Monday, January 25, 2010

Preparing for the Eligibility Meeting

Well, tomorrow is the BIG day... Harlie's eligibility meeting (and hopefully IEP meeting immediately thereafter).

I spent some time today going over her test results and writing some goals for her. Here are some goals to give you an idea of what I'm talking about:

want her to be able to communicate to us that she's feeling cold, hot, hurt, sick, etc.
want her to answer simple yes/no questions
want her to look at who is talking/signing to her
want her to follow instructions and simple commands without a struggle
want her to be able to walk from car to building unassisted
want her to be able to go up and down a curb unassisted

There are more, but that gives you an idea.

As far as her developmental testing results go... She was evaluated in the following areas (her score is next to each one)

Cognitive - 60
Personal/Social - 81
Adaptive - 73
Gross Motor - 75

A score of 70 or below indicates a delay. The average range is between 85-115. So, clearly, she is delayed. But as I said before, I am okay with these results. I know that they will improve with intervention. And this test does not measure her intelligence. I think we (her parents) and all the professionals that work with her, believe that she is very smart and she is ready to learn.

I'm hoping that they will find her eligible for educational services through the county and that there is a place for her that fits her needs.

In pondering her educational needs, it is so easy to feel so overwhelmed. I feel the weight of the world on my shoulders knowing that she needs so much to achieve "success" academically and socially in school. There is a heck of a negative chain reaction that is caused by a hearing impairment at such a young age. Completely "typical" kids have plenty of issues with fitting in and learning, etc. at school. While many might think that fact will comfort a mom like me - it actually does just the opposite. It makes me afraid that Harlie doesn't stand a chance with all of her challenges!

So, I feel like my work is cut out for me. I've got to help Harlie overcome a lot. And putting her in the right educational environment now is key!!! And I'm not an educationalist. But, I believe that we have a good team and I think they recognize her potential. So, hopefully they have a plan for her and a place that works for her.

It is getting late, but before I go I thought I would give a quick update on some things...

She is doing great wearing her hearing aid! She has worn it virtually non-stop (during her waking hours) for the past three days in a row! We are thrilled! I was, of course, hoping for a MAJOR attitude adjustment overnight. No chance. But - I am completely happy with a few small victories...

Like just yesterday I was talking to Cooper and turned my body away from Harlie and said to him, "Are you ready for night-night"? And when I turned around, Harlie was signing "night-night" to him! She heard me! How fabulous is that?!

Also, so far the hives have been in check and the new medication seems to be working. One day last week I forgot to give her Zyrtec. That medication is given once a day and we give it to her in the morning. By that night a couple of spots of hives started to appear. So, I guess I will wait another week or so, hold the medication again, and see what happens. At least for now, the medication is keeping them away, so that's a good thing.

Despite her continuous feeding schedule (two hours on the feeding pump, two hours off, three times a day and then a 10-hour feeding during the night) she is now officially vomiting again. Luckily - so far - she seems to be able to get it out of her mouth okay. It was pretty scary watching her vomit the first few times. But as with anything, you get used to it. And now it's back to not being that big of a deal. Unfortunately it is happening several times per day. She is so good about it. She tries to catch it in her hand (if there's nothing within reach like a burp cloth or bowl). And if she's standing, she backs her body out of the way so it doesn't get on her clothes. And then she helps clean it up with a rag. And she doesn't cry or get upset in any way. So, it appears that she doesn't feel any discomfort vomiting with her jaw wired shut. So, that's something. And luckily, we have just two and a half weeks to go till the wires come out! Woo Hoo!

Well, that's it for now. I will let you know how the meeting goes tomorrow.



Unknown said...

Hoping the day is are exactly who Harlie needs in the KNOW her....she is your focus.

Poor thing, vomiting. Can her feeds be reduced or tweaked in some way, just for these last couple weeks?? Is she getting formula or are you making her feeds?

Susan said...

Yes, I was the same, not normally an "educationalist" but I realize that a good specialized program is key for Ainsley even at her young age. I hope she gets into the perfect program for her. And that they work hard for her to reach her IEP goals.

I'm so sorry to hear about the vomiting. Poor kid. Could you squirt a little mouth rinse in with a syringe to get the taste out? Listerine Smart Rinse isn't too strong, more minty than aniseptic. I can't wait until she gets the wires out. I'm counting down with you.

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