Where did ya hide me M&Ms? « Terrible Palsy

Where did ya hide me M&Ms?

August 16, 2007 at 9:42 pm | In Blogroll | 3 Comments

So the next disability carnival is about top tens. I so wish that I was Attila so that my submission would be hysterically funny. She does funny so well even when she is telling you something really important.

I do serious.

I only do serious.

On the about page, you will see the definition of Terrible Palsy that some clever person at Special Education Blog did quite some time ago. I like the definition. I had already decided to call this blog Terrible Palsy before I found it. And I adopted the definition as it suits how I feel about the journey thus far.

There are a few things that can send me running for the packet of M&Ms/glass of red wine/double strength bucket of coffee.

I’ve dug through the archieves to find the top ten things people have said/done/written, that I really wish they hadn’t:-

10. No you can’t sit as a family at Thomas on Stage. Yep, when I asked for wheelchair access for Moo, I was told that he and his “carer” could sit in the wheelchair seating while the rest of the family sat in the clouds. You can read the rest of the story here.

Spoiler alert – In the end, hubby and I bought tickets for the whole family to sit in the clouds. We have been assured that we will be able to park almost at the door so it won’t be a long way to carry Moo and this way, we both get to see the look of joy on Moo’s face. He doesn’t know that we are going yet. Ssshhh! Don’t ruin the surprise.

9. My son was born at half the weight (of Moo) to a cigarette smoking beer swilling mother and he is fine now. I still can’t believe that a woman said this to me about her ex-29 weeker son. I talk about the conversation and how it made me feel (like crap) here.

8. Any conversation that includes the word “handicapped”, “crip”, “retard” or “spastic”.

7. Please, please, please don’t mention the new miracle cure for CP – botox. Like this.

6. Comforting Lies. Enough said here.

5. So I know that this has nothing to do with disability issues – but please don’t ask me when I am due like I was twice in the months after having Sumo.

4. All “miracle stories” put out by the media – here is why.

3. “My [insert child's name] is more disabled than Moo“. Yep, you are right. You win.

2. “He’s too good looking to have CP“.

1. An event that I haven’t written about as I’m still trying to get over it. I had a medical practitioner say to me (about Moo in front of Moo) Gee, he is all there isn’t he?

Well.

Where else would he be?

3 Comments »

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Don’t you get sick of coming to terms with the idiot things other people say? I wish I could somehow force them to come to terms with it instead, as well as all the attendant emotions. I was just blogging about the idiocy we had to deal with when finding a school for our son, so I’m feeling all riled up. Your post made me feel even more riled up (especially that one about being expecting, since it’s nearly six years since I had my son, and I still look four months pregnant to my deep shame).

Thanks for the list.

Pen

Comment by Pen — August 17, 2007 #

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I am really sensituve to the things people say to me about Tom. NAmely weight and size. My mum says I should respond to their statements with, “And your point is?” or, “And you are telling me this because….” I haven’t tried it yet as I somehow don’t want to upset them! Go figure. But I think the hardest thing to hear once was, “If my child had a disability, I would want it to be hearing loss out of all of them.” ???????? Any disability…. it doesn’t make one easier than the other.
Jacqui, I think your posts can be funny too – AND I LOVE READING YOUR BLOG DAILY – YOU KEEP ME GROUNDED Love Jodi and Tom xxxxxxx

Comment by Jodi and Thomas Devine — August 17, 2007 #

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First of all, thanks so much for the kind mention and link. I really love visiting your blog too. You might not think you do “funny”, but you sure do tug on my heartstrings.

Second of all, I’m standing, clapping and cheering over your list! My Little Guy is 17 now, and I can’t tell you how much your experiences have mirrored our own.

Most specifically:

#8 My blog isn’t focused on disability issues or adoption advocacy—-I blog about it somewhat, but because both are such a big part of my everyday life, I try to blog about other stuff to have a break. So I get out beyond the realms of both topics.

What really REALLY chaps my butt is perfectly articulate and seemingly kind or intelligent bloggers using the term “f*cktard”, like it’s some cutting edge trendy expression. What do they think the origins of the word comes down to? If I don’t particularly find their blogs engrossing, I just never go back. If they’re people I enjoy reading, I’ll write to them privately and tell them how demeaning the term is and how much it hurts me to read it.

I’m happy to say that everyone I’ve written to has responded in a positive manner. Baby steps, you know.

#3 Yeah. It’s all about who’s suffering is worse. Sheesh. I’ve found over the years that the parents who say this are either early in a dis diagnosis and still trying to come to terms with it, or the kind of parent who has to make themselves the center of attention, usually at the expense of their child. The first I can find sympathy for and cut some slack. The second I have no time for. Doesn’t pay to feed them.

#2 I actually had a woman say to me once about my Little Guy, “At least he looks normal. He could have been born with fins or something.” Where in the world do these people come from?

xo

Comment by Attila the Mom — August 21, 2007 #

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