I have beautiful children. They have a fabulous mother. Their Daddy is one of the strongest people on the planet. We are a well-loved family. Things are going mostly okay for us right now. Life has its ups and downs, but we usually end up pulling through. Alright, I’ll stop before I make myself sick with these exaggerated descriptions.
Truth be told, I do have a great family. My typical kids learn firsthand about compassion, tolerance and special-needs care because of situations that come up with their brother. My kids are very aware that Ronan has limitations that affect all of us. I don’t think they are resentful of what we have gone through and what they unknowingly have had to give up. They know we do things for Ronan that go beyond what other families typically do for their children. They truly understand why they can and can’t do things when he is present. Empathy is alive in this house.
Ronan and one of my typical children recently had a blood draw. My daughter went in with some trepidation but fared well. She shed tears in the beginning of the process as expected. I had to hold back some of my own as my Mommy heart ached watching her. But then, my welled-up eyes quickly squinted closed. I tried to silence bits of laughter that wanted to squeak out when my five-year old yelled in between sobs, “Stop! Give me back my blood. Put it back! You can’t have it. I need my b-l-o-o-d!!!” Apparently I didn’t do enough explaining of what was happening to her or why. A few more little girl tears flowed as the last tube was filled. I am grateful my daughter didn’t pick up Ronan’s fear and feeling of “I hate all of you in white lab coats” after her turn at the lab.
Ronan was next. It’s never fun, easy or quick for him when it comes to blood draws. Ronan can immediately sense why he’s being brought into a small, mostly sterilized room. He hates the tight rubber band, gloves, gauze, cheery band aids and lab techs who think they are going to get anywhere near him or his blood. Ronan tenses up instantly which begins a massive sensory-overloaded fight response. Veins roll. Sweat pours. Tears stain. Bruising starts. I don’t usually bring the other kids with me when it’s Ronan’s turn. But, this time the entire family was in tow. This trip occurred over a weekend. Instead of splitting up like we usually do to cover situations like this my husband, all five kids and I descended upon the little laboratory.
Once my daughter’s draw was done I sat with her and my other kids in an adjoining waiting room. Ronan’s brother was nervous thinking he too would be going in for blood work. I assured him he wasn’t, so he waited quietly for a few minutes. Waiting for a successful blood draw is excruciating. Ronan’s issues cause long delays. While we watched TV in the waiting room, Ronan’s little brother worried. He didn’t like that it was taking so long for Ronan. He didn’t like to hear the small whimpering sounds and then the all-out crying Ronan started to do. Tears were in full flow in the lab, and rightly so. But, when I looked over at my typical son sitting next to me his cheeks were also wet with tears. “Mommy, why does it have to hurt him? Can’t they be done yet? I don’t like how it makes Ronan sad. Can I go see him and Daddy?” Oh, my child! I scooped my tender-hearted little boy into my lap and held him as long as I could.
I don’t know if I would be able to fully prepare my typical children for what’s out there in the real world if Ronan hadn’t been vaccine injured. Teaching them this side of life’s lessons are painful—lab work, poop analyzing, sleep disturbances, dietary infractions, special education, constant therapy—how has all of Ronan’s abnormal become part of their normal? The siblings wish their brother had never gotten hurt. They don’t like to hear that other children are vaccine injured and have school struggles and autism. They see that Ronan is missing out on some stuff they and their friends naturally get to do. It pains them to know that other little kids can’t talk, can’t go to the bathroom by themselves and can’t go outside to play by themselves. Even though the struggles can sometimes outweigh any ounce of hope, these beautiful children of mine consistently pray for Ronan and for kids like him. They believe with all of their being that every single one of them can one day be recovered.
With a stronger grasp of how our lives are so affected by what did happen to Ronan I make a point to share all sorts of stories that hit the autism news wires with my kids. I don’t always shield their ears or eyes from the atrocities that happen in this community. We still pray for Robbie even all these months after his rescue (and, we will probably always pray for him because of how close to home his story was to our family). They hear about the restraint and abuse in classrooms. They know programs are in place to help people, but my kids know that other people take advantage of those programs and ruin it for those in need. I think it is important for my family to hear the horror stories in order to fully understand the reality of where Ronan’s life could take us. The scary stories are the hardest to share, but it reminds us to be vigilant in our efforts to keep Ronan healthy and safe.
When he is safe, Ronan is free to learn, to build upon his growing skills and to shine with success. We’ve been fortunate to celebrate several amazing new skills that emerged in the latter part of 2011. Ronan has gotten to be in the limelight with parades around the house for learning how to sign more words and how to correctly spell them. His latest accomplishment? Ronan is voluntarily typing and writing more of the words he knows.
With his new-found skill and desire to write Ronan got a dry-erase board easel for Christmas. After a few “Mommy homework” lesson at the new easel Ronan looked at his younger sister and wrote her name on the board. He produced long, beautiful letters strung together perfectly. A real-live legible word! The name of a sibling. The one sibling who is his perfect mini-therapist. The one child who makes wishes on the first star in the night sky so she can hear his words again. Ronan made a quiet connection with her, and he did it naturally as if he’d been writing her name for years. She screamed with glee and danced around the house. Dumbfounded is how I looked as I stared at Ronan and his perfectly printed proof of progress. Proud and full of joy then enveloped me.
I love the days that make my heart sing and my mind race as I look for more Ronan success. I’m proud of his accomplishments and how they affect the entire family. We all thrive on the positive that exudes when we get to see Ronan in a glimmer of normal. I couldn’t do any of this on my own—it’s much too much for one person to do or to bear. Thankfully my husband and I have a few kids underfoot who willingly contribute to their brother’s trials and achievements. We all get into a good groove when Ronan turns a corner. He’s working it, and I think he knows that when he does something fabulous it gives the rest us a great sense of hope for all of our futures.
When Ronan builds upon his development my oldest takes note. She has started to volunteer more time to play with Ronan. She’s trying to roughhouse with him and grabs him to do some fun dancing games. I wish she could remember back to the time when it was just her and Ronan. Ronan was her little “baby” when she was a toddler. He played alongside her with her tea party set. She got the baby and toddler toys out for them. She snuggled on the couch with Ronan to watch Disney shows before naptime. She brought peace and happiness to her little brother. It seems so long ago now, but I’m pleased that she is searching ways to find new connections with him now.
I was so proud of Ronan’s Big Sis when she watched me open this link last week: Her eyes widened. Her smile brightened. She whispered in awe, “Oh! WOW!” As she stared at her brother’s picture I saw her eyes light up with pride. She was looking at a child who has suffered beyond comprehension. She knew why it was so important for us to have that Big Red Box-- because Ronan’s wandering is part of our family’s normal. She knows that that child keeps us all grounded. He reminds us to not take life for granted. He teaches us lessons we never knew existed. He makes us wonder, and yet he makes us jump up and do. He adds the most stress, emotional heartache and financial strain as well as a whole bunch of heart-overflowing-with–love loving. He keeps our family intact. Ronan gives us a reason to believe. Yep, that’s my boy.
Cathy Jameson is a Contributing Editor for Age of Autism.