So - I've been SO bad at updating this blog lately!
Chris and I both have new positions at Union Pacific and Aubrey's therapy schedule is back in full swing after summer - so it's been extra crazy for us!
But - I am a horrible mom for not bragging right away on our blog about Aubrey's first steps...that's right I said steps (plural). It was on Wed August 26th at about 8:00 pm!
Here's my description that I wrote that night of the event:
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So Aubrey just made a huge break through tonight and I had to share! She was "playing" aka chewing on a big box of diapers we just bought from Costco. As I was opening the box up to get the diapers out - she got really excited.
Of course - she loves chewing on plastic WAY more than mere cardboard! Anyway - I turned the moment into practicing one of our PT drills. I placed her up with her back against the wall and had the plastic bag of diapers just out of reach to entice her step forward.....and she did! 5 real steps! I almost couldn't believe it so we did it again -and she took another 5 steps on her own. I gave her a breather as we hugged her, clapped for her, and cried. She got extra excited and seemed to "get" that she just did something special - which made me cry more :)
We tried one more time - and she actually took 9 consecutive steps!! It was on the 4th attempt it dawned on us to try and get it on video -but by then either fatigue set in or the allure of the diapers had faded - so no video yet - but I hope this isn't an isolated event and we can get some in the next couple of days!!! Video or Not - It was AWESOME especially since both Chris and I were there to see it!
I wouldn't classify her as a "walker" yet by any means but for the first time during this journey - I KNOW and believe that Aubrey will walk functionally one day (maybe even sooner than later!) I couldn't say that last year, last month or even last week. She's proven once again that she can do more than we expect!!
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As a follow up - I'm happy to report that Aubrey took another 9 steps on Friday Sept 11th at daycare and has taken 1-2 steps here and there over the last 2 weeks.
Her confidence and balance is getting better and better!
Wednesday, September 16, 2009
Thursday, August 27, 2009
Least Dangerous Assuption
Here is an article that was mentioned at the Angelman Syndrome Conference - I have SO much updating to do since we've been back - so I'll get to that at a later time - but for now - I did want to share this very powerful article - ENJOY!
The Least Dangerous Assumption
A Challenge to Create a New Paradigmby
Cheryl Jorgensen, Ph.D.
Imagine you are about to meet for the first time a young woman who will be coming to your high school this year. Before you do, the following was shared with you about her.Kim is a 16-year-old student who has a label of severe mental retardation. The usual battery of intelligence tests and adaptive behavioral evaluations have assigned her an IQ score of 40 and a developmental age of 36 months. She has seizures and sensory impairments. Her motor movements are jerky and uncoordinated, making it difficult for her to get around in small areas, write legibly, or use a computer. She is sensitive to certain environmental stimuli such as bright lights, loud noises, and rough textures in her clothing. She has no conventional way of communicating. She uses facial expressions and random vocalizations to express emotions. When she is frustrated by a task or situation, she runs away or sometimes hits herself or others. She does not appear to be able to read.
How does this information affect her parents’ and educators’ decisions about Kim’s educational program and adult life? Should you assume that these test results, labels, and observations are accurate representations of her current abilities and future learning potential? Do you advocate for her educational program to reflect content learning from the general education curriculum or is it based on teaching functional life skills? Should she be educated alongside students with significant disabilities only or included in a general education class?
In order to answer these questions, you first need to understand the prevailing paradigm, or belief, that governs the way that most people think about intelligence and intelligence testing, the label of mental retardation, and the vision that we have for students with this label. In this article, I want to propose and add my voice to the work of other parents and educators who believe that only by creating a new paradigm, or shared belief, of high expectations based on the principle of the least dangerous assumption can anyone, parent or professional, make decisions about students’ educational programs that will lead to a quality life in school and throughout their adult lives.
In 1984, Anne Donnellan, a respected researcher in special education, wrote that “the criterion of least dangerous assumption holds that in the absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” Furthermore, she concluded “we should assume that poor performance is due to instructional inadequacy rather than to student deficits.” In other words, if a student does not do well, the quality of the instruction should be questioned before the student’s ability to learn. Thus, for Donnellan, the least-dangerous assumption when working with students with significant disabilities is to assume that they are competent and able to learn, because to do otherwise would result in harm such as fewer educational opportunities, inferior literacy instruction, a segregated education, and fewer choices as an adult.
The Prevailing Paradigm
Thomas Kuhn (1962), a scientist-philosopher, defined paradigms as shared world views. These shared views are so strong and institutionalized that only a sudden and dramatic break from these conventional perspectives can bring on a positive revolution in thinking. What is the prevailing paradigm about disability and competence?
It is defined by four ideas:
1. Intelligence is something that can be reliably measured.
2. Mental retardation is defined as low levels of intelligence.
3. Students who experience mental retardation can’t learn much general education content.
4. Therefore, the benefits of attending general education classes are limited or do not exist.
When we aren’t sure that students know, understand, can learn, or have something to say, we presume that they don’t, can’t, and probably never will.
How Does the Prevailing Paradigm Impact Our Beliefs and Actions?
The influence of this paradigm is clear in both our beliefs about students’ abilities and in the decisions that we make about their educational programs.When people do not assume that students with disabilities are competent and able to learn general education curriculum, educational programs often have the following characteristics:
· Students are not included in general education classrooms. If they are, they participate in functional portions of instructional routines, but not in the discussion of ideas or content knowledge. Usually, students are given different materials and resources than those used by the rest of the class.
· People talk with students as if they are talking with a much younger child. They use words geared to perceived developmental levels or IQ scores as measured by traditional assessments.· Students are not supported to engage in social activities with same-age peers. Those activities are considered inappropriate or too advanced.
· Planning for students’ futures does not include the choice of a postsecondary education or their interests are not considered over their abilities. Career options are geared to lower-skilled jobs or sheltered workshops rather than to jobs in integrated workplaces that require higher-order thinking or literacy skills.
A Proposition
As Kuhn said, it is only when we question a prevailing paradigm that we can be open to changing not only our beliefs, but our actions. I propose that believing in the paradigm of mental retardation leads to low expectations for students with significant disabilities. These low expectations result in segregated educational programs, or programs that do not focus on literacy or content learning, and narrow visions for the future. Thus, changing our paradigm about intelligence and mental retardation is central to promoting students’ learning, inclusion, achievement, and quality of life now and in the future.
Flaws in the Construct of Mental Retardation
An important step in challenging the prevailing paradigm is understanding the flaws in the idea and assessment of both intelligence and mental retardation. Stephen Jay Gould (1981), an evolutionary biologist, criticized some of the earliest attempts at testing intelligence as being fraught with • • • bad science, politics, and racism that resulted in the mistaken conclusion that people of northern European descent were more intelligent than non-Caucasians. Howard Gardner (1984), an educational researcher, has criticized intelligence testing because the kinds of intelligence measured by traditional I.Q. tests (verbal and language skills and math and problem-solving skills) represent just one part of a complicated, multi-dimensional framework. Based on this logic, let’s agree that measuring intelligence is difficult, if not impossible. That means measuring the lack of intelligence is also difficult, if not impossible.
If we believe these things, then we ought to view the label of mental retardation with great skepticism.When we think about people with significant or multiple disabilities, in particular, this skepticism is justified. These are precisely the people who have difficulty communicating, whose bodies move erratically, and who have not been taught the language or skills intelligence and adaptive behavior tests measure.
How would you score on an intelligence test if you could not talk, write, or type accurately? If you were not exposed to or taught receptive or expressive language skills? How well would you do taking the test if the sensory environment of the testing situation was stressful or noisy?Another reason for questioning the prevailing beliefs about intelligence and mental retardation is a body of emerging research that shows that with high expectations, good instruction, and the support of assistive and communication technology, a growing number of people labeled mentally retarded acquire literacy skills and demonstrate intelligence beyond what would have been predicted by their test results (Biklen & Cardinal, 1997; Broderick & Casa-Hendrickson, 2001; Erickson, Koppenhaver, & Yoder, 2002; Erickson, Koppenhaver, Yoder, & Nance, 1997; Koppenhaver et al, 2001; Ryndak, Morrison, & Sommerstein, 1999).
A New Paradigm
If we are seeing more and more examples of people whose experience does not align with the prevailing paradigm—who show, when supported, they have learned more than we assumed they were able to learn, then a new paradigm must be developed that accounts for this. This paradigm would be characterized by the following ideas:
1. All people have different talents and skills.
2. Intelligence is not a one- dimensional construct, nor can it (or its absence) be measured accurately and reliably enough to base students’ educational programs and future goals on test results.
Children learn best when they feel valued, when people hold high expectations for them, and when they are taught and supported well.Let’s return to the story of Kim who was described at the beginning of this article.
If we “walk through” two scenarios that represent very different decisions about her educational program and use Donnellan’s principle of the least dangerous assumption to consider the potential impact of each decision, it might help us decide which path would be in Kim’s best interests now and in the future.
Influence of the New Paradigm on Our Beliefs and Actions
If schools adopt the new paradigm of least-dangerous assumption and the presumption of competence, the following would be evident:
· “Person-first” language is used so that people say “students with autism,” not “autistic students.”
· Language classifying students based on their functioning or developmental level is not used; rather, descriptions of students focus on their abilities and strengths.
· Annual goals on IEPs reflect content standards from the general education curriculum and the functional skills necessary for students to fully participate in the mainstream of school and community life. For example, IEPs would contain priority goals in all of the general education subjects and meaningful functional goals such as learning to use email, asking a friend out on a date, providing guidance to a personal care assistant, and putting on make-up or shaving.
•· Students are seen as capable of learning; educators do not predict that certain students will never acquire certain knowledge or skills.
•· People speak directly to students rather than speaking to students through a buffer supplied by paraprofessionals or other people who are considered to be assisting the students.
· People use age-appropriate vocabulary, topics, and inflection when talking to students. People do not discus students lack of skills or challenges in front of them unless they are a part of the conversation.
· Parents receive feedback regarding student success rather than highlighting student failures and disabilities.
· Staff members respect students’ privacy by discussing the students’ personal care, medical needs, and other sensitive issues out of earshot from others, and only with those people who genuinely need the information.
Five Reasons Why Our Least Dangerous Assumption Should Be to Presume Competence
There are at least five reasons why I believe our least dangerous assumption is to presume competence.
1. Human intelligence is a multi-faceted construct rather than a uni-dimensional characteristic and measuring it with a test is invalid and leads to mistaken conclusions about a person’s capacity to learn.
2. Assessments of students’ I.Q. are seriously flawed when they have difficulty communicating and movement challenges.
3. Research shows that a growing number of children and adults labeled retarded show they are more capable when they have a means to communicate and are provided with high quality instruction.
4. To presume incompetence could result in harm to our students if we are wrong.
5. Even if we are wrong about students’ capacities to learn general education curriculum content, the consequences to the student of that incorrect presumption are not as dangerous as the alternative.
Deciding on Your Least Dangerous Assumption
Those of us involved in the educational lives of students– parents, teachers, psychologists, speech-language pathologists, policy makers, and researchers – must decide what our least dangerous assumption will be and whether we can live with the possibility of being wrong. If we are not sure, we might ask ourselves:
· How would I want to be treated if someday I was unable to communicate or demonstrate my competence?
· How would I want others to treat my child if he or she were in the same situation?
· What do adults with disabilities tell us about their educational experiences and how they want to be treated?
· What does research tell us?
· What does history tell us?
Parents and educators of students with disabilities care about and want to do the very best for those students. Using least dangerous assumption as a guide is a powerful tool for keeping alive a vision of a valuable life and quality communities.
Scenario One:
Assumptions
We assume that Kim is not “smart” – that she does, in fact, have mental retardation, defined as significantly sub-average intelligence and ability to learn. How might she be treated?
Educational Setting
First, we might not try to teach her to read or if we did, it would be functional sight words. Second, we would speak to her in language more appropriate to a younger child. Third, Kim would probably spend her educational career being taught functional skills such as dressing, eating, shopping, cooking, and cleaning. In most states she would be educated in a separate classroom alongside other students who also have significant disabilities. If she did join the rest of the student body, it might be during lunch or perhaps a class such as music or art.
Communication Support
The communication vocabulary and supports that we would make available to her would correspond to our assessment of her sub-average intelligence and relate to the functional skills we were teaching. The messages might include “hi, bye, more, bathroom, hungry, break, I feel _____, yes, and no,” instead of age-appropriate social vocabulary and messages that would enable her to communicate about the general education curriculum.
Friendships and Dreams
We would not encourage her to participate in the typical social life of her same age classmates because we would assume that her disabilities were too significant for her to enjoy the same activities. Interactions between her and students without disabilities would be limited to their volunteering to be her peer buddy or helper. As she approached the end of her school career, the possibility of her attending college would not even be considered. Instead, we would plan for her to move into a group home, attend a day habilitation program or work in a sheltered environment, and pursue specialized leisure and recreational opportunities with other adults who have similar disabilities. We would not expect her to have opinions about world events, her future, love, or about anything else considered to be above her cognitive level.
Scenario Two:
Assumptions
We are not sure about what she knows or might be able to learn in the future…we don’t have conclusive data to guide our decision-making. But this time, we operate from a different set of assumptions. We treat her as if she is smart, because we distrust the validity of her test results in light of her communication and movement difficulties.
Educational Setting
First, we use a variety of methods to teach her to read. Second, we talk to her the same way we do other 16 year old students who have no disabilities. Third, we enroll her in general academic classes where we implement her reading program and support her with adapted materials and instructional supports. We take advantage of natural opportunities to teach her the functional skills that are essential for membership, full participation, and learning.
Communication Support
We talk with her about current events. We make sure her communication system includes words and concepts that are appropriate for someone who thinks about current events, love, relationships, and her future.
Friendships and Dreams
We encourage her to participate in activities that her classmates are involved in and provide communication tools and support for her to be successful. We encourage her to make friendships and assume she is capable of, and interested in, having friends. As she approaches the end of her school career, we prepare for a variety of options including postsecondary education as a graduation option. In addition, we plan for her to move into an apartment, own her own home, work at a real job, or travel.
Which do you think is The Least Dangerous Assumption?
It is now several years in the future. A remarkable discovery has made it possible to determine without question how smart someone is using a simple brain scan. Here are the results.
Scenario One:
The brain scan results show, surprisingly, that Kim has an IQ of 100. She does not have an intellectual disability. What are the consequences of our original assumption of a low IQ—of our being wrong? Has any harm been done?Most people say we lost an opportunity to teach her things she could have learned. We did not include her in the mainstream of general education as much as we could have and she did not develop a wide network of social connections or friendships. She missed out on the regular high school experience. It is possible we negatively influenced her self-esteem by treating her as if she were not smart. We narrowed the possibilities for her future career or post secondary education. And certainly, we wasted a lot of money pursuing the wrong educational program.
Scenario Two:
The brain scan results show that Kim has an IQ of 40. She does have an intellectual disability. What are the consequences of our original assumption of her intelligence being wrong? Has any harm been done?Most people say nothing has been lost. Even though Kim may not have learned much of the general education curriculum, her educational program offered her opportunities to develop life-long interests, to make friends with students with and without disabilities, to be part of the social life of the school, and to truly be part of the community after graduation. Because we took advantage of natural opportunities to teach her functional skills within the natural context of the day, she probably learned and generalized them better than if they had been taught as a discrete skill in an isolated or segregated setting.
NOTES:
1. Cheryl cautions readers to question traditional definitions whenever the words “mental retardation” or “intelligence” are used.
Cheryl M. Jorgensen, Ph.D., is an Assistant Research Professor with The Institute on Disability at the University of New Hampshire, A Center of Excellence in Disabilities; Project Director for “Beyond Access: A Model that Promotes Learning of General Education Curriculum Content for Students with Significant Disabilities;” and teaches students to become Inclusion Facilitators. Dr. Jorgensen is a co-author of Including Students with Severe Disabilities in Schools¸ and author of Restructuring High Schools for All Students: Taking Inclusion to the Next Level and The Inclusion Facilitator’s Guide (Available Fall, 2005 from Brookes Publishing).
Acknowledgements: The preparation of this article was supported in part by a grant to the Institute on Disability/UCED at the University of New Hampshire from the U.S. Department of Education, Office of Special Education Programs (#H324M020067). The opinions expressed herein do not necessarily represent those of the U.S. Department of Education or the University of New Hampshire.ReferencesAmerican Association on Mental Retardation (2002). Definition, classification, and systems of supports. 10th Edition. Washington, DC: American Association on Mental Retardation.Biklen, D., & Cardinal, D. (1997). Contested words, contested science. New York: Teachers College Press.Broderick, A., & Kasa-Hendrickson, C. (2001). Say just one word at a time: The emergence of reliable speech in a student labeled with autism. Journal of the Association for Persons with Severe Handicaps, 26, 13-24.Donnellan, A. (1984). The criterion of the least dangerous assumption. Behavioral Disorders, 9, 141-150.Donnellan, A. (1999). Absence of evidence: Myths about autism and mental retardation. TASH Newsletter, May 2000.Erickson, K., Koppenhaver, D., & Yoder, D. (2002). Waves of words: Augmented communicators read and write. Monterey, CA: Augmentative Communication.Erickson, K., Koppenhaver, D., Yoder, D., & Nance, J. (1997). Integrated communication and literacy instruction for a child with multiple disabilities. Focus on Autism and Other Developmental Disabilities, 12(3), 142-150.Gardner, H. (1983). Frames of mind: The theory of multiple intelligences. New York: Basic Books.Gould, S. (1981). The mismeasure of man. New York: W.W. Norton and Co.Koppenhaver, D., Erickson, K., Harris, B., McLellan, J., Skotko, B., & Newton, R. (2001). Storybook- based communication intervention for girls with Rett Syndrome and their mothers. Disability and Rehabilitation, 23, 149-159.Kuhn, T. (1962). The structure of scientific revolutions. Chicago: University of Chicago Press.Ryndak, D., Morrison, A., & Sommerstein, L. (1999). Literacy before and after inclusion in general education settings: A case study. Journal of the Association for Persons with Severe Handicaps, 24(1), 5-22.
Source:Disability Solutions: A publication of Creating Solutions, A Resource for Families & Others Interested in Down Syndrome & Developmental Disabilities, Fall 2005, Volume 6, Issue 3
The Least Dangerous Assumption
A Challenge to Create a New Paradigmby
Cheryl Jorgensen, Ph.D.
Imagine you are about to meet for the first time a young woman who will be coming to your high school this year. Before you do, the following was shared with you about her.Kim is a 16-year-old student who has a label of severe mental retardation. The usual battery of intelligence tests and adaptive behavioral evaluations have assigned her an IQ score of 40 and a developmental age of 36 months. She has seizures and sensory impairments. Her motor movements are jerky and uncoordinated, making it difficult for her to get around in small areas, write legibly, or use a computer. She is sensitive to certain environmental stimuli such as bright lights, loud noises, and rough textures in her clothing. She has no conventional way of communicating. She uses facial expressions and random vocalizations to express emotions. When she is frustrated by a task or situation, she runs away or sometimes hits herself or others. She does not appear to be able to read.
How does this information affect her parents’ and educators’ decisions about Kim’s educational program and adult life? Should you assume that these test results, labels, and observations are accurate representations of her current abilities and future learning potential? Do you advocate for her educational program to reflect content learning from the general education curriculum or is it based on teaching functional life skills? Should she be educated alongside students with significant disabilities only or included in a general education class?
In order to answer these questions, you first need to understand the prevailing paradigm, or belief, that governs the way that most people think about intelligence and intelligence testing, the label of mental retardation, and the vision that we have for students with this label. In this article, I want to propose and add my voice to the work of other parents and educators who believe that only by creating a new paradigm, or shared belief, of high expectations based on the principle of the least dangerous assumption can anyone, parent or professional, make decisions about students’ educational programs that will lead to a quality life in school and throughout their adult lives.
In 1984, Anne Donnellan, a respected researcher in special education, wrote that “the criterion of least dangerous assumption holds that in the absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” Furthermore, she concluded “we should assume that poor performance is due to instructional inadequacy rather than to student deficits.” In other words, if a student does not do well, the quality of the instruction should be questioned before the student’s ability to learn. Thus, for Donnellan, the least-dangerous assumption when working with students with significant disabilities is to assume that they are competent and able to learn, because to do otherwise would result in harm such as fewer educational opportunities, inferior literacy instruction, a segregated education, and fewer choices as an adult.
The Prevailing Paradigm
Thomas Kuhn (1962), a scientist-philosopher, defined paradigms as shared world views. These shared views are so strong and institutionalized that only a sudden and dramatic break from these conventional perspectives can bring on a positive revolution in thinking. What is the prevailing paradigm about disability and competence?
It is defined by four ideas:
1. Intelligence is something that can be reliably measured.
2. Mental retardation is defined as low levels of intelligence.
3. Students who experience mental retardation can’t learn much general education content.
4. Therefore, the benefits of attending general education classes are limited or do not exist.
When we aren’t sure that students know, understand, can learn, or have something to say, we presume that they don’t, can’t, and probably never will.
How Does the Prevailing Paradigm Impact Our Beliefs and Actions?
The influence of this paradigm is clear in both our beliefs about students’ abilities and in the decisions that we make about their educational programs.When people do not assume that students with disabilities are competent and able to learn general education curriculum, educational programs often have the following characteristics:
· Students are not included in general education classrooms. If they are, they participate in functional portions of instructional routines, but not in the discussion of ideas or content knowledge. Usually, students are given different materials and resources than those used by the rest of the class.
· People talk with students as if they are talking with a much younger child. They use words geared to perceived developmental levels or IQ scores as measured by traditional assessments.· Students are not supported to engage in social activities with same-age peers. Those activities are considered inappropriate or too advanced.
· Planning for students’ futures does not include the choice of a postsecondary education or their interests are not considered over their abilities. Career options are geared to lower-skilled jobs or sheltered workshops rather than to jobs in integrated workplaces that require higher-order thinking or literacy skills.
A Proposition
As Kuhn said, it is only when we question a prevailing paradigm that we can be open to changing not only our beliefs, but our actions. I propose that believing in the paradigm of mental retardation leads to low expectations for students with significant disabilities. These low expectations result in segregated educational programs, or programs that do not focus on literacy or content learning, and narrow visions for the future. Thus, changing our paradigm about intelligence and mental retardation is central to promoting students’ learning, inclusion, achievement, and quality of life now and in the future.
Flaws in the Construct of Mental Retardation
An important step in challenging the prevailing paradigm is understanding the flaws in the idea and assessment of both intelligence and mental retardation. Stephen Jay Gould (1981), an evolutionary biologist, criticized some of the earliest attempts at testing intelligence as being fraught with • • • bad science, politics, and racism that resulted in the mistaken conclusion that people of northern European descent were more intelligent than non-Caucasians. Howard Gardner (1984), an educational researcher, has criticized intelligence testing because the kinds of intelligence measured by traditional I.Q. tests (verbal and language skills and math and problem-solving skills) represent just one part of a complicated, multi-dimensional framework. Based on this logic, let’s agree that measuring intelligence is difficult, if not impossible. That means measuring the lack of intelligence is also difficult, if not impossible.
If we believe these things, then we ought to view the label of mental retardation with great skepticism.When we think about people with significant or multiple disabilities, in particular, this skepticism is justified. These are precisely the people who have difficulty communicating, whose bodies move erratically, and who have not been taught the language or skills intelligence and adaptive behavior tests measure.
How would you score on an intelligence test if you could not talk, write, or type accurately? If you were not exposed to or taught receptive or expressive language skills? How well would you do taking the test if the sensory environment of the testing situation was stressful or noisy?Another reason for questioning the prevailing beliefs about intelligence and mental retardation is a body of emerging research that shows that with high expectations, good instruction, and the support of assistive and communication technology, a growing number of people labeled mentally retarded acquire literacy skills and demonstrate intelligence beyond what would have been predicted by their test results (Biklen & Cardinal, 1997; Broderick & Casa-Hendrickson, 2001; Erickson, Koppenhaver, & Yoder, 2002; Erickson, Koppenhaver, Yoder, & Nance, 1997; Koppenhaver et al, 2001; Ryndak, Morrison, & Sommerstein, 1999).
A New Paradigm
If we are seeing more and more examples of people whose experience does not align with the prevailing paradigm—who show, when supported, they have learned more than we assumed they were able to learn, then a new paradigm must be developed that accounts for this. This paradigm would be characterized by the following ideas:
1. All people have different talents and skills.
2. Intelligence is not a one- dimensional construct, nor can it (or its absence) be measured accurately and reliably enough to base students’ educational programs and future goals on test results.
Children learn best when they feel valued, when people hold high expectations for them, and when they are taught and supported well.Let’s return to the story of Kim who was described at the beginning of this article.
If we “walk through” two scenarios that represent very different decisions about her educational program and use Donnellan’s principle of the least dangerous assumption to consider the potential impact of each decision, it might help us decide which path would be in Kim’s best interests now and in the future.
Influence of the New Paradigm on Our Beliefs and Actions
If schools adopt the new paradigm of least-dangerous assumption and the presumption of competence, the following would be evident:
· “Person-first” language is used so that people say “students with autism,” not “autistic students.”
· Language classifying students based on their functioning or developmental level is not used; rather, descriptions of students focus on their abilities and strengths.
· Annual goals on IEPs reflect content standards from the general education curriculum and the functional skills necessary for students to fully participate in the mainstream of school and community life. For example, IEPs would contain priority goals in all of the general education subjects and meaningful functional goals such as learning to use email, asking a friend out on a date, providing guidance to a personal care assistant, and putting on make-up or shaving.
•· Students are seen as capable of learning; educators do not predict that certain students will never acquire certain knowledge or skills.
•· People speak directly to students rather than speaking to students through a buffer supplied by paraprofessionals or other people who are considered to be assisting the students.
· People use age-appropriate vocabulary, topics, and inflection when talking to students. People do not discus students lack of skills or challenges in front of them unless they are a part of the conversation.
· Parents receive feedback regarding student success rather than highlighting student failures and disabilities.
· Staff members respect students’ privacy by discussing the students’ personal care, medical needs, and other sensitive issues out of earshot from others, and only with those people who genuinely need the information.
Five Reasons Why Our Least Dangerous Assumption Should Be to Presume Competence
There are at least five reasons why I believe our least dangerous assumption is to presume competence.
1. Human intelligence is a multi-faceted construct rather than a uni-dimensional characteristic and measuring it with a test is invalid and leads to mistaken conclusions about a person’s capacity to learn.
2. Assessments of students’ I.Q. are seriously flawed when they have difficulty communicating and movement challenges.
3. Research shows that a growing number of children and adults labeled retarded show they are more capable when they have a means to communicate and are provided with high quality instruction.
4. To presume incompetence could result in harm to our students if we are wrong.
5. Even if we are wrong about students’ capacities to learn general education curriculum content, the consequences to the student of that incorrect presumption are not as dangerous as the alternative.
Deciding on Your Least Dangerous Assumption
Those of us involved in the educational lives of students– parents, teachers, psychologists, speech-language pathologists, policy makers, and researchers – must decide what our least dangerous assumption will be and whether we can live with the possibility of being wrong. If we are not sure, we might ask ourselves:
· How would I want to be treated if someday I was unable to communicate or demonstrate my competence?
· How would I want others to treat my child if he or she were in the same situation?
· What do adults with disabilities tell us about their educational experiences and how they want to be treated?
· What does research tell us?
· What does history tell us?
Parents and educators of students with disabilities care about and want to do the very best for those students. Using least dangerous assumption as a guide is a powerful tool for keeping alive a vision of a valuable life and quality communities.
Scenario One:
Assumptions
We assume that Kim is not “smart” – that she does, in fact, have mental retardation, defined as significantly sub-average intelligence and ability to learn. How might she be treated?
Educational Setting
First, we might not try to teach her to read or if we did, it would be functional sight words. Second, we would speak to her in language more appropriate to a younger child. Third, Kim would probably spend her educational career being taught functional skills such as dressing, eating, shopping, cooking, and cleaning. In most states she would be educated in a separate classroom alongside other students who also have significant disabilities. If she did join the rest of the student body, it might be during lunch or perhaps a class such as music or art.
Communication Support
The communication vocabulary and supports that we would make available to her would correspond to our assessment of her sub-average intelligence and relate to the functional skills we were teaching. The messages might include “hi, bye, more, bathroom, hungry, break, I feel _____, yes, and no,” instead of age-appropriate social vocabulary and messages that would enable her to communicate about the general education curriculum.
Friendships and Dreams
We would not encourage her to participate in the typical social life of her same age classmates because we would assume that her disabilities were too significant for her to enjoy the same activities. Interactions between her and students without disabilities would be limited to their volunteering to be her peer buddy or helper. As she approached the end of her school career, the possibility of her attending college would not even be considered. Instead, we would plan for her to move into a group home, attend a day habilitation program or work in a sheltered environment, and pursue specialized leisure and recreational opportunities with other adults who have similar disabilities. We would not expect her to have opinions about world events, her future, love, or about anything else considered to be above her cognitive level.
Scenario Two:
Assumptions
We are not sure about what she knows or might be able to learn in the future…we don’t have conclusive data to guide our decision-making. But this time, we operate from a different set of assumptions. We treat her as if she is smart, because we distrust the validity of her test results in light of her communication and movement difficulties.
Educational Setting
First, we use a variety of methods to teach her to read. Second, we talk to her the same way we do other 16 year old students who have no disabilities. Third, we enroll her in general academic classes where we implement her reading program and support her with adapted materials and instructional supports. We take advantage of natural opportunities to teach her the functional skills that are essential for membership, full participation, and learning.
Communication Support
We talk with her about current events. We make sure her communication system includes words and concepts that are appropriate for someone who thinks about current events, love, relationships, and her future.
Friendships and Dreams
We encourage her to participate in activities that her classmates are involved in and provide communication tools and support for her to be successful. We encourage her to make friendships and assume she is capable of, and interested in, having friends. As she approaches the end of her school career, we prepare for a variety of options including postsecondary education as a graduation option. In addition, we plan for her to move into an apartment, own her own home, work at a real job, or travel.
Which do you think is The Least Dangerous Assumption?
It is now several years in the future. A remarkable discovery has made it possible to determine without question how smart someone is using a simple brain scan. Here are the results.
Scenario One:
The brain scan results show, surprisingly, that Kim has an IQ of 100. She does not have an intellectual disability. What are the consequences of our original assumption of a low IQ—of our being wrong? Has any harm been done?Most people say we lost an opportunity to teach her things she could have learned. We did not include her in the mainstream of general education as much as we could have and she did not develop a wide network of social connections or friendships. She missed out on the regular high school experience. It is possible we negatively influenced her self-esteem by treating her as if she were not smart. We narrowed the possibilities for her future career or post secondary education. And certainly, we wasted a lot of money pursuing the wrong educational program.
Scenario Two:
The brain scan results show that Kim has an IQ of 40. She does have an intellectual disability. What are the consequences of our original assumption of her intelligence being wrong? Has any harm been done?Most people say nothing has been lost. Even though Kim may not have learned much of the general education curriculum, her educational program offered her opportunities to develop life-long interests, to make friends with students with and without disabilities, to be part of the social life of the school, and to truly be part of the community after graduation. Because we took advantage of natural opportunities to teach her functional skills within the natural context of the day, she probably learned and generalized them better than if they had been taught as a discrete skill in an isolated or segregated setting.
NOTES:
1. Cheryl cautions readers to question traditional definitions whenever the words “mental retardation” or “intelligence” are used.
Cheryl M. Jorgensen, Ph.D., is an Assistant Research Professor with The Institute on Disability at the University of New Hampshire, A Center of Excellence in Disabilities; Project Director for “Beyond Access: A Model that Promotes Learning of General Education Curriculum Content for Students with Significant Disabilities;” and teaches students to become Inclusion Facilitators. Dr. Jorgensen is a co-author of Including Students with Severe Disabilities in Schools¸ and author of Restructuring High Schools for All Students: Taking Inclusion to the Next Level and The Inclusion Facilitator’s Guide (Available Fall, 2005 from Brookes Publishing).
Acknowledgements: The preparation of this article was supported in part by a grant to the Institute on Disability/UCED at the University of New Hampshire from the U.S. Department of Education, Office of Special Education Programs (#H324M020067). The opinions expressed herein do not necessarily represent those of the U.S. Department of Education or the University of New Hampshire.ReferencesAmerican Association on Mental Retardation (2002). Definition, classification, and systems of supports. 10th Edition. Washington, DC: American Association on Mental Retardation.Biklen, D., & Cardinal, D. (1997). Contested words, contested science. New York: Teachers College Press.Broderick, A., & Kasa-Hendrickson, C. (2001). Say just one word at a time: The emergence of reliable speech in a student labeled with autism. Journal of the Association for Persons with Severe Handicaps, 26, 13-24.Donnellan, A. (1984). The criterion of the least dangerous assumption. Behavioral Disorders, 9, 141-150.Donnellan, A. (1999). Absence of evidence: Myths about autism and mental retardation. TASH Newsletter, May 2000.Erickson, K., Koppenhaver, D., & Yoder, D. (2002). Waves of words: Augmented communicators read and write. Monterey, CA: Augmentative Communication.Erickson, K., Koppenhaver, D., Yoder, D., & Nance, J. (1997). Integrated communication and literacy instruction for a child with multiple disabilities. Focus on Autism and Other Developmental Disabilities, 12(3), 142-150.Gardner, H. (1983). Frames of mind: The theory of multiple intelligences. New York: Basic Books.Gould, S. (1981). The mismeasure of man. New York: W.W. Norton and Co.Koppenhaver, D., Erickson, K., Harris, B., McLellan, J., Skotko, B., & Newton, R. (2001). Storybook- based communication intervention for girls with Rett Syndrome and their mothers. Disability and Rehabilitation, 23, 149-159.Kuhn, T. (1962). The structure of scientific revolutions. Chicago: University of Chicago Press.Ryndak, D., Morrison, A., & Sommerstein, L. (1999). Literacy before and after inclusion in general education settings: A case study. Journal of the Association for Persons with Severe Handicaps, 24(1), 5-22.
Source:Disability Solutions: A publication of Creating Solutions, A Resource for Families & Others Interested in Down Syndrome & Developmental Disabilities, Fall 2005, Volume 6, Issue 3
Friday, June 12, 2009
Girls Weekend!
Okay - the title might imply a fun trip to Vegas or a relaxing spa trip - nope. I'm merely referring to the fact that it will be me, Aubrey, and Molly all weekend long! We'll have a blast - but I know I'll be exhausted and empathetic for every single parent out there!
Chris is in Chicago for the Twins/Cubs series with some of his brothers. My parents would normally jump at the chance to come to Omaha and help me - but alas - they are in Chicago as well for the Twins game and a mini McGill family reunion!
Oh yeah - one of my best friends from work is there too.
So - - while just about everyone I know and love is in Chicago - Aubrey, Molly and I will be living it up here in Omaha!!!
I just hope the weather cooperates somewhat so we can venture outside!
Well - - that's about it for now - - I'll let you know how we survive the weekend!
Chris is in Chicago for the Twins/Cubs series with some of his brothers. My parents would normally jump at the chance to come to Omaha and help me - but alas - they are in Chicago as well for the Twins game and a mini McGill family reunion!
Oh yeah - one of my best friends from work is there too.
So - - while just about everyone I know and love is in Chicago - Aubrey, Molly and I will be living it up here in Omaha!!!
I just hope the weather cooperates somewhat so we can venture outside!
Well - - that's about it for now - - I'll let you know how we survive the weekend!
Thursday, May 21, 2009
Aubrey Started Horse Therapy
Aubrey started Hippotherapy (aka Horse Therapy) this week at HETRA http://www.hetra.org/
Here's a little blurb from their website that explains it better than if I tried to:
HETRA serves a variety of clients including Children and adults with disabilities such as cerebral palsy, spina bifida, muscular dystrophy, cystic fibrosis, brain tumors, head injuries, blindness, autism, and strokes. Our students benefit from therapeutic riding in a variety of ways. The rhythmic motion of the horse at the walk helps to relax tight spastic muscles. Sitting on the horse encourages students to hold themselves up which strengthens neck and trunk muscles. Riding also stretches hip and thigh muscles, and improves balance. Interaction with the instructor helps students follow directions, extend their attention span and work on concepts such as right and left. Interaction with the horse allows the students to develop a bond with the animal that improves self-esteem and builds confidence. Each student rides for approximately 30 minutes one time per week, and most students are assisted by a leader and two sidewalkers throughout their session. Two of our instructors are Occupational Therapists who monitor the students progress throughout their participation in the program.
Okay - so how did it go - I know that's really what you want to read about!
Aubrey's biggest hurdle will be getting used to wearing the required helmet. She doesn't mind wearing it - but the straps that dangle down that are causing the problem. She was OBSESSED with chewing on them. It's all she wanted to do so she didn't tend to much else! We tried to tuck them away - but she'd find them or they'd eventually slip out - and then back to her incessant chewing. We'll likely buy a bike helmet for her to wear for practice - so she can get over the strap obsession!
Here's a little blurb from their website that explains it better than if I tried to:
HETRA serves a variety of clients including Children and adults with disabilities such as cerebral palsy, spina bifida, muscular dystrophy, cystic fibrosis, brain tumors, head injuries, blindness, autism, and strokes. Our students benefit from therapeutic riding in a variety of ways. The rhythmic motion of the horse at the walk helps to relax tight spastic muscles. Sitting on the horse encourages students to hold themselves up which strengthens neck and trunk muscles. Riding also stretches hip and thigh muscles, and improves balance. Interaction with the instructor helps students follow directions, extend their attention span and work on concepts such as right and left. Interaction with the horse allows the students to develop a bond with the animal that improves self-esteem and builds confidence. Each student rides for approximately 30 minutes one time per week, and most students are assisted by a leader and two sidewalkers throughout their session. Two of our instructors are Occupational Therapists who monitor the students progress throughout their participation in the program.
Okay - so how did it go - I know that's really what you want to read about!
It was a typical first session! Every first session with a new therapy it takes Aubrey some time to get comfortable and it takes even more time for the new therapist to really "get" Aubrey. We were ready for this though - it's a natural response for any of us in a new situation - so no big surprises.
We were very pleased with how well Aubrey took to the horse - she was not scared one bit and the horse didn't seem to mind her wiggling and squirming nature either. So I know in time the horse Kayla and Aubrey will become great friends!
Aubrey's biggest hurdle will be getting used to wearing the required helmet. She doesn't mind wearing it - but the straps that dangle down that are causing the problem. She was OBSESSED with chewing on them. It's all she wanted to do so she didn't tend to much else! We tried to tuck them away - but she'd find them or they'd eventually slip out - and then back to her incessant chewing. We'll likely buy a bike helmet for her to wear for practice - so she can get over the strap obsession!
Throughout all of it, Molly and I were watching from the sidelines and Chris was in the ring with them but not right up there. You could tell he wanted to jump in and help so bad - but until we're formally trained as a Side Walkers - we can't be right up there with her during the actual session. You see - in almost every other therapy we've started with Aubrey (Physical, Occupational, Speech, ect) it's usually Chris that gets Aubrey to initially tune into the session. He also provides a good example for the new therapists to see what Aubrey responds to best. Aubrey is such a daddy's girl - and he just has this special way with her to get her to focus. She missed out on this due to the safety rules this session.
But with more helmet practice, more familiarity with each other, and Chris and I getting "officially" trained - I think this is going to be really good for her. Her lack of control and balance is the biggest thing that is holding back from walking independently - so we think this therapy will really assist her in these areas!
Here are some pictures of her on the Kayla the horse - enjoy! 
Wednesday, May 20, 2009
Angelman Walk A Thon was a HUGE Success!
On Saturday May 16th - we had the Angelman Syndrome Walkathon at Shadow Lake Towne Center. There were similar walks taking place in 23 other cities across the nation - but this was the first one in the Omaha area!
We were blown away - especially given the fact that it was the first year!
Nearly 500 people were at the walk despite the cold and windy weather and we raised over $32,000 for the Angelman Syndrome Foundation!! This money will go directly to research projects for a possible cure and educational and support materials that will benefit all Angelman individuals including Aubrey!
We would like to thank each and everyone that showed up to support Aubrey at the Walk. She had a wonderful showing.
The UNO Dance Team came early in the morning to help with registration. They also did a small performance to get the event officially kicked off and finally walked together in support of their biggest fan Aubrey.
The Union Pacific Daycare made a big splash with the Pink and Green "Team Aubrey" shirts. They seemed to be everywhere! From Aubrey's current teacher Miss Katie - to her first one she had at 8 weeks old Miss Rebecca - they were all there in support! And Kathie - the director of the daycare - assisted with the whole set up and months of organization. She really went above and beyond to make the day a success for Aubrey and all the Angel families!
We were of course happy that so many of our family and friends from work and church could take part in the day with us as well. My parents and sister and cousins were all there. But we hope there are no graduations or confirmations that conflict next year - so we can get the whole clan together!! We did have our full "Omaha family" in attendance. Beth, Tonya, and Rebecca - my best friends in Omaha - were there in full force. Even 4 day old Brody Thomas made the walk!!!
Finally - we would also like to thank everyone that had the opportunity to donate to Aubrey's online fundraising page: http://www.angelman.org/TeamAubrey/
We're so grateful for your generous support! You were there in spirit!
Here are some pictures of the day:
Shirts designed by Jessica at Aubrey's Daycare - they are AWESOME!
We're waiting for the Walk to start!
UNO Dance Team doing a little performance to get things kicked off!
This is our attempt to take a picture with all the Angelman kiddos. Didn't get a good one - but there were about 15 children from 15 months to 20 years old with Angelman Syndrome in attendance. Most kids were from Nebraska - but we did have some participants from Iowa, Missouri, adn South Dakota.
Aubrey and her Daddy - practicing her steps!
Uncle Nate, Aunt Mara welcome Kara halfway through the walk!
Who knew the Buffalo Wild Wings mascot was an Angel too!!
Our family after the walk was all done!
What a great day - I can't wait for next year! Our wheels are already spinning on how to make it bigger and better!
We were blown away - especially given the fact that it was the first year!
Nearly 500 people were at the walk despite the cold and windy weather and we raised over $32,000 for the Angelman Syndrome Foundation!! This money will go directly to research projects for a possible cure and educational and support materials that will benefit all Angelman individuals including Aubrey!
We would like to thank each and everyone that showed up to support Aubrey at the Walk. She had a wonderful showing.
The UNO Dance Team came early in the morning to help with registration. They also did a small performance to get the event officially kicked off and finally walked together in support of their biggest fan Aubrey.
The Union Pacific Daycare made a big splash with the Pink and Green "Team Aubrey" shirts. They seemed to be everywhere! From Aubrey's current teacher Miss Katie - to her first one she had at 8 weeks old Miss Rebecca - they were all there in support! And Kathie - the director of the daycare - assisted with the whole set up and months of organization. She really went above and beyond to make the day a success for Aubrey and all the Angel families!
We were of course happy that so many of our family and friends from work and church could take part in the day with us as well. My parents and sister and cousins were all there. But we hope there are no graduations or confirmations that conflict next year - so we can get the whole clan together!! We did have our full "Omaha family" in attendance. Beth, Tonya, and Rebecca - my best friends in Omaha - were there in full force. Even 4 day old Brody Thomas made the walk!!!
Finally - we would also like to thank everyone that had the opportunity to donate to Aubrey's online fundraising page: http://www.angelman.org/TeamAubrey/
We're so grateful for your generous support! You were there in spirit!
Here are some pictures of the day:
Shirts designed by Jessica at Aubrey's Daycare - they are AWESOME!
We're waiting for the Walk to start!
UNO Dance Team doing a little performance to get things kicked off!
This is our attempt to take a picture with all the Angelman kiddos. Didn't get a good one - but there were about 15 children from 15 months to 20 years old with Angelman Syndrome in attendance. Most kids were from Nebraska - but we did have some participants from Iowa, Missouri, adn South Dakota.
Aubrey and her Daddy - practicing her steps!
Uncle Nate, Aunt Mara welcome Kara halfway through the walk!
Who knew the Buffalo Wild Wings mascot was an Angel too!!
Our family after the walk was all done!
What a great day - I can't wait for next year! Our wheels are already spinning on how to make it bigger and better!
Friday, May 8, 2009
Molly's First Birthday!
We had a nice little party for Molly last night.
I still can't believe she's ONE!
Here's some fun pictures of the birthday girl and her party:
I still can't believe she's ONE!
Here's some fun pictures of the birthday girl and her party:
Tuesday, April 28, 2009
Aubrey's Room Makeover has Started
So a while back I posted an entry called Heart Warming Phone Call.
Basically - Angie VonDollen, who owns her own design business called Bleak to Chic - volunteered her time and talents to give Aubrey's room a makeover.
Well - she started the project this Sunday - she was at our house from 12:00 to 7:00 painting, putting up a window treatments, and hand painting flowers on the accent wall. She's not done yet - as she's going to add some more hand painting, Aubrey's Name, pictures, and the Angelman Saying - "Though I may not talk, I have much to say!" into the design. But - here's a sneak peak at what its looking like so far - IT'S AWESOME!
She is such a gracious person and we are so thankful for her time and efforts!
If anyone in Omaha area needs an interior designer, a home stager, or consulting on any designs - please check out her business http://www.bleak2chic.com/index.htm
Molly Update
So much of my time on this blog is spent giving updates on Aubrey, that I felt Molly should get her own post!! She will turn one on May 7th - - I can't believe how fast time flies!
She's crawling, cruising, and just last week took 14 steps un-assisted!!! She still prefers to crawl around -but she's up standing and testing her walking abilities more and more each day!
She also has been experimenting with her sounds. She'll jabber to herself -and try and repeat what you say to her. She will say mama, ball, uh oh, and said no at daycare last week.
Here are some pictures of her lately - I'll try and post a video of her walking as soon as I can!
She's crawling, cruising, and just last week took 14 steps un-assisted!!! She still prefers to crawl around -but she's up standing and testing her walking abilities more and more each day!
She also has been experimenting with her sounds. She'll jabber to herself -and try and repeat what you say to her. She will say mama, ball, uh oh, and said no at daycare last week.
Here are some pictures of her lately - I'll try and post a video of her walking as soon as I can!
UNO Dance Team Finishes 4th in the Nation!
In my "free" time I also coach the University of Nebraska-Omaha Dance Team.
On April 9th, the team placed 4th at the NDA Collegiate Dance Championships in Daytona Beach, FL. Here are some pictures of the trip:
One of the team Dinners:
Nina on the beach:
Ashley, Alex and Maddie:
Being Silly:
Coach Amy, Only Senior Emily, and me
On April 9th, the team placed 4th at the NDA Collegiate Dance Championships in Daytona Beach, FL. Here are some pictures of the trip:
One of the team Dinners:
Nina on the beach:
Ashley, Alex and Maddie:
Being Silly:
Coach Amy, Only Senior Emily, and me
The team with the 4th place trophy:
Monday, April 20, 2009
Great Weekend - Wedding and Met another Angel
This was a great weekend.
It started with my sister's wedding in Beresford, SD. It was so fun to see all my family and old friends and even better to see my little sister marry the man of her dreams.
CONGRATS to Mara and Nate Seier!!
We then capped off the perfect weekend by meeting another family with a child with Angelman Syndrome.
We had the pleasure of meeting Andria and Bart and their adorable angel - Kamaray (Kammy they call her). Kammy is just 2 months younger than Aubrey, however they just learned about her diagnosis about a month ago.
Andria found me on Facebook. I know her younger sister because she danced for USD. When they were all home for Easter her sister told her about me and Aubrey and encouraged her to send me a note! She did - and I called and talked to her for about 2 hours last weekend. WHAT A SMALL WORLD! For AS to be SO rare and have this connection through dance - CRAZY!
Anyway - they live in South Sioux City - so we thought it would be perfect for us to meet them on our way back from the wedding - and it was!
It was wonderful seeing Kamaray and hearing their tips, tricks, and diagnosis story. Kamaray - is very calm and steady - we were so impressed with this!!! She has just recently taken 3 unassisted steps = = so she is officially a ROCK STAR in our eyes!! But everything is so relative - and each child has their own strengths. They were so impressed with Aubrey's ability to feed herself and her willingness to eat any food and texture. Hopefully they will be good influences on each other - - Kamaray can get Aubrey up an walking and Aubrey can help her with her food aversions!!!
It was also so surreal to see how much they look alike. Kammy and Aubrey look more like sisters than Aubrey and Molly - CRAZY! I'm so mad that I didn't take pictures!! But I know we'll be getting together again some time so I'll take pictures next time!
I hope we helped them some with dealing with the new diagnosis. A year ago - we were them - just getting the news and all the sadness, devastation, and fear that comes along with the diagnosis. Its just good to meet other people that can relate - and that we can have as an additional support system.
Well - that's all for now!
It started with my sister's wedding in Beresford, SD. It was so fun to see all my family and old friends and even better to see my little sister marry the man of her dreams.
CONGRATS to Mara and Nate Seier!!
We then capped off the perfect weekend by meeting another family with a child with Angelman Syndrome.
We had the pleasure of meeting Andria and Bart and their adorable angel - Kamaray (Kammy they call her). Kammy is just 2 months younger than Aubrey, however they just learned about her diagnosis about a month ago.
Andria found me on Facebook. I know her younger sister because she danced for USD. When they were all home for Easter her sister told her about me and Aubrey and encouraged her to send me a note! She did - and I called and talked to her for about 2 hours last weekend. WHAT A SMALL WORLD! For AS to be SO rare and have this connection through dance - CRAZY!
Anyway - they live in South Sioux City - so we thought it would be perfect for us to meet them on our way back from the wedding - and it was!
It was wonderful seeing Kamaray and hearing their tips, tricks, and diagnosis story. Kamaray - is very calm and steady - we were so impressed with this!!! She has just recently taken 3 unassisted steps = = so she is officially a ROCK STAR in our eyes!! But everything is so relative - and each child has their own strengths. They were so impressed with Aubrey's ability to feed herself and her willingness to eat any food and texture. Hopefully they will be good influences on each other - - Kamaray can get Aubrey up an walking and Aubrey can help her with her food aversions!!!
It was also so surreal to see how much they look alike. Kammy and Aubrey look more like sisters than Aubrey and Molly - CRAZY! I'm so mad that I didn't take pictures!! But I know we'll be getting together again some time so I'll take pictures next time!
I hope we helped them some with dealing with the new diagnosis. A year ago - we were them - just getting the news and all the sadness, devastation, and fear that comes along with the diagnosis. Its just good to meet other people that can relate - and that we can have as an additional support system.
Well - that's all for now!
Friday, April 3, 2009
Aubrey Started Speech Therapy!
So after 11 months of being on a wait list Aubrey finally started the Scottish Rite Augmentative Communication Preschool program held at the Munroe-Myer Institute at the University of Nebraska Medical Center. She started last week - and two weeks into it we are so encouraged!
Here she is working with one of the instructors during their interactive book reading section.
Here she is working with one of the instructors during their interactive book reading section.
The sessions are each Friday morning from 9:00 - 10:30 am. They are structured as a mini-preschool.
They....
* Review the schedule for the day
* Have a Short Lesson
* Have a Short Lesson
* Have Song Time
* Interactive Book Reading
* Snack Time
* Goodbye Song
There are up to 5 students at a time with 3 therapists. The therapists are very engaging and use ALL forms of communication to work with the children. For instance, they'll be talking energetically while doing corresponding sign language. At the same time - they will be presenting picture choices to the children and for Aubrey - they even have a voice output device for her to hit. She's really new at this - and so it'll take time for her to get the cause and effect of it - but I'm so glad that we're starting this basic form of communication now while she's still so young!
One of my favorite parts they did was the Interactive Book Reading.
It was really neat to see. For the past 2 weeks they have been reading a "Making Vegetable Soup" book.
It's so neat how they put it together. They talk through the picture book and then each page - they bring out a more life-like toy for the children to do an activity with that corresponds to the story.
1st page: Planting and Tending the garden
So they bring out a watering can with actually water a toy plant. They also use toy gardening tools during this section.
2nd page:Picking the garden
They search for the plastic vegetables in a bucket of toy dirt
3rd page: Preparing the Vegetables
Clean the vegetables with a scrubber and "cut" them with a toy knife
Clean the vegetables with a scrubber and "cut" them with a toy knife
4th page: Making the Soup
They then put the cut up vegetables in a big pot and take turns stirring with a big spoon.
I'm probably not explaining it very well - but it's really neat to see them at work. It's the first book Aubrey's ever been engaged in!
The other thing that has been so encouraging is that we've made some great connections with the other parents and kids already.
As I mentioned earlier - there are 5 kids in the classroom including Aubrey. The other 4 all have Down Syndrome. They are all awesome and very motivating! They are all walking, and some are speaking a few words already. All of them are pointing, clapping, and have some sign language. At the moment - Aubrey cannot do any of these things - but with practice and encouragement we are hoping she'll progress on her own time. Due to the Angelman Syndrome diagnosis - we know that she will likely never talk - but just to see those kiddos "understand" and respond is SO NEAT!
Another neat thing (I've used NEAT alot in this post!!) is that 2 of the kids have parents that work at Union Pacific like Chris and I! Also - there are two of the families that live in the same neighborhood that we just moved into! One just 5 houses down, the other maybe 4 blocks away!
How crazy is that - what a small world!
Well - that's all for now - can't wait to give more updates on the progress she's making!
Thursday, March 12, 2009
Aubrey's Getting Braces......and NO not on her teeth!
We just got back from the Pediatric Orthopaedic doctor this morning - add it to the the list!
THE LIST.....
Pediatrician - general health
Neurologist - for seizure control
Urologist - for kidney reflux
Gastro Intestinal - for the Pancreantitis scare
and now Pediatric Orthopaedist - for her ankles rolling in when standing and walking.
Anyway - Aubrey's Physical Therapist was getting concerned with how her ankles were rolling inward while standing and cruising in her walker. She referred us to an Orthopedist for further guidance. This morning we waited for about 30 minutes in one of the tiniest doctor's offices we've been in with both girls getting antsy and ornery! Then in a matter of 5 minutes we talked to a resident, the doctor, and someone named Jill?!
During this 5 minutes they determined that Aubrey would likely benefit from wearing a type of foot/ankle brace for support and to keep her feet properly aligned.
They took her measurements and told us they'd have them in 2 weeks for her.
After the excruciating wait - it happened all so fast - it seemed odd at the time - but hey - if they think it will help Aubrey -we're on board!
Here's a link to the specific orthotic device they recommended:
http://www.surestep.net/about.html#parents
Hopefully Aubrey will take to them well. I know how much she likes plastic, velcro, and any type of strap or tag - - so I just hope that she won't be extra distracted by them and want to try and chew on her foot all day!!
Ultimately, we hope it will provide her the ability to become more balanced - which we feel is the one thing that's really holding her back from independently stand and walk.
We'll see!!
That's all for now - - - I promise - more pictures will be coming soon!
Monday, March 2, 2009
Aubrey's Learning to Potty Train - this is HUGE people!!!
So I've been really busy at work and fell slightly behind on this blogging thing!
But - I just have to share that we've been totally blown away with Aubrey this last week - she's becoming such a big girl!
Let me back up - last weekend eight Angelman Syndrome families got together in Omaha to meet, talk about the ASF Walk-a-Thon, and just pick each other's brains for a bit - IT WAS AWESOME!
Aubrey was one of the younger Angels there and it was great to get tips and tricks first hand. Anyway - after leaving the meeting last week - my husband and I were extra motivated to have Aubrey start potty training. Aubrey is 2 and a half and we just have been lazy up until now since she can't walk yet.
Anyway we talked to her teacher at daycare about and she was so excited to do it. We decided to just try and get her used to sitting on there every 2 hours. Quite honestly - we didn't expect much - and knew that it was likely to be a very very long process.
Long story short - Aubrey totally blew our expectations. On Thursday her teacher called me and was ecstatic to report that Aubrey had gone to the bathroom on the toilet!!! I was so happy I stood up at my desk and shouted out the news to everyone! But - again I sold Aubrey short and wrote it off as coincidence and a stroke of beginner's luck. Then after the second and then the third call of the day where she had a dry diaper, set her down on the toilet and she peed - we were over the moon.
It wasn't until she did it again for the 4th time that day at home for us that we started to think - - uh I thinks she's actually getting this on a cognitive level! On Friday - same thing - and we even got a call that she went #2 on the toilet. I yelled this one out at my desk too!! I have a friend with a "typical" daughter the same age - and she still hasn't done that yet!!
On Saturday Aubrey batted 3 for 4(her father missed the 2 hour mark - otherwise I think she'd be at 100%). She will still have a wet diaper after naps and overnight but other than that - since Thursday - she's basically waited to pee until she sits down!
Now - I know we're a long ways from being out of diapers or for her communicating to us that she has to go - but HOLY buckets she sure showed us. This initial step of her even making the connection and going intentionally I thought could take 4 years....but nope...Aubrey totally exceeded our expectations and did it in basically 4 days!
She taught us a great lesson this week - one I'm glad she got through to us while she's so young -- Never Underestimate her Abilities!!! We're so proud of our little girl and are so thankful for all the friends and family that are a constant means of support, encouragement and inspiration!
Yeah Aubrey!
That means.......Molly better get going....you can train a 9 month old to use the toilet - right! ha,ha!
But - I just have to share that we've been totally blown away with Aubrey this last week - she's becoming such a big girl!
Let me back up - last weekend eight Angelman Syndrome families got together in Omaha to meet, talk about the ASF Walk-a-Thon, and just pick each other's brains for a bit - IT WAS AWESOME!
Aubrey was one of the younger Angels there and it was great to get tips and tricks first hand. Anyway - after leaving the meeting last week - my husband and I were extra motivated to have Aubrey start potty training. Aubrey is 2 and a half and we just have been lazy up until now since she can't walk yet.
Anyway we talked to her teacher at daycare about and she was so excited to do it. We decided to just try and get her used to sitting on there every 2 hours. Quite honestly - we didn't expect much - and knew that it was likely to be a very very long process.
Long story short - Aubrey totally blew our expectations. On Thursday her teacher called me and was ecstatic to report that Aubrey had gone to the bathroom on the toilet!!! I was so happy I stood up at my desk and shouted out the news to everyone! But - again I sold Aubrey short and wrote it off as coincidence and a stroke of beginner's luck. Then after the second and then the third call of the day where she had a dry diaper, set her down on the toilet and she peed - we were over the moon.
It wasn't until she did it again for the 4th time that day at home for us that we started to think - - uh I thinks she's actually getting this on a cognitive level! On Friday - same thing - and we even got a call that she went #2 on the toilet. I yelled this one out at my desk too!! I have a friend with a "typical" daughter the same age - and she still hasn't done that yet!!
On Saturday Aubrey batted 3 for 4(her father missed the 2 hour mark - otherwise I think she'd be at 100%). She will still have a wet diaper after naps and overnight but other than that - since Thursday - she's basically waited to pee until she sits down!
Now - I know we're a long ways from being out of diapers or for her communicating to us that she has to go - but HOLY buckets she sure showed us. This initial step of her even making the connection and going intentionally I thought could take 4 years....but nope...Aubrey totally exceeded our expectations and did it in basically 4 days!
She taught us a great lesson this week - one I'm glad she got through to us while she's so young -- Never Underestimate her Abilities!!! We're so proud of our little girl and are so thankful for all the friends and family that are a constant means of support, encouragement and inspiration!
Yeah Aubrey!
That means.......Molly better get going....you can train a 9 month old to use the toilet - right! ha,ha!
Monday, February 2, 2009
Heart Warming Phone Call
The background:
So.....as I mentioned earlier we just moved into a new house after selling our old house. During this process we've been working with a professional home stager/interior designer named Angie. She helped select colors, stains, and window treatments for our new house. We've met in person for a total of about 4 hours max. The last time she came about two weeks ago we had Aubrey(2 yrs; del+) and Molly (9 months) with us. This was the first time she met our kids.
The girls were loving crawling around the open space with newly laid carpet while we were asking her advice for window treatments. I was also asking alot of questions about what fun themes or color palettes we could do for both of the girls' rooms. During this visit she asked about the dutch door installed for Aubrey's room. This lead into our explanation of AS and Aubrey's diagnosis story. We then went back to talking about drapes vs blinds vs Roman shades and that was that.
Fast Forward to today:
Angie called and wanted to offer her services and that of her designer and carpenter friends to "do" Aubrey's room for free!! She said she was so moved by meeting Aubrey and hearing us talk that night and then by fate she was contacted for sponsorship for the first AS Walk in Omaha, NE only a couple of days after meeting Aubrey.
Melissa Yost is the chair for the Omaha walk and had contacted her at a local business to support the cause. Her niece is Delaney, our 7 year old hero with Angelman Syndrome that also lives in the Omaha area!! Angie began talking with Melissa and asking her more questions about AS and the Walk and Aubrey. It was at that point that she decided that she'd donate a gift certificate as a door prize for the Walk - but wanted to do even more for Aubrey.
So she contacted me with her idea and wanted to know if we'd be open to it and what ideas we had. I was so blown away!!
She had already contacted an artist that she's worked with in the past to do some mural work if we wanted something like that. She thought she'd want to include the AS quote " I may not speak, but I have much to say!" somewhere in the design.
Again - - it is so kind of her, a relative stranger to offer to do such a nice thing!! Wow - still in awe!!
I'll keep you posted - - and if you have any ideas for design - - send them my way!!
So.....as I mentioned earlier we just moved into a new house after selling our old house. During this process we've been working with a professional home stager/interior designer named Angie. She helped select colors, stains, and window treatments for our new house. We've met in person for a total of about 4 hours max. The last time she came about two weeks ago we had Aubrey(2 yrs; del+) and Molly (9 months) with us. This was the first time she met our kids.
The girls were loving crawling around the open space with newly laid carpet while we were asking her advice for window treatments. I was also asking alot of questions about what fun themes or color palettes we could do for both of the girls' rooms. During this visit she asked about the dutch door installed for Aubrey's room. This lead into our explanation of AS and Aubrey's diagnosis story. We then went back to talking about drapes vs blinds vs Roman shades and that was that.
Fast Forward to today:
Angie called and wanted to offer her services and that of her designer and carpenter friends to "do" Aubrey's room for free!! She said she was so moved by meeting Aubrey and hearing us talk that night and then by fate she was contacted for sponsorship for the first AS Walk in Omaha, NE only a couple of days after meeting Aubrey.
Melissa Yost is the chair for the Omaha walk and had contacted her at a local business to support the cause. Her niece is Delaney, our 7 year old hero with Angelman Syndrome that also lives in the Omaha area!! Angie began talking with Melissa and asking her more questions about AS and the Walk and Aubrey. It was at that point that she decided that she'd donate a gift certificate as a door prize for the Walk - but wanted to do even more for Aubrey.
So she contacted me with her idea and wanted to know if we'd be open to it and what ideas we had. I was so blown away!!
She had already contacted an artist that she's worked with in the past to do some mural work if we wanted something like that. She thought she'd want to include the AS quote " I may not speak, but I have much to say!" somewhere in the design.
Again - - it is so kind of her, a relative stranger to offer to do such a nice thing!! Wow - still in awe!!
I'll keep you posted - - and if you have any ideas for design - - send them my way!!
Monday, January 26, 2009
Crazy Day and Some Fun Pictures!
Hi there.
Crazy day.....
SHORT BREAKDOWN
6:30 am - Dance Practice
8:00 am - Aubrey's Therapy Session
9:30 am - WORK!
11:30 am - Final Inspection at the house
1:30 pm - Finally eat something for the day - - end up taking a day of vacation - since it turned into such a crazy one.
2:00 pm - Finish some more packing for the move
3:00 pm - Take a much needed nap - -it was fabulous
5:30 pm -Make supper with the last bits of food that we have left in the house.
7:00 pm - Bath time!
8:30 pm - Work on the Computer
10:00 pm - Update the Neglected Blog
10:30 pm - Go to bed!
MORE DETAILS
Therapy Session
Aubrey had a great session! For 2009 we'll swap between PT and OT every Monday morning to open more time in our schedules for her new speech therapy sessions and the Elkhorn Early Intervention Program. Anyway - all that detail to explain that it had been 2 weeks since the PT had been with Aubrey. She could tell an improvement in just that short time with her balance and calmness.
We're working on one-handed walking and attempting to have her stand un-supported. Her balance is getting better every time we practice - and I know she'll get there!! It's amazing for me to think that a year ago she was not able to transition from laying to sitting on her own and now she's crawling and cruising all over the place! We still have no idea when independent walking will be a reality - - but it's fun to see her progress towards that ultimate goal!
After therapy - - I ran into work - got as much stuff done as I possible could before I had to get back in my car and drive out to the house for the final inspection.
Final Inspection
Okay - - - this took twice as long as I thought it would - but well worth it. It was our time to look over everything that we saw that needs to be addressed before the closing. It mostly very minor and picky painting imperfections and a few nicks on the woodwork. Nothing major - thank God! We close on Wed and then the real fun of moving begins. Thank you in advance for those that will be helping us during this process. Now if only the weather would cooperate!
Unplanned Vacation
So I wasn't planning on taking vacation this afternoon - but after the inspection got done at 1:30 and I still hadn't eaten anything - I knew the day had taken a unplanned turn! You should all know how things not going to plan works out for me!! Anyway - I just decided that it was best to take it as vacation and then finish some things up around the house and take a much needed nap! Boy I love naps. Chris went back to work and then brought the girls home from daycare - with supper ready to go!
Bathtime
The girls, as always, made quite the mess during supper tonight. I swear they forgot to feed Aubrey at daycare today :)! She snarfed down a full orange, 2 hotdogs, broccoli, and nilla wafers, and a crescent roll - -I sat in awe at the amount of food she ate!
Molly had her usually Cheerios by hand and oatmeal/baby food mix by spoon.
Here are some pictures when they we're all stripped down to their diapers before bathtime - enjoy:
Well - - that's all for now. Better get ready for bed so I can meet my 10:30 pm time frame!
More to come after the move!
Crazy day.....
SHORT BREAKDOWN
6:30 am - Dance Practice
8:00 am - Aubrey's Therapy Session
9:30 am - WORK!
11:30 am - Final Inspection at the house
1:30 pm - Finally eat something for the day - - end up taking a day of vacation - since it turned into such a crazy one.
2:00 pm - Finish some more packing for the move
3:00 pm - Take a much needed nap - -it was fabulous
5:30 pm -Make supper with the last bits of food that we have left in the house.
7:00 pm - Bath time!
8:30 pm - Work on the Computer
10:00 pm - Update the Neglected Blog
10:30 pm - Go to bed!
MORE DETAILS
Therapy Session
Aubrey had a great session! For 2009 we'll swap between PT and OT every Monday morning to open more time in our schedules for her new speech therapy sessions and the Elkhorn Early Intervention Program. Anyway - all that detail to explain that it had been 2 weeks since the PT had been with Aubrey. She could tell an improvement in just that short time with her balance and calmness.
We're working on one-handed walking and attempting to have her stand un-supported. Her balance is getting better every time we practice - and I know she'll get there!! It's amazing for me to think that a year ago she was not able to transition from laying to sitting on her own and now she's crawling and cruising all over the place! We still have no idea when independent walking will be a reality - - but it's fun to see her progress towards that ultimate goal!
After therapy - - I ran into work - got as much stuff done as I possible could before I had to get back in my car and drive out to the house for the final inspection.
Final Inspection
Okay - - - this took twice as long as I thought it would - but well worth it. It was our time to look over everything that we saw that needs to be addressed before the closing. It mostly very minor and picky painting imperfections and a few nicks on the woodwork. Nothing major - thank God! We close on Wed and then the real fun of moving begins. Thank you in advance for those that will be helping us during this process. Now if only the weather would cooperate!
Unplanned Vacation
So I wasn't planning on taking vacation this afternoon - but after the inspection got done at 1:30 and I still hadn't eaten anything - I knew the day had taken a unplanned turn! You should all know how things not going to plan works out for me!! Anyway - I just decided that it was best to take it as vacation and then finish some things up around the house and take a much needed nap! Boy I love naps. Chris went back to work and then brought the girls home from daycare - with supper ready to go!
Bathtime
The girls, as always, made quite the mess during supper tonight. I swear they forgot to feed Aubrey at daycare today :)! She snarfed down a full orange, 2 hotdogs, broccoli, and nilla wafers, and a crescent roll - -I sat in awe at the amount of food she ate!
Molly had her usually Cheerios by hand and oatmeal/baby food mix by spoon.
Here are some pictures when they we're all stripped down to their diapers before bathtime - enjoy:
Well - - that's all for now. Better get ready for bed so I can meet my 10:30 pm time frame!
More to come after the move!
Friday, January 16, 2009
So I'm not as good at updating as I used to be....sorry!
It's Friday and I realized that it's been nearly a month since I've posted last.
I now have a Facebook account - so my old "blog" time is now spent stalking old and new friends on the book - not really productive - but very addicting.
Anyway - - here's a quick run down:
* Christmas was great - although we missed the big McGill party. It's hard to believe that all 10 of the original "McGill's" were present - - I missed seeing everyone and introducing Molly to those who have not met her yet :(
* New Years was fun! My parents came down to Omaha and we had a nice dinner/circus at The Stokes Bar and Grill. If you can only imagine a relatively high end establishment on NYE with 2 high chairs - it was a circus - but great food and fun! We then took advantage of the free baby sitting and went out with some friends - finishing the night with Rockband and Wii!
*We just learned that Aubrey is now accepted into a great speech therapy program sponsored by the Scottish Rites here in Omaha. It's a 1 1/2 hour session one day a week for the next three years. She was on the waitlist for 10 months - so we're very excited to begin!! She'll be in a "classroom" type setting with 4-5 other special needs children that have severe speech delay or non-verbal like Aubrey. The whole goal will be to help Aubrey and the other kiddos learn how to communicate via other means (pictures, voice out-put systems). It will be so nice - as Chris and I are still pretty clueless when it comes to all the strategies you can and should do to help Aubrey.
*Molly now has two teeth, is crawling, pulling herself up in the crib and on tables, and loves to eat her solids! Basically - she's growing up over night! It's so amazing to see how fast she develops and picks up on things. It can be bittersweet for a split second when you see her move beyond Aubrey's level already - but for the most part - it's so great to have Molly and Aubrey together - - they are going to have such positive impacts on each other throughout their entire life!
*We close on our new house in 12 days!!! We're so excited!!!
*The UNO Dance Team is in middle of preparations for NDA Nationals. We're 3/4 of the way done choreographing the routine and we're LOVING it - - can't wait to compete in April!
Well - - that's all for now - - I promise - - pictures are coming soon of the girls, the house, and heck maybe we'll even get one of Chris and I!
I now have a Facebook account - so my old "blog" time is now spent stalking old and new friends on the book - not really productive - but very addicting.
Anyway - - here's a quick run down:
* Christmas was great - although we missed the big McGill party. It's hard to believe that all 10 of the original "McGill's" were present - - I missed seeing everyone and introducing Molly to those who have not met her yet :(
* New Years was fun! My parents came down to Omaha and we had a nice dinner/circus at The Stokes Bar and Grill. If you can only imagine a relatively high end establishment on NYE with 2 high chairs - it was a circus - but great food and fun! We then took advantage of the free baby sitting and went out with some friends - finishing the night with Rockband and Wii!
*We just learned that Aubrey is now accepted into a great speech therapy program sponsored by the Scottish Rites here in Omaha. It's a 1 1/2 hour session one day a week for the next three years. She was on the waitlist for 10 months - so we're very excited to begin!! She'll be in a "classroom" type setting with 4-5 other special needs children that have severe speech delay or non-verbal like Aubrey. The whole goal will be to help Aubrey and the other kiddos learn how to communicate via other means (pictures, voice out-put systems). It will be so nice - as Chris and I are still pretty clueless when it comes to all the strategies you can and should do to help Aubrey.
*Molly now has two teeth, is crawling, pulling herself up in the crib and on tables, and loves to eat her solids! Basically - she's growing up over night! It's so amazing to see how fast she develops and picks up on things. It can be bittersweet for a split second when you see her move beyond Aubrey's level already - but for the most part - it's so great to have Molly and Aubrey together - - they are going to have such positive impacts on each other throughout their entire life!
*We close on our new house in 12 days!!! We're so excited!!!
*The UNO Dance Team is in middle of preparations for NDA Nationals. We're 3/4 of the way done choreographing the routine and we're LOVING it - - can't wait to compete in April!
Well - - that's all for now - - I promise - - pictures are coming soon of the girls, the house, and heck maybe we'll even get one of Chris and I!
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