What We Can Do
This Wasn’t On My Bingo Card
This wasn’t the post that I was planning to write for this week. I was super excited to write up and share about my favorite local coffee shop…and that will come, but probably next week. Instead, I want to share a few things from my heart. Things that I do not want to be silent about even as I know they may be uncomfortable for some of you to read. I ask you, please, grab your favorite cup of whatever, settle in, and read a few things that are near and dear to me. For the record, these are 100% my views as I share some of me and my family’s lived experiences. You may or may not have seen the news or saw some news clips about the statements made by Robert F. Kennedy, Jr. regarding autism this week. For clarity, RFK, Jr. is the Secretary (top leader) of the U.S. Department of Health and Human Services. The department’s mission, as stated on their website, is “ to enhance the health and well-being of all Americans, by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.” I also want to be clear that I 100% know there are amazing, educated, and wonderful people working at the Department of Health and Human Services. And I can also take a major issue with the dangerous words their leader has said. In case you did miss it, RFK, Jr asserted this week in a press conference that “autism is a disease”, that people with autism “destroy families”, and that, among other things, “autistic people will never be able to hold a job, pay taxes, write a poem, or play baseball…”. These things were said while sharing a plan to devote more funding to finding the “cause of autism”.
A few things from my heart:
Much of what I want to share today isn’t all my story to tell. Our child, who has a dual diagnosis of Autism and ADHD (often seen as AuDHD), is old enough for me to want to protect and honor that this is their life - their story - that they get to tell in their own time, if they choose to. But what I can and will share are a few things that the last 7 years of parenting our kiddo, advocating to change systems instead of changing our child, fighting (hard, at times) for support to leverage the field of education have taught me. And what I wish RFK, Jr had used his considerable influence to focus on instead.
Kids with autism do not break families. Is parenting a child with autism or any other neurodiversity easy? Absolutely not. It’s literally the hardest thing I have ever done. Is the divorce rate for couples who parent additional needs children higher? 100% yes. Is this the child’s fault? No. Families and marriages are complex and messy and just plain hard at times. But let me clear: Kids with autism do not break families.
Our child has played so many sports over the past 5 years of being old enough to participate in team sports. It’s been one of the best ways to help them learn, grow, and continue to adapt. And guess what?! They’re freaking good at sports! But their worth is not measured in how many soccer goals they score or basketball shots they make. We work just as hard with both of our kids to focus on sportsmanship, listening to coaches, the importance of practicing, and so much more.
Our child has already had their first paying seasonal job…walking and watching dogs for friends and neighbors. And while their income was much below any taxable level, they did put some into savings and thoroughly enjoyed shopping for Legos with that hard earned money. The pride that was on their face as they checked out is a moment I’ll never forget. And no suit in Washington, DC ever gets to take that away or diminish its importance.
Our child is not limited by anything other than what their imagination, dreams, and hard work can create. It’s me and my husband’s job to continue to advocate for and fight to change systems that are not designed for people like our amazing kiddo. And fight we do. One thing I will never, ever be okay with is anyone equating ANY human’s worth by what they CAN’T do. This is a narrative that must be changed.
Let’s Get Coffee
If I were to have a cup of coffee with RFK, Jr., well, I’d have a lot of questions (this should shock absolutely no one reading this, ha!). I also have a lot of ideas and suggestions for what would ACTUALLY help people with autism and their families. You see, before I was a Momma to an Auwesome Kiddo, I was an educator in special education and school counselor for 18 years. I am acutely aware of how complex the education system is for families. As a parent, I taught myself (and my husband) how to navigate the medical system to find the right doctor who would actually listen and could help us learn to better understand our child. Don’t even get me started on the community program supports that we tried to access but couldn’t for a veritable plethora of reasons. So yes, I have ideas and solutions to propose. Here’s a few:
As you can imagine, in the last 48 or so hours, I’ve read a LOT of articles and posts online. One statement that has really stuck with me is this one, “Stop chasing causes. Start changing systems.” If you were talking about cancer, I would 100% tell you to please, please keep chasing causes. Cancer is a disease. Please keep chasing that cause! Let’s stop chasing the “cause” of autism - it’s not a disease - and please start changing the systems to better support folks who are autistic and the families/caregivers who advocate and care for them.
Build a better infrastructure of support. We live multiple states away from the family members who are the most involved and supportive of our little family. We have some amazing friends who step in to give my husband and I some respite and who intentionally invest in both of our kids…and it’s still hard. (You can read more about that here!) There are programs that exist to give additional support to families like ours but the waiting lists are years long or we don’t qualify for various reasons. Build programs that actually help families. All families.
Work with educators, school leaders, faith community leaders, sports program leaders, etc to better understand the strategies and information of how to best support, teach, coach, and interact with kiddos and adults who are autistic. This can come through researched, evidenced based, best practice programming. Or you know, just listen to parents who are the experts on their kids and who have advocated for them for years.
What We Can Do
I want to end with helping you understand a little more about what our experience as parents is with our kiddo and all that they CAN do. You see to me, this is far more important than hearing someone who doesn’t know my child tell people in general terms what autistic people can’t do. Buckle up. Here we go:
Build amazingly complex Lego sets.
Do more complicated math in their head than I can do as an adult (who struggles greatly with numbers, but still)
Tell the funniest jokes.
Be their sibling’s biggest protector at school and annoy the absolute crap out of them at home.
Gather all the friends on our street and organize weekly sports games.
Read, read, and read.
Name a countless number of Pokemon, Ninjago, and Minecraft characters and facts.
Memorize research presentations and deliver them with growing confidence.
Be so patient and gentle with younger kids.
Stand up for injustices that they see around them and advocate with school leaders to change policies.
Have the confidence to believe they will one day play in a soccer World Cup. And who knows, maybe they will!
I could keep going, but I think you get the idea. I don’t want my children, either of them, to grow up in a world where they’re limited by what people tell them they can’t do. I want both of them to know that they are incredibly smart, brave, and wildly loved, even when those around them don’t quite understand them. I want them to know all of those things so that when they are faced with comments like the ones made this week, they roll their eyes, shake their heads, speak up, and keep being awesome. That’s my goal as their Mom…while changing systems to support both of them along the way.
Mr. Kennedy, your language is dangerous and harmful. Do better.
With all of you amazing parents and caregivers in the chaos,
JoEllen