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A Piece of My Heart

6/5/2014

2 Comments

 
As most of you know, I am a caregiver for an autistic child and, to a lesser extent time-wise, his neurotypical sibling. As others of you know, I'm going to start a Master's program in Speech Language Pathology in the Fall (with a grant to get autism specific training). What you may not know, however, is that starting this Master's program in a different city necessitates that I leave my job as a caregiver.

And knowing I'm going to leave in less than two months (in fact, tonight I'm going to help look for someone to replace me), I find myself relishing the little moments with more intensity. Watching him squeal with glee at the sensory beauty of the water park, or asking me to chase him around the room and tickle him, or his surprise attack raspberries, or story time (scripting) in the car.

I'm going to miss this, you guys. When I leave, I'm going to leave a piece of my heart behind* - not only with him, but with his entire family and with all the other amazing children I've cared for here. And it's going to hurt. But in the meanwhile, I'm going to keep relishing what time I have left.

-Creigh

*Yes, Mom, you can say "I told you so!"

2 Comments
Fi
6/10/2014 12:38:26 pm

You and your sister are very remarkable young people! I just found your website and read through most of your entries all in one go. It is rare to find such insight. Both of you contribute so much to understanding and I'm looking forward to reading your posts regularly. My daughter Kirsten was diagnosed with classic autistic disorder aged 3 and I have had so many psychologists misdescribe her to me in the intervening years. She also likes hugs and has a large vocabulary now. Sometimes she can be one of the most empathetic individuals I know and can feel others pain acutely. She also has a very subtle left of field humour and loves to laugh and make others laugh. I always had an instinct that a strict behavioural programme was not what my daughter needed and you have been able to articulate so well where the shortcomings are in practice. I think a lot of subtlety of thought can get lost when anything like this is systemized to be used by individuals with varying personalities. In a sense, this approach is only as good as the practictioner. You have good natural empathy and a lot of knowledge and so you are able to fine tune this to a huge degree but others can't and the levels of distress caused in children by this lack can, I think, be enormous. The devil's in the detail as they say.

Reply
Creigh
6/16/2014 01:21:40 am

Fi, I am SO glad to hear that this website has helped you! Really, that was what I was hoping for when we put this together, so it fills me with joy to hear it's working.

I understand exactly what you mean about psychologists, they have continually misdescribed Caley, too. I was talking to someone the other day, and he was telling me about how autistic people prefer isolation. I told him, no, that's not necessarily the case (Caley's actually an extrovert), and he said, well, if it's not true, then why is it in all these official descriptions of autism? It is so hard to understand and explain how the official 'understanding' of autism and what actual autistic people are like are so very different, but that really is what we're dealing with. :( I think I may have to write a post about that eventually, actually...

Your daughter sounds awesome, and you sound like a great mom with great instincts. :) Thanks for reading!

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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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