Saturday, October 9, 2010

Day 9 - A few things.....



First - those of you that actually know me have probably figured out that I am writing my posts the day before and then scheduling them to post the following day at 6Am. The 6AM part is what would give me away because I am NOT a morning person AT ALL. The reason I point that out is because I want to tell you what I am about to do tonight, which when you read this will to last night but I am going to write in the present tense......get what I am saying.

Anyhow, Hunter and Chris have gone camping with the Boy Scouts so tonight it is just me and Ella. Lately I have been feeling a bit of a disconnect from my daughter. Behavior has been a big issue in this house lately and my patience are GONE. I love my daughter and don't think that I am saying that I don't or think for a second that my love is fading it's just that I have been dreading doing things with her. That really pains me to say, but it is simply the truth. She acts horribly for me. Everywhere I take her she is awful (and perhaps I am overly sensitive and I am used to a very well behaved child, Hunter) and I am often embarrassed. After all your childs behavior is a reflection of your parenting right? Not really when it involves children with special needs, I realize this but in my moments of losing my patience and going crazy in my head I convince myself that somewhere along the line I have failed with Ella and I don't know what to do to fix it. At home she behaves better but she is just nasty to me. Everything I want to do with she replies with "I don't wike it," or screams "no" at me while stomping her feet, if I try to be silly and dance with her or sing a song she tells me to "stop" with a totally disgusted look on her face. It all just gets a bit old and completely exhausting.

I would like to make Ella have reasoning skills. I would like to be able to bribe her. I would like to be able to have things to threaten her with, things I could take away and it would act as a great deterrence. I would like her to have even an ounce of safety awareness. But, I can't make any of those things happen. And therefore I get tired. Weepy. Angry. Inpatient. All things I hate to be. It's funny this tiny 4 year old girl with big blue eyes and long blond pigtails can bring out the very best in me and in a matter of seconds can bring out the very worst in me.

So, tonight I demand that we have fun together. We will have fun dammit!!! We will eat "I-zza" (pizza) we will watch a "ooooovie" (movie) we will play babies, eat wooden ice cream cones, maybe paint our nails, read books, play doctor and play with bubba's cars (since he's not here : ) And if she starts to be ugly to me I will simply put myself in time out!!!

Second - I had to take Ella to the dermatologist on Wednesday. She has had a rash on her face, around her mouth, since before her birthday on August 30th. Her pediatrician has treated her with both an antibiotic cream and when that didn't work an oral antibiotic. Neither of which did anything. So she referred us to the dermatologist. His verdict.... she has some sort of oral dermatitis that is seen mostly in women in their 20's and caused by stress. WHAT? Seriously? Oh and the antibiotic that clears it up will stain permanent teeth in children whose haven't come in yet. Great. So he gave us creams that are used to treat Rosacea and Acne. He said it can take a month to a year to clear. Excellent.

Third and finally I received this email today......

My name is Katie. I'm a reader of your blog. I love little Ella (and your son, too!). They're both adorable. You seem like an amazing mom. I'm writing an informative speech on Down Syndrome for my speech class and I need some sort of "audience participation" part of the speech. I am not sure what to do. Somehow I have to involve the audience in what I'm saying. The teacher has given suggestions for some different topics, and none of what she is suggesting really fits to anything that I could ask about Down Syndrome. I know that none of the people in my class actually have Down Syndrome, so its not like I could do a Risk Assessment for their symptoms. So, I thought that I would ask you since you have more "hands on" experience with Down Syndrome. Any ideas?

Um....yeah any ideas??? I gave her one but I think it's pretty lame so please help!!!


And here is a pic, just because

12 comments:

Sweet Pea's Mommy said...

It's hard to believe that Ella can be such a terror, but then again, if I were that cute I bet I would be too! Just kidding! She is adorable and I can only imagine the difficultly that comes with trying to teach her to behave properly when there are certain things that she just can't understand yet. Stay strong and I'm sure that you will be able to teach her to act as you feel is appropriate more often than not. Not always mind you...she is a spirited little girl after all!

Thanks for sharing your frustrations and now you have to share how last night actually went! I'm hoping it was great!

patsy said...

so sorry you are having a hard time with ella...she looks way too cute to be a stinker :) hang in there!

Runningmama said...

What you described with Ella's behavior is something I am already beginning to notice with Emily and she is only 16 months old, I can't imagine what it will be like when she is 4, I think your "girl's night" is a great idea! Don't beat yourself up though, from what I can tell you are parenting Ella exactly the way you should be :-)

Adam, Jaci, Grant and Grace said...

I am sorry that you are having a hard time with Ella. I am a bit scared about what I have to face with Grace because I already have a hard time with her behavior. Everyone tells me to just be consistent and she will get it? I have been consistent for over a year...it isn't working! So, I am sure that you are doing better than you think! I hope that you guys were able to have fun. Give yourself a break. They say kids misbehave the most with those they are the most comfortable with. Ella knows you will love her no matter what, and she is right! You are a great mommy!

Ssejors said...

Hey Kacey!


I was on Mat leave for a year and havent had time to blog or do much of anything for my self lately. I just got back atter this week and my mom posted a link to THIS post on my fb for me...


She did that cause there have been NUMEROUS occasions where I have called her, sobbing, weeping inconsolably about my parenting skills or lack thereof. I told her "NO ONE ELSE HAS THESE PROBLEMS! EVERYONE ELSE WHO HAS A CHILD WITH DOWN SYNDROME IS HAPPY AND ALL THEIR BLOG POSTS ARE SO CHIPPER AND PROUD!" I think this is my moms way of saying I TOLD YOU SO, which, in all honesty... she WAS right.

Thank you for this post. I think some times, as parents, we dont share the hard and frustrating times that we have with our kids. And let me tell you! HUNTER is a CONSTANT challenge. He is talking now but he just says HI, Mom and NO and DONT! He's still in diapers although he was potty training but he has decided to be difficult with that too. Now I have to tape his diapers and his clothes on just so I dont have to steam clean my carpets twice a day. If he doesn't get what he wants, he shouts, hits, and throws himself on the floor so as to hit his head. He has ZERO reasoning skills, ABSOLUTELY no sense of danger WHATSOEVER so standing on the edge of the bath tub reaching for a bottle of shampoo that he cant have WHILE soaking wet and COVERED in soap is not a big deal for him... he just wants the God damn soap. He doesnt listen to ME Hardly EVER! he will listen to Dad and everyone else, but he just looks at me like.. yah? what you gonna do about it mom?

and i totally agree with you that people will look at your childs behavior as a reflection of your parenting skills.. Cripes I look at my kids behavior as a reflecting of my ability to parent. Worse is when I think people are looking at me thinking, Why cant she control that child?

Hunter SHOUTS all the time. On the bus, in the store, everywhere we go. if i wont take him out of his stroller he throws hims self around IN his seat in the stroller and makes a scene. So I really really really know where you are coming from.

There are days where I dont even want to CHANGE his butt cause I know it will envolve holding him down, tears on both of our parts, Duct tape, and a whole bunch of violent struggling... so Madam! I want you to know.. that.. I COMPLETELY understand. I love that boy more than I could ever possibly express but some days.. I wanna knock his teeth out!

<3 ssejors

Aunt Tami said...

Sorry to hear she is being such a little bugger lately.....but this should make you happy...it is completely age appropriate!!! (you did see Shay while we were there, right?) She is a girl....they are a completely different species than the boys.....(you have seen Brendan--another model child)!!! I have always said had Shaylin come first....she would be an only child! Boys are SOOOOO much easier than girls! Dont fret it is a stage....she will be your best friend for a while....and then it will go back and forth. Totally typical girl.....i know that doesnt help but at least you know you arent alone! She is that way with you....because she feels the closest with you....that should make you feel good! Love ya's!!

Kristin said...

Max just started this head butting thing when he gets mad, or I attempt to get him dressed, or change his diaper.... I thought he broke my clavicle the other day - why do I think this is just the beginning of our struggles?

Kristin said...

As for the speech... how about teaching the class a couple of basic signs, when talking about how most kiddos with Ds are a bit delayed in their speech?

Casey Traver said...

Hi Kacey - I hope your night with Ella was terrific!!

As for audience participation in a speech, I've heard of a couple of ideas that I like, depending on the size of the group. My favorite is probably to pass around a bag of mini-marshmallows and ask everyone to take 8 or 10 and just keep them for now (don't eat them). After talking about low tone/speech delays/ effort of communication. . .have everyone put the mini marshmallows in their mouth, hold them there and try to talk. . .communicate with their neighbor. The lesson is that having a larger tongue and low tone makes just the effort more difficult, as well as articulation etc. . .

The other one (in a smallish group) is to have everyone put on 2-3 layers of latex gloves (with a large-ish one on top) and try to put a nut on a screw, count pennies one at a time or some other fine motor task.

Good luck! See you tomorrow.

Tami Leitz said...

Wow, thank you for sharing! I feel the same way so often, like Claire is a reflection of my parenting and if that is the case everyone that sees us thinks I'm a terrible mother.

tiffany said...

I so relate to this: I would like to make Ella have reasoning skills. I would like to be able to bribe her. I would like to be able to have things to threaten her with, things I could take away and it would act as a great deterrence. I would like her to have even an ounce of safety awareness.

Me too, sista, me too.

Tricia said...

I completely understand about the behavior. We are currently in an "okay phase" but it cycles and sometimes G is downright unpleasant (to say the least). I think it is totally developmental. Probably a little harder for our kids b/c they can't express things in the same way as a lot of kids their ages. But I am hoping I can just wait it out!!!

Also, does E eat anything with Carmine in it? (It's a food coloring often found in yogurt.) A friends just told me that her daughter is allergic. Since the rash is around E's mouth I wondered.

Look it up on wikipedia. :)