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.
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!
photos, ideas, thoughts, information
house proofing
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