It was done by the health care provider in the exam room with the syringe.
I used to play the game Clue when I was younger. Strategy, a few friends and a couple of hours filled my afternoons. We were preteens-turned-detective using our imagination to guide us as we questioned "Whodunit?" playing the board game. Someone always found the evidence. Someone always pieced the mystery together. Someone always won the game. Someone always put away the game pieces and stored the box until next time. Piecing my son's health back together after his vaccine injury reminds me of the game Clue. When looking at all of Ronan’s evidence - his physical health and then deterioration, his mental abilities and then disabilities, his emotional growth and then delays - I conclude that it was done by the health care provider in the exam room with the syringe.
Sadly, after making that conclusion, there hasn’t been a ‘Game Over, I win’ moment where I get my formerly healthy kid back. I’ve been on what seems to be a never-ending mission to bring back some bit of normal to Ronan’s life since connecting the dots to his problems. My mission has included the hunt for the right people to help my son. Finding the means to afford those people and the intervention Ronan needs is a daily challenge as is the faith, courage and perseverance to stand up for Ronan’s rights when someone tries to take those necessities away.
I can’t turn his clock back to when Ronan was typically developing, but I can also never forget how it all happened. Even now, with years of handling all of Ronan’s medical, educational, therapeutic and emotional needs, I still feel blindfolded and sometimes blindsided. It’s taken a great deal of work to create strategies to make things better for Ronan on a daily basis. Things go wrong, a major glitch happens, and I’m back to looking for clues, putting puzzle pieces together and wondering who or what ultimately is the culprit.
Ronan’s much-needed therapy is like the elusive object of the game Clue. The difference is that in the real world, it’s not a straight line to the library or the kitchen or to his school room. It seems that Ronan always has to pay an admission fee or a penalty if he wants to move forward. Detours along the way are not uncommon. One of the latest occurred when Ronan took some “time off” from therapy because we hit a snag with insurance. As I muddled through paperwork and policies, Ronan was the one who ultimately suffered. But, as with everything else he and I have experienced along this journey, we found something to celebrate and to keep us moving forward.
It was during his therapy “break” that we celebrated Ronan’s birthday. Oftentimes I never think he’ll make it to his next birthday because of how sick he gets. So, I was really excited that we had another milestone to enjoy. A week before his birthday, Ronan’s little sisters helped me find a number 8 candle at the store. It was with much fanfare that they picked just the right candle. My typical children were so giddy the night of Ronan’s birthday party. They invited Ronan to the table to see his lighted glittery, red candle and perfectly baked gluten-free brownie dessert. With a slight twinkle in his eye Ronan recognized the birthday table cloth and birthday banners I had streamed across the dining room. It didn’t take him long to detect a tasty treat was coming so he quickly got settled in his chair.
Normally either my husband or I blow out Ronan’s candle, but that night I looked at Ronan at the end of his happy birthday song and said, “YOU have to blow out your candle.” I brought the plate of brownies closer to him. He looked at me and blew toward me. With the right positioning of the plate, the candle at just the right angle to welcome his breath, with his super excited siblings cheering him on, Ronan blew, and blew and blew once more. With a final intake and a forceful exhale, Ronan did it! It took several attempts, a little bit of spittle on the brownies for good luck and a mountain of faith to snuff that candle out. No matter that blowing out a candle should be a taken-for-granted action; for Ronan it represented another “look what I can do” victory.
Enjoying victories like snuffing out a candle gives me the desire to continue to investigate more strategies for Ronan. Seeing Ronan gain and use his new skills in such a celebratory way gave me the energy I needed to resolve the insurance snags that caused yet another delay. I fully expect Ronan to blow up his own balloons for his next birthday party since he’s blazed through that task soon after returning to his regular therapy schedule.
I forced myself to look to ahead toward positive possibilities for and with Ronan when he added another candle to his birthday cake. I did this because I do mentally slip and dwell on the past. I would much rather close the file on this thing, his vaccine injury. I want to put the negatives and the pain away in a box, and store it in a closet forever sealed and forgotten. It is all so consuming though, and it stares me in the face everyday.
I can’t give up though. All the sleuthing the two of us have done for each other - Ronan in being more able to do for himself, and me as I grow mentally and emotionally stronger - confirm that he’s uncovering solid skills and future potential. That’s proof positive that we’re on the right track. Hopefully this path, even with the interruptions along the way, will give Ronan more victories. I just wish it didn’t take so long to get to that reality. Both of us have had to work through struggles to celebrate what others might take for granted. For Ronan, and for me, it’s just what has to be done.
The parent is solving the vaccine-autism mystery in the den at the computer with the internet and a vast network of friends…
Cathy Jameson is Contributing Editor to Age of Autism.