My son doesn’t have the kind of autism that’s featured as a ‘feel good’ story at the end of a nightly news segment. He has is the regressive non-verbal kind. Completely dependent, Ronan requires constant monitoring and specialized care. That’s because the type of autism he has came with seizures and a host of medical issues. Those medical issues have contributed to developmental and cognitive delays. He’s in a good place now, but I don’t know if his health will bounce back to what it was before he got sick.
Ronan’s healthier baby days are long gone, but the hope I have for this child of mine has not diminished. With all of the setbacks he and I’ve had over the years, and there have been quite a few, you’d think that hope would be the last thing I hold onto. Who holds onto that for as long as I have? I’ve faced more traumatic moments in Ronan’s short 13 years of life than I ever expected to as a parent. From 911 calls, to emergency room runs, to battling doctors, and to unfortunate moments of panic due to Ronan’s wandering, being the parent of a child with severe autism hasn’t been easy. But with help from devoted family and friends, as well as with a lot of faith and a never-quit attitude, I keep going.
Consciously putting one foot in front of the other – even though on some days it would be easier to give up, I walk this autism parenting path hoping and praying that I was doing the right thing for my son. I haven’t always made the best decisions for Ronan in the past and am reminded of that every day. But if I dwell on that too long, we both suffer. So instead, I keep my chin up and focus on what I can do right now.
I’ve done a lot for my child as have many other parents with children like him. It sometimes may not feel like enough has been done to stop the autism epidemic, but together, we’ve moved mountains. Late last week, I was reminded of something our community did four years ago. Do you remember it? It was kind of a big deal. On the morning of November 29th, we got Congress to talk about autism. Not only that, they talked about autism and vaccines. They even dared to link the two together. They talked about that link all day long and aired their conversation for others to hear it, too.
Knowing that vaccines had something to do with my child’s autism, that day was an exhilarating day. For weeks afterward, I thought that the hearing would’ve kick started an epic takedown. Surely it would! The Representatives were onto these doctors. They were onto the fraud and abuse. There were onto something and promised to get to the bottom of things. Since it had been so long since the previous autism hearing, Congress had quite a few things to catch up on and then actually do. Many of us offered to help them and to keep the momentum up, me included.
After rereading a post I wrote about that monumental day, I thought about all that’s happened since then. I thought about all that hasn’t happened as well.
We got another hearing! But what a disappointment it was.
A whistleblower stepped forward! But as with all things government, it’s been a waiting game for something positive to come from their claim since they went public.
We got people to talk about vaccines on TV! But we now have more talking heads pushing vaccine mandates as well as legislators working overtime to take citizens’ personal rights away.
We got people to recognize how high the autism rate was! But we now have an even higher rate than ever before.
The rate was 1 in 88 four years ago. It’s now 1 in 68. And the vaccine schedule? Well, that’s seen an increase in numbers, too. The children’s schedule may have stayed somewhat the same, but they’re coming after adults now – including pregnant women.
So much for getting to the bottom of things. So much for keeping children, including unborn children, safe.
As depressing as some of the past has been, many of us still choose to march forward. We persist. We hope and work and try and believe. We look ahead while also never forgetting what happened to our child. How could we ever forget what happened? It didn’t just change our child; it changed us, too. Some people think that parents like me shouldn’t focus on the past as I tend to do, but I must. We must! When we tell others about that past, they get the chance to use it as a guide. With knowledge of our experience, they can choose to not repeat it. If they choose differently than we did, newer parents could be spared the vaccine insanity that we were not able to avoid, the same one that has somehow been allowed to continue today.
Not too long ago, I thought we were close to seeing that madness end. In the halls of Congress four years ago this week, we moved a mountain. I rode the high from that day for several weeks afterward. That day and all the promises that came with it feels like a lifetime ago now. Some things have changed since then – a few for the better. But when I reflected on how much really hasn’t changed since that hearing in 2016, it feels like we are right back at square one.
Pharmaceutical companies can still manufacture shoddy products.
The medical industry can still pushes vaccines and do so quite heavily.
The autism rate is still at an all-time high, the highest it’s ever been.
And Ronan’s struggles? They are still very present, some of them showing no signs of letting up.
More often than not, it’s taken a fight to get something done – for my son, for our rights, and for our community. It may take another fight to right the wrongs that still exist. Will that stop me? Never. My son’s autism may have changed the way I’ve had to parent him, but I will never lose my fighting spirit. I will never let anyone take it away from me. Since we are stronger when our community works together, I pray no one takes your fighting spirit away either.
Cathy Jameson is a Contributing Editor for Age of Autism.