Tuesday, June 29, 2010

A small victory

I'm a pretty big procrastinator. Especially when it's something I dread doing: the laundry, the bills, calling to yell at the cell phone company for getting the bill wrong...oh no, wait. I don't mind yelling at the cell phone company. Despite my tendency to procrastinate, it turns out that when it comes to fighting for my kids, I'm pretty bad-ass. Since my youngest son has Down syndrome, he will need additional therapies to help minimize his developmental delays. The state has programs that will pay for children with special needs to be evaluated and seen by all necessary therapists, but they are going to make it as. hard. as. possible. Maybe the thinking is that if it is just annoying enough, we'll give up and the state can keep their money. Yeah...no. Not this Momma. I'm not perfect here, because it did take me 8 weeks to fill out and submit the 14 page application form to get the ball rolling, but I blame nursing, sleepless nights and overwhelm (14 pages, people!!!!) I did finally receive a letter from the Regional Center that will assess Elijah. It basically states that they will need some insurance coverage information because due to budget cuts, all services will first be billed through insurance, if you have it. I had a ton of questions and tried to contact the case worker assigned to our case. That was last Wednesday. So, on Friday when I hadn't heard back, I called again. By today, Tuesday, still no word, so I emailed. And left a message. It went something like this: (Nice, bubbly, Mary Poppins-like voice) "Hi, this Jennifer Currier- Elijah Currier's Mother - and I have some questions about the letter I received. You can call me back at your earliest convenience, or (change to Cruella DeVille voice) I will just continue to call you until I reach you." Choices seem to work well for my 3 year old. I say "Would you like to walk to the car or should Mommy carry you to the car? (Either way, you're going to the car, Bud.) So, I figured maybe our case worker needed some simple choices: Call me back or I will call you and irritate you everyday, multiple times a day, until I speak to you. (Either way, you're gonna have to talk to me, Dude.) Interestingly enough, my call was returned a few hours later. So...yay! We finally have an evaluation set up for Elijah! I'm a little nervous about how it all works and what it all means, but I seem to be a quick study for cutting through the red tape. I won't be patting myself on the back too hard, because I know this is just one very small step in what will likely be a long road, but today I'm feeling just a little victorious.

My Aunt Carol, her hubby and my Cousin Rachel were in town this last week. I don't get to see them very often, and I hadn't really gotten to talk to my Aunt about Elijah's diagnois prior to this visit. As we were talking one night, she would say something and then ask, "Is that the right way to say it?" or "I didn't say that right, did I?" I realized that maybe I should share with everyone (as I did with my Aunt that night) the kinder way to discuss Down syndrome. So, here are a few of the common misconceptions:

You would say "a baby with Down syndrome" instead of "A Down syndrome baby". The idea here is that you put the child first and the syndrome after, because they are a child first. Just like you would say, "I have a friend with cancer" and not "I have a cancer friend."

It is called Down syndrome, not Down's syndrome. (I didn't really realize this myself at first.) So, even though you'll hear many people call it "Down's", it's really not. You're just stuck with spitting out the entire phrase. D.o.w.n. s.y.n.d.r.o.m.e. :) There's nothing really shorter...except Ds, which I often write and some people even say (as long as they're talking to people who already know the term.) I personally don't say Ds when I'm talking because I think our culture has already been reduced to too many acronyms. OMG. Lol! JMHO, tho. (code breaker: Oh my gosh. Laugh out loud! Just my humble opinion, though.)

A child who doesn't have Down syndrome (or any major developmental delay) would be called "typically developing" instead of "normal" ...cuz let's face it, what is "normal" anyway?

And definitely, under no circumstances should you ever refer to a child with any kind of developmental delay as "retarded". In fact, it has very much become a bad word, and has been deemed the "R" word. To fit right in alongside the "N" word. You just don't say it. Unless you're referring to yourself. in sarcastic humor. whilst laughing. But, some people are still sensitive about it, so maybe not even then. Feel it out first.

These are the ones that seem to make the most sense to me, and the ones that I've chosen to adopt because they feel right. With that said, though, I don't take offense when any of these things are said the "wrong" way. So, PLEASE, don't start second guessing some conversation we've had and think that you've highly offended me. If you had, you would know. ...Or at the very least, gotten my Cruella DeVille voice.

And since this blog is all about me and my boys, but has very few pictures of me with my boys, I've included a recent pic of me and my littest sweetie:

3 comments:

Tracy said...

Hey Jen!
I kinda dragged my feet filling out that application too...and ours was much shorter. Our SC established and maintained contact immediately. She got our PT and EI going within a week. After two months of waiting for SLP and OT, I had to pull out the Cruella card too...I did it in an email. Too bad that's what it takes to get results!

I love the picture of you and Elijah! What a sweet baby! More pictures, please!

Kelle said...

Thanks for your e-mail! Beautiful story, and those boys of yours are so gorgeous!!

skiingthroughlife said...

Hey there! so I love this post for a few reasons, I totally know how it feels for it to take forever for our boys to smile intentionally...then when they do you have this feeling of immense love and joy and wow, it was soo worth the wait. Awesome, glad to hear you are starting EI, one thing I have learned is that you have to be pushy and be an advocate, in 3 months I have had to fire 3 therapists for lack of experience to weirdness, but I always keep my little guy in line. So good for you, be pushy your little man is a lucky guy. Happy 4th!

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