October 23, 2009
“God, who creates and preserves all things, should make Jesus perfect through suffering.” ~Hebrews 2:10
In this verse the author of Hebrews tells us the natural order of suffering. Not even Jesus, God’s own son, was immune from it’s grips. In matters of the human experience we are all bound to experience levels of suffering.
Depression, mental illness, are labels inflicted on may to describe a human level of suffering and the darkness of the depths of depression. Hopelessness and unrest exemplify the human experience and embody the meaning of the word suffering. The only difference in diagnosis and the human experience it represents is the name humans, medical professionals, put on it.
To be so uncomfortable is a feeling human nature rails against. Of late, with my own mental illness, I have tried to embrace such darkness. I am learning, though often with barred knuckles, the humility and acceptance that is a part of who I have been created to be in order to be one with Jesus. I don’t like suffering and resist it’s grip. I don’t volunteer for the experience no matter how close it brings me to my creator. But I do know that in my own darkness Jesus allows me to be one with him. As a creation, perfect in it’s human flaws and the experience of darkness, Jesus comforts me.
When reading further in Hebrews the author speaks these words,
“And now He [Jesus] can help those who are tempted, because he himself was tempted and suffered.” ~ Hebrews 2:18
The temptation is to run away, but we can learn lessons from Jesus’ own experience. We may have been made to experience the darkness of suffering nestled deep within the human soul, but we are not made to do it alone.
Friday, October 23, 2009
Wednesday, October 21, 2009
Questions Lead Me to More Questions
October 15, 2009
This morning I am sitting in a hotel room in beautiful Syracuse, NY. The sun is shinning brightly, a sharp contrast to yesterday’s rainy, cool bleakness. I feel a sense of hope, surrounded by Syracuse University. I am excited to be among a community of learners, I am comfortable, a simple word that conveys a deep feeling within me.
This is where questions are asked without judgment and celebration occurs with the discovery of answers. I am at home surrounded by teachers and students. The atmosphere is one of acceptance, excitement even. I am impressed by the effort made by the staff in making me feel welcome by carving out precious time to meet with me. I feel important and even courted!
As I was reflecting on my daily meditation I am once again reminded of God’s promise in the book of Luke. “Ask and you will receive; seek and you will find; knock and the door will be opened to you.” ~Luke 11:9. I have lately been asking, seeking and knocking. This is a period of transition for me, my children are growing toward greater independence, my marriage is changing, and my interests are expanding. I have so many questions.
The quest for answers has let me to further my education and I have been investigating higher education as an option for the next half of my professional life. Syracuse University is where God has let me today, just for today, to ask. In their search for answers students and teachers alike discover the answer to the challenging questions of social justice. In my search for answers, I have been expanding my understanding of disability across lifespan; How community attitude plays a role in acceptance, how to change policy and law to give persons with disability opportunity to succeed and be productive members of society, how fear plays a role in blocking an attitude of acceptance, where to best put my efforts in order to affect change, what are the strategies that work and those that don’t , when are individuals and community ready to make needed change.
In my search I have asked these questions: How do we create “Schools of Promise” where all students are included, belong and have equal opportunity to learn? Where are we with regard to inclusive practices in higher education? How can we make the system better? Should government be involved in reviewing medical decisions involving persons with disability? Where are we in education since the Brown vs. The Board of Education decision that guaranteed all students regardless of disability the right to public education? Why are people with disabilities still the largest group of unemployed citizens? How can we position health care in such a way it doesn’t discriminate against those that are forced to use it? Why do we still see disability as something that we cannot relate to and affects the “other” person? Will we ever put in place policies and practices that value the contribution of all persons regardless of their limitations? Are we really that much different?
I am not sure I will get the answers to all these questions and each time I ask one question I come up with five more I didn’t ask. When the asking, seeking, and knocking are done, then I know I have done all I could!
This morning I am sitting in a hotel room in beautiful Syracuse, NY. The sun is shinning brightly, a sharp contrast to yesterday’s rainy, cool bleakness. I feel a sense of hope, surrounded by Syracuse University. I am excited to be among a community of learners, I am comfortable, a simple word that conveys a deep feeling within me.
This is where questions are asked without judgment and celebration occurs with the discovery of answers. I am at home surrounded by teachers and students. The atmosphere is one of acceptance, excitement even. I am impressed by the effort made by the staff in making me feel welcome by carving out precious time to meet with me. I feel important and even courted!
As I was reflecting on my daily meditation I am once again reminded of God’s promise in the book of Luke. “Ask and you will receive; seek and you will find; knock and the door will be opened to you.” ~Luke 11:9. I have lately been asking, seeking and knocking. This is a period of transition for me, my children are growing toward greater independence, my marriage is changing, and my interests are expanding. I have so many questions.
The quest for answers has let me to further my education and I have been investigating higher education as an option for the next half of my professional life. Syracuse University is where God has let me today, just for today, to ask. In their search for answers students and teachers alike discover the answer to the challenging questions of social justice. In my search for answers, I have been expanding my understanding of disability across lifespan; How community attitude plays a role in acceptance, how to change policy and law to give persons with disability opportunity to succeed and be productive members of society, how fear plays a role in blocking an attitude of acceptance, where to best put my efforts in order to affect change, what are the strategies that work and those that don’t , when are individuals and community ready to make needed change.
In my search I have asked these questions: How do we create “Schools of Promise” where all students are included, belong and have equal opportunity to learn? Where are we with regard to inclusive practices in higher education? How can we make the system better? Should government be involved in reviewing medical decisions involving persons with disability? Where are we in education since the Brown vs. The Board of Education decision that guaranteed all students regardless of disability the right to public education? Why are people with disabilities still the largest group of unemployed citizens? How can we position health care in such a way it doesn’t discriminate against those that are forced to use it? Why do we still see disability as something that we cannot relate to and affects the “other” person? Will we ever put in place policies and practices that value the contribution of all persons regardless of their limitations? Are we really that much different?
I am not sure I will get the answers to all these questions and each time I ask one question I come up with five more I didn’t ask. When the asking, seeking, and knocking are done, then I know I have done all I could!
Tuesday, October 13, 2009
Call to Action - Part 1
“Be strong and courageous and do the work. Don’t be afraid or discouraged by the size of the task for the Lord God, my God is with you. He will not fail you or forsake you. He will see to it that all the work related to the temple of the Lord is finished correctly.”
~1Cronicles 28:20
These are words spoken by King David to his son Solomon as he was instructed to complete the task David started: to finish the Temple to house the Ark of the Covenant. God had instructed David to gather all the materials, each carefully selected and stored. But David was not to build the temple, that task would be left to his son. David recognized that Solomon would need words of encouragement if her were to complete this daunting task. Solomon would need to know that if he continued with the task god had instructed him to do; god would give him the strength and courage to follow it to completion.
How many times do we need this same encouragement? Many! Beginning something that seems big, with an uncertain outcome can be frightening. To be fearful is a normal reaction to an unfamiliar task. We ask ourselves, “How will I ever manage to complete this? Am I really supposed to do this?” Our typical response is to stop the progress, to run away, to quit, giving up. Wee justify our actions by claiming, “I wasn’t supposed to do that anyway. Someone else can do it better. I just don’t have the time.” We allow our fear to take over; we forget that if God is with us, if we are doing god’s work in our lives he will give us the strength to follow our plans to completion.
If tragedy, illness, or poor choices come into our lives God offers us hope. He recognizes being human is often difficult. Life can place some very challenging situations in our path: death, illness, disability, divorce. We will often make mistakes in the way we choose to handle these situations. We become absorbed by the self and we forget we are to do God’s work. If life is falling apart, God gives us a way out. We are responsible to rebuild our lives. God gives us all the tools to do that. He wants us to value ourselves and build a “Temple” in which he can dwell.
God also asks us to build temples in community. God didn’t leave David or Solomon to do the enormous task in front of them alone. He gave them thousands of followers to do the task. Each individual person was to play a vital role in bringing the task to completion. I am seeking to build a temple within my community. It has become my vocation to work toward the betterment of the lives of those with disability. For too long they and their families have lived in social isolation, being rejected in the communities of church, work and school. Those with disability and their families long to participate in activities with others, however physical and attitudinal barriers often keep them from doing so. As a parent of a child with a disability and inclusion specialist I have experienced these things in my own life as I struggle to participate. What is preventing your workplace, school, or church from designing fully inclusive environments that honor individual differences?
We can remember and use the instructions David gave his son Solomon as he was instructing him on how to build the temple. We can be assured that God will see to it that the work we set out to do in service to him will be finished correctly. We can be assured as we go out in service to God and work to build our lives, communities, churches and schools to be temples in which God resides that: “Every part of this plan… was given to me in writing from the hand of the Lord.” ~1Chronicles 28:19
~1Cronicles 28:20
These are words spoken by King David to his son Solomon as he was instructed to complete the task David started: to finish the Temple to house the Ark of the Covenant. God had instructed David to gather all the materials, each carefully selected and stored. But David was not to build the temple, that task would be left to his son. David recognized that Solomon would need words of encouragement if her were to complete this daunting task. Solomon would need to know that if he continued with the task god had instructed him to do; god would give him the strength and courage to follow it to completion.
How many times do we need this same encouragement? Many! Beginning something that seems big, with an uncertain outcome can be frightening. To be fearful is a normal reaction to an unfamiliar task. We ask ourselves, “How will I ever manage to complete this? Am I really supposed to do this?” Our typical response is to stop the progress, to run away, to quit, giving up. Wee justify our actions by claiming, “I wasn’t supposed to do that anyway. Someone else can do it better. I just don’t have the time.” We allow our fear to take over; we forget that if God is with us, if we are doing god’s work in our lives he will give us the strength to follow our plans to completion.
If tragedy, illness, or poor choices come into our lives God offers us hope. He recognizes being human is often difficult. Life can place some very challenging situations in our path: death, illness, disability, divorce. We will often make mistakes in the way we choose to handle these situations. We become absorbed by the self and we forget we are to do God’s work. If life is falling apart, God gives us a way out. We are responsible to rebuild our lives. God gives us all the tools to do that. He wants us to value ourselves and build a “Temple” in which he can dwell.
God also asks us to build temples in community. God didn’t leave David or Solomon to do the enormous task in front of them alone. He gave them thousands of followers to do the task. Each individual person was to play a vital role in bringing the task to completion. I am seeking to build a temple within my community. It has become my vocation to work toward the betterment of the lives of those with disability. For too long they and their families have lived in social isolation, being rejected in the communities of church, work and school. Those with disability and their families long to participate in activities with others, however physical and attitudinal barriers often keep them from doing so. As a parent of a child with a disability and inclusion specialist I have experienced these things in my own life as I struggle to participate. What is preventing your workplace, school, or church from designing fully inclusive environments that honor individual differences?
We can remember and use the instructions David gave his son Solomon as he was instructing him on how to build the temple. We can be assured that God will see to it that the work we set out to do in service to him will be finished correctly. We can be assured as we go out in service to God and work to build our lives, communities, churches and schools to be temples in which God resides that: “Every part of this plan… was given to me in writing from the hand of the Lord.” ~1Chronicles 28:19
Saturday, September 26, 2009
Giving up the Fight
Most recently I was reading a writer’s interpretation of the Prayer of Jabez. Hidden in one of the bible’s briefest biographies is the story of a man determined to be a gimper for God. A gimper is someone that does a little more than what is expected or required. Jabez was such a person. He prayed a little more that what was expected, what was required and God expanded his purpose as a result.
In the reading today, I noticed that in his final request: “Oh… keep me from evil,” Jabez is asking to be kept out of the fight. In a culture consumed with competition this seems an odd request. Don’t we want to win the fight? Shouldn't’t we “fight the good fight"? How can we possibly stop fighting, our freedoms will be lost, our streets will be unsafe, our lives will be threatened or lost. But God calls us to take a different path. Like Jabez, he asks us to stay away from the competition that threatens to consume us in the modern way of living.
We are familiar with stories of patients fighting their illness, or people fighting for their rights. Our courts are filled with fighting plaintiffs and armed defendants standing ready. Our county continues to ask us to fight for our freedom. What exactly has all this fighting gotten us?
We stand angry at school doors ready to attach the very people that can help. We stand ready in courtrooms to defend our rights condemning our offenders to imprisonment. We stand armed on battlefields ready to shoot, killing and maiming our enemy. We stand ready in hospital beds ready putting up or armor, shielding us from death.
All this fighting has taken a toll on our bodies, minds and even more importantly our spirits. We no longer accept the difficulties of our lives with God’s helping hand because we are too busy spraying our bullets at our opponent.
In Alcoholics Anonymous one is told to “cease fighting anything and anyone…” The recovering alcoholic learns to lay down his weapons of defense, he is able to surrender, and give over his life to a higher power that has the ability to take away the desire to drink. We can learn many lessons from the recovering alcoholic as well as Jabez. God calls us to stay away from evil forces, those that threaten our sanity, our dignity and our lives.
Fighting always, always implies a winner and a looser. Someone comes in first, someone comes in last. In the lions den a warrior knows he cannot afford to come last. The key is to stay out of the lions den in the first place. If you don’t show up for the fight, there can be no fight. The opponent is forced to go home.
Sometimes there are situations when you cannot avoid the conflict. God is not asking us to bow before anyone or anything that is causing harm or injury. He is asking us to avoid the evil thoughts and places if we can that will lead us to defensiveness and evil. He is asking us to surrender our power to him, the only one that has the power to defend us. He is asking us to not go it alone, thinking we are the only hope for our children, our country, our families and ourselves. He compels us to rely solely on Him to rid us of our competitive nature. With God there are no winners and losers, no better or worse, no either or. With the power of God there is only rest, strength, acceptance. We are compelled to live as Jabez did, staying away from evil and being a gimper for God's work.
In the reading today, I noticed that in his final request: “Oh… keep me from evil,” Jabez is asking to be kept out of the fight. In a culture consumed with competition this seems an odd request. Don’t we want to win the fight? Shouldn't’t we “fight the good fight"? How can we possibly stop fighting, our freedoms will be lost, our streets will be unsafe, our lives will be threatened or lost. But God calls us to take a different path. Like Jabez, he asks us to stay away from the competition that threatens to consume us in the modern way of living.
We are familiar with stories of patients fighting their illness, or people fighting for their rights. Our courts are filled with fighting plaintiffs and armed defendants standing ready. Our county continues to ask us to fight for our freedom. What exactly has all this fighting gotten us?
We stand angry at school doors ready to attach the very people that can help. We stand ready in courtrooms to defend our rights condemning our offenders to imprisonment. We stand armed on battlefields ready to shoot, killing and maiming our enemy. We stand ready in hospital beds ready putting up or armor, shielding us from death.
All this fighting has taken a toll on our bodies, minds and even more importantly our spirits. We no longer accept the difficulties of our lives with God’s helping hand because we are too busy spraying our bullets at our opponent.
In Alcoholics Anonymous one is told to “cease fighting anything and anyone…” The recovering alcoholic learns to lay down his weapons of defense, he is able to surrender, and give over his life to a higher power that has the ability to take away the desire to drink. We can learn many lessons from the recovering alcoholic as well as Jabez. God calls us to stay away from evil forces, those that threaten our sanity, our dignity and our lives.
Fighting always, always implies a winner and a looser. Someone comes in first, someone comes in last. In the lions den a warrior knows he cannot afford to come last. The key is to stay out of the lions den in the first place. If you don’t show up for the fight, there can be no fight. The opponent is forced to go home.
Sometimes there are situations when you cannot avoid the conflict. God is not asking us to bow before anyone or anything that is causing harm or injury. He is asking us to avoid the evil thoughts and places if we can that will lead us to defensiveness and evil. He is asking us to surrender our power to him, the only one that has the power to defend us. He is asking us to not go it alone, thinking we are the only hope for our children, our country, our families and ourselves. He compels us to rely solely on Him to rid us of our competitive nature. With God there are no winners and losers, no better or worse, no either or. With the power of God there is only rest, strength, acceptance. We are compelled to live as Jabez did, staying away from evil and being a gimper for God's work.
Sunday, September 20, 2009
The Power of Others to Demonstrate God's Healing Presence During Times of Illness
"As it happened, Publius' father was ill with fever and dysentery. Paul went in and prayed for him, and laying his hands on him, he healed him. Then all the other sick people on the island came and were cured." ~Acts 28:8-9
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
The Power of Others to Demonstrate Gods Healing Presence During Times of Illness
"As it happened, Publius' father was ill with fever and dysentery. Paul went in and prayed for him, and laying his hands on him, he healed him. Then all the other sick people on the island came and were cured." ~Acts 28:8-9
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
What does healing look like?
Who are the people called to be prayer angels while laying their hands on us? Experiencing a recent illness, I am very aware of the faith that is required to trust God's grace during this period of uncertainty and physical and emotional unrest. It is especially during times of illness that we are closest to God, relying on his strength.
In this passage God gives us the instructions for getting back to wellness (whatever that looks like for each individual, and often only revealed to us looking back.)
God calls us to:
Trust his judgment while we rely on others. Theses periods when we do not get to experience total health and wellness we are to rely on those who love and care for us to be “God with skin on.” He asks us to lift our voices to the heavens while keeping our feet planted firmly on the earth. Sometimes that is all our loved ones can remind us to do. God says, "Others are sent remind you I am there."
God asks of us:
To rely on the power of healing touch. Physical touch is one of the most powerful social wellness tools we can bring out of our tool box of solutions. It invites us to be in community with others in our time of suffering. Allowing others to put their hands on us requires a certain vulnerability most are uncomfortable with. God says again, “Ask others to give healing touch in your life.”
It is through the power of spiritual connectedness with God and others in our lives that our physical and emotional selves experience the healing that Paul demonstrated in this gospel. We must not fear going to God as Publius' father did with openness, willingness and a faithful heart. We must become faithful, willing and open asking God to send us people to become a healing presence in our life. Experience the healing touch of God's own hands through the physical presence of others.
Tuesday, September 1, 2009
When to Teach a Child Self Advocacy and Self Determination
When should I begin to teach my child to advocate for his needs? How can I instill in my child the principles of self determination? What role should I play in my child’s life as he grows toward the independence of adulthood? These are questions parents begin to ask about any child but are particularity critical questions for parents as their child with a disability begins to reach adulthood. I would like to encourage parents to begin to ask these questions now at whatever age their child is. I began to really consider the role my son would play in his own life as a person with a disability living independent from me when he turned 8 years old.
At that time I started my own business in which I work individually with parents on issues relating to school and employment. I began to speak at conferences and develop workshops on how to be more inclusive and practice the principles of wellness. As I was traveling and learning about various issues relating to disability (independent living, programs and services, health care, caregiver support, employment, etc.) I began to wonder… Why aren’t I including my son in what is to be his life as an adult? Am I preparing him for the complexity of living with a disability in the adult world? And as I started assessing my actions I began to realize that I needed to begin now to expose him to the people and programs that would most likely be a part of his adult life.
I have always been a proponent of the principles of self determination: Freedom, Authority, Support, Responsibility. How will our children learn these principles, critical in their enjoyment of independence in adult life if we as parents and loved ones do not take the lead role in promoting them? Children and their families cannot rely on the school or other public institutions to play the lead role in this vital rite of passage into adulthood for every child regardless of having a disability. As parents we know that having a disability presents some unique challenges for our children. Transportation, attitudes, discrimination, lack of information and opportunity and/or educational challenges are just a few of the things that parents have been handling for the most part for their children. Many of these challenges will continue to present themselves as our children reach the age of adulthood. My son has two older brothers and I have not had to spend as much time in preparation for their roles as young men in the community as I have had to prepare my child with a disability. So I decided I needed to start the preparation now.
The community is slowly coming to realize that persons with disability are going to be part of their everyday experience. Parents have played a key role in bringing about this realization. It was parents and those that cared for their children that have insisted in full community participation. We have demanded at times that our children have all the same opportunities their “typical” peers have had. We sent them to school, took them to church, dragged them to the grocery store, dropped them off at camp and daycare and took them to friends homes, often having to overcome some huge obstacles to get them there.
I came to realize that I would not be doing my child any favors if I did not teach him how to interact with what would become his world of independence. I understood the trepidation that many parents feel in exposing their child to social situations and interacting in community. We have had, like most parents I know, frustrating and often painful experiences being in public places. There is the lack of accessible parking or someone taking a spot that they have no right to have, there are the fearful looks from others when we show up to participate, there are the innocent and not so innocent questions about our child’s disability or the use of some type of equipment, there are the comments about not knowing what to do, or having the “expertise” to handle our children (as if they are ponies in a fair or elephants in a circus).
So I began to look for ways in which my child could practice the principles of self determination. Freedom, Authority, Support, and Responsibility.
Freedom: I began to take him to conferences relating to disability and insisted the school include these experiences in his individual education plan.
Authority: I sought out opportunities in my community to get to know legislators, and administrators being sure to bring his picture or introduce him if he was with me. This proved to be particularly helpful when a piece of legislation comes up in which my child is directly affected.
Support: When we had a problem in our community, we discussed it, decided if it was worth pursuing and if it was made a plan to address the problem. Recently my son had an issue with a playground surface that was not accessible to him. He drafted a letter in which we mailed to those that had the authority to change it.
Responsibility: My son knows in a general way the goals on his individual school plan and when he thinks something is not right he discusses it with me. If there is a problem or violation he is encouraged to bring it to the attention of his teachers.
It has not always been easy for me to let go of the reigns and allow him to discover the independence he will need. I have had to be open and willing to share my child with a community that may or may not accept him. I have had to let him discover some of the obstacles he will face as an adult and sometimes that is painful. I have had to put aside my own expectations and ask him what is important to him. And I have had to remind myself that this journey of being a person with a disability is his to lead, and I am but a special guest on his journey. I am encouraged by the things he is learning and certain of the action I am taking. I have no doubt that he will be OK, that he will have the tools to interact in his community and he will be just fine living as an adult without me. It is the foundation I am laying right now at a young age that will make this a reality for him.
So... When should I begin to teach my child to advocate for his needs? Right now. How can I instill in my child the principles of self determination? Through including him in activities in which he can practice the principles. What role should I play in my child’s life as he grows toward the independence of adulthood? The role of teacher, supporter and model.
It is a wonderful journey and one in which I am privileged to be a part of!
At that time I started my own business in which I work individually with parents on issues relating to school and employment. I began to speak at conferences and develop workshops on how to be more inclusive and practice the principles of wellness. As I was traveling and learning about various issues relating to disability (independent living, programs and services, health care, caregiver support, employment, etc.) I began to wonder… Why aren’t I including my son in what is to be his life as an adult? Am I preparing him for the complexity of living with a disability in the adult world? And as I started assessing my actions I began to realize that I needed to begin now to expose him to the people and programs that would most likely be a part of his adult life.
I have always been a proponent of the principles of self determination: Freedom, Authority, Support, Responsibility. How will our children learn these principles, critical in their enjoyment of independence in adult life if we as parents and loved ones do not take the lead role in promoting them? Children and their families cannot rely on the school or other public institutions to play the lead role in this vital rite of passage into adulthood for every child regardless of having a disability. As parents we know that having a disability presents some unique challenges for our children. Transportation, attitudes, discrimination, lack of information and opportunity and/or educational challenges are just a few of the things that parents have been handling for the most part for their children. Many of these challenges will continue to present themselves as our children reach the age of adulthood. My son has two older brothers and I have not had to spend as much time in preparation for their roles as young men in the community as I have had to prepare my child with a disability. So I decided I needed to start the preparation now.
The community is slowly coming to realize that persons with disability are going to be part of their everyday experience. Parents have played a key role in bringing about this realization. It was parents and those that cared for their children that have insisted in full community participation. We have demanded at times that our children have all the same opportunities their “typical” peers have had. We sent them to school, took them to church, dragged them to the grocery store, dropped them off at camp and daycare and took them to friends homes, often having to overcome some huge obstacles to get them there.
I came to realize that I would not be doing my child any favors if I did not teach him how to interact with what would become his world of independence. I understood the trepidation that many parents feel in exposing their child to social situations and interacting in community. We have had, like most parents I know, frustrating and often painful experiences being in public places. There is the lack of accessible parking or someone taking a spot that they have no right to have, there are the fearful looks from others when we show up to participate, there are the innocent and not so innocent questions about our child’s disability or the use of some type of equipment, there are the comments about not knowing what to do, or having the “expertise” to handle our children (as if they are ponies in a fair or elephants in a circus).
So I began to look for ways in which my child could practice the principles of self determination. Freedom, Authority, Support, and Responsibility.
Freedom: I began to take him to conferences relating to disability and insisted the school include these experiences in his individual education plan.
Authority: I sought out opportunities in my community to get to know legislators, and administrators being sure to bring his picture or introduce him if he was with me. This proved to be particularly helpful when a piece of legislation comes up in which my child is directly affected.
Support: When we had a problem in our community, we discussed it, decided if it was worth pursuing and if it was made a plan to address the problem. Recently my son had an issue with a playground surface that was not accessible to him. He drafted a letter in which we mailed to those that had the authority to change it.
Responsibility: My son knows in a general way the goals on his individual school plan and when he thinks something is not right he discusses it with me. If there is a problem or violation he is encouraged to bring it to the attention of his teachers.
It has not always been easy for me to let go of the reigns and allow him to discover the independence he will need. I have had to be open and willing to share my child with a community that may or may not accept him. I have had to let him discover some of the obstacles he will face as an adult and sometimes that is painful. I have had to put aside my own expectations and ask him what is important to him. And I have had to remind myself that this journey of being a person with a disability is his to lead, and I am but a special guest on his journey. I am encouraged by the things he is learning and certain of the action I am taking. I have no doubt that he will be OK, that he will have the tools to interact in his community and he will be just fine living as an adult without me. It is the foundation I am laying right now at a young age that will make this a reality for him.
So... When should I begin to teach my child to advocate for his needs? Right now. How can I instill in my child the principles of self determination? Through including him in activities in which he can practice the principles. What role should I play in my child’s life as he grows toward the independence of adulthood? The role of teacher, supporter and model.
It is a wonderful journey and one in which I am privileged to be a part of!
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