Life in progress

Tag Archives: special needs


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What happened to Linda?

Let’s play “What happened to Linda? This morning’s edition,” shall we?

I started writing this post–read: that first sentence–before I had a nap. When it took me a full minute to decide whether the word should be “edition” or “addition,” I knew finishing the post wasn’t worth risking my career as an editor.

Even after a three-hour nap, it’s an iffy prospect. I sincerely hope I’m making sense.

Where was I? Oh, yeah.

I put my darling son Alex to bed at just after 10 last night. He fell asleep after begging me to take him to the hospital. Now, you have to realize that the hospital is one of his favourite places in the world, so I take most of his pleas with a grain of salt. Last night, though, his breathing started sounding more horrible than it has all week.

At midnight, I finally said yes. By 1am, the decision had been made by the doctor to admit him for a couple of days. He has pneumonia again.

But, of course, it couldn’t possibly be that easy. Alex’s ultimate goal was to get out of emergency and up onto the floor, where he could hang out with the nurses. For the next thirteen hours he sat in anticipation of being admitted, asking me every fifteen seconds, When are we going upstairs?

I got home at 3pm.

So that’s “What happened to Linda,” and why I was thinking I should be posting the SoCS prompt at 9:30 this morning, too far away from my laptop to do it. And, backing up, why I was thinking I should be posting my illegal-A-Z-Challenge for the letter “V” at midnight last night as I drove to my local hospital.

Where Alex is now, happily wandering the halls, chasing nurses, because his obsession with the hospital far surpasses the actual science that tells the doctors he’s too sick to stay home.

Thank you to the bloggers who volunteered their “V” suggestions for yesterday’s post that’s not going to happen. I need sleep. That’s my excuse and I’m sticking to it.


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A Rant about Memes

Facebook is littered with them – memes which state that if you care about something you must prove it by re-posting a picture with a bunch of often grammatically incorrect sentences or misspelled words. Things like, “If you want cancer to cured, re-post this in the next twenty seconds,” or “Share if you think animals have rights too.” Of course I want a cure for cancer to be found, and I certainly can’t stand to hear about animals being mistreated, but I never re-post these things – I don’t feel that I need to prove the way I feel to anyone.

But the one that really gets me are the “children with special needs need to be treated like anyone else” memes.

Like this one:

1517440_10205983584770964_93714871328423065_nNo. No, no, no, no, no. I won’t re-post this on Facebook. (Yes, I know it’s going to show up in my feed when I publish this blog post, but at least it’ll have an explanation with it.)

Do I want people to be aware that kids with special needs need to be treated just like everyone else? Yes. Do I want to be guilted into posting this because it shows I have “a strong heart”? No. Do I sound ungrateful right now? Maybe.

I don’t feel that I need a strong heart in order to love my two kids with special needs, and I don’t think anyone else requires a particularly strong heart to care about them. They just need to be observant and kind. Treating any human being with kindness is a simple matter of compassion and at least an attempt to understand. No one has to prove themselves as far as I’m concerned, unless actually confronted with a situation in which they can provide a smile or at least refrain from saying or doing something nasty.

I mean seriously, how far does one of these Facebook memes go? If someone is confronted with an uncomfortable situation in a public place where an Autistic adult walks up to them and begins to talk about his or her imaginary friend, does the poster of the meme remember they posted it and take it to heart? No. The last thing on someone’s mind in this situation is Facebook.

Rather than posting a meme, learn something. Take the time to think about what you’d do. Read articles written by the parents of a special needs child and take their advice. Being guilted into posting on Facebook is useless unless you know what it means.

Ungrateful rant finished.


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One-Liner Wednesday – Grissom

We have a winner! On Sunday, at the end of my Nano Poblano – Day 9: 10 Random Whos post, I stated that the funniest answer would be featured today for One-Liner Wednesday. Here is the lovely and talented SuzJones’ answer:

5. Who are you? Who? Who? Who? Who? Why Grissom of course!

If you don’t know Sue, you should definitely check out her blog. 🙂

Sue’s answer brought back a lot of fond memories. I watched the original CSI religiously back when Grissom was still around. He had some of the best one-liners on TV at the time, so I went to IMDB to look up a good one. However, it seemed all the funniest ones needed the context that they were put in in the show. As I was going through them all I came across one that I remember well; it stuck with me as the mother of two special-needs kids:

Gil Grissom: [to Billy Rattison about how he called Randy Traschel, the man with Down Syndrome that he murdered, a ‘retard’] By the way, the definition of the word retard is to hinder or to hold someone back. I think your life is about to become retarded.

Thanks so much, Sue, for reminding me of the fantastic one-liners that came off CSI!

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Anyone who would like to try it out, feel free to use the “One-Liner Wednesday” title in your post, and if you do, you can ping back here to help your blog get more exposure. To execute a ping back, just copy the URL in the address bar on this post and paste it somewhere in the body of your post. Your link will show up in the comments below.

As with Stream of Consciousness Saturday, if you see a ping back from someone else in my comment section, click and have a read. It’s bound to be short and sweet.

The rules that I’ve made for myself (but don’t always follow) for “One-Liner Wednesday” are:

1. Make it one sentence.

2. Make it either funny or inspirational.

Have fun!


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At a Loss for Words

Where’s your communication book? I’ll ask your teacher to tell you.

It’s the most common phrase that is signed in my household, aside from, I love you, and Go to sleep already.

The problem is, of course, that my son Alex doesn’t ‘speak’ the same language as I do, and sometimes I’m the one at a huge disadvantage. I, whose life consists of putting words together to make meanings clear, am unable to communicate with my own offspring. What kind of sick force in the universe came up with this irony?

Tonight I had to try to explain to Alex why he wasn’t able to eat from my plate. It’s something that I allow him to do on occasion–not something I allowed my other two sons to do–since he doesn’t eat much more than one piece of anything, being that he’s tube fed. But now, since I’m not sure I’m completely over this bug, it’s a no-no. Germs are not something I often talk about, and so once again I’m faced with my lack of knowledge, and my incompetence in being fluent in American Sign Language.

Can you fathom the frustration at not being able to say the simplest of things? With a hearing child, the conversation would be over in four or five sentences. “I’m sick, and if you eat from my plate you might get sick. Why? Because there are these things called germs – tiny things like bugs crawling around in my food. You still want some? I thought not.”

Instead? It’ll have to wait until tomorrow.

Don’t get me wrong – I’m grateful that I have the resource of the Deaf school to back me up when I need it, and especially that they are teaching my son to communicate with his peers. What scares me are the stories I was told by a few different Deaf people of their hearing families – that they grew apart. The Deaf have their own community. In fact “Deaf” is capitalized when the word is used to describe a person in the same way American is – because it denotes that very community.  It’s only by virtue of the fact that Alex has a global intellectual delay that I might have to care for him well into adulthood.

In the meantime, I’ll keep trying to learn his language. Because once he’s twenty-one and has to leave school, I won’t have a communication book to write in. And I’ll be at a complete loss for words.


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JusJoJan 16 – Sometimes I Have the Strangest Conversations

Yesterday I had to take my son, Alex, to the doctor to get a note for school. It wasn’t for a high-risk field trip; it wasn’t because of some strange sort of disease the school needed to be assured he was free from – nothing like that.

I needed a note to say that he was allowed to eat. The first conversation on the phone with the doctor’s secretary went something like this:

Me: Hi. I need an appointment to get a doctor’s note.

Secretary: Okay, what is it for?

Me: Well, you see, the nurse at his school won’t let him eat until he has an all-clear from the doctor.

Secretary: Soooo, when was the last time he went to school?

Me: Today.

Secretary: How long has it been since the school didn’t allow him to eat.

Me: It’s been about a week.

Secretary: ….

Me: So can I get an appointment soon? Or…

Secretary: I don’t understand.

Me: Neither do I.

All of this, of course, came about because he aspirated (inhaled and had lodged in his right lung) a piece of food on Christmas Eve. For the most part he is tube fed, but the school wants to make sure it’s safe for him to eat before they’ll let him do so.

So today I went to the doctor. That conversation went as follows:

Doctor: Sooo… what do you want me to write?

Me: Just say he can eat. OH, and drink. I don’t want to have to bother you again in case they decide that’s against the rules as well.

Doctor: And he’s been fine when he eats at home, right?

Me: As fine as he’s ever been.

Doctor: Oookay.

(She starts typing.)

Me: I guess this isn’t something you write a note for every day, eh?

Doctor: Err, no.

Today, Alex went to school with the note in his backpack. After not being allowed to eat with the other kids for a week, he’s a happy camper.

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1. It’s never too late to join in, since the “Jot it” part of JusJoJan means that anything you jot down, anywhere (it doesn’t have to be a post) counts as a “Jot.” If it makes it to WordPress that day, great! If it waits a week to get from the sticky note to your screen, no problem!
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