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

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!

Let me first dispense with the general facts about me. I am middle age, have been married for 20 years and have three sons, Ryan 18, Andrew 12 and Brendon soon to be 9. I have been through, like anyone else my age many ups and downs, twists and turns in the journey we call life. This blog will speak to my journey toward acceptance and joy through the challenges of raising a child with a disability, being a mother of three sons and being married 20 years.
Brendon my youngest son has muscular dystrophy, a genetic condition present at birth that doesn't allow his muscles to keep up with the growing demands of his body. He travels by a power driven wheelchair, attends a regular elementary school with an assistant, and enjoys being active. He is healthy, filled with joy and courageous with an unending supply of patience. He is the happiest, most content person I have ever known. He is a continual source of amazement for me and all who know him.


I have set out to achieve an adventurous goal: TO RUN THE VIRGINIA BEACH 1/2 MARATHON WITH MY 18 YEAR OLD SON AND MY 9 YEAR OLD SON WHO HAS MUSCULAR DYSTROPHY, with my husband and 12 year old cheering us on. Ambitious, maybe, crazy a little but it can be done and has been done by others. I want to cronicle our progress toward the marathon finish line and beyond. Join me and share your experience and inspiration with us on this journey!