All too often, we are quick to point the finger and blame others. Have you ever found yourself saying something like:
“Why can’t those people understand my situation?”
“Can’t they try walking in my shoes?”
We, parents of children with various isms, tend to be less tolerant of our school professionals, other parents, coaches, and even church families, when they don’t know how to deal with our kids.
Just Not Equipped – Advocate
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 advocate, raise awareness, train, and help to equip others.
I can still recall when my son entered high school, the special education team and professionals admitted, “Lori, we don’t know what to do with autism.”
It was then that I embraced the idea that it was high time to equip. It was time to “be the change!”
Explore More >> One Mom’s Experience with Advocacy
Become a Resource – Advocate!
Karen Siff Exkorn, author of The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing, shared in her book, “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 advocate and develop a support system and inspire others. I thought, “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 always come up with solutions.
Why not be instrumental in creating a caring community for children with various isms? Be the change!
It didn’t happen over night. I must admit, I was in denial for many years trying to digest my situation. However, 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?
Explore More >> Learning to Advocate for Your Child
It Takes a Village to Advocate
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 at 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 for many parents. It was incredibly inspiring to watch parents come together in support of one another.
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 exceptional kids!
One extremely important tip to keep at the forefront of your minds is to remember to stay focused on the mission, the child. Don’t allow personal agendas get in the way. We need to work together in unity in support of our children.
Explore More >> Advocating for Your Special Needs Child
Ideas to Create Support
Host a Meeting
Ask your local church or school if they are willing to open their doors to host a community meeting. You can always consider using your local library or school. Invite parents of children with similar isms as your child and begin the brainstorming process. Announce the meeting in the community section of your local paper. Make a flyer and get permission from the school district to disseminate the meeting information to children whose parents may benefit.
Involve Local Clergy
Schedule a meeting with local clergy to discuss how the local churches can provide support to families. Encourage local clergy to create a special needs ministry or tap into an existing one. Perhaps this ministry can offer respite services to exhausted parents on the verge of burn out.
Team-up or buddy-up with new parents of children with various isms. Remember what it was like getting the news for the first time? Be a mentor and create a support system for the new parents on the same journey.
Community Resource Guide
Remember that group of parents that got together to brainstorm? Whatever the ism that brought you together, work with this group of parents to develop a community resource guide to support that ism.
Start a Chapter or Organization
If your child has Autism, consider starting a chapter of the Autism Society of America.
If your child has SPD, consider getting involved with the SPD Foundation.
If your child has Anxiety, consider starting a support group through the Anxiety & Depression Association of America.
No matter the ism – look for an organization that supports it.
If your child has an ism and there is not a national resource, create one! Be the change, be that resource. Brainstorm with your team of parents to develop bylaws, create newsletters, establish education plans for schools, plan social events and educate through conferences.
Need Inspiration to Advocate?
“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 needs of our children. We need to raise awareness, help train, and equip our communities. We need to be the change!
Advocate on a Bigger Platform
Even at your State level, you can “be the change”. By becoming a resource to parents and professionals over the years, I learned I had a voice. That voice brought 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 so many!
No matter the ism, join hands with others in the same boat and use your collective experiences for the common good. Have the courage to “Be the change that you wish to see in the world!”