While most of the world was busy preparing for and celebrating all things Halloween, we had our own version of horrors at our house. Mark developed croup, Jillian dealt with a stomach bug and then caught a cold that turned into croup for Mark. It has been a rough week.
On Friday, while Mark was napping, Jillian climbed onto my lap and we watched some Sesame Street video clips that had been in my inbox from “The Mighty”, a web publication dedicated to highlighting the special needs world. The videos displayed a few different children with autism, both high and lower functioning. She watched as each clip introduced a different child and their family. One little boy used a tablet to communicate his needs and another little girl used sign language. I watched Jilli intently wondering if she would make the connection that her brother was like them. Instead, she asked me if one day she had to use a tablet to communicate. Developmentally she’s still in that egocentric phase relating most things to herself, but knowing Jillian’s old soul, I think she knew. After watching my favorite clip that interviewed a sibling of a girl with ASD, I thought that now would be a good time to tell her that Mighty had autism. She sat there in silence and didn’t say anything. I let it be.
Ike and I had never intended to keep his diagnosis from her, mainly because we didn’t think that it mattered. She loves and adores him and has no expectations. I honestly wish that we had that mentality. Of course, we love and accept him, but we have the disadvantage of preconceived notions of autism and how difficult our and his life may be. Jillian just knows that Mark is her little brother, who pulls her hair and steals her toys.
When Mark has therapy, Jilli will sit patiently (for the most part) next to me in the hallway as we wait for his session to finish. Different children come and go with varying degrees of disability. Sometimes we see a boy, maybe age 10 or 11, who requires a leash to be lead to the set of elevators in front of us. Never has she said a word. And later, when we’re in the car and it stops moving Mark will scream because that feeling of motion that regulates his proprioceptive system has stopped and must make him feel like jumping out of his skin. When this happens Jillian immediately launches into song, singing one of his favorites, and though Ike and I try the same tactic to stop his crying, it usually only works for her. She’ll also pray with me that God will calm him until the light turns green.
Last night I caught them wrestling in the living room. This always concerns me because Mark will sound muffled and even if I’m in another room, I will immediately yell at her to let him go. Yet this time, he was playfully entangled on the rug, giggling as Jilli rolled him back and forth. They were so happy together, and at that moment I felt glad that Mark was our second born. Sometimes I envy those special needs families that have just have one child because they can focus all of their attention and energy providing intervention for just one, but as time goes on I am becoming more and more aware of how important Jillian is to Mark, and how important Mark is to Jillian.
Perhaps one day she’ll ask more questions about autism and how it relates to her brother. Maybe it will slowly sink in and she’ll process it in her own way. I anticipate that she’ll talk to someone else about it, as this has been her MO. When Ike took Mark to California in the spring for MRT brain treatments, it never appeared that she was phased by their absence, even though they were gone for two weeks. But one day she asked Jacob (my sister’s boyfriend) if he ever missed Paige (my sister). He told her that he did and Jilli responded that she missed her daddy and Marky like that. And that was it. She never said anything again to me or anyone else.
I am so thankful to have Jilli on this journey with me. One evening after we got home, she told me that one of the other kids at daycare who is younger than Mark can now drink out of a cup like the big kids. In a lackluster tone, I told her “that’s exciting” and moved on to shuffling through the mail, but then she pressed with “Mama, does it make you sad that the babies are learning how to drink out of a cup before Mighty?” And it hit me. She sees right through me. My girl knows how hard it has been to watch other children reach milestones ahead of her brother. Yet she has a way of encouraging me in wonderful ways like when she tells me “don’t worry Mama, Mighty will talk, I just know it”. And at that moment, her sincere innocence and optimism are contagious and I want to believe her so badly that a little piece of me has hope that if she said it, it must be true.
Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1