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Friday, March 3, 2006

A Day in the Life of Elisabeth ...

I wake up to the voice of Susan Stanberg and think about how the news today will have consequences for my children in the future. At least I'm given advance warning. Thank you, Susan, and sorry if I typed your last name wrong.

Mudslides covering two villages, investigations, and I begin sipping the coffee I am handed by my husband who's been up since 4:45 and had at least 45 minutes of healthy exercise. I get up to stretch catching the end of a story on the radio before I move to the kitchen table to glance at the headlines on the paper. A paper from another world. I look out the window. I stare for about 10 minutes at the darkness beyond my window waiting for the sun coming up over the horizon. I see smidges of silver and orange. I refill my coffee and move back to the table turning to Arts and Leisure and begin reading a very unfavorable review of "Barefoot in the Park."

Opinions are not tolerated much these days. I am against war.  Right now in Cincinnati, its 6:20 a.m. at 28 degrees. Last night it was just 62 degrees in the middle of winter. This means Elisabeth has to dress warm for her one and half hour bus drive to school. She's still sleeping and I check to see if her Daddy packed her white grape juice for lunch. I wonder how different our world would be if Jimmy Carter got his second term. I think about Senator Glenn and Al Gore working two terms and Theresa Kerry as "First Lady."

I hear music in Elisabeth's room so she must have activated the communication button with her head as she turned. This means she is stirring. She looks so peaceful. Two cats and a dog are sleeping peacefully in her room. I quietly give her the first call to "wake up" and she doesn't budge. I look for the diaper, wipes, and wash cloth for dressing. I pick out a neat outfit with rhinestones glued on her jeans and top. There is no movement. Even from the dog. I begin searching for a pair of shoes to match her pants.

Daddy gives her the second call and kisses her. He slides the protective rail on the side of bed and talks to her. We comment about her "Mona Lisa" smile. Her eyes are still closed but she is smiling now. My conversation with her at this point is going over all the things we have to do this morning before her bus ride including saying good-bye to Daddy and big sister. Daddy gives her another kiss and says "good-bye." Her big sister comes in to say "good-bye," too. In unison, we call out to her "it's time to wake up, sweety." We love to watch her smile when she hears our voices.

The routine begins. She stretches first her arms then legs. She rolls over allowing me to change her diaper and give her quick wash. She is smiling at me. At 11 and half, she is about 43 pounds. It's a wrestling match putting her cloths on, rolling her this way and that. I look forward to putting on her pink "chucks" and tightening the shoestrings because the wrestling will be at end for awhile or until I have to put her in her chair at the table. I rub the heels of her feet and hope this is the day she will stand without assistance. The Great Leap Forward. There is a political movement to that name but at this point my mind is drawing blank.

The wrestling match continues while I walk her to the breakfast table. I'm thinking about "Kimmy" and "Patrick's" mom now because they have 16 and 18 year olds who weigh in about 50 or 60 -- maybe more. I would be exhausted by now. I can't imagine what Mildred is doing. Daytra and Perez weight at least over 90 pounds and cannot stand upright without flopping over. I can at least feel Elisabeth's muscles develop each day from the exercise she gets by doing "occupational" things.

Elisabeth eats her bowl of cereal, banana, and juice as I guide her arms and hands so she can feed herself. It gets a little messy with her hand tipping or tossing the spoon. Most times she misses the aim and the spoon and cup end up on the floor. I run to get a towel so her cloths stay clean. After 11 years, one would think that I'd have a supply of "bibbs." When I turn my back to get a clean towel for wiping, Elisabeth reachs for the bowl across the table and drops it on the ground. There is big laugh and an appreciative doggy laps up the milk and cereal. This is good thing that she is reaching across the table for something she wants. Or maybe she doesn't want it. I think she is playing "watch me, Mom." I love to hear her laughing. I am grateful she has a way of amusing herself.

I read her bits and pieces of articles while she looks on after I clean up the rest of the mess. Her hair is in need of brushing so I look for the brush. We have a million brushes here at home and at least three places that are labeled specifically for brushes but I can never find one. I look around. We finish up at the table and I walk over to get her lunch bag and put the remaining goodies in. I forget to brush her teeth. We "talk" about the lunch Daddy packed and get ready for the trek downstairs to her wheelchair. My neck is a little sore so I try to walk her through the room instead of carrying her. It takes about 20 minutes and we use the stairs. There are 18 steps with a landing in the middle. We bought this house thinking this would be good place to put an elevator lift for the future "just in case."

As each foot aims carefully for each step I wonder about Holly's Mom who must be very grateful her daughter at 15 who started walking recently. I remember how I cried when I heard this. I remind Elisabeth what she needs to do at school. "Try a little harder today to stand on your own." I can feel her arms and legs begging for independence. Her hands and fingers are tightly gripping my wrists for support. She is tipsy but she is also very determined. I love to feel her clasping my wrists.

I look for a clean coat and tie up the cuff of her sleeve inside out to protect her hands and fingers. Sometimes I put gloves on but the yarn is very abrasive on her mouth and she comes home with bad rashes from stroking her tongue which she does on her bus ride. I zip her up and put her safety belts on to prepare her for the bus ride. It's 7:30 and the bus will be here in any moment. I look for the brush again and find one in her back pack. I run back up stairs to get her lunch and call out to Elisabeth's little sister to wake up. At one time she was an early bird and watched for the bus. She is still sleeping soundly.

Elisabeth and I hear the diesel bus coming down the hill. It's time. It's Friday. I look up into our tree and notice the squirrel nuggery is safely attached to the branches up high. Only the night before we had 45 mile hour winds and was amazed that it was still intact. "How do they do that? How can they make a pile of leaves stay up so high without breaking apart?" I ask Elisabeth as I push her up the hill. The bus stops in front. Elisabeth lifts her arm up alittle and gives a big grin to the big yellow bus in view. She smiles for Mr. Simpston and Miss Angel. They're covered in down coats and fur trimmed hoods. I roll her on the wheelchair lift. She is not looking at me but turning to see if Miss Angel is behind her where she usually is. She is laughing and smiling. She is happy.

Definition of Disability According to IDEA LAW

How Does IDEA Define the 13 Disability Categories?

The IDEA provides definitions of the 13 disability categories listed above. These federal definitions guide how states define who is eligible for a free appropriate public education under IDEA. The definitions of disability terms are as follows:

1. Autism...
...means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects educational performance. Characteristics often associated with autism are engaging in repetitive activities and stereotyped movements, resistance to changes in daily routines or the environment, and unusual responses to sensory experiences. The term autism does not apply if the child's educational performance is adversely affected primarily because the child has emotional disturbance, as defined in #5 below.

A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied.

2. Deaf-Blindness...
...means concomitant [simultaneous] hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.

3. Deafness...
...means a hearing impairment so severe that a child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance.

4. Emotional Disturbance...
...means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance:

(a) An inability to learn that cannot be explained by intellectual, sensory, or health factors.

(b) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.

(c) Inappropriate types of behavior or feelings under normal circumstances.

(d) A general pervasive mood of unhappiness or depression.

(e) A tendency to develop physical symptoms or fears associated with personal or school problems.

The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance.

5. Hearing Impairment...
...means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance but is not included under the definition of “deafness.”

6. Mental Retardation...
...means significantly subaverage general intellectual functioning, existing concurrently [at the same time] with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.

7. Multiple Disabilities...
...means concomitant [simultaneous] impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes such severe educational needs that they cannot be accommodated in a special education program solely for one of the impairments. The term does not include deaf-blindness.

8. Orthopedic Impairment...
...means a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly (e.g. clubfoot, absence of some member, etc.), impairments caused by disease (e.g. poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).




9. Other Health Impairment...
...means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—

(a) is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and

(b) adversely affects a child’s educational performance.

10. Specific Learning Disability...
...means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities; of mental retardation; of emotional disturbance; or of environmental, cultural, or economic disadvantage.

11. Speech or Language Impairment...
...means a communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.

12. Traumatic Brain Injury...
...means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.

13. Visual Impairment Including Blindness...
...means an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.