it might help. Then learn to shout CUT after all the action. You know... Take care!

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  18. U r doing a great job honey. (also happen to think this post may be the best thing u have ever written.)xx

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  19. I Wish I had answers for you sweetie...I wish...
    hughughughugs

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  20. It's not necessarily the autism, though it definitely won't be helping the situation. People who are considered "normal" have problems such as feeling they aren't good enough and fit in nowhere. In these situations, there is nothing a parent can do, absolutely nothing, other than be there for when they need to talk or a shoulder to cry on of course. I know you're doing your best, don't feel bad. That's just life.

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