“I might be laidback, but I can lean forward real quick.”
Confrontation has never been my strong suit! By nature, I am a pretty passive person who gives people the benefit of the doubt. So to put on my “advocate” hat is not easy for me. But for my girl, I’d do anything… this quote/mantra helps hype me up!
The Journey of Raising a Child with Down Syndrome
When I was pregnant with Maya, I was afraid I would see the absolute worst in humanity. That I would come across people who looked at us differently, or would treat her as a second-class citizen, or would say something derogatory, or use the “r” word, or tease her… or, or, or…
That is a heavy load to carry on your heart. As a mom, all I want to do is protect my girls from the ugliness that is out there. Having a child with a disability scared me. Not because of the disability, but because I didn’t know how the world would treat her.
I am so thankful to report that the hate and ugliness are extremely rare, but they do still happen. The beauty, inclusivity, acceptance, love, and joy are abundant and obviously where I want to give my attention too. Life is hard, why make it harder by focusing on the negativity, ya know?
Standing Strong as an Advocate
But, back to my new mantra, I have been steeling myself so when I do encounter the not-so-great stuff, I can stand firm and tall and advocate for my girl. She has worked hard every single day of her whole life so when I need to step up to the plate, I can do hard things for her too.
So yes, I am laid back… but I can lean forward real quick.
Tips for Moms of Children with Down Syndrome
Here are some tips that have helped me in advocating for my daughter and might help you too:
- Educate Yourself: Knowledge is power. Learn about Down syndrome, the rights of children with disabilities, and available resources. Join support groups and connect with other parents who are on the same journey.
- Communicate Openly: Share your child’s strengths and challenges with teachers, caregivers, and peers. Open communication fosters understanding and inclusion.
- Stay Positive: Focus on the positive experiences and milestones. Celebrate every achievement, no matter how small it may seem.
- Build a Support Network: Surround yourself with supportive family members, friends, and professionals who understand and respect your journey. Online communities can also provide valuable support and advice.
- Advocate Confidently: When faced with discrimination or ignorance, remember your mantra. Stand up for your child and educate others about Down syndrome. Your voice is powerful.
Resources for Support
For those seeking additional resources and support, here are a few organizations that can provide valuable information and community:
- National Down Syndrome Society (NDSS): Offers advocacy, support, and information for individuals with Down syndrome and their families.
- The ARC-Advocates for rights of people with intellectual and developmental disabilities throughout their lifetimes.
- Highest Potential Pathways: Pam is a coach that helps and empowers parents of children with developmental disabilities. Advocates for the rights of individuals with intellectual and developmental disabilities.
- More resources can be found here.
Embracing the Journey
Remember, you are not alone on this journey. There are many moms out there facing similar challenges and triumphs. By sharing our stories and supporting one another, we can create a world that is more inclusive and loving for our children.
So, to all the moms out there, laid back or otherwise, let’s lean forward together and make a difference. Our children deserve nothing less.
