autism

A day in my daughter’s life

Sunday, June 15th, 2008
by badr

I hear sound coming form my daughter’s room. It isn’t even 6 yet, already she is up! How long has she been up? I went to bed last night at 2AM. I can only seem to get housework done after 9pm when she gets to sleep.  Usually I start cleaning at around 11. I need a few hours of downtime to unwind after a hectic day with K. Seems like today will be another long one.  I get up and open the door to her room. The stench is overwhelming. She is in her closet, covered in her own crap. Again. I am not careful. I step on her diaper. It has been partially gnawed at. Great! Laundry today again, since she has pulled out her clothes from the closet. She tried them on and has dirtied them with her caca. Oboy.

To the bathroom we’re off, I draw the water. Same temperature every day, for it will be hell if it is hotter or colder. Her hair has dried doodie. I know a struggle is afoot, she hates the water in her hair when there is shampoo and scrubbing involved. Damn!  I hate to see her upset. I better invest in some blindfolds, ‘cause this will be upset to the nth degree.  I start to put shampoo in her head. EEEEEEEEEEEEEEEEEEKKKKKKKKKK!!!!!!!!!!!!!!GGGGGGGGGGGGGGGGGAAAAAAAAAAAAAAA!!!!NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOONOOOOOOOOOOOOOOOOOOOO!!! She screams, cries, pulls,kicks…………AAAAAAAAYYYYYYYYYYYYYYYY!!!!!!
I start to sing various Wiggles’ songs, she seems to like the Wiggles! Maybe it will distract her. She is struggling with me! I have no idea where she gets the strength! She punches me and tries to jump out of the tub.  She is slippery as I grab her and she gets loose.  I drag her firmly back in. The water is brown and I start to drain it. It looks like a torture scene. I wonder if the neighbors can hear. I wonder if they will call the cops, thinking I am hurting her. I wonder if she thinks I am trying to drown her. I wonder if she knows I love her. I wonder if she will ever stop. I wonder if I should shave her head! I wonder if I am doing the right thing. She is still crying as I rinse the shampoo out of her hair, careful as I can to not get it in her eyes. I am crying right along with her.  It is 6:45 AM

I am moping up the floor with my own clothes, since I have stripped naked. I too need a quick bath. I go to my daughter’s room to put on the TV for her while I bathe. It stinks. I tackle the mirror. I flip the mattress over, I will clean the caca later, now she needs a place to sit while I get dressed. I squirt Febreeze everywhere except up my nostrils. I sit her on the bed and tell her mommy will be with her in a few minutes, and Barney is teaching her about colors and numbers, yeah! I let the hot water run over me, and I pray it takes with it my frustrations. I pretend I am getting doused with patience and understanding. It’s not her fault, it’s not her fault, she doesn’t do it on purpose… this is the mantra I repeat over and over, while I struggle between the desire to escape down the drain with all the water and the knowledge that if I don’t get out of the shower fast enough I won’t know what is waiting for me.  I peek in her room. She isn’t there. I nervously go into MY room, dreading another shitty episode in my bed or closet. Hell, it’s been known to happen! Nope. Not there. I go down the stairs. There she is! Wait a minute.  What is that on her hair!  What is she doing?!?!  Is that my book?!  “KEILANI!!!!!!  NOOOOOOO!!!!!    Off she goes, before I can get to her!  She gets up with matrix like motions, I can see the room almost from every angle. Damn she’s fast!  Before I can reach her, she is under the dining room table. She won’t look at me. She is shaking her head no, as if to negate my existence. I wonder what she’s thinking. She looks oddly at peace.

Didi
valan1@msn.com

Hello, my name is Keylani…

Sunday, June 15th, 2008
by badr

Hello all!

My name is Keylani and I am a 7yr old Autistic girl.  This is how a typical morning went for me.  I was 4yrs old:

I awaken to pull out own hair and eat it, I defecate and play with own feces, spread it all over walls, mattress, mirrors, doors
proceed to eat portions of diaper, I grab doll, chew on dolls fingers and hair, I grab book, pull out pages, chew on book.
lick the walls, eat plaster and paint.  … it’s not even 6AM yet.  When mom wakes up, she will not know what awaits her today, until she opens the door to my room to find me in my closet covered in my own waste from head to toe again, and again drag me to the bathroom. I don’t like the feeling of soap on my hair or the towel on my skin as she bathes me so I will fight her with every bit of strength I have. I don’t like water or soap on my hair!!! LEAVE ME ALONE!!!. I scream, I kick, I cry… Mom cries with me. She is tired. She soothes me, telling me she wants me to be clean and happy and healthy and pretty. I don’t care. I don’t want soap in my H A I R. She begins to sing, and doesn’t seem to care I am punching her.  It is 6:45 AM.

I run downstairs. Mommy is mumbling something or other. I go under the dining room table. I am safe. I flap my arms and wave my hands in front of me. It sooths me to see the patterns that emerge. 10 fingers become 30 as I wave them back and forth rapidly.

OOOOOOOOHHHHHHOOOOOOHHHHHHHHHHH WWWWHHHHHHEEEEEEEEEEEEEEEEEEWHHHHEEEEEEEEEEEEEEEEEEEEEEEE!!!!

I am bouncing in place. I know I am supposed to be upset but I don’t know why. I am overcome by the sense I should be doing something. I spot a book on the couch. I run over. It looks interesting. I rip the cover off. I munch on it. I don’t swallow. I stick the mush on my hair. I do this about three times. In the meantime, I am ripping apart the pages of the book, careful to notice the sound of the paper tearing. The pattern the break leaves. The size of the paper, so the next one is nearly the same size. It is hard to be precise. I am only 4 years old. Out of nowhere, I hear “KEILANI!!!!!!!! NOOO!!!!”.  Here she comes. I am faster. I run back under the dining room table. I am safe.