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:
- 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.
- 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.
- Order “The first 100 day survival tool kit” from Autism Speaks to give to new parents.
- Develop your own community resource guide to support special needs.
- 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