By Cathy Jameson

…it’s a testament to you…

I don’t normally invite mainstream medical providers into my home, but I welcomed the nurse in with open arms.  She’s fairly new to Ronan’s team of providers. Last time she visited, she quickly recognized that we’re not a typical family and that we don’t accept things that others typically do – like getting a flu shot.  Not only did this nurse remember that; she also respected it.

We’ve fought hard for Ronan, and we don’t want to slide backwards.  The fight continued just a few weeks ago.  Thankfully, other of Ronan’s providers have been quick to advocate for him.  In doing so, they helped cut some thick, red tape.  Testing is expensive, and insurance companies are rash and say no to those kinds of tests.  Good doctors who spend time with their patients and their families refuse to let no answers be the final answer.  Good doctors, like Ronan’s, fight for their patients.  Testing was approved and done. Since it’s so unique, it’s understandable that it’s taken longer to get results.  While we wait for those, we review with others, like the nurse who came to our house.  Checking with us every few months, she monitors several services that are provided to him.

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Daily living skills

Medication needs

Living needs

Behavioral needs

A young man like Ronan has many needs from learning how to perform very simple daily skills to us managing his very complex medical issues.  With all of it, my husband and I continue to step in to make sure Ronan is taken care of.  The nurse who came by ensures the services needed are maintained.  I used to not like having to reveal all the things to all the people we’d encounter.  Less is more!  But my child needs more than his typical peers do, we do reveal a little bit more than sometimes we’re comfortable.  The medical people are never squeamish, and most have been incredibly respectful of milestones Ronan is still working on. They understand the big picture and that it’s taken small baby steps for us to get to where Ronan is today.  

He's not closer to independence like we’d hoped and prayed for when he was younger.  But he is worth every effort, including the efforts made by the young nurse who came to our house to work on his case.  “I’ll keep in his file that you still require the care of attendants to help oversee his daily activities.  I’ll include the latest neurological issues he’s dealing with.  Since those have worsened, he won’t be in danger of moving down the scale.  I’ll update that he’s still not able to accomplish those bathroom skills also that we’d hoped he would have achieved by now.”  

Not that I’m rooting for failure, but I thanked her for knowing that worse is better for him in this instance.  The case she was updating provides benefits for us that would be out of reach.  Finding the care, the supports, and the time this program offers us has been a lifesaver.  Those who work with us personallyhave been nothing but helpful.  Other groups don’t always remember the human side of special needs care, but this group does.  So, I didn’t waiver when asked to sign the yearly document.  It’s time sensitive so the nurse promised to deliver it without delay.  She’d shared with me that she, too, has a family member who requires care beyond her family’s abilities.  The frustrations she’s recently felt as she searched for available benefits are ones I have felt in the past.  Sharing her story gave us a connection and one that I very much appreciated.  When the person fighting for you is dealing with similar situations, the bond created can be very strong.    

As we wrapped up our visit, I shared a little bit about where Ronan’s siblings were since the last time the nurse visited.  She asked about their latest accomplishments and was impressed that they still willingly pitch in whenever they’re around.  “It sounds like you have such a lovely family,” she said.  Knowing that they are still drawn to being home, she added, “That’s a testament to you and your husband…that gives me hope.”  It was my turn to smile.  

My family.  

Those sibling.  

They don’t waiver, and that, too, gives me hope.

Cathy Jameson is a Contributing Editor for Age of Autism.

Some of us were pushed. Some jump. It's really hard for most of us to imagine signing up for a vaccine clinical trial. But Brianne Dressen, did. And this is her story, written by Caroline Pover and new from Skyhorse Publishing, Worth A Shot.

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Preschool teacher Brianne Dressen wanted to help end COVID. What better way than to participate in a clinical trial for the vaccine? But something went terribly, terribly wrong. 
 
Worth a Shot? by Caroline Pover tells the true story of what happened to Brianne’s body, mind, and spirit. 
 
This book chronicles Brianne’s journey as she discovers the intricate web of systemic failures that affect the health of millions worldwide, and unwittingly becomes a global advocate for a cause that nobody wants to believe exists.