Be the Change

by Lori Ciccarelli-Stotko, MPS

“Be the change that you wish to see in the world.” – Mahatma Gandi

Too often we are quick to point the finger blaming others. “Why can’t those people understand my situation? Can’t they try walking in my shoes?

We as parents of special needs children tend to be less tolerant of our church families and school professionals when they don’t know how to deal with our kids. Sometimes it comes down to the fact that others are just not equipped. If we have the knowledge, experience and tools, it is our responsibility to raise awareness, to train, to help equip others. When my son entered high school, the special eduation team and professionals admitted, “Lori, we don’t know what to do with autism.” Time to equip; time to “be the change!!”

Become a Resource
According to Karen Siff Exkorn, author of the Autism Sourcebook: Everything You need to Know about Diagnosis, Treatment, Coping and Healing “Always remember that you know your child better than anyone else…getting our child the help that he or she needs is a collaborative process.”

Two decades ago, most of my community didn’t know what to do with autism; myself included. This created an amazing opportunity to develop a support system and inspire others. Why not include others on my journey? My son may be one of the first with autism to live here; however, he wasn’t going to be the last. My philosophy is not to blame but to come up with solutions. Why not be instrumental with creating a caring community for the special needs populations? Be the change!

It didn’t happen over night. I was in denial for many years trying to digest my situation. As mentioned in previous blogs, it was when I finally accepted my son’s diagnosis that doors started to open because I opened those doors. Why not include others through that doorway?

It Takes a Village
Many years ago, I started a “Parents of Autism” support group inviting professionals to share with us their expertise. The support group also provided a platform for parents to not go it alone. We cried together, we exchanged ideas and resources, and we accompanied each other at IEP meetings. The support was extremely helpful and was part of the healing process. Parents came together in support of each other.

Uncertainty of the future is scary; we don’t need to go on this journey alone. Let’s advocate together for the future of our special kids! One tip I stress the most, remember to stay focused on the mission (the special needs child) and don’t let personal agendas get in the way. We need to work together in unity in support of our children.

A Few Supportive Ideas:

  1. Host a community meeting with local clergy to discuss how the local churches can provide support or a special needs ministry. Respite care to the special needs families can be a huge help.
  2. Team-up, buddy-up with new parents of special needs children. Remember what it was like getting the news for the first time? Be a mentor creating a support system.
  3. Order “The first 100 day survival tool kit” from Autism Speaks to give to new parents.
  4. Develop your own community resource guide to support special needs.
  5. Start a chapter of the Autism Society of America (call 1-800-3-autism or visit www.autism-society.org). There are resources available that include bylaws, newsletters, education plans for schools, social events and conferences.

Highly Effective People
World renowned author Stephen R. Covey of the #1 national bestseller book, The 7 Habits of Highly Effective People encourages habit #5 “to seek first to understand then to be understood. This involves a very deep shift in paradigm. We typically seek first to be understood.” We need to understand first that not all professionals, special education teams, friends, community and family are equipped to meet the special needs of our children. We need to raise awareness, help train, and equip. Be the change!!

Be the Change at a Higher Level
Even at the State level, you can “be the change.” By becoming a resource to parents and professionals over the years, I learned I had a voice to bring local issues to the State level and so can you. I applied for a seat on the Board of Directors for the State Council on Developmental Disabilities representing my county and I was appointed by the Board of Supervisors. YOU CAN,TOO.  Apply to represent your community for your Area Board or for a Governor’s seat appointment. You can make a difference in the lives of our special needs’ populations.

Let’s join hands and use our experiences for the common good. Let’s have the courage to “Be the change that you wish to see in the world!

“Be the Change” article originally published at Special-ism.com

 

The Gift of Forgiveness

“To err is human; to forgive, divine.” – Alexander Pope

With each New Year, my resolutions are focused on trying something new or focused on a character-building quest. One of my resolutions for 2012 was to learn more about the act of “forgiveness” as I am challenged. It isn’t easy for me to forgive. I have used it at times as leverage. “Hope someday I can forgive you!” I have a difficult time separating forgiveness with condoning. I feel that if I forgive then I must be condoning behavior or actions.

Ten years ago, my son with autism was attending a public junior high school and was bullied relentlessly. As a result of his challenges with communication, he drew a picture of himself being hung. Above his head, he wrote the students’ names of those that were harassing him along with the words “autism a pariah.” The picture got into the hands of the parents of those students and they reacted saying the picture was a “hit list” of the names my son was going to target. Those parents would not allow their children in school if my son was there. The school authorities looked at the situation as losing “many students versus one” in attendance; they did not allow my son back for a few days.

I requested a parent meeting to explain this misunderstanding, but not one parent showed. My son obsessed. He wanted to clear up this mess by writing each parent a letter of apology for scaring their children; never his intent. He explained that the picture was expressing his feelings due to the treatment he was receiving. It was clear to me, the school psychologist and his social worker. Unfortunately, the parents reacted before getting the facts.

 

My Research on Forgiveness
The definition of forgiveness is to excuse an offense or pardon. During 2012, I read many books on my quest to forgive. I understand that when we don’t forgive, we hold feelings of bitterness, resentment and hate. According to neurosurgeon and author of Gray Matter1 , Dr. David Levy states “The idea that bitterness was the source of health problems would not have made sense to me earlier in my career, but over time I became convinced that one of the greatest thieves of joy and health is the unwillingness to forgive the people who have hurt us… Bitterness kills like a disease. Releasing bitterness can dramatically help the underlying causes of many physical ailments.”

I thought forgiveness only had spiritual benefits. Dr. Levy explains further that forgiving others is part of whole body healing. When we don’t forgive, it affects us spiritually, emotionally, and physically.

Unforgiveness contributes to chronic illness. According to the Mayo clinic2 , people who hold grudges have increased blood pressure and heart rates. The benefits of forgiving include less anxiety, stress and hostility lowering blood pressure with fewer symptoms of depression, and will lower the risk of alcohol and drug abuse. Forgiveness can change ones life by bringing peace, happiness, emotional and spiritual healing.

My quest included a look into the Bible. As I researched forgiveness, these biblical scripture stood out.

“Be kind and compassionate to one another, forgiving each other just as in Christ, God forgave you,” Ephesians 4:32

“Do not judge others, and you will not be judged. Do not condemn others, or it will all come back against you. Forgive others, and you will be forgiven,” Luke 6:37

“With the measure we use, it will be measured to us,” Matthew 7: 2

In the book The Blessings of Adversity, author and US Senate Chaplain Dr. Berry Black states that receiving divine forgiveness is linked to our willingness to forgive others. In Matthew 6:12, it states “forgive us our debts as we forgive our debtors.” We need to cancel their debt to us and release them to God. Freedom. “Make allowance for each other’s faults, and forgive anyone who offends you. Remember, the Lord forgave you, so you must forgive others,” Colossians 3:13.

Christ’s Spiritual Discipline The book of Mark is a beautiful timeline of Christ’s life highlighting His spiritual practices; He is our perfect role model. Christ’s spiritual discipline of forgiveness is one I want to emulate. He was spat on. Ridiculed. Murdered. Yet He forgave, “For they know not what they do.”

That junior high incident affected both my son and me. The hurt and humiliation followed us for several years. Why didn’t those parents get the facts first before reacting? It felt like malicious intent. Bullying. Role models for their children. Many don’t understand the ramifications of hurt that can scar for a lifetime. “For they know not what they do.”

The Gift of Forgiveness – Freedom The words from the song Forgiveness by Matthew West hits home. “When the pain they caused is just too real…set it free…forgiveness…the prisoner it really frees is you!” Freedom.

My year of 2012 ended with a sermon on forgiveness; God’s timing is always perfect. The pastor (my brother) said “Forgiveness is a supernatural act of God. Surrender. Let go and let God.” At that moment I realized I can not do this alone. “To forgive is truly divine.”

 

Healing of the Heart – A Call Into Ministry

Lori portrait Feb 2013

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28

While I was attending a memorial service for a community member, a local minister made his way over to me. He shared that he believed I had a gift for healing; a healing of the heart because of my compassion he often witnessed.

A gift for healing; a healing of the heart. What could this mean? Over time, I prayed fervently asking the Lord to reveal His plan providing insight into His purpose. Over time, His plan unfolded with clarity during times of my own healing.

Spiritual Care – Spiritual Advocacy

A very close friend and coworker suddenly became ill. She was fighting for her life. She called and asked if I would pray with her in her hospital room before being airlifted to a larger medical facility.  We laid her burdens before the Lord. After she was transported, I felt compelled to continue praying over her so I traveled 150 miles to be with her. However; by the time I got to the hospital, she lay in a coma. I held her hand, but there was no response. As I read scripture and prayed over her, she began to breathe heavily making a funny noise as if trying to communicate; I felt a deep soul connection like  never before.

It was at that time I realized my ministry – my calling; spiritual advocacy, spiritual care. Supporting others spiritually. I was happy to be with her experiencing a peace and calmness wrapped around the two of us. As my visit concluded, I told her husband I would return the following week to continue praying over her as I felt compelled to be with her again, to care for her spiritually, to hold her heart.

The following week I continued to pray. My faith was unwavering. I was getting excited just to be with her again; to provide spiritual care. As I prepared for my trip, I received a call from her family that the doctors did not expect her to make it through that day. And sure enough, within a few hours she passed away. My “soul” friend got sick and was gone within three weeks.

As the sadness sunk in, the Lord reminded me that this was my calling, spiritual care. However, I questioned my faith. Why wasn’t she healed? God spoke loud and clear to my heart, that my job was to provide spiritual care & support, not to fix her as that was His job. And I was not to question Him. My friend could have suffered for days, weeks, months. I did not know all the information under my little scope of insight. God’s understanding is comprehensive and I needed to trust Him completely.

“For as the heavens are higher than the earth so are my ways higher than your ways, and my thoughts than your thoughts,” Isaiah 55:9.

God reminded me, we live in a fallen world, bad things happen; it’s a global issue. But Christ overcame the world and through Him there is hope. God can bring good out of bad; His redemptive love.

After a couple of weeks of my friend’s passing, her husband dropped in for a visit bringing gifts; books from her library he thought I would enjoy. Her books spoke to me confirming my call. Pastoral Care. Hospital Chaplaincy. A Healing Presence. Through trials and difficult circumstances, God provides opportunities for us to grow, to serve and honor Him.

Before my friend became ill, we both were enrolled in a certification course on spiritual direction, formation and leadership. She was adamant about introducing spiritual care to whole body healing at the hospital where we worked together. However; I was afraid now to bring this program forward alone in a public entity as we were forbidden to even talk about God. I prayed over the next several months; never in the 14 years of employment as a Director in Administration had I prayed asking the Lord to show me how to serve Him at work until now. The Lord impressed upon my heart that He had been preparing me, equipping me and strategically placing me for such a time as this. I decided to finish the two-year certification program and rally to bring spiritual care to the hospital while He opened doors and softened many hearts.

“The Lord Himself goes before you and will be with you. He will never leave you nor forsake you. Do not be afraid; do not be discouraged,”

Deuteronomy 31:8.

 

Spiritual Care – Caring for people’s hearts

During the first year of the hospital Spiritual Care program, there were 900 spiritual care encounters which not only included care for our patients, but for the staff and physicians as they all were reaching out for spiritual support. Within the very first month,  there were 65 patient visits with the largest month hosting 135 spiritual care encounters. I had to start training volunteers to help me. Then the program expanded to include partnering with local churches and community service clubs to assist patients after discharged providing meals, running errands, and continued support through prayer. (By the time I retired 7 years later, the program grew so large that I became the manager of spiritual care and Spiritual Care Chaplain full time with an average hosting 1,400 spiritual care encounters annually. During that time I continued my education in grief recovery and crisis intervention developing an End-of-Life program and facilitating bi-monthly Grief Support and Cancer support Groups.)

As I reflect back, the spiritual care program has been extremely effective; however, I had no idea the effect it would have on me. I am not the same person. My life has changed dramatically; my heart has transformed. I am providing spiritual care to community members I thought had wronged me, those I thought would be obstacles for this program; those I feared.  But God had a much bigger plan.

“For I know the plans I have for you,” declares the Lord. “Plans to prosper you and not to harm you. Plans to give you hope and a future,” Jeremiah 29:11.

Now these people are my patients. I am kneeling next to them, holding their hands, praying with them, and talking with some about salvation. Our hearts have aligned through the power of the Holy Spirit. 

This program has changed my life through a cleansing of my heart. It has provided a gift to me, my ministry – a healing of  the heart …

a healing of my own heart… Spiritual Care.