Essentials PEPSI Elementary Adolescence Advanced CD
 

Developmental Delays

Two of my children have developmental delays. Like others who share the role of teaching, researching and living with the concept of mental retardation, I find the literature rather flat and not informative enough. After all, I have two wonderful, intelligences and personalities that are not touched on in the literature as the real people they are, and I have 3-D, living breathing, 24 hours a day happenings that inform me about the ebb and flow of youth who are mentally challenged.

One of my daughters, Emily, has Down's Syndrome. She fits many of the profiles I read about and she is very difficult to test, as is true of many retarded youth. She has math and reading abilities at the preschool level. She shows an IQ between 30 and 45 pretty consistently. That puts her below the moderately retarded range.

Mental Retardation

People with mental retardation are those who develop at a below average rate and experience difficulty in learning and social adjustment. The regulations for the Individuals with Disabilities Education Act (IDEA), formerly the Education of the Handicapped Act (Public Law 94-142), provide the following technical definition for mental retardation:

Definition "Mental retardation means significantly sub average general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance."

"General intellectual functioning" is typically measured by an intelligence test. Persons with mental retardation usually score 70 or below on such tests. "

Adaptive behavior" refers to a person's adjustment to everyday life. Difficulties may occur in learning, communication, social, academic, vocational, and independent living skills.

Mental retardation is not a disease, nor should it be confused with mental illness. Children with mental retardation become adults; they do not remain "eternal children." They do learn, but slowly, and with difficulty. Probably the greatest number of children with mental retardation have chromosome abnormalities. Other biological factors include (but are not limited to): asphyxia (lack of oxygen); blood incompatibilities between the mother and fetus; and maternal infections, such as rubella or herpes.

Certain drugs have also been linked to problems in fetal development. Incidence Some studies suggest that approximately 1% of the general population has mental retardation (when both intelligence and adaptive behavior measures are used). According to data reported to the US Department of Education by the states, in the 1994-95 school year, 570,855 students ages 6-21 were classified as having mental retardation and were provided services by the public schools. This figure represents approximately 1.7% of the total school enrollment for that year.

Characteristics: Many authorities agree that people with mental retardation develop in the same way as people without mental retardation, but at a slower rate. Others suggest that persons with mental retardation have difficulties in particular areas of basic thinking and learning such as attention, perception, or memory. Depending on the extent of the impairment -- mild, moderate, severe, or profound -- individuals with mental retardation are likely to develop differently in academic, social, and life skills.

By Lynn Johnson - http://babyparenting.about.com/library/weekly

Criteria for Diagnosing Mental Retardation
IQ - 2 deviations below the mean - 70 or lower (+/- 3 points)
Disability must occur between conception and 18 years of age
Adaptive skills - limitations in ability to function in life along with intellectual deficit

Definition of the American Association on Mental Retardation (AAMR): Mental Retardation refers to substantial limitations in present functioning. It is characterized by significantly sub average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work. Mental retardation manifests before age 18.

AAMR Classification
Level of Support
Intermittent Student needs support on an "as needed" basis. Person may need assistance when beginning a job - job coaching, help during life crisis or changes, may need transition support at the beginning of a semester, while learning to use a locker, adjust to commuting by bus.
Limited Student needs support from others on a regular basis over time, but for a limited number of things, or for a small part of each day. For instance, the person may need help with food preparation, getting to and from a job site, help purchasing commodities and budgeting, but is self sufficient in many daily and weekly chores.
Extensive Student needs consistent and regular support for some part of every day. For instance, the student may be able to work with intermittent job coaching or school support, but needs assistance for daily living. The student may be able to dress self, for instance, but not understand appropriate clothing choices.
Pervasive Student needs consistent and intense support on a daily or even hourly basis and in most, if not all facets of living.

Now you have a definition and characteristics, but it doesn't begin to tell you about Emily.

First lets get a little history about her. I am a single parent, and I adopted Emily when she was seven. She was in foster care for a long time. One of the homes, in particular, was a very good one, but she was shuffled around quite a bit. A case manager told me that Emily was neglected by her parents as an infant, and removed from their care. She said that Emily was abused in several placements, which appalled this social worker who had a deep concern for Emily's well being. Didn't learning that little bit of history already add dimension and the first touch of empathy for Emily?

When Emily got out of the car and stepped foot on our property for the first time, I pointed out a woman across the yard and said, "Emily, that is your Grandma." Emily looked in her direction, raised her little fist, shook it and screeched, "Get here, Grandma" and that was the end of a potential relationship with Grandma.

The day Emily came home, there were five other children in our family. Two were teens who immediately began to teach her sign language, baby her and dote on her. Three were younger children who seemed bemused. It took about three months for different members of the family to see Emily as a person, to become personally involved in her well-being. That is an important thing to remember. In the classroom and elsewhere, it takes a while IT TAKES A WHILE for barriers to come down naturally and connections to be made.

The first night was memorable. Emily went to bed when told, in her own double bed in a room next to mine. The people who cared for her last said that she got up in the middle of the night and wandered out of the house sometimes. I wanted her close so I could be alert to her movements. The night seemed uneventful.

In the morning, I went to waken her with a hug and help her adjust to new surroundings, but the bed was empty! We rushed everywhere. The whole neighborhood was alerted by 6:30 a.m. as we went door to door. An hour later, I went back down the stairs, sat on the chair next to her bed in despair. That's when I heard a little rustling. I rushed over, looked under the bed, and there was Emily. She was sleeping in a pretzel position -- her legs folded up into each other, she was leaning across her legs, her head all the way down to the floor, sound asleep. I had no idea anyone could sit like that, let alone sleep in such a position. I tip toed out, rounded up the kids, we knelt around the bed and woke her, singing "You are my sunshine, my only sunshine." Then we all had a laugh of relief. What do you think of Emily now? Does this have anything to do with her retardation? Maybe -- children with Down's syndrome can be very flexible indeed! But didn't you begin to add dimension to Emily the person? For me, that is the critical piece in special education. The student is special, and thus we find the appropriate, caring way to reach this special person, this darling little seven-year-old, folded under the bed.

The sagas surrounding Emily and food are some of my favorites. Oh how that girl loves to eat. Pastas like spaghetti, macaroni and any kind of beans are her very favorite foods. Sometimes I will be typing away, lost in work and miss meal time. She will stand in the doorway to my study, make little noises, and when I turn around, she will say, "Mommy, I love you." We exchange pleasantries, and I go back to typing. In a few moments she will come tap me on the shoulder, make a long sad face and say something like "Poor Emily, she hates beans." I usually stop at that point and make dinner. This is pretty interesting! How does someone with such a low IQ know to joke and tease about things? This is just one of so many little inside jokes she makes - and she does it knowing its funny because she is always grinning with twinkling eyes as she delivers the one liners.

Emily finally learned to button her clothes. Hallelujah! If someone can't button pants they can't wear jeans, and take care of toileting. They can't get dressed in the morning unless they have clothes with no buttons. It gives a person a great sense of well being to be able to self dress. Emily loves to pick out her own clothes. Every night, before going to bed, she gets out the things she is going to wear. It is an activity that consumes at least a half hour of her time. She sorts and picks through her clothes, puts them on a hanger on the door next to her bed. She goes back over the choices, adds the socks she wants and even puts the underwear on the hanger. There are so many things she loves that have buttons, and she really adores wearing jeans. You can imaging just how excited she was when she finally learned to do buttons on shirts - and then even got over the hurdle of buttoning her pants. What a celebration we had. She might as well have won the lottery. And though she was 18, it didn't seem any less special than if she had learned at age four. Perhaps it was so special because we worked to achieve this for so many years. Know what? She still gets excited about it. Do you think Emily is finally finished learning and growing? She doesn't think so. We are still working on getting shoes on the right feet and tying the shoes. One day that set of skills will be something we take for granted.

I never read in a book about how gratifying it is to watch someone make these gains. I did not understand, until Emily, how little it matters if a person takes a long while to learn,or that it can be more pleasure than pain, that helping someone to learn at an individual pace. I read about plateaus, and what the person needs to be able to do to become self sufficient, but I never really got a good picture until Emily became my daughter. You see, Emily is this darling person, who wants to watch the Wizard of Oz every day, and calls our dog TOTO. She sing "Oh, my daughter, Clementine" instead of Oh my darling, and she puts her shoes on the wrong feet. She love pink and likes to wear pink and red together ---- OH MY! --- and she talks on a play phone - and knows its a play phone, but loves to hear herself talk. She can't really read, but she can name the letters while we are driving along in the car, and she is simply wonderful. She is a pain in the neck,

what are you doing that for,

Oh no, not again!

perfectly wonderful

extroverted

young woman

and everyone who ever gets to know EMILY - really know EMILY, just adores her.

What do Emily's siblings say? Loyal Lovable I get such a kick out of her sense of humor -- she's a riot Emily's really a stubborn chick She really wants to help She depends on me, She sticks to her guns Oh, Mom, she is just such a sweetheart!

Melissa is also developmentally delayed. I adopted her before Emily, and she was four years old. Melissa has Fetal Alcohol Syndrome and when tested, she scores between an IQ of 40 and 55. She is both smarter and more clueless than Emily. She comes close to falling in the moderate range, and her abilities are all over the cognitive map. Emily reminds her to look both ways before crossing the street, because Melissa gets impulse driven and forgets.

Melissa knows she is slow to learn and she hates it a lot. She also compensates for it all day long. She does it in very positive ways. She listens a lot so she can repeat what it going on and knows what is coming next. She likes to help be in charge, and she works for a school district as an aide. She does it for free. Every morning she gets up early, gets ready for school and walks the 1/2 mile to help the kindergarten teacher. When school is out, she works with the after school program. She also helps as an aide in the Girl Scout troop. This is work she loves and at the kindergarten level, she can do everything the children do -- and a little more. It's a funny thing. If Melissa just works at an intuitive level, she is usually good at what she does. If someone stops her, asks her to think about what she is doing, she can't perform as well.

She loves to boss Emily around. She hates to make a mistake. She keeps her room really neat, loves to listen to Country and Western music and while she listens, she watches her lips move in the mirror. It really fascinates her. She if a very good speller - almost a natural talent. She has an excellent sense of direction and never seems lost. In fact the whole family counts on her to help with spelling a word or know which direction to turn. Wow, does she revel in that! She will tell people about her strengths and what she loves to do without hesitating to wonder if they want to know. It never occurs to her that anyone might dislike her, and when students do ugly things, she becomes incensed at their lack of manners rather than acting hurt or considering that they might find something wrong with her.

She is quite hyperactive, but she has learned to keep it under control. She can get very irritable, but she wants to know that is how people are feeling and will work to get her moods under control so no one feels hurt. She loves to dance to exercise tapes, and at first she was really awful and uncoordinated, but now she and Richard Simons really rock the hour away. If you ask her, she will tell you that she thinks she is right there with him. Melissa cannot stay focused on a television program and does not get the plots or see what is coming in movies. Emily, on the other hand gets excited, follows the plot, remembers and identifies with the characters.

Melissa loves to vacuum, but doesn't remember about corners or move furniture. She loves to do dishes, but is not very consistent. It is easy for her to forget the wraparound pieces of a job. One day I got a letter from the school. They wanted Melissa to ask questions when she didn't understand the job. I had to smile. Melissa doesn't know she doesn't know. Emily knows when she is not able to perform a job. She intentionally becomes engrossed in something else and won't even try to listen to directions. That is an interesting difference. Who is the smarter of the two?

Melissa is very proud of being Native American. She does not really remember being in foster homes, though she was in many - in fact never met her natural parents. She understands that she is adopted and makes up stories about our family picking her up at the hospital. She definitely has a sense of history, a personhood, esteem about her heritage. She recognizes things that are Native American and collects things that speak to her heart. She tells me that everyone thinks she is very pretty and she tells them it is because she is Native American.

What do Melissa's siblings say? She really loves to help So loving Can't keep her hands off those puppies Bossy She is absolutely genuine Great with beads and making jewelry Wow does she do a great job on the dishes How can she love to vacuum? Efficient Melissa, will you help me with . . .

So, what does it mean to be retarded? It is as different as the children themselves. It suggests limitations, I suppose, but more importantly, I think it is a flashing light that says "caution" . . . person first - real live person with personality who is just as real as you are - who has gifts and strengths - and needs extra support and encouragement to develop all of that uniqueness and specialness packaged in this person.

 

Subject
Personal notes

Introduction to mental retardation

Preparation for life in the community

Fragile X information and links

Down Syndrome site with many links

Tay-Sachs

Tuberous sclerosis

Family Village site set up for DD browsing, resources

Fetal Alcohol Syndrome or Effect

Down syndrome links

Mental Health and Developmental Disabilities

Resources and links

ARC - Association for Retarded Citizens

Encarta summary and definitions

Books and resources

Down syndrome

Tony's Story - a young man with Down Syndrome

Library-in-the-sky

Siblings of youngsters with Down Syndrome

SERI including Special Olympics

Nice perspective by superintendent of a district

Rehabilitation Training Clearinghouse

  

 

FAS NOTES ON FAS/FAE AND SECONDARY SYMPTOMS WHICH MAY DEVELOP OVER TIME:

"The one thing we can say about FAS/FAE is that no two youngsters are the same." (Randels) Because of the wide variability of the nature of the impairment, degree of effect, their manifestation and presence of confounding variables (secondary symptoms) there is no "cookbook" approach to working with individuals who are effected. The following are common issues teachers and parents face, followed by strategies that may help.

Bits and pieces of the Thinking Puzzle

Memory deficits

Difficulty translating from one modality to another (hearing into action, talking into action, words onto emotions)

Slow cognitive pace: Time lag from input to understanding to action (trouble with seeing a movie, taking notes)

Random reinforcement: Spotty learning, retention (need constant reminders, reteaching) Inconsistent memory:

Memory is unreliable for them. ("Aware that they're not doing something right, but can't figure out what it is" - Morse) Learn on Monday, forget on Wednesday

Auditory processing, vision processing problems

Abstractions are difficult to learn or maintain: -: Math, Money, Time, Measurements

Learn facts as isolated entities, may have difficulty mastering new skills and integrating these with earlier learning

May have trouble retrieving accurate words from memory, rely on 'off the wall' comments to attempt to communicate.

Have difficulty forming links, i.e.., between behavior and consequence, cause and effect.

Poor predictive skills: Prediction is based on ability to reflect, integrate, relate events, synthesize, compare and contrast, and project abstractly into the future.

Impulsivity: Impulse control is based on prediction.

Poor social skills; may miss nuances, meaning of social cues. Limited in traditional problem solving skills, planning

May not make associations, i.e. between clothing and weather, etc.

May not generalize behaviors from day to day, i.e., "Don't hit" then hits the next day, 'Don't ride in the street', rides in other street.

Have difficulty filtering and prioritizing external stimuli

May be distractible

Hyperactivity/increased motion may reflect over stimulation

Have difficulty seeing patterns, sequencing and tracking

May have difficulty distinguishing fantasy from real life (especially where protective mechanisms are in place.) .

May be related to slow cognitive pace, need for time and closure

May relate to resistance to change (to the relative unknown)

May relate to rigidity which reflects attempt to control and make sense of their environment (If one can't anticipate, predict, change may be frightening.)

"Keep on keeping on", have difficulty initiating stopping of a behavior, whether a project, teasing, interrupting..

Cumulative effect of chronic frustration, global defense mechanism.

May have difficulty accessing, processing and relieving stress and frustration.

Accurate association of words and internal state may not be readily available; internal discomfort may not be alleviated.

Affect may be flat, responses to painful stimuli may be blunted Shut down may alternate with explosive episodes with little provocation

May appear as withdrawn, passive, resistant, lying, aggressive, otherwise defensive.

May resist school, act out among peers.

"Peer driven"; many behaviors at home may reflect rigidity and perseveration around affilliative needs and behaviors intended to create or preserve peer relationships

Shut down, defiance/noncompliance appears common for adolescents where there is a perceived threat to peer relationships; not uncommon for adolescents in general - the degree to which behaviors occur and their resolution are reflective of organicity

Possible Techniques and Solutions

Identify shut down cues, areas of chronic frustration.

Walk through process of deduction and prediction.

Specifically teach social skills.

Model appropriate behaviors, conflict resolution, identification of feelings, concerns.

Provide structure rather than control.

Simply articulate/demonstrate similarities and differences.

Provide concrete, life-skills related opportunities to explore similarities and differences.

Assure 90%, check for retention periodically

Understand learning curve, issues of organicity in planning teaching strategies.

Identify strengths, integrate into environment.

Modify expectations to be congruent with actual level of ability.

Refer as appropriate for specific support for psycho- social issues related to FAS/FAE.

Recommend: Observe patterns, re-frame perception of problem.

Depersonalize. Provide structure rather than control, invite individual to participate in developing goals and structure.

Articulate goals, expectations and timelines; modify as appropriate.

Provide simple, one step cues, check to assure comprehension.

Introduce information in as many modalities as possible.

Modify the environment as appropriate, either increasing or reducing stimuli

Prepare for transitions

Forewarn, anticipate, state, act upon reinforce, monitor - Sources: Morse, Rathbun, Malbin

 

Tips and Strategies

Educational Interventions
Personal Notes

Increasing social competence

Gentle teaching techniques

Strategies and techniques in numerous subjects

Teaching science

Teaching map skills

Booklets on DDMR from the President's Council on MR

Information on Occupational Therapy and DDMR/LD

Computers and how they help

Assistive technology helps disabled

Nutrition and social techniques

  

 

Meeting Student Needs and Promoting Communication and Personal Growth

Student action

Needs
Creative solution
Student pretends to talk on the phone, and speaks to someone who is clearly not present

Student - stimulation and socialization -- We often recognize the cognitive delays without realizing that there are also emotional and social delays. Many people advocate age appropriate clothes - no Mickey Mouse or Goofy shirts, lunch boxes, while a better consideration might be, what does the person enjoy? Imaginary friends are not uncommon for four-year-olds, and many students who are DD spend part of adolescence being emotionally four or five.

 Increase the level of socialization with peers and recognize that talking with an imaginary friend may signal a wish for closeness and intimacy. Telling the student that the imaginary friend needs to stay at home and may not come to school is a simple solution that can be very effective.
Student does not stay focused on assessments and results appear to be unreliable and provide little help in understanding the student's level of cognitive functioning

Student - frustration; desire to feel successful, to have fun

 

 Few assessments are normed on this population and most norm referenced tests are too difficult for DD students to establish a basal. Watching the student perform tasks and having them talk as they go is one of the most informative ways of finding out what type of constructions they have and how much ability they have to think or reason through the tasks
Student raises hand and talks off the subject during instruction Student - time for processing information can be much more lengthy than for others. For most children, the ability to listen to and then respond to a question is almost instantaneous. With some students, processing time may be nearly a minute from input to preparation of a response Keep instructions specific and use ritualized learning activities that have proven themselves. Consider supporting instruction with simple signs. Prepare to increase wait time and to remember that moving on may confuse the ability to answer. Be sure to check hearing and vision frequently. Inner ear infections can be "invisible" as can was accumulations - common in this group.

Fill in the next three cell rows, using the ideas you gain from experience, from materials in the text and in your web searches. Identify a likely student communication pattern that may hamper learning and then go through the process of defining needs, then finding a solution that allows everyone to get needs met

Book List

Baldwin, A.N. (1978). A little time. NY: Vikiing

Berube, M. (1996). Life as we know it: A father, a family, and an exceptional child. NY: Pantheon

Blatt, B (1988). Christmas in Purgatory: A photographic essay on mental retardation: Boston: Allyn and Bacon.

Bogdan, R., & Taylor, S.J. (1982). Inside out. Toronto: University of Toronto Press.

Brown, R. (1972). Escape the river. Boston: Houghton-Mifflin.

Buck, P.S. (1950). The child who never grew. NY: John Day Co.

Byars, B. (1970). The summer of the swans. NY: Viking Press.

Carpelas, B. (1971). Bow island. NY: Doubleday.

Conrad, J. (1907) The secret agent. NY: Doubleday.

Craig, E. (1972). P.S.: You're not listening. NY: Richard W. Baron.

Dorris, Michael. (1996). Broken cord. New York: Harper Perennial. A father's story of his adopted son, who has fetal alcohol syndrome. This book received the 1989 National Book Critics Award and the 1989 Christopher Award.

Faulkner, W. (1929). The sound and the fury. NY: Random House.

Harris, George. (1983). Broken ears, wounded hearts. Washington, DC: Gallaudet College Press. A father tells of struggles to help their handicapped child in the face of many difficulties.

Itard, J.M. (1932). The wild boy of Aveyron. NY: Appleton-Century Crofts.

Kaufman, S.Z. (1988). Retarded isn't stupid, Mom. Baltimore: Paul H. Brookes.

Keyes, D. (1966). Flowers for Algernon. NY: Bantam Books.

Menashe, A. (1980). Inner grace. NY: Alfred A. Knopf.

Meyers, R. (1978). Like normal people. NY: McGraw-Hill.

Morris, M.M. (1989). Vanished. NY: Washington Square Press.

Murray, J. B., & Murray, Emily (1975). And say what he is: The life of a special child. Cambridge, MA: MIT Press. The parents of a "special child" with a severe developmental disability tell their experiences and growing recognition of the boy's personality and meaning for their lives.

Perske, R. (1986). Don't stop the music. Nashville: Abingdon Press.

Sacks, O. (1987). The man who mistook his wife for a hat and other clinical tales. NY: Harper and Row.

Sexson, L. (1988). Hope chest. In Margaret of the imperfections. NY: Persea Books.

Spencer, E. (1960). The light in the piazza. NY: Harper Brothers.

Steele, M. (1966). The goblins must go barefoot. NY: Harper Brothers.

Steinbeck, J. (1937). Of mice and men. NY: Viking Press.

Yamada, Jeni E. (1993). Laura. Cambridge, MA: MIT Press. Despite an IQ of about 40, Laura, the subject of the book, made considerable progress in language development. A language specialist's point of view is the central voice. Laura's accomplishments in learning language are interpreted within a modular theory of language.

 

 

Phenylketonuria (PKU) LKS - Landau - Kleffner Syndrome Angelman Syndrome
Fragile X Syndrome Pervasive Developmental Disorder (PDD) Fetal Alcohol syndrome
Tay-Sachs Tuberous sclerosis  

 

 

Movies

Of Mice and Men Charly Rebecca
To Kill a Mockingbird Tim Testament
David - Portrait of a Retarded Youth What's Eating Gilbert Grape? Welcome home, Jellybean

 

Video - Educating Peter (HBO-TV)

Diary Entry written by April Heller
Assignment: Write out a diary entry portraying the feelings of a father of a boy with Down's Syndrome. Share the father's goals and hopes and dreams for his son.

July 4, 1990 My son was born today at 5:00 p.m. I should feel so excited. I have been waiting a long time for this to happen. The whole world seems to be celebrating my son’s arrival tonight. There are firework s going off everywhere. I don’t feel like celebrating though. See my son was born with something the Dr. calls. Down Syndrome. What is Down syndrome anyway?

July 6, 1990 My son’s in critical conditions. His lungs are not as developed as they should be. They will not let us take him home yet. Yesterday the Dr. gave us literature on Down syndrome. Basically, it means that my son was born with an extra chromosome. I always thought that more was better. I guess not in this case. He will probably be somewhat mentally retarded. He might never be able to walk, talk or be able to feed himself. I wanted a son to be able to play ball with.

July 9, 1990 We named our son today. Charles Wellington Church. Such a name for a small tyke. We haven’t hardly told anyone that Charles has Down’s. Except for our parents. I don’t even know have to tell anyone. What do you say?

July 10, 1990 Charles is doing better we might be able to take him home by the end of the week. I wish I were doing better about excepting this. Tomorrow he will be a week old.

July 15, 1990 We were able to take Charley home today. I haven’t told my coworkers yet about charley having Downs. I found out that Downs is short for Down syndrome. They all came up to me excited that Charlie got to go home.

July 18, 1990 Our best friend’s Pat and Becky came over to see Charlie. He looks different from other babies. I don’t see much resemblance of either of us. Pat and Becky looked very uncomfortable when Charles was around. They didn’t know what to say. They tried to tell us that it would be OK.

August 4, 1990 Charlie is now one month old. He just lays they. He hardly makes any expressions and he still is so small. People at work keep bugging me to bring in a picture, but I don’t want to. Janet wants to pretend that nothing is wrong with Charlie. Whenever I try to talk to her about it she just won’t hear it.

August 12, 1990 I have been working a lot more lately. I just don’t want to go home. I want to know why this happened to us. I guess it might been our fault. We are in our early forties. I read somewhere that you more of a chance to produce a child with downs. I just don’t want to think about it any more. I just wish that our child was normal. I am so angry.

August 24, 1990 Charles eyes are so slanty. He hardly looks around. He cries all the time. Janet still doesn’t want to admit that anything is wrong with her son. He is kind of cute. Charles sleeps a lot of the time.

September 4, 1990 Charley is two months old now. He just went in for a check up the doctor is still concerned with his lungs. They are not doing so well. That little guy seems like he is fighting for his life. I feel so bad that sometimes I am ashamed that my son has Down syndrome. The more I find out about the Syndrome the more that I don’t know about it. I read in a book that all downs have a particular look to them. That means that everyone who looks at my son will know he has Down’s. What kind of prejudice is he going to have to face because of that?

September 15, 1990 Today was a bad day. Somehow that people at work found out that Charlie has Down syndrome. They were all whispering behind my back. I overheard some of my coworkers saying how sorry they were for me. Why should they feel sorry? I am not sorry. He is my son. Why didn’t they just come out and ask me about it? I don’t want to pity that Chris was when everyone found out his son had cancer. Charles doesn’t have cancer. I just don’t know.

September 20, 1990 Mike came up to me today. He told me that he had a son with Down’s and he had heard that Charles was born with downs. He was trying to tell me that it was as bad as it seemed. That Marc is in school as and is learning skills that help him to be more self-sufficient. He also told me if I ever needed to talk that he would be willing. Yea, right. What am I going to say to him? Mike I am ashamed of my kid how about you. How can I be ashamed of Charles?

November 4, 1990 Charles is three months old today. He still doesn’t move around much. Pat and Becky came by today. They told us that Becky was pregnant. They were so excited. Becky accidentally slipped and said I hope that our baby doesn’t turn out like yours. That made Janet go crying to her room. I just got kind of quiet and Becky and Pat left and were apologizing all the way.

November 20, 1990 It was thanksgiving today. We went over to Janet’s family house. Her brother’s and sister’s were there with their children. Janet’s sister Lisa just had a baby around the same time that we did. Their baby was looking around and trying to grab things. Charles just basically slept through it. Nobody mention that Charles had Downs Syndrome. I was relieved.

December 4, 1990 Charles is four months old today. I think that he looked at me today. Janet still never wants to talk about Charley having downs. I talked to Mike at work today. He told me when first Marc came home, his son, that he was so afraid of what people might think. Mike says he doesn’t care what people think know Marc is his son and that is all that matters now.

December 25, 1990 It Christmas today. Janet had bought Charles a silly Santa suit today. I must admit he looked kind of cute. We went over to my families today. Grandma thought Charles was the most special thing. She just fussed over him.

January 1, 1991 Happy New Year! I hope this year brings better tidings then last year brought. Charles was scared by the noises when the fireworks went off. I was thinking that after the holidays pass and life settles down again I am going to invite Mike’s family to join us. I think that this would be good for Janet to see a family with a Down’s child.

February 26, 1991 Mike and his family came over today. He has a nice family. His wife is so bubbly. She and Janet hit it right off. Marc was a nice enough boy. He had the look though. I noticed that Charles also is acquiring that look. Actually Marc was really polite. He was about fifteen though he still acted like a kid and wanted to know if he could play video games. He couldn’t believe that we didn’t have a Nintendo.

March 4, 1991 Charles is six months old now. He is starting to look around more. He doesn’t seem to recognize anything. Maybe he is still too young. Mike wanted to know if we wanted to come over to dinner next week. I said that I didn’t know. He is nice enough. I will have to see what Janet wants to do.

March 16, 1991 Janet decided to join a group for mothers who stay at home. I feel kind of uneasy about that.

March 30, 1991 Just as I figured that group kept asking Janet what was wrong with Charles. She all defensive and just stormed out. I don’t think that she going back to that group. Which is fine with me.

April 23, 1991 Pat and Becky came over today. She is getting pretty big. They are pretty excited about having the baby. I remember being that exited. Charles is barely moving his head back and forth. He still can’t hold his head up.

May 4, 1991 Charles is ten months old today. He is getting fairly big. I think he actually smiled today. Janet came back from see her sister and there baby today because their baby was actually sitting up and she was only nine months old.

May 16,1991 Charles is starting to hold his head up a little. He might actually make it yet. Janet, Charles and I went over to Mike’s house today. The more that I am around Marc the more that I like him. He asked if he could hold Charles today. He was so gently and Charles cooed at him. Marc said he likes me with the huge smiles. It made all of us laugh.

June 13, 1991 Becky had her baby today. We went out to the hospital to see it. He was so cute and perfectly healthy. I am happy for them. Part of me wished that I had been that lucky.

July 4, 1991 Charles is one year old today. He was actually looking around. I told him that I arranged the fireworks just for him. I think he might have even understood me. It felt so good to hold him in my arms today.

July 23, 1991 We went over to Becky and Pat’s house to play cards. It has been so long since we did that. Their baby was so small. It makes me realize how big Charles is getting.

August 13,1991 Charles finally rolled over today. Janet was so excited that she had to call me at work. I had to go find Mike and tell him. He was so excited for me he told me to come over tomorrow and they would celebrate. He told me that it is the small accomplishments that can be the most important.

October 31, 1991 It’s Halloween today. Janet bought Charles the cutest costume. It was a little pirate’s outfit. We took him out trick or treating. Everybody loved his outfit. We even took him by Mike’s house. Marc couldn’t stop laughing when he saw Charles. He thought it was the funniest thing.

November 4, 1991 The doctor gave Janet some exercises to work with Charles on to help him sit up. They have been doing them for about two-week now. I think that it is starting to work. Charles even gets excited when he see me. He throws back his head and laughs when he sees me.

November 16,1991 We had Thanksgiving dinner with my family this year. Moms burn the turkey. She mentioned the Charley wasn’t sitting up yet. She said when her children were that age they were walking. Janet started to cry. It wasn’t one of the best Thanksgiving dinners that I have been too.

December 13,1991 Christmas is coming up. Janet has already decorated the house. Charles is now sitting up for a little bit. He can stay up if we prop him up against the cough. I can’t wait for the holidays to be over with.

January 5, 1992 I am back at work. Christmas went OK except for Janet’s sister baby was walking already and saying a couple of words. Charlie just sat around entertaining himself. It was an OK Christmas. I am going fishing with Mike and Marc this weekend.

June 16, 1992 I thought that I had lost my diary. So much has happened. We are packing up to move. We are moving to a bigger house. Charles is not sitting up and he is scooting around a little. Pat’s son Jim is also sitting up and scooting around. They some times have races with each other. Charles is just so much bigger then Jim though. Marc is going to go to High School next year he is so excited.

July 4, 1992 Charles is two years old today. I can hardly believe it. He squealed every time those fireworks went off. Mike’s family came over to help us celebrate Charlie’s birthday. Marc is convinced that the fireworks were put off just for Charles birthday.

August 16, 1992 Mike was nervous today because it was Marc’s first day of school. He is going to a regular high school. Before this he had been in a special school but now they are trying to integrate kids in regular schools. Mike was talking about IEP, PT and OT and other things. Frankly I didn’t know what he was talking about. He told me that we could probably get Charlie into school when he is three.

September 18, 1992 Charles took his first steps today. I was so proud of him. He took two steps then fell over. I talked to Janet today and we were discussing whether we wanted Charles to go to a normal school or not. We also wondered if we should start him when he was only three. We thought that was awful young. I didn’t know what to do.

November 16, 1992 I am not looking forward to the holiday considering what happened last year. I bought a new car today. Actually it was a van. So that Mike and I can go fishing more often. We are planning a trip after the holidays. I think that I might take Charles with me this time.

December 12, 1992 Christmas is coming up fast. Charles is starting to walk more. He sometimes pulls himself up on the furniture and walks around that way. He is starting to make sounds and he says mama and daddy now.

January 15, 1993 I am so glad that the holidays are over with now. Mike and I are going fishing and camping tomorrow. We are also going to take the boys. Marc just loves High School. Mike tells me that it took him a little time to get use to going to the high school but he is starting to get more in tune with it. Marc was tested the first couple of weeks that he was their but that’s not going on know. I am worried about putting Charles into school this August. What will the other parents think?

February 27, 1993 Charles still doesn’t talk but he crawls around a lot more. Pat and Becky’s baby is already walking and talking. Mike told me today that Marc didn’t walk till he was three. Sometimes it hard or me to see Charles develop so much slower.

March 10, 1993 Charles has been really sick lately. We had to put him in the hospital. I am so worried about him. His is so small. The doctor thinks that it is flue. He has a lot of fluid in his lungs. He lungs have never been really great since he was born. The Doctor says the outlook looks good.

April 24, 1993 Charles got better but he lost a lot of weight. He is starting to walk now. He still is not real steady on his feet. He babble a little but all he can say is ma and da. I wonder if he will every will talk. I read somewhere that some children with Down syndrome never talks.

June 1, 1993 Mike and I took the boys camping and fishing. Marc just loves Charles. He gets so excited when he see Charles. They kind of look alike. They both have the same oval slanty eyes. And they are kind of stocky. Mike is a fairly tall guy but his son doesn’t look like he is going to get big. Charles got so excited ever time that we caught a fish. He loved to see it flop around.

July 4, 1993 It’s Charles third birthday. All of are family came over to help us celebrate. I can’t believe that it has been three years. We are suppose to have Charles tested so that he can maybe start school in August. Mike was saying that we are going to probable have an IEP meeting. I think that IEP stands for Individual Education Plan.

August 24, 1993 Charles has gone through a battery of test. They said that his speech was delays. He scored 50 on his IQ test. They want to place him in a preschool that stresses language. We had an IEP meeting. It was kind of scary. I didn’t really understand all that was going on. Their was so many professional their. I felt really unprepared. I kind of just agreed to whatever they said. I really didn’t know what was going on. I don’t know what best for my son. I am not an expert on the subject. What am I supposed to contribute to the meeting.

September 12, 1993 Charles has been in school for a week now. He seems to enjoy it. He has 5 other classmates. His teacher is named Ms. Hartnack. The kids call her Patty. They also have a speech teacher that is their half the time. Her name is Ms. Melissa Barton. They are planning to teach Charles sign language. They were going to send home the sign so that we can also work on them. They are also planning to use a board with picture on it. So he can point to the picture. They tell me that this will help to develop his language. I hope it works.

November 18, 1993 The signs are working. Sometimes it gets frustrating because Charles doesn’t always wish to use the signs and he will throw himself on the floor and cry. I hate when he does that. We actually use the signs with him. Marc has even learn the signs to work with him. Charles will always use the signs with him. They get along so well. We are going over to Janet’s parent’s house or Thanksgiving dinner. Her father isn’t doing so well. He was diagnosed with cancer two months ago and has been going through chemotherapy. He is getting really weak.

December 21, 1993 Janet’s father died today. We went to his funeral. I left Charles with Mike and his family. I tried to explain to Charles about grandpa but his just couldn’t understand. He still thinks that we are going to see him for Christmas. I think that we will be going over to Janet’s family for Christmas again. Her mother isn’t doing to well.

January 15, 1994 I am glad that the holidays are over. Janet’s mother is still not doing really well. Janet wants her to move in with us. I don’t know about that. I like Janet’s mother enough but she treats Charles like a little baby. She still coos at him like he was a baby. She also talks to him in baby language. The teacher has stressed the importance of treating Charles like a three-year- old. We never talk to him in baby language.

February 10, 1994 We went over to Mike’s today to help celebrate Marc’s 18th birthday. He was so happy to turn 18. He said that he was an adult now. I asked Mike what Marc was going to do after school. Marc said that next year Marc was going to start training on how to get a job. They were thinking about having him get a job at Fry’s as a baggier.

March 4, 1994 Charles is doing really well in school. He likes it a lot. It looks like Janet’s mother will be moving in with us. I just wonder how I am going to get across to her to treat Charles like am age.

April 26, 1994 We went over to Mike’s today. Marc was telling me about how he is going to camp for children like him. Mike said that Marc really likes it. They have day camp for younger kids. Maybe I will send Charles.

May 5, 1994 Janet has been trying hard to potty train Charles. It is just not coming. The teachers at school have been working on it to. I can’t believe that school is almost over with. Charles has improved so much since the start of the year. He can now say about ten words. He is also a lot steadier on his feet. Though he is still not potty trained. We will work on that this summer.

June 8, 1994 Charles had to say good-bye to his class. He was so sad. It took us awhile to convince him that he wasn’t going to school for a while but that he could go to summer camp this year.

July 4, 1994 Today was Charles fourth Birthday. We had some of Charles friends from school over for some cake. It was so exhausting to have all those little kids around. Later we went out to see the fireworks. Charlie was so excited to see the fireworks. People kept staring at Charles when were out though. I don’t like that.

August 18, 1994 School starts up next week. Charles is so excited. He is going back to the same class. I am glad I like the teacher and his speech therapist. Janet’s mother is going to move in with up in November.

September 4, 1994 Tomorrow is Charles second IEP meeting. I just feel so overwhelmed when there are so many professionals. I asked Mike if they ever get easier. He said that they do and you need to learn to voice your concerns during that time. I hope that I don’t feel so intimidated this time. I also wished that they stopped using so many acronmunes. What is that anyway? Is that there own language and all?

November 20, 1994 Janet’s mother moved in last week right after thanksgiving. I am still not sure about this arrangement. All well, lets just try to get through the rest of the holiday season. Janet’s mother is going to spend Christmas with her son’s family. We are still working on Charles potty training.

December 25, 1994 Today was Christmas. It was so fun to watch Charles to open up his gifts. We got him a Nintendo Just like Mac. That is what Charley said. He loves to play Marc’s Nintendo He got so excited. His vocabulary is growing quiet a bit. He still doesn’t know his ABC’s even though we say them all the time with him.

January 30, 1995 Mike was so proud of Marc. He got a job at Fry’s. The only thing that concerns him is that Marc is too trusting and they are afraid if a stranger offers him a ride that he would take it. The teacher has been working on how to handle strangers but Marc doesn’t seem to be taking it seriously. That makes me think what am I going to do when Charles reaches that age.

February 21, 1995 I like Marc’s teacher. Mike was telling me that she found a solution to make sure that Marc didn’t take rides from strangers. The teacher would hide in the bush and have one of her friends drive by in a car and offer Marc a ride when he was walking home from work and then when he tried to get into the car she would jump out and give him a lecture. Marc doesn’t take rides from strangers anymore he is so afraid that his teacher is going to jump out.

March 4, 1995 Janet and I have been having arguments about her mother and how she treats Charles. I just don’t know what to do. Maybe I can get Charlie’s teacher to talk to her and get across how important it is to treat him like a regular kid.

May 8,1995 I finally was able to set up a conference with Janet’s mother and the teacher. I think that got across to her how important it is to treat Charles as normal as possible. I can’t believe that another year of school has gone by. The teacher says that we are going to have to have a transitional IEP. Since next year Charles is going to go to kindergarten.

June 10, 1995 We went to Disneyland. Charles had a lot of fun riding the teacups. Janet and I had so much fun watching Charles. We actually saw Pat and Becky with their child their. He was walking and talking so much. It made me realize how far behind Charles is. It has been a long time since we had seen them.

July 4, 1995 It is Charles fifth birthday. I was looking back and I can’t believe the way that I felt when Charles was born. I don’t feel that way anymore. I am so glad that he is a part of my life. I can’t image a time without him. Mike and I are going to take our boys fishing this weekend. It was what Charles wanted.

August 17, 1995 Charles started an all day kindergarten this year. It was a new school, teacher and room. It was a big adjustment for him. He is in a special classroom. It is an MI/MO classroom. Look at me I am starting to talk like those special Ed teachers. In his class there are students in kindergarten till 3rd grade. There is such an age difference. The teacher might integrate Charles into a regular classroom for opening. I am a little worried how the other students will treat him.

September 28, 1995 School seems to be going pretty well. We had a big celebration today because Charley is now party trained. Charles made a new friend in school his name was Jeff. Charley told me that Jeff looks like Mac and me. Jeff has Downs; he is in 1st grade. Charles also likes his other kindergarten class. The teacher in that class doesn’t seem to like Charles their I think. She seem uncomfortable ever time I talk to her about Charles.

November 16, 1995 Janet’s mother has turned way around. I saw her working with Charles on his homework. I know I wasn’t sure about the arrangement when it first happened but she has become a team player. We are having Thanksgiving at our house this year. I am so excited.

December 21, 1995 Charles is so energetic. The Christmas vacation seems so long to him. He can’t wait for Santa Claus to come. Yesterday he went over to a classmate’s birthday party from his Kindergarten classroom. Charles wanted to make a card for him. So I wrote out what he wanted to say and he traced the letters.

January 1, 1996 Charles tried to stay up to see the New Year. The poor guy feel asleep watching TV on the cough. He so much wanted to see the ball drop. He can’t wait to go back to school.

February 27, 1996 I celebrated my fifth birthday today. I can’t believe that I am fifty years old. They had a surprised party for me when Mike and I got back from camping. I was so surprised. Charles was so excited and he didn’t even know what the entire fuse was about. He asked me why my balloons were black and not colorful like his.

March 10, 1996 I can’t believe that Marc is now twenty. Mike is talking about placing Marc in a group home. He only has one more year of school. They think that they will wait till next year to make that decision. Marc wants to move out and we are not getting any older

April 24, 1996 Charles teacher wants him to continue in Kindergarten next year. She wanted to know what we thought since the IEP was coming up. I guess that would be good for him. He was an awful young Kindergartner it won’t hurt him to do it over. Charles is doing so much better in school. He can write his name and his vocabulary is growing. He still has a hard time pronouncing words. I guess that is a common problem among Downs’s children. I just want him does be integrated into a different classroom.

August 24, 1996 Charles is going back to school. We had a wonderful summer and Charles is now six years old. He doesn’t understand why he can’t be with his same class.

September 12, 1996 One of the kids in Charles class called him stupid and that he looked like a freak. I was so mad. I can’t believe that someone did that. Charles came home crying and asked why they did that?

January 15, 1997 The holidays have come and passed without many incidents. Marc is graduating this year. He told me that he was going to get his own place. That he was going to move out. He still has that job at Fry and is doing quiet well. He doesn’t ever take rides from strangers and he told Charles not to because you never know when your teacher will jump out from behind the bushes. I just laughed

February 27, 1997 Janet turned fifty today. I have a surprise party planed in a couple of days. I have been sending her cards from all over the United States and she can’t figure out whom they are from. I let Charles help and he just wants to burst out with our secret.

March 10, 1997 Another year is almost over and Charles now knows most of his letters in the Alphabet and he can count to ten. We have started working on flash cards with picture of everyday things and words underneath them.

April 24, 1997 It coming close to another IEP meeting. I think that I am actually getting the feeling of these things. I wish that we could get Charles another MI/MO teacher he has had her for two years and he will probably have her for another three I think that is just too long and she is running out of new ideas.

May 27, 1997 We went to Marc’s graduation today. Mike was so happy and proud. Marc was so excited that he got a diploma. He will probably move out this summer it looks like. They have looked at a couple of homes that will take him. I think that it is going to be very hard on Mike. I know that it would be hard on me.

June 1, 1997 Marc started a new job. He now is a stock boy at Fry. He is so happy. Charles is in day camp. He loves it there. He has made so many friends. I can’t believe that Charley is going to be seven years old soon.

July 4, 1997 Charley had his seventh birthday. We had a sleep over. I don’t think that I ever want to do that again. They are still up and it is 11:00. Maybe I will get to watch a movie so that they might fall asleep.

August 24, 1997 Charley started school again. He is in first grade this year. He is so excited. He actually really good in math. He can add and subtract almost up with his grade level so they have him go to math in his regular class. His reading is still very low and he still can’t write all his letters.

September 12, 1997 Marc moved into his new place today. He was so excited. I went over to help him Mike moves him in. I could tell that it was very hard on Mike but Marc was so excited. The group home was really nice. There were three other residences and a staff member was around at all times. It looked pretty nice.

April 5, 1998 I misplaced my diary again. I can’t believe that this school year is almost over with. Marc’s had a little time adjusting but he finally has adjusted to living away form home. He wants Charley to come and spend the night.

May 15, 1998 It’s that time of year again for Charley IEP. I am defiantly getting better at these IEP meeting. A new thing that came out in the Legislature was a revision of IDEA. I read the law but I was having a hard time understanding it. I will ask the teacher about it.

June 6, 1998 Charley went away to camp this year. He will be gone for two weeks. I am going to miss him. Once he gets back he is going to start summer school. So he is going to be busy this summer.

July 4, 1998 Charley is staying at Marc’s house for his birthday. He is nine years old today and that is what he wanted to do. They get along so well.

August 15, 1998 It was time for school to start. Charley is starting to realize that he his not like everyone else. He wanted to know why all of his other friends didn’t have as many teachers as his did. He also wanted to stay all day in his second grade class. I told him that he was a lucky boy to have so many teachers.

September 3, 1998 Charley loves his second grade teacher. She tries to include Charley as much as she can. His reading and writing are still on a preschool level. He works hard on it. He practices copying the words that his second grade class is working on. We still do flash cards every night with his vocabulary.

November 5, 1998 Mike is retired today. I will miss seeing him around the office. He said that he would still come by and we can have lunch. Mike has helped me so much over the years. If it wasn’t for Charles Mike and I would never have become friends. I am so thankful that Mike came into my life and we will still go camping from time to time.

February 27, 1999 The holidays have come and passed without many incidents. Mike and I are supposed to go fishing with our son’s. Mike asked us to look after Marc if anything happen to them. I said I would. It makes me wonder who will take care of Charles if anything happens to Jane or me. Charley caught the first fish he was so excited as the fish flopped around on the floor of the boat.

March 10, 1999 Charley came home all scared today. He said is the world going to end when the year 2000 comes around. I guess some kids were telling him that. I can’t believe the he that is going into that. I told don’t worry about such things.

April 24, 1999 Charley joined a baseball league this year. I remember when I though that Charles would never talk or walk or be able to play baseball. He is so excited. I have been practicing with him overnight.

May 6, 1999 Another school year is coming to a close. Charlie’s softball team is doing pretty well. They haven’t won a game but they are having fun. Janet’s mother fell down the stairs and broke her hip so life as been a little chaotic for the past couple of days.

June 12, 1999 Summer has come once again to our home. Charley is getting ready for summer camp he is excited because Mac is going to be one of the counselors their so they will be able to spend two weeks together. That will also give a chance for me and Janet to be alone. We decide to take a cruise during that same time. I can hardly wait.

July 4, 1999 It was Charles birthday and once again I arranged to have fireworks just for Charlie’s birthday. He had some friend over earlier and we had some cake. He is watching movies right now. I can’t believe that is has been nine years since Charles has come into my life.

August 24, 1999 Charles is back at school. He is now in third grade. This is his last year with his resource teacher Ms. Luna. He has had her for five years now. It is going to be hard for him to have a different teacher. They have gotten quiet close. She is almost like a member of the family. I think that it will good for him to have a change.

September 12, 1999 Charles third grade teacher is not as good as his second grade teacher about including Charles. This has made Charles upset. I guess now his third grade teacher doesn’t think Charles should be in her class. She doesn’t think that he is benefiting. The law says that Charles has the right to be in the least restrictive environment as possible.

November 1, 1999 Thanksgiving is coming around one again. I think that we are going to spend it with Mike’s family for a change. I thought that that would be fun. Janet’s mother is going back to see her sister in New York.

December 16, 1999 Christmas is coming around once again and Charles wants to wait up for Santa Claus. He is also getting worried because it’s about to turn the year two thousand. He thinks that we need to stoke up on food and water. I told him that we would be OK. I wish that everybody would stop scarring the kids so much.

January 21, 2000 Big surprise nothing happened when the year two thousand came. Charles is back in school and we are still struggling with his third grade teacher. I just don’t know what to do. Maybe we will just try to survive the rest of the year. Charles is starting to feel how his teacher feels about him because he asked me why doesn’t Ms. Kong like me? I just didn’t know what to say to him.

February 15, 2000 Mike and I took the boys camping last weekend. They had so much fun. Marc still acts the same way when I first meat him. He is still a stock boy at Fry but they love him there. Charles wants to work at Fry's too. I want something better for him though.

March 4, 2000 Charles just doesn’t seem to be improving in his writing or reading. He still just read and writes on a kindergarten level. He progress in that area is just so slow.

May 5, 2000 It is time for Charles IEP meeting again. The year is almost over. Next year for Charles that will mean a great deal of change. He will have another resource teacher. Charles has come a lot farther then I ever thought that he would when he was first born. The things that I felt back when he was born are so foreign to me now. I am so glad that Charles was born and is a part of my life. I don’t know what the future will bring but I know that I will be able to deal with it.

 

E-mail J'Anne Affeld at Janne.Affeld@nau.edu

Course developed by J'Anne Affeld

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