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The Value of meditation in working with developmental disabilities

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I’d like to present this research article as an experience and an educational reference for anyone who has someone with a developmental disability in their life. My experiences through this project, which are described below, show that regardless of communication or physical abilities, we are all the same at heart. Heart connection and experiences are in all of us, and if we tune ourselves to that, there is no difference between someone with a developmental disability and someone of typical development. Please enjoy.

My path in working with people with disabilities began very early in life at the age of nine. Because of this, developing empathy for people who appear to be different began very young. I grew up in Connecticut with parents who owned a human service agency called Brian House that supported adults with disabilities in residential and vocational programs. At an early age I started working for my parent’s agency and found that I was a natural at working with people with differences. The thing that felt natural was the ability to understand and communicate with someone in non-traditional ways. This could be identified as communication through the heart. Having people of all kinds of differences in my life from the beginning, I never saw a big disparity between those with special needs and those of normal development.

When I was a teenager, my summer job was to run a landscaping business with a group of people experiencing special needs. One summer, there was a high school teenager with extreme social anxiety that joined the group. Because of his extreme social anxiety he was home schooled since he couldn’t focus on studies being around other people. He first arrived to join our landscaping crew needing a lot of coaxing to even get out of his moms car. While working side by side form 8AM-4PM for the next week, he didn’t say a word to me. All the while I was connecting to his heart. I created a container that was safe for him to open up. After a week he began talking to me. He had a high level of interest in antiques and that was what we talked about. Hand radios were his favorite. Over the course of the three month summer of working together, I learned that he was very intelligent but afraid to get his driver’s license because he didn’t like to be around people in crowded places such as the DMV. I asked him if I could take him there, just to show him that it was nothing to be scared of. Every day we would drive to the DMV, taking only a few steps in until we decided it was enough for that day. Eventually he became comfortable enough with me that I was able to introduce him to friends. He did end up getting his drivers license, enrolling in school and eventually completing high school successfully. His family was so excited and couldn’t believe it. For seventeen years they had been trying to enroll him in school. The dramatic shifts he had when feelings safe were so amazing, I’ll never forget it.

I worked in situations like this from age nine to 25. At the age of 25 I moved to San Diego and did sales for a year, realized it wasn’t for me and returned to working with people with developmental disabilities. Through the years I have had many experiences like the one above in my life; in fact it is what I continue to do now. The basis of my work is containing others experiencing challenges.

Jumping forward, I co founded Xcite Steps at the age of 26, at which point I was back in the field of working with people with disabilities. When I began to learn remembrance a form of meditation and inner spiritual Sufi practices, it changed the way I was able to contain my own heart the way I do for others. The mercy had always been able to flow through me, but not necessarily to me. Through these experiences of love, patience and ease I was able to heal many parts in my own heart and these qualities began to grow and remain within me. What I began to notice was that this shift in my heart began to affect people that I worked with. When there was a moment of dis-ease, just being present while doing the remembrance silently, their emotions would become subdued and they were able to re-establish their own containment much of the time. This began to draw many questions for me—how could I do this going forward in my work? What is the most effective and merciful way to work with people with disabilities?

For the past five years, while studying Sufi healing and simultaneously working with the disability population. I have been slowly integrating and developing Sufi practices into my work—subtly. In a sense I have become more able to be carried by God in my work and also see them as being carried by God too. When I had the opportunity to write this article, I really felt drawn to speak about the work that I have done previously and the evolving process of bringing it into my work.

An overview of my research

In the fall of 2009 I began to ask a family with a 30 year old son named Nick that experienced Down syndrome for permission to work with him with Sufi healing and spiritual practices. I told them my goal in working with Nick was to help him process his issues a little bit better by working with him through Sufi practices and to see that there is no difference between the human heart—regardless of any disabilities. The heart can be present no matter what. This is true for physical and cognitive disabilities. They agreed to these terms in my working with Nick. I would see him 10 hours a week over the course of 4 or 5 months. We would meet together in his apartment, in his living room which was a quiet space. We called this process a “check in”. I started with a slow introduction. I’d template the type of check in we were looking to have by first checking in myself. I’d describe to him the type of emotions I had moving through me, if I was distracted, how I felt my connection to God was doing, etc. This gave Nick a template to work from in sharing how he was in the moment as well.

Nick is someone who is very high functioning and has a huge heart. In general, I find this to be true of people who are diagnosed similarly. People diagnosed with Down syndrome often really know love and have big hearts. Nick really knows love, when he doesn’t feel love he reacts to that. When he feels safe and can open, he likes it. He loves to hug, embrace and show his affection. Nick lost his mom as a teenager and it was a very tragic loss for him in his life. His sister has also claimed to have “disowned” him as a brother. These are his two most challenging issues that Nick brought up during our time together. Nick has often discussed the heartbreak of these two significant, life-changing circumstances. From what Nick has shared his mom was a critical person in his life. She gave him affection and love. When she passed, this was a very difficult thing for Nick as well as his family to transition with. Nick still talks regularly about missing his mom, and how he feels her spiritual presence in his life. He writes letters in his journal and speaks to her spirit in his mind. He feels she is like an angel that looks over his shoulder. She is very much still with him in his consciousness. His sister was another big heartbreak for him. A few years after his mom’s death, his sister started to become estranged to their immediate family. She had some really strong words towards Nick about their relationship, and the fact that she no longer wanted to be in relation to him. They haven’t spoken in several years. I will describe specifically how we addressed these issues later.

I introduced these healing practices to Nick as a way to heal these wounds in his heart, and to help him feel at rest and ease. I asked him questions about what he felt God was, what his relationship to god was, what religion he was, etc. He responded by saying that his mom is his angel and that communication with his mom is his spirituality.

We also processed his daily issues, talked about God, what God is and his relationship to God. We worked a lot on patience, gratitude, forgivingness, mercy and, compassion.

Working with Nick about his mother’s death was a very heart opening experience. His mom’s death created a very deep wound in Nick’s heart. He would definitely talk about it every day if given the opportunity. It seems to be something that he goes over and over in his head. Nick sometimes dances around issues. It’s challenging for him to say things directly, so to get him to say exactly what he feels about his mom’s death was, at times, challenging. The beginning stages of this process were really about helping him to express his authentic feelings about this matter. What we uncovered was that Nick’s mom was his “rock” in his life, and the one person that he felt the safest with. She understood him. When that was taken from him it really shook his reality. When Nick was able to get in touch with those feelings and express them. Nicks bodily expressions always seems to ease and loosen when we used remembrance. It also helped to have someone empathetically listen to him while he expressed these feelings. Over the course of our time working together on this topic, I noticed that he brought his mother up less and less. In the beginning this was always the topic on the forefront, but as time went on and he was deeply heard and empathized with, this issue seemed to be less charged. It was really important for Nick to hear that it was a beautiful thing to keep his mom’s spirit still alive in his heart. He seemed comforted by that.

In working with his sister’s disengagement with the family, I found that Nick was very confused about the issue. He feels he may have done something that caused his sister to remove herself from contact with him. He did bring up examples of what he did wrong in his relationship with her. He often would go in her room and take things without asking. He thought this may have created a dislike of him. He doesn’t really know why, so he creates stories in his mind. It’s been several years since they have been in contact. The loss of his sister also is an issue he processes often. What we used here was a forgiveness technique. We simply god for forgiveness for anything that Nick felt like he had done that hurt his sister’s heart, and we also asked for anything that his sister did to him. Through asking God for forgiveness for both him and his sister, Nick did state that it helped him to feel better about his feelings about what he did to his sister. He is still left with a lot of anger towards her, with a lot of “why” questions.

Over the course of several months, I spent time with Nick every week working on these things. We would document his course of progress and take mental notes on his changes as well. I noticed the shifts in him, the shifts in me and how they correlate. Nick has been a mirror for me. If I was distracted and not present, he would reflect that to me. If I was present, he would be much more present and have much more of an ability to be at peace and connect with that peace.

Some Results:

Nick has a sleeping disorder. He communicated to me that he felt there had been an improvement in this ability to sleep. He was falling and staying asleep more easily. He felt more able to communicate his needs to me and his family, which he sometimes has a hard time doing. This, to me, is a result of the trust and bond that was created between us in these processes, as well as our processing the things he needed to talk to his dad about beforehand. On a larger scale, I believed that it helped Nick’s relationships with his family. Nicks favorite practices during our time together were the forgiveness and the remembrance. This is something that we have both agreed he will be able to continue on his own.

From my end, I really learned that when I take the time to center myself and open my heart through God, my container to support someone who has processing issues becomes much greater. My patience and ability to be more attentive and supportive widens. I feel more at ease, and I feel a deeper connection and love for the other human being.

The Value of meditation in working with developmental disabilities

Through my work and study exploration with Nick, I have come to realize what an important tool this can be for anyone who is working with someone that experiences a disability for several reasons. First of all, there is a high burn out rate in social work and those working with people with disabilities. The practices that Sufi Spiritual practices offers have an extremely renewing and revitalizing quality. It also brings ones awareness back to the recognition that God is the Real container and knower of each person capability and destiny. In my experience, much of the stress that I feel in working with someone with a disability is related to me feeling that I need to figure out what the best and most perfect way I can support someone to help them reach their full potential. When doing the practices, I am able to let that feeling go and relax into the arms and sensations of God. It’s extremely rejuvenating.

The second reason I believe this to be an important tool for anyone working with a disability is that communication is often the greatest barrier between someone with a disability and the rest of the world. Typical communication often will not work under these circumstances. Through the practices, one develops a more subtle sense of others and their hearts, which increases one’s ability to perceive and understand someone who is unable to communicate in a typical way. In my experience, people who experience disabilities are just like typically developed people, in the sense that when they feel understood and recognized they begin to feel safe and their heart opens.

The third reason I think that Sufi practices can be an important tool for anyone working with someone who experiences a disability, is that people with communication disabilities are often distraught and doing practices may help to calm and nurture their hearts. People with these disabilities are often misunderstood and if someone simply takes the time to do a little bit of remembrance before speaking with them, the connection is available and can be made. Often times this is the case between parents and children with disabilities. Parents often become angry when their child doesn’t understand them and creates many stresses in their home. These practices would be great for parents with children with disabilities.

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