Wednesday, March 24, 2010

The No-Reason-For-A-Hiatus Hiatus is Over


Shoot, what the heck just happened? I haven't blogged in a few weeks and I can't really say why. Perhaps it was due the recovery of my emotional lobotomy. I preformed it myself.... protective mechanism and all... I think I'm slowly undoing the stitches and regaining use of my spirit again.

Gotta love a good funk.

So, what's been happening in the life of me? Too much for one post, but I will give you the highlights. Rella continues to be Rella... example.



This is her after she snuck into the Paas Easter Egg decorating kit that I just bought and decided to EAT the dye tablets. Of course, instead of calling poison control I was busy lamenting about how we just wasted a flippin' DOLLAR on that kit!

And this is her after she pulled a chair over and climbed onto the counter to steal and rip open 4 boxes of Baker's chocolates. Then she proceded to unwrap like 32 squares and lick every single one of them.

She covers her face when she's done something wrong because she thinks she turns invisible. If she can't see ME, then I can't see HER.

She's such a little sneak that kid. Still refusing the naps. It's done. She's 27 months old and the naps are O-VER. I have NO napping children anymore. Just in my face alllllll day. The lil darlings.

I have some closure with Rella too. I've been having a nagging feeling that her speech is not where it needs to be. Finally, after sitting on the referral for months I take her to a Rehabilitation Clinic for a private evaluation and low and behold she qualifies for speech due to a speech disorder called "Dysarthria" which is basically low muscle tone in the mouth/tongue/jaw resulting in articulation and feeding issues. Helllllo!! That's her! So, we'll be in speech therapy for 16 weeks and see how it goes.

I'm not sure the dysarthria explains the devious mind and Tazmanian-Devilish tendencies. Perhaps that's 4th child syndrome?

I've got CB in a onesie now for the fecal smearing. Seems to be working well, with the exception of ONE day where she managed to get into it. Of course, the one day of the 2 weeks was the day we were in the middle of a dinner party.

What else? Oh, because I have SO much time on my hands, I've decided to compulsively make hairbows/barrettes. I saw these cute girlie bows in a boutique and thought "I think I can make those" so I did. Then I made 30. Then I became addicted. What am I going to do with them? I don't know. I just know when I make them, I think of nothing else but the glue gun, the ribbon, the assembly. There is NOTHING on my mind. This is a first. Even when I would work-out and run, my mind would always been preoccupied while doing it. I have a hard time clearing my mind, and this is something that seems to do it. Plus, I have a finished product for my efforts. I can look at the barrette and say "It's complete" and know I did a good job. It's a little task in a long day of unfinished business and piles of "To Do" lists that I create. It has a beginning, middle, and end. In a time full of questions, hopes, worries, anticipation, hard work (with no pay) and sometimes helplessness, they give me a little emotional respite. They give me a tiny slice of peace. Wrapped up in a bow.

15 comments:

pajama mom said...

yay! you're back! :)

i hate it when poison control is all nice at first, and then they start asking for your address...

and i was going to suggest duct tape to keep the diapers closed - i have a friend that does that for her twin boys - but a onesie sounds good too.

Jeannie said...

You remind me of my mom's glue-gun days where she glued anything and everything to wreths that were too ugly to hang on the wall. I think they're in boxes in the crawl space at my parents' house.

Nancy C said...

I'm thinking somebody can open an Etsy site! Good to hear from you. Missed you!

Claire said...

I so get the barrette making thing.

Elizabeth said...

Oh, I've missed you so much, and this post in particular makes me realize why. You are funny and sweet and outrageous.

I, like Claire, so get the barrette making thing. My Sophie wears barrettes and I'd love to buy some. Tell me how much.

Alicia DiFabio said...

elizabeth - i will GIFT your little sophie as many barrettes as she needs, made with much love! :)

JennieB said...

Post pictures of the barrettes! One of the first pieces of advice I was given after diagnosis day was to find projects that I could complete. Gives you a sense of accomplishment and success when everything is out of control. Looks like you found just the thing!

Tanya @ TeenAutism said...

Yay! Missed you! Love Nancy C's idea about doing Etsy! And yes, pics of the barrettes, please! xoxo

Cristie Ritz King said...

I hate to be repetitive, but YAY! you're back. I've missed you! Although I so get the funk and the hair bows. Whatever it takes man...
Missed you!

Mama Deb said...

A good funk is sometimes really helpful in getting your ass in gear to enjoy life a little. And it sounds like you are....with all those hairbows and whatnot :)
Rella sounds so much like my youngest little guy. He, too, covers his eyes when he's done something he wasn't supposed to and is called out on it. I call him my lottery win. He is one bit of pure joy in my life. (with a little dose of insanity mixed in!)

Stephanie Lynn Keil said...

I hope you continue blogging for a long, long time!

I have high-functioning autism and am planning on becoming a special education teacher (I hope) and I have a special interest in profoundly disabled people; I also have a cousin with profound LFA similar to CB (I'm not sure if he smears feces or not but at 19 he is completely non-verbal, in diapers, unable to be left alone, zero academic and social skills, etc.)

I find blogs like yours so helpful because they allow me to get an intimate look into the life of a family with a child who has profound disabilities.

I also hope you continue blogging for a long, long time because the voices and opinions of parents/families of people with profound disabilities are not heard enough. When in comes to disability you are in the minority and your view is different from many (a view that many don't like to hear) but it is certainly just as valid as the others. I'm tired of parents of profoundly disabled children trying to be "silenced" when they speak the truth about profound disability.

blackknightsbrood said...

Goodness gracious! If there was any doubt of you having a live wire on your hands, that first pic is the proof! Love it! Glad you're back.

blackknightsbrood said...

ps. I'm firing up the gluegun here for a random project - going to make a Lemon Wreath?! What are you going to do with all of those barrettes? Etsy?

Osh said...

do I have permission to laugh at the dye and chocolate? please? and being invisible? because I might do the same things with my hands...yes, I am 41.

<3

5 Kids With Disabilities said...

That is so great that you found an activity that can give you total peace. You probably have to concentrate fully because of the glue gun...
Lindsey Petersen

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