To Tell The Truth
I had to make a phone call last week on behalf of Ronan. Those calls aren’t usually too terrible to make. But I was not looking forward to this particular one. Pressure was on. If I missed the deadline to get some paperwork updated and back to the group, some of my son’s benefits could be terminated. We appreciate the chance to get some outside help to keep Ronan healthy and safe, so I didn’t want to let the opportunity to stay with this group slip by. Without delay, I set aside one full uninterrupted hour to make the call.
I could’ve mailed in the paperwork.
I could’ve logged on their website and entered the renewal information myself.
I’ve found, though, that with important matters such as the one I was dealing with, it’s better to talk directly to a live human being about them.
I’m glad I did; some of the specific information requested will determine specific allowances. In confirming that Ronan was still delayed, that he still required full assistance for ADLs (activities of daily living), and that he is still currently unable to do much of what his peers can do, I was able to state that yes, we do still need the services, services that Ronan’s previously been granted and also gotten accustomed to. Not wanting to have a lapse in services or lose the continuity in care, I was grateful to make the call. On it, I also got to add my husband as someone who is authorized to view the account and make decisions for Ronan. While I do oversee much of Ronan’s care, I hadn’t realized my husband’s name was not on that official paperwork!
Something else I got to share was the date of disability. Unsure what I’d listed in the initial paperwork we’d submitted years ago, I asked the representative what info she needed. While she read a short blurb of the agency’s definition of disability, I ran over to my file cabinet and pulled some paperwork out. Finding the form sent to us the last time we had to renew, I waited for her to finish talking.
Since it was just a renewal, it wasn’t necessary to go into specifics about how he became disabled. So I referenced the first time I remember being told that my son was not meeting milestones.
“Oh, that was back in December 2004…,” I told the gal.
Could I have added:
…after the flu shot
…and when he had seizures
…and when the doctors didn’t know what to do
…and after we were sent denial letters from other agencies
…and when we were left out to dry.
But I didn’t. I kept that to myself. This time.
I don’t have the same fight in me that I did all those years ago when Ronan got sick. So much has happened since then. And now, I am feeling called to just maintain.
Maintain his health.
Maintain his happiness.
Maintain our family’s needs.
Maintain peace in my heart and my soul and my mind.
Oh, and maintain those benefits and resources that my son relies on.
I’ll always and forever speak up about what happened back in the early 2000s. Some people still appreciate my honest and that of other parents who are still speaking about their child’s vaccine injuries. You have my word that I’ll never shy away from the topic. But these days, the weight of caring for an adult son with many medical issues is a little bit heavy. The lady on the other end of the phone didn’t need to hear all about that. She just needed the basics that had me calling in the first place – that Ronan needs some assistance when we, his family, cannot provide it ourselves.
It can be hard to answer the questions I was asked, “Can Ronan do ___? No. Is he able to ___ No. Will he ___? No.” I will sometimes say “Not yet.” as a reply, but that only softens the blow for a few minutes. After answering one question after another, with No as a typical response, the renewal process was completed. During it, I shared what was relevant and held back information that they absolutely didn’t need to know.
It took one hour and three minutes to get through all the questions and to update other requested information. With it completed, Ronan is remains eligible to tap into their resources. In two months’ time, we’ll find out if Ronan can stay on as a client for another year. Wrapping up the call, when I was asked if I could foresee Ronan not needing their assistance, I quietly said no. I know when to be hopeful and when to express that. As much as my hopeful spirit wished to say yes in that moment, the brutally honest answer was no.
Cathy Jameson is a Contributing Editor for Age of Autism.
The Vaccine Court 2.0: Revised and Updated: The Dark Truth of America's Vaccine Injury Compensation Program
By Wayne Rohde
The Vaccine Court looks at the mysterious and often unknown world of the National Vaccine Injury Compensation Program (NVICP), the only recourse for seeking compensation for those who have been injured by a vaccine. The NVICP, better known as the ”Vaccine Court,” however, is not without controversy.
Established by Congress as a direct result of the passage of the National Childhood Vaccine Injury Act of 1986, the NVICP was supposed to offer a no-fault alternative to the traditional injury claims filed in state or federal courts and was to provide quick, efficient, and fair compensation for those who have been injured by vaccines. The reality, however, is that many cases take several years or longer to complete and require tremendous commitment from families already pushed to the brink of bankruptcy caring for the vaccine-injured family member, only to discover that the end result is manipulated by the government in defense of the US vaccine policy.
A Letter to Liberals: Censorship and COVID: An Attack on Science and American Ideals
By Robert Kennedy Jr.
A leading Democrat challenges his party to return to liberal values and evidence-based science
Democrats were the party of intellectual curiosity, critical thinking, and faith in scientific and liberal empiricism. They once took pride in understanding how to read science critically, exercising healthy skepticism toward notoriously corrupt entities like the drug companies that brought us the opioid crisis, and were outraged by the phenomenon of “agency capture” and the pervasive control of private interests over Congress, the media, and the scientific journals.
A Letter to Liberals is Robert F. Kennedy Jr.’s, challenge to “lockdown liberalism’s” embrace of policies that are an affront to once cherished precepts.
Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future
By Mark Blaxill and Dan Olmsted
Even as the autism rate soars and the cost to our nation climbs well into the billions, a dangerous new idea is taking hold: There simply is no autism epidemic.
The question is stark: Is autism ancient, a genetic variation that demands acceptance and celebration? Or is it new and disabling, triggered by something in the environment that is damaging more children every day?
My (not) favorite question on one of those renewal calls is ‘How much support would be needed for an intimate relationship with a partner?’ In terms of level of support, frequency of support and number of hours of support.
Posted by: L Land | May 08, 2023 at 01:53 PM
Frodo: I wish the ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought.
Keep the faith, Cathy.
Posted by: Emmaphiladelphia | May 08, 2023 at 01:41 AM
Thank you for today’s article. It’s powerful for others to be able to read that honesty and transparency that you shared. I too have reached that path and I believe many others who now have Adult children with Autism have too. It’s a Marathon and we now have to solidify that next phase in our children’s lives of who will take that baton from us when we no longer can provide the necessary care and support. I want to state how grateful I am to the significant others (who are not the biological parent) who have taken on caregiving responsibilities along with the parent and have also given love and support to children. They are the silent heroes. They understand the fight. It truly takes a village. Thank you, Don for all you do.
Posted by: Carmen Palacio | May 07, 2023 at 11:23 AM