Awareness All Year
Since April is Autism Awareness Month, I’ve been asking myself: How can we, as siblings, show support and raise awareness of autism in our communities? And not just in April, but throughout the year? With this in mind, I’ve compiled a few suggestions that can keep siblings active as advocates year-round. Consider it a calendar of sibling support!
Attend a statewide budget hearing and speak out for your sibling, and others with special needs. If you can’t attend and speak in person, write a letter to your representative, asking that they vote in favor of measures that provide support and protect equality for individuals on the spectrum. For more on current issues and legislation, visit the Autism Speaks Advocacy page, or the Arc of the United States’ Action Center.
Send a Valentine to your sib, telling them what you love best about being their brother or sister. In the process, remember to look for love in the ordinary spaces of your days. You might also read stories from fellow sibs, and see how they’ve found beauty in difficult times.
In preparation for tax time, check in with your parents or guardians and ensure that all relevant guardianship, special needs trust, and living will documents are in order. If your parents haven’t yet done so, encourage them to explore public funding sources for your sibling’s care, and thereby ensure that your sib is receiving appropriate benefits. This is a vital—and often-overlooked—aspect of caring for our siblings.
Celebrate Autism Awareness Month (and National Siblings Day) by connecting with other sibs. Check out The Sibling Leadership Network to learn more about supporting your sib throughout their life, connect with your state chapter, explore resources, and more.
Honor my brother Willie; his birthday is in May! (OK, maybe this isn’t something everyone celebrates … but it is a big deal in our family.) Mark your sibling’s birthday with songs, gifts, and merry-making; let them know how much they mean to you.
If possible, plan to attend your siblings’ IEP meeting, in whatever month it takes place. If you’re not geographically proximate, you can still contribute; you could volunteer to assist your sib in a goal. For example, if your sib has a connections goal, you can commit to talking with them on the phone once a week.
Consider attending an autism conference to learn and engage with the community. For example, the Autism Society’s 44th Annual Conference will take place in Pittsburgh, PA. If you attend, you’ll have a chance to connect with professionals, researchers, and advocates, as well as several members of the AA16 team. Kerry Magro will be presenting a session entitled, “Defining Autism: From Nonverbal To National Speaker,” and I’ll be presenting, “Challenges and Joys Of Being a Sibling (and How You Can Help).” We’d love to see you there!
Use this time to help your sib follow up on health care concerns. Health and wellness is a year-round priority, but if you’re in a caregiving role, make sure that your sib has appropriate insurance, and that doctor’s visits are scheduled as needed. (This is also a good time to review the condition of their medical and adaptive equipment.)
September may mean back to school; if so, send a note of encouragement to your sib as they begin another year. You might also investigate postsecondary options for your sib.
Halloween is here; it’s time to get goofy! Scan a picture of the two of you when you were young and dressed up as fairy princesses and dragons. Share a laugh together.
Give thanks for your sibling, and consider donating to an autism-focused organization. For example, if you’re passionate about employment, make a donation to a non-profit or small business that is committed to creating engaging, community-based workplaces for young adults with autism. For example, this past year I purchased holiday gifts from organizations that employ adults with special needs. Furthermore, I told recipients about the organizations, and why I feel strongly about supporting them.
Take a break, rest, and enjoy the holiday season with your sib. Your presence is the greatest gift you can give.