A little bit about my blog...

I'm 19 years old and I have a twin sister and a young sister. My younger sister's name is Michaela, but we all call her Mickie. She is 17 and is profoundly mentally disabled. She has Angelman's Syndrome, also known as Happy Puppet Syndrome. I hope to use this blog to reach out to other parents and family members of disabled children and adults. I'd like to share stories, ideas and thoughts about my sister. She might be a little different, okay a lot different, but she's still my lovable, adorable, annoying little sister.
Angelman syndrome (AS) is a neuro-genetic disorder characterized by intellectual and developmental delay, sleep disturbance, seizures, jerky movements (especially hand-flapping), frequent laughter or smiling, and usually a happy demeanor.

Friday, December 24, 2010

Some more old pics of Mickie and her sisters.

This is another old school portrait of Mickie Rose. 
The intensity of this picture always makes me 
laugh my ass off. She looks so fascinated. Lol. 

This picture is one of my favorites.
It's a Christmas picture of me and my sisters.
My sister Lili is just standing in the background laughing,
Mickie has escaped our grasps and is running towards the 
steps, and I'm dashing to grab her. :) Mickie, being the
rascal she is, is excited has hell to be free and running
around. Good thing she's got shorts on
under that dress. 

This is a picture taken on a class field trip Mickie went on
to a petting zoo. She loves animals. She has a dog name Chief. 
He's a yellow lab, I'll post some pics of him later.

This is Mickie in her wagon. She loves to ride around the 
neighborhood in it. She still has it. That's my twin Lili 
roller skating behind her. 

Mickie opening one present early!

In our family, we have a tradition of opening one present on
Christmas Eve. This is Mickie, of course wearing my 
sweatshirt, because my dad thinks it's okay for her to wear 
all my clothes lol. 

I think she likes opening her presents more than 
she ever actually likes the presents. 

This is a just a baby doll toy for Mickie Rose. 
She likes toys that make noise...I think that that's
just ironic. Of course, she likes annoying toys. :)
That doll was naked about a second after 
she got it out of the box. 

Mickie and her Momma.



Mickie and her Momma. Mickie Likes to rip up magazines.
She stares at the pictures then rips the pages out one by one. Lol. 
Mickie just got this rocker yesterday. She loves to just sit in it 
and rock. 

Old Pictures Of Mickie And Her Sisters.

This is of me and Mickie at a swim meet for Special Olympics.
Children with Angelman Syndrome have an obsession with water.
I taught Mickie how to swim a few summers back. The past couple 
years she has competed in the Special Olympics track and swim 
competitions. She took home first in her race in track and competed
admirably in the swim competition. This photo is from 2 years ago.

This is my twin sister Lili as Madeline, my little sister 
Mickie as Blue and me as Cat in the hat for halloween about 10 
years ago. 

Mickie must have been around 3 or 4 in this photo. Me and
Lili were 5 or 6. 

This is a school photo of Mickie when she was around 7.
We have plenty of school photos of her laughing and one 
of her sitting on the floor next to the photographer's stool
because she wouldn't stay on it, so he just took a photo of her 
next to it, lol. I'm going to look for that one. 

Pictures of the new bathroom and changes to Mickie's bed room.

This is the overview of the new bathroom. The door
is wide enough for a wheel chair to fit through. 

This is the new bathtub/shower. The bars are for Mickie
to hold on to when she gets out of the tub. She's fallen a couple
times trying to get out of them before. 

This is the new shower. Notice the nozzles
are much higher than usual. There is also a 
handheld shower thingy mcbob. I don't know what 
it's actually called lol but it's sweet as hell. 

We have to touchup the walls with some paint, but this is 
Mickie's room. Notice we now have a light switch both inside
and outside, that way we can shut off her light at night without
opening her door and disturbing her. 

This is the window in Mickie's room. Mickie likes to look out
windows. But, we were worried about her strength. She likes to 
bang on the windows so we had a layer of plexiglass installed 
in front of the window. 

Remember I said Mickie likes to bang on windows?
Notice the finger prints of her door window. Mickie
is obsessed with rhythm. She taps on things and even grabs
other peoples hands and makes them clap at a constant speed
for her own pleasure. Like the bathroom door, 
it's big enough for a wheelchair to fit through and has a shade installed so
 we can check on Mickie without disturbing her. 

Thursday, December 23, 2010

Mickie Rose's Very Special Christmas...

A few years back my father finally decided to figure out just what it was the government could do for us concerning Mickie. Well, these last couple weeks we've really gotten a taste of just how good it can get. Mickie's physical therapist informed my father that Mickie enjoys being confined to her own space. All these years we thought she needed more space. Wow, where we wrong! We've had some construction done (I will be posting pictures) and the house is now a little more Mickie-proof. We had the workers install french doors in our front parlor, and moved all her furniture from the living room into that room. The doors are sound proof and the glass in reinforced so if she bangs on them she can't brake them. Also, we added a table, on which my dad screwed a bowl down to the top so that she can't pick it up and dump what snacks we put in it out. We got her a four foot wide bean bag chair and one of my mother's friends donated an old baby nursery style glider chair to us, which Mickie loves sitting and rocking in. Upstairs, we replaced her bedroom door with one with a window, the glass on it is plexiglass and between the sheets is a shade that you can move up and down to check on her. She used to chew on the hallway beams, so we had molding fixed to all the corners. The bathroom Mickie uses was completely redone. Now we have an extra deep bathtub with high up nozzle and knobs so that she can't reach them so easily, water jets, which she loves, and one of those shower attachments that you can pull down and use hand held. All of this was paid for by Mickie's goverment funding! She loves her new room. We keep one door open and put a gate in its place that she could easily move, since we just lean it. But she doesn't want to! In fact, when she wants to be alone, or gets annoyed by US! she just swings the door shut, then goes and lies on her bean bag or rocks in her chair. Hmph. If only we had that freedom. Lol. What a teenager!