By Cathy Jameson
My five-year old fell in a heap in my lap at last Wednesday morning. She was watching me get Ronan’s seizure medication ready. I saw her watching me and asked, “Hey, Iz. Do you know what this is for?” She nodded her head. Not being a morning person, much like her mother, words are hard to muster before 8 a.m. But, her intense stare and curiosity had me continue, “I know you know it’s his medicine, but do you know why he has to have it?” Izzy replied, “Yes. Well, no. What’s it for again?”
Being five, cute and inquisitive is part of her life right now. She knows Ronan has some limitations but she also knows he’s quite capable. She, like all of my children, is genuinely in tune with Ronan’s needs. She wants more than the best for him. I tiptoed back into the conversation because I didn’t want to let this connection with her brother slip away. “He has seizures and this (pouring in the meds) is supposed to help them stop.” Over the breakfast bar I could see her inquisitive eyes quickly turned into eyes full of sadness and pain.
“Seizures? Mommy, why? Why does he have to have seizures?” I gave her the G-rated version of what happened to Ronan because I didn’t want to fill her head with too much doom and gloom. She’s heard so much medical talk about Ronan in the past, but I didn’t know how much she truly understood about the science behind Ronan’s problems. Since she’s the kid sister and arrived into the family after Ronan’s vaccine injury she has only known his signs, symptoms and the talk of seizures, mito disease, blood work and more. To her this part of his life is his “normal.” She missed seeing first-hand what happened, but I didn’t give her enough credit. Izzy understood the explanation I gave about Ronan, his brain, the seizures and examples of what his body can’t do. She looked at me and said, “So, Ronan got his shots, then he got seizures and now he can’t talk and play like me.” Bingo.
We only had 10 minutes left to finish breakfast, throw food into lunch boxes and get Ronan up (because he’s slept through the night every night for almost 3 weeks straight (yay!) I let him sleep until the very last minute). I had to leave the conversation with Iz to finish running around the house making sure all five kids were ready to get up and out the door. I couldn’t leave the kitchen though. Izzy quickly came around the counter with tears in her eyes. “What’s this? What on earth?” I thought. Never had I realized that she could handle the conversation or truly understood how devastating her brother’s injuries were. But she did. “Mommy, why?” was now more of an implored prayer. Then a string of questions, these more accusatory, “Do they know? Do the doctors know what they did? Do they know about Ronan?”
“Oh, damn straight they know alright!” I wanted to say as she then demanded, “What are they doing about it, Mommy?”
I gently spoke but firmly replied, “Yes, honey. They know. The doctors know all about Ronan and what happened to him.” I continued to explain what I know happened to her brother, how I knew it, and what we as a family can do together to help Ronan get better. In between hugs and holding her tightly, Iz sobbed. She cried for her brother. She cried for the injustice and she cried for the repercussions we feel at home. Then she asked, “But, what about me? Did I ever have seizures or shots or not talking like Ronan?” I stroked her hair and said, “No, sweet girl. You know what? Ronan helped save you from what he’s going through. Because of what happened to him Mommy learned better how to take care of you! I got smarter and said, ‘No way, not for my IzBiz.’” I assured her she had no worries about vaccines or flu shots or seizures or not talking. Her eyes brightened, “So, Ronan helped get me a new Mommy?” Now I was smiling, “Well, sort of, silly. I’m still his Mommy and of course I’m your Mommy, but I’m a much smarter Mommy now. I am a better helper for both of you.”
Big hugs were shared. Eyes were dried and my precious five-year old smiled again. I quickly got us ready for a busy day ahead and together we raced out the door.
Watching the siblings go through this 'awareness' is painful. They are so beyond being aware. They are way too smart for that. Izzy is fully aware of how frustrated Ronan can get when we’re in the car. If he can’t tell me or use his sign language to show me what he wants while I’m driving he will sometimes get upset. Sometimes his shoe comes flying off in retaliation or Izzy’s hair gets pulled (because she’s the closest person sitting next to him). The awareness of how much that hurts? Fully aware. If Ronan gets out of the house despite the locks and constant surveying I do for him, Ronan’s little brother is quick on his feet ready to retract big brother back into the safety of our home. The awareness of how frightening having a wanderer for a brother? We’ve all lost years of our life from it.
Ronan’s siblings want more than awareness. Just ask them. Awareness can only get us so far. Look what happens when only awareness is pushed: we now have an even higher autism rate with 1 in 88 are diagnosed. Ronan’s siblings have been aware every single day for years now. This one month to shed awareness on autism? Really? I’d be curious what the statistics are from April 1 to April 30 on how many new people became truly aware of autism and then if those people were actually going to do something about it. If no earth shattering stats? I’d like to know how much money was spent (or wasted) on the awareness campaign. Then, to really prove a point, I’d like to tally how much money families had to spend on non-covered therapy, medical appointments, emergency room runs, special dietary foods, supplements and medications for that month. If the money spent to make regular people aware totaled is more than what people had to spend on autism-related care, oh boy. Head’s should roll. Can you imagine how many lives would be a little bit better if that money was better appropriated? How many children might be a tad closer to recovery? How much relief some of us might have from the bills, the efforts and the stress that comes with raising someone on the spectrum? Relief would be nice.
Relief would be welcomed by everyone in the family. Ronan’s big sister has been aware of what’s been going on now for 88 months. That’s about how long it’s been since her brother started to slip away. She remembers his typical development when they used to play together. When Ronan does something with her now, her eyes light up with joy. She calls my attention with a whisper, “Mom. Mom!” Then, with pride she says, “Look.” That smile. That knowing things can go back to the real normal she knew and played with. It’s a relief but also it’s a purpose to continue to work hard.
Ronan’s younger siblings have been more than aware since they entered our family. Ronan was already suffering when they joined the Jameson clan. Right in front of their eyes because they have known nothing else, what these young children have witnessed is sometimes painful, frustrating, costly and even dreadful. Fortunately we stay always updated with groups that do pitch in and assist families raising children with autism. My children are happy to know that other people do care about what happens to these kids, including their brother. My kids are as thankful as my husband and I are to those organizations whom have given directly back to Ronan. We are grateful for those groups because their actions for and dedication to giving is 100% genuine. They know that is much, much better than plain old awareness.
My children are aged 10 and under. They are pretty vocal and let me know that they just don’t like some of what they see. They know things are not always fair for families who work so hard. They’ve seen both good and bad come from people. They’ve learned that not everyone is a kind soul with helpful intentions. In learning that good and the bad happen they’ve decided that giving back is better because good begets good. My children have vowed to do the right thing for their brother and have a keen interest in what’s happening to other kids like him. These mini revolutionaries in training want to change the world for the better. And, they want that to happen right now.
As a family we know that other things will get us farther. We work so hard to trust, to work and to do. We trust that we are now doing the right thing for Ronan. We work all the time to make sure he’s safe. We pour our collective efforts to make sure he’s cared for. Every day we encourage Ronan to do something new or better than he was able to do yesterday. Because of this my kids insist upon action. But more than that they insist upon justice. Praying for Ronan brings them some peace as emotions, both good and bad, are stirred. I pray, too. I pray for healing for Ronan and for peace to settle in all of our hearts. Our hearts are full now but we imagine how much more they will be when some of our dreams for Ronan can come true.
My beautiful children. I love how they want so boldly to make things right. They are so brave in what they’ve had to come to understand. It’s been a commitment to continue to encourage Ronan but one that gladly accept. My favorite thing to hear is, “MOMMY!!! Come look at this. Ronan just __________ !” And, you know he did something utterly fantastic. We jump up and down, scream happy sounds until we can’t and hug each other until we fall over. Ronan watches us like we’re a bunch of goons probably wondering, “What? I do this all the time now.” Those are the times I feel like we’re going to continue to make breakthrough after breakthrough, that we are sprinting to the recovery finish line and that we will reverse a diagnosis that on other days seems to be deeply set in stone. Awareness won’t bring Ronan’s skills back. I can guarantee you young children demanding action will. My kids will not settle for anything less because they are never going to give up on that brother of theirs. Too much is at stake for them and even more for Ronan.
Cathy Jameson is a Contributing Editor for Age of Autism.