Sunday, June 28, 2015

I Asked For It

Just finished being interviewed by Darren Humphries and Paul Boon, two AngelDads, for AReal Life Stories From the Journey.  I was humbled that these two men I admire would even consider me for the show.  We talked of the early days of Scotty's life and misdiagnoses.  We spoke of the  day when Angelman Syndrome became a permanent fixture in our lives.  Throughout the interview there were laughs, nods of admission and confirmation, and some tears as well.

This journey that each AngelParent is on is not a tale of gooey gooey gum drops and sugar coated unicorns flying in on a rainbow.  It is a tale of exhaustion, seizures, hundreds NO thousands of doctor visits and hospital stays, poop parties, and endless fighting.  Endless fighting you say?  Yes, fighting systems.  Every system you can imagine, we fight.  We fight to get proper meds to control seizures.  We fight to get the best appropriate education.  We fight against ignorance in every area of our lives.  We fight loneliness and depression.  We fight the feelings of defeat.  Finally, for me I fight with the inner voices of self pity vs. strength.

Once the camera was turned off, Darren, Paul, and I continued to talk about this journey. I started to share with these two amazing men the reason why I no longer hate AS or my life.  As a young girl I volunteered in our high school's special education classroom.  It was a self contained classroom of students with different abilities.  My task was to assist them with their assignments. I spent a lot of time in room 112 with these fellow students of mine, and we became friends.  My new friends were not included in the general student population except for lunch.  Many students would use the "R" word in their presence.  I never backed down from telling others to SHUT IT.    At a young age I was aware that each person is to be treated with the same amount of respect, love, and acceptance that we all desire.  Ability should not be a factor in how one is treated or mistreated.

I shared with Darren and Paul how I would pray at night in my bed with tears dripping a prayer of request.  I prayed that if God had any children with different abilities waiting to be born to please send one to me.  I remember telling God that I can do it.  I can do this.  I prayed  that one day I can prove to God that I would be an amazing mom to a child like them.  So when I have a pity party of "OH my life is so hard".  Why does Scotty have Angelman Syndrome?  Why do we struggle so?  I remember that prayer.  I have no right to hate AS. I have no right to hate my husband or this life.  I prayed  Scotty into my life.  I prayed for this life.  God does answer prayers.  Scotty is proof.

Sunday, March 1, 2015

My Prospectus: Attitudes and Knowledge of Professionals and Parents about Inclusion










Prospectus
Attitudes and Knowledge of Professionals and Parents about Inclusion
Rita Molino-Sell
Doctor of Education - Curriculum, Instruction & Assessment
Walden University
A00292390
Prospectus: Attitudes and Knowledge of Professionals and Parents about Inclusion



Description of the Local Problem
The term inclusion is used to describe services that place students with disabilities in general education classrooms with support services.  These students may receive instruction from a general education teacher as well as a special education teacher. Historically, children with disabilities of any kind were regarded to be inferior or invalid and not being thought to be able to benefit from education (Ayala, 2010).  Current practices and belief systems regarding inclusion for students with disabilities may be influenced by our country’s historical practices regarding individuals with disabilities.
Williamsville Central School District (WCSD) has 10,200  K-12 students enrolled in the 2014-2015 school year among its 13 schools.   The district boasts a 93% graduation rate with 60% of those students earning a Regents diploma in 2014.  Eighty percent of the students are white, 3% Black or African American, 3% Hispanic or Latino, 10% Asian,  3 % Multiracial, and 2% are limited English proficient,.  Eleven percent of the student body receives free or reduced lunches.     Williamsville high schools offer 20 different Advanced Placement course opportunities, allowing motivated and capable students to do college level work while still in high school.  WCSD is consistently ranked as one of the top school districts in Western New York by independent sources that evaluate student performance data annually.  In fact WCSD has been ranked by Business First as the #1 school district in WNY for 11 consecutive years (through 2013-14).   The Budget for the district this school year (2014-2015) is $173.9 million. 
As the largest suburban school district in Western New York, Williamsville Central encompasses 40 square miles including portions of the towns of Amherst, Clarence and Cheektowaga. 
The local problem for limited opportunities for inclusion for students with different abilities is widespread across all of WNY. There is 1048 square miles in Erie County.  Within these square miles there are ten schools exclusively for students with different abilities.  These schools are private schools that house students from surrounding districts.  The district the child lives in is financially responsible to cover all academic and therapeutic costs for the student. At Williamsville Central School District (WCSD), 10% of the students identified as needing to receive special education have been placed in some of these separate schools.  Another 40% of students with special needs are in the general education program for 40% or less of the day.  Looking at these statistics and the fact that WCSD has boasting rights to being ranked number one and possessing a healthy budget, it raises the question of what are the beliefs of the parents, administration, and teachers within the district of what is priority.  Are the students classified as having disabilities believed to be welcomed in the general population?  Do the parents and educators in WCSD believe that increased inclusion opportunities offer social, emotional, and intellectual benefits to all students?  Perhaps the underlying belief system within the district is that separate is more beneficial.  These are great questions, but what about the other side of the story? Do parents of students that are not included and are in special education settings feel their child is receiving the best education for them. Is it one size fits all?
Eredics (2014) found that there are increased social interactions and relationships between students.  A greater understanding of diversity develops, in addition to improved communication skills as students learn and respond to one another’s differences.  Students begin to feel more integrated into the school community and a greater sense of belonging develops.  Self-confidence grows naturally from positive support of peers and teachers.  All students should have equal access to the curriculum despite ability level.  Accommodation and modifications can be made to the students needs.  Students become more actively engaged in learning.
Rationale of the Local Problem and Purpose of the Study
The students attending the “special” schools have no opportunity to participate in general education and be included with their non-special education peers.  WCSD historically has one class in one of their three high schools they call the PRIDE class.  This class is housed in the Williamsville South High School.  There are 30 students enrolled in the PRIDE class.  This class is considered to be the class of inclusion.  However, the students enrolled in this class receive all instruction for all subject areas in this one classroom. This is considered a self-contained classroom, the antitheis to inclusion. They do not change classes for each period of the day as their non special education peers.  Their classroom is down a hall with no other classrooms in it.  The room is off the cafeteria.  If it is in the student’s IEP to participate in “specials” that student will be able to participate in art, gym, or music with their non disabled peers.  It is reported that none of the students enrolled in this class participate in the specials with their peers.   Although WCSD is listed in the top five districts in New York State in regards to standardized test scores for the past ten years, they fail to supply acceptable and appropriate inclusion opportunities for many of the students of different abilities.
According to Wagner (2014) this type of “special” education is sometimes felt to be inadequate and inferior, as well as separate and not necessarily equal to the regular education programs in the other regular classrooms. Current federal law (IDEA) mandates that all children receive a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) –and it is up to the each child’s Individualized Education Program (IEP) team to determine what constitutes FAPE and LRE for that particular child.  LRE refers  to the educational placement required by the  Individuals with Disabilities Act (IDEA) in 2004.  The idea of LRE is grounded in the precept that a student who has a disability should be educated with peers without disabilities in the greatest extent possible.  LRE will look differently for different students based on what is appropriate for each respectively.   This study will be looking at the beliefs and attitudes of educators and parents for the students that are identified as having developmental disabilities.  This may or may not include delays or disabilities involving cognition, physical needs, medical needs, learning differences, and communication needs.  Students identified with severe mental health issues such as childhood psychosis, oppositional defiant disorder, disruptive behavior disorders, or schizophrenia are not being considered for the purpose of this study. 
The purpose of the study is to inquire and review the beliefs and attitudes of teachers, administrators, and parents regarding inclusion opportunities for students identified as requiring special education.  What are the beliefs and attitudes of educational professionals and parents regarding inclusion for students with special needs?  What placement decisions have been made for students by parents?  Answering these questions may give us some insight into why so many students are placed in separate buildings.  If the underlying belief system is that the students benefit more from separation from their peers that could lead us to looking further into research why Least Restrictive Environment does not work for all students.  If the underlying belief system is that students with disabilities take away from the learning of the non disabled population, then we can look further into educating parents and educators of how inclusion is beneficial to all students.



Review of Literature Addressing the Problem
Framework
The theoretical framework of this study will be based on the belief that people will have a positive attitude toward inclusion if they have a full understanding of what inclusion looks like and how it will be carried out in the school and classroom setting.  Teachers may have a positive attitude about inclusion, however, be apprehensive if they are unsure or unaware of supports in place.  General Education teachers may portray a more negative attitude regarding inclusion if they feel ill prepared and have little to no support.  Parents may display a more positive attitude towards inclusion if they feel that their child will be safe in the environment.
Another conceptual framework for this study will be based on the notion of belief and change. In order to make positive change regarding inclusion practices, parents and educators need to look within and assess why there may be resistance to increase inclusion opportunities.  Pajares (1992) explains that there is resistance to change because there is an emotional component that makes it challenging for people to change their beliefs behind a given topic.  . “People grow comfortable with their beliefs, and these beliefs become their ‘self’ so that individuals come to be identified and understood by the very nature of the beliefs and the habits that they own” (Pajares, 1992, p. 317).
If there is resistance to change, Pajares (1992) explains that it is most likely because of the habitual quality of relying on known beliefs. This habitual quality is mainly due to the fact that beliefs are highly entwined with other central beliefs.  How deeply rooted the central beliefs control the level of resistance toward change.  The more intense and deeply rooted the central belief the more difficult it will be to change beliefs and practice toward inclusion.
Woods (1996) portrays a concept of deconstruction of beliefs that will help understand the movement toward change. Some beliefs, such as exceptional children should be separate and not included in general education, need to be disproven so that another set of beliefs can be formed (inclusion is possible and essential).
Review of Literature
American history shows that individuals with disabilities were viewed as feeble, undesirable, and “less than” their counterparts. Eugenics is a term first used in 1883 by Sir Francis Galton.  According to dictionary.com (2014) the definition of Eugenics is “the concept of selective breeding in humans to achieve improved genetic qualities that will strengthen and improve the gene pool.”   Ayala (2010) further explains that Americans embraced the eugenics movement by passing laws to prevent people with disabilities from moving to the U.S., marrying or having children. Eugenics laws led to the institutionalization and forced sterilization of disabled adults and children. On the heels of Eugenics a pamphlet was released in 1912:  The Threat of the Feeble Minded (Winzer & O’Connor, 1982).  This created a sense of panic and let to the allowance of substantial abuses of human rights for people with disabilities (Ayala, 2010).  It wasn’t until the Council for Exceptional Children (CEC) was founded to help improve the education for individuals with disabilities.  The CEC is still a force today advocating, educating, and informing parents, teachers, administrators, and the public about policies, practices, and professional standards for the education of people with disabilities.
Students with disabilities during the 60’s and 70’s were segregated and placed in separate schools away from general education students.  In 1975 The Education of All Handicapped Children Act (PL 94-142) required free, appropriate public Education (FAPE) in the least restrictive (LRE) setting. This Act was later renamed The Individuals with Disabilities Education Act (IDEA).
Although the reauthorization of the Individuals with Disabilities Education Act (IDEA 2004) states the assurance that students with disabilities receive a free and appropriate public education and the right to be educated with their non-disabled peers (LRE), we still find students with disabilities segregated and placed in separate schools with no opportunities for inclusion.  There is a need for better understanding of the beliefs and knowledge of teachers, administrators, and parents have about inclusion for students with special needs.  If we have an increased understanding of the thought process behind inclusion, perhaps we can better understand the gap of inclusion opportunities throughout the country.   Teachers are perceived to be integral to the implementation of inclusive education (Haskell, 2000).  Cant (1994) states that teachers are the key to successful inclusion practices.  Other studies acknowledge that inclusive education can only be successful if teachers and parents believe in the benefits of inclusion and are the driving force in the process (Home, 1983; Malone, Gallagher, & Long, 2001).
McCray and McHatten (2011) examined the perception of elementary and secondary education majors and toward the inclusion of students with disabilities and if their perceptions changed after taking a course on integrating exceptional students. The authors found that although the teachers may have made positive statements regarding inclusion of students with different abilities, many of them expressed hesitance.  The authors coined the term “othering” as to describe the underlying belief that students with disabilities (SWDs) are set apart, different, and most importantly having deficits.   Using terms such as “them”, “students like them”, “can those kind of students be taught in a normal classroom, and “how can I teach them”. McCray and McHatten (2011) poignantly explain; “If teachers say they are willing to include SWDs, but they still view them from a deficit perspective, how much better off will students be in their classrooms?”  The responses suggest a belief system that they as teachers will comply with inclusion but really do not accept the strengths or perhaps even the rights of students of different abilities.
McHatten and Parker (2013) did a longitudinal study that explored elementary and special education pre-service teachers’ perceptions of inclusion. The authors felt encouraged that the teachers expressed altruistic attitudes toward inclusion as a whole.  Teachers expressed general belief that inclusion is a favorable educational practice.  However, the participants also expressed beliefs that inclusion denies students with different abilities the needed individualized instruction and may even be detrimental to their self-concept. This suggests that the same policies designed to address issues of equity and access may result in negative unintended consequences for students with different abilities.
            Amado et al. (2013) summarized the status of research about community participation and social inclusion.    This study looked at how we can move past community activities and having a true sense of belonging for the individual with disabilities.  Keeping vulnerable individuals safe seems to be a theme across many of the research studies addressing beliefs and practices of inclusion.
Hamaidi et al. (2012) explored early childhood educators’ perceptions of inclusion internationally.  They found that the general attitudes regarding social and emotional aspects of inclusion were positive.  There was a disparity between their belief regarding inclusion and the actual practices of inclusion influenced by economic and budgeting factors.
Socuoglu et al. (2013) investigated the knowledge and attitudes of preschool teachers regarding inclusive practices and to determine the relationship between knowledge and attitudes of the teachers about inclusion. The results showed that attitudes towards inclusion were not positive or negative and there was no evidence of a significant relationship between level of knowledge and attitudes of the teachers. The authors further discussed the need for improved pre service and in service training for teachers for inclusion practices to be successful.
Ball and Green (2014) examined the attitudes and perceptions of school leaders relative to inclusion of students with disabilities. This study revealed that school leaders were limited in their training and experience regarding special education and practices related to inclusion.  Not only did the school leaders have limited training and experience, their attitudes toward inclusion were negative.  The school leaders felt that the degree of the disability should determine the level of inclusion or to the degree how a student is to be included with general education peers, if at all.  The authors emphasized the need for pre service as well as ongoing training for school leaders in order to see a positive change in inclusion practices.
Melelhoglu (2013) examined the impact of a project developed to promote interaction between teacher candidates and students with special needs.  The project aimed to have teacher candidates develop an increased awareness and positive attitude toward inclusion.  .  This study looked at the impact of a project specifically designed to promote interaction of teacher candidates with students with special needs and on the scope of special education.  Results showed that prior to the project, the candidates had negative thoughts towards students with different abilities.  According to the study, the teacher candidates said their perspective towards students with special needs changed in a positive way.  According to Melelhoglu (2012) “this change positively reflected to their behaviors, and they realized the importance of special education and inclusion.”
Swain et al. (2012) examined the change in pre-service teachers’ beliefs and attitudes about inclusive practices following an introductory special education course combined with a practicum.  Results imply that “a special education course coupled with field experience can significantly influence pre service teachers’ beliefs and attitudes about inclusion and inclusion practices” (Swain, et al., 2012)
Ross-Hill (2009) looked at the need for a better understanding of teacher attitude towards inclusion and how inclusive environment can be improved.  Results of this study indicated that most teachers support the practice of inclusion.  Teachers expressed that they feel more confident in their ability to have students with special needs in their class as long as they have adequate training and support to meet their needs.
Brandes and Crowson (2009) looked at relationships between pre service teachers’ discomfort with disability and perceived negative attitudes toward student with disabilities and opposition to inclusion.  They found that pre-service teachers with a higher level of discomfort toward disabilities are more likely to oppose inclusion and to hold negative attitudes toward students with disabilities.
Hsien, Brown, and Bortoli (2009) investigated potential associations between teacher attitudes and beliefs toward inclusion, their education levels, and teacher training.  They found that teachers with higher educational qualifications in special education were more positive about inclusion.
Baker-Ericzen and Garnand-Mueggenborg (2009) examined a comprehensive inclusion training program and its affect on child care providers’ attitudes and perceived competence toward inclusion.  They found that all of the providers significantly changed their attitudes and perceived competence toward inclusion after completion of the training program.
Rodriguez et.al (2012) specifically looked at teachers’ attitudes toward teaching students with autism spectrum disorders (ASDs).  The study showed a positive view of teachers’ expectations regarding student’s education in an inclusive setting.  They also found that the highest needs expressed by teachers were the need for information and social support in order for them to remain positive.
Hwang and Evans (2011) looked at 33 general education primary school teachers and their attitudes towards inclusion and their willingness to accommodate the needs of a student with a disability.  More than half of the teachers were unwilling to accommodate the student’s needs and had negative attitudes toward inclusion.  They also found if if the teachers had positive attitudes toward inclusion, they were reluctant to teach them in their general education classroom.

Significance
This project is unique because it addresses inclusion practices and the beliefs and attitudes of the decision makers of school placement for students with different abilities. .  The results of this study will hopefully provide insights into the thoughts and beliefs of teachers and parents regarding inclusion and to how we can better understand inclusion practices within a district.  Education is a source of social change and by addressing the inequities of opportunities of inclusion for students with disabilities can help us bring about societal changes in how we view, think about, and treat individuals with disabilities in society.  Inclusion of students with disabilities in the academic setting can assist with the transition to inclusion within society.
Research Questions
RQ1-Qualitative:  What do educators (teachers and administrators) and parents believe and know about inclusion of exceptional students?
RQ2 –Qualitative:  What placement decision have parents made for their exceptional child? And why? This would be where you answer my previous questions
Nature of the Study
The nature of this study will be qualitative. This study will be phenomenological in nature.  Creswell (1998) states, “a phenomenological study describes the meaning of the lived experience for several individuals about a concept or phenomenon” (p. 51).  Keeping the focus on attitudes, beliefs, and knowledge of inclusion for exceptional students will help get a better understanding of the central beliefs of educators and parents. 
Possible Types and Sources of Information or Data
Semi-structured interviews with teachers, administrators, and parents will be implemented throughout the study.   The interviews will allow participants to express their beliefs and perceptions in their own words (Best & Kahn, 1993; Coll & Chapman, 2000). Semi-structured interviews will provide flexibility to me as the researcher, and to the interviewee (Freebody, 2003; Rose & Cole, 2002). 
In order to initiate the interview and get the conversation underway and progress to a natural and more in depth discussion on their belief system regarding inclusion, gateway questions will asked.  Example questions for professionals may be:   How is inclusion implemented in your school?  Is inclusion the best academic setting for children with different abilities?  Interviewing parents the questions will be designed to open up the discussion with them on their child’s current academic setting.  The gateway questions used will be: Tell me about your child’s classroom setting.  Does your child participate with his/her peers at any time in the general education setting?  What prompted this classroom setting for your child?  Asking these questions will assist in getting the conversation started to attain insight into the parent’s attitudes toward inclusion for their child.
Questionnaires may also be used to gather data for this study.   One advantage of using questionnaires is that I can reach more participants and gather data in less time.



References
Amado, A. N., Stancliffe, R. J., Mccarron, M., & Mccallion, P. (2013). Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities. Intellectual and Developmental Disabilities, 51(5), 360-375.
Ayala, M. (n.d.). Timeline Of Relevant Events In Special Education Myrnas Version. Timeline Of Relevant Events In Special Education Myrnas Version. Retrieved February 13, 2014, from http://www.slideshare.net/MyrnaAyala/timeline-of-relevant-events-in-special-education-myrnas-version
Azjen, I. (1991). The Theory of Planned Behaviour. Organizational Behaviour and Human Decision Processes , 50, 179-211.
Azjen, I., & Fishbein, M. (1977). Attitude-Behaviour relations:  A theoretical analysis and review of empirical research. Psychological Bulletin, 84, 888-918.
Ball, K., & Green, R. (2014). An Investigation of the Attitudes of School Leaders toward the Inclusion of Students with Disabilities in the General Education Setting. National Forum of Applied Educational Research Journal, 27(1/2), 57-76. 
Baker-Ericzen, M.J., Mueggenborg, M. G. & Shea, M. M. (2009).  Impact of Trainings on Child Care Providers’ Attitudes and Perceived Competence Toward Inclusion:  What Factrs are Associated with Change?.  Topics in early childhood special education, 28(4), 196-208.
Best, J. W., & Kahn, J. V. (1993). Research in Education. New Jersey: Prentice Hall.
Brandes, J. A., & Crowson, H. M. (2009).  Predicting dispositions toward inclusion of students with disabilities:  The Role of Conservative Ideology and Discomfort with Disability.  Social psychology of education, 12, 271-289.
Cant, H. (1994).  Inclusive Education.  The Alberta Experience.  Practising administrator, 16(3), 38-41.
Coll, R. K., & Chapman, R. (2000). Qualitative or Quantitative?  Choices of methodology for cooperative education researchers. Journal of Cooperative Education, 35(1), 25-35.
Creswell, J. W. (1998). Qualitative inquiry and research design:  Choosing among five traditions. Thousand Oaks: Sage.
Freebody, P. (2003). Qualitative research in education: interaction and practice. London: SAGE Publications.
Hamaidi, D., Homidi, M., & Reyes, L. (2012). International Views of Inclusive Education:  A Comparative Study of Early Childhood Educators' Perceptions in Jordan, United Arab Emirates, and the United States of America. International Journal of Special Education, 27(2), 94-101.  
Haskell, D. (2000). Building Bridges Between Science and Special Education.  Electronic Journal of Science Education, 4(3), 1-12.
Home, M. D. (1983).  Attitudes of Elementary Classroom Teachers Toward Mainstreaming.  The Exceptional Child, 30, 93-97.
Hsien, M., Brown, P. M., & Bortoli, A. (2009). Teacher Qualifications and Attitudes toward Inclusion.  Australian Journal of Special Education,  33(1), 26-41
Hwang, Y., & Evans, D. (2011).  Attitudes towards Inclusion:  Gaps between Belief and Practice. International Journal of Special Education, 26(1)m 136-146.
Malone, D. M., Gallagher, P.A., & Long, S. R. (2001).  General Education Teachers’ Attitudes and Perceptions of Teamwork Supporting children with Developmental Concerns. Early Education and Development, 12(4), 577-592.
McCray, E. D., & McHatton, P. A. (2011). "Less Afraid to Have" Them" in My Classroom": Under
standing Pre-Service General Educators' Perceptions about Inclusion. Teacher Education Quarterly, 38(4), 135-155.
McHatton, P., & Parker, A. (2013). Purposeful Preparation Longitudinally Exploring INclusion Attitudes of General and Special Education Pre-Service Teachers. Teacher Education and Special Education:  The Journal of the Teacher Education Division of the Council for Exceptional Children, 36(3), 186-203.
Melekoglu, M. (2013). Examining the Impact of Interaction Project with Students with Special Needs on Development of Positive Attitude and Awareness of General Education Teachers towards Inclusion. Educational Sciences:  Theory & Practice, 13(2), -.
Pajares, M. F. (1992). Teachers' Beliefs And Educational Research: Cleaning Up A Messy Construct. Review of Educational Research, 62(3), 307.
Rodriguez, I.R., Saladan, D., & Moren, F. J. (2012).  Support, Inclusion, and Special Education Teachers’ Attitudes toward the Education of Students with Autism Spectrum Disorders, Autism Research and Treatment, 2012(259468), 1-8.
Rose, R., & Coles, C. (2002). Special and mainstream school collaboration for the promotion of inclusion. Journal of Research in Special Educational Needs, 2(2), 1-17.
Ross-Hill, R. (2009).  Teacher Attitude Towards Inclusion Practices and Special Needs Students. Journal of Research in Special Educational Needs, 9(3), 188-198.
Socuoglu, B., Bakkaloglu, H., Karasu, F., Demir, T., & Akalin, S. (2013). Inclusive Preschool Teachers:  Their Attitudes and Knowledge about Inclusion. International Journal of Early Childhood Special Education, 5(2), 107-128.
Swain, K., Nordness, P., & Leader-Janssen, E. (2012). Changes in Preservice Teacher Attitudes toward inclusion. Preventing School Failure, 56(2), 75-81.
Wagner, S. (2014, January 1). Inclusion vs. Self-Contained Education for Children with ASD Diagnoses. Retrieved February 9, 2015, from http://www.carautismroadmap.org/inclusion-vs-self-contained-education-for-children-with-asd-diagnoses/
Woods, P. (1996). Researching the art of teaching: ethnography for educational use. London: Routledge.

eugenics. (n.d.). Dictionary.com. Retrieved February 13, 2014, from http://dictionary.reference.com/browse/eugenics

Thursday, June 5, 2014

Daddy's Eyes

Here is a poem I wrote as if Scotty would be saying/feeling these things.  He is my inspiration to see through this entire world through God's Eyes.

Here is a poem I wrote.  Well, my mommy wrote it as if I did.  She knows me pretty well.  She prays a lot to God and sometimes she calls him “Daddy”.  She says He is our Heavenly Father and the love He has for us is so huge He likes to be called Daddy sometimes.

Through My Daddy’s Eyes

If you saw me through my Daddy’s eyes:
                You wouldn’t stare or look past me as if I wasn’t there
                You would look at me and say “hello”

If you saw me through my Daddy’s eyes:
                You wouldn’t ignore my smile.
                You would allow yourself to be blessed by it.

If you saw me through my Daddy’s eyes:
                You wouldn’t see a retarded person.
                You’d see a person who knows the secrets of the heavenlies beyond your imaginations.

If you saw me through my Daddy’s eyes:
                You would know what I found so funny
                You’d laugh with me rather than shushing me

If you saw me through my Daddy’s eyes:
                You wouldn’t fear or hate me or others like me.
                You’d experience all the love I have to give.

If you saw me through my Daddy’s eyes:
                You’d share in the Joy of the Lord with me rather than suffer in  depression.

If you saw me through my Daddy’s eyes:
                You would get to know my name rather than walk past me.

If you saw me through my Daddy’s eyes:
                You wouldn’t feel sorry for me.
                You’d rejoice in the Lord with me.

If you saw me through my Daddy’s eyes:
                You would know that I do not care if you hate or fear me… I love you anyway.

If you saw me through my Daddy’s eyes:
                You’d want to know my secret to happiness.

You see:  I see you through my Daddy’s eyes.

Friday, May 9, 2014

No words left

Writing has always been a way for me to process emotions regarding events that take place in the world and in my life.  Words have been my way to share what is in my heart.
This week I have very little words only tears.
Tears of disappointment.
Tears of deep sorrow.
Tears of anger.
Tears of grief.
Tears for a beloved fellow Angelmom who is waiting to take her last breath.
Tears for a beautiful young man named Evan who has lost his life to all that Angelman Syndrome can do to a body.
Tears for lost love.
This life is not easy.  We all have a story to tell.  Stories of heaven and hell.
This week I have had to say good bye to the dreams of a miracle for Patty Oneppo to be cancer free and good bye to another child with Angelman Syndrome.

Tears of joy are much sweeter than tears of grief.  

Wednesday, February 12, 2014

Help us spread the word: INTERNATIONAL ANGELMAN DAY IS FEB. 15 #cureangelman

Hello Everyone!  Feb. 15 is International Angelman Day.  I am sure most of you know that my son, Scotty has Angelman Syndrome.  Part of chromosome 15 he received from me is deleted.  My son cannot speak.  Scotty has seizures.  He has severe reflux, chronic constipation, asthma, scoliosis, suffers from headaches, back pain, hip pain, he has chronic upper respiratory infections, his airway often closes when he gets a cold, his walking is off balance and  he often falls, he has jerky movements, has difficulty feeding himself, and yet he smiles.
Angelman Syndrome is a devastating disorder.  Look past the beautiful face and the obvious love in his eyes and you just might see the struggle.    
There is nobody in this world that can take the hope away from me.  The hope for a cure.  The hope that my son will talk and be seizure free one day.  Please share this blog post and spread awareness for Angelman Syndrome.  Help us find and fund a cure.  Go to cureangelman.org and donate 15.00.  Do it for Scotty and all other people struggling with AS.
Learn more about this disorder go to cureangelman.org.
 I will be celebrating each day my son’s life, his determination, his great beautiful spirit of joy and love, and I will celebrate the hope and faith that there will be a cure in his lifetime.

Click the link below and see a beautiful message from fellow Angel Parent Colin Farrell.




here is a link to a video about my scotty...enjoy

Thursday, December 12, 2013

You Never Know Whose Hand Will Pull You Into Heaven

Sitting in the lobby at the Chicago Hyatt Regency trying to get some work done before we hit the road back to Buffalo, Scotty is sitting next to me saying hello to each person he can.  There is an older gentleman inches from Scotty’s chair.  Scotty is trying to get his attention and says “HI” and grabs for his arm.  I say:”Remember no touching just waving”.  

This man took Scotty’s hand and held it so gently and says. 
“It is OK, he is fine”.  We continue an incredible conversation about so many things that have been weighing on my heart and mind for so many years.

 This man was with his wife and another couple.  The one woman was a teacher for 35 years, now retired.  This gentleman and his wife spoke of their 3 sons, one happens to be named Scotty.  But their Scotty is 48 years old.  Their youngest son is 38 and has learning disabilities.  Their youngest son lives with their Scotty and works for him in their restaurant.  The fear of who is taking care of my Scotty when I am gone flooded me and a new hope had arisen because of this brief encounter with these people.

We spoke of a mother’s and daddy’s heart and how it is broken often and easily by a cruel educational system and world.  Smiles were shared through our tears.

Throughout this entire time, Scotty and this gentleman were having their own nonverbal conversation.  Holding hands, Scotty was caressing this man’s bald head..and pulled this man closer to his face..forehead to forehead..as Scotty has done to me so many times.  There was a moment of complete silence.  All of us just watching.

This man not once pulled away from scotty’s hand.  These were his words to me:  YOU NEVER KNOW WHOSE HAND IS GOING TO PULL YOU INTO HEAVEN”.  Your son’s hand is reminding me of that.  Too many people walk right on by this beautiful blessing.  This Scotty is going to pull many people into Heaven.”


I could not hold back the tears.  Our time together ended, and this man stood up and gave me the most loving hug a father would give a daughter.  I am forever
 changed because of this brief moment.

Tuesday, November 26, 2013

Here's to a Better Tomorrow!

Some people recently have told me that they admire me or I inspire them.  I am not quite sure why.

Some people ask me how I do what I do each day. 

I am not sure how to respond sometimes.  I am a mom, no different than any other mom.  I live for my sons.  I try to give them unconditional love each day.  I do my best to encourage and lift them up when they are down and I cheer them on when they are up.

No secret that my youngest son has Angelman Syndrome and Epilepsy and his needs are a bit more unique then my other sons’.  However, I am not special in any way.  I am an ordinary woman who faces each day with hope that the next day will be better.

I am not sure what I am made of…some say I am made of steel..for what I have endured and continue to endure.  I am not made of steel..for when I do fall…I break…steel does not break.
I break a little each time I see Scotty have a seizure and when he struggles to say a word.   I break a little when Ryan is discouraged in life. I broke when Christopher broke his back and can’t move because his body aches all over.

I break each day I am ignored or rejected by those I love.  I am a broken woman. 


What holds me together is hope and faith that I am working towards a better life for my sons and me.  I am held together with pure relentlessness.  I will NEVER GIVE UP.  Most of all I am held together with love.  The love  I have for my sons: Ryan, Christopher, and Scotty and the love they have for me in return.