The day after the birth of my son, Connor, my mother brought Hannah to the hospital to meet her little baby brother. It was going to be a big moment for all of us.
Two-year-old Hannah had just learned to walk with her orthotics and was wearing her official Big Sister T-shirt. I held Connor in my arms in the bed, and my husband was by our side. Hannah had not seen either of us in a day-and-a-half.
As soon as she walked into the hospital room we called her name and told her to come over to meet her little brother.
Nothing.
No recognition at all that Connor and I were even in the room. She played with the knobs on the hospital bed. Then she went over to the window. After repeated prompts for her to acknowledge her baby brother—and us for that matter—my husband picked her up and placed her with us on the bed. She then began to play with the food tray and its stand. Still no acknowledgement that anyone else was in the room.
I sobbed. And when I say I sobbed, I mean I wailed.
At that moment, the hospital chaplain passed our room and walked in. I am sure he probably wished he hadn’t walked into this situation. He offered some words of consolation that helped me calm down. After recovering from my mini-meltdown, I resolved to manage my expectations for all future exchanges between the two kids: Whatever tone or atmosphere my daughter sets in a room, I would not allow it to affect my relationship with my son.
And that started Connor’s journey of never being in his sister’s shadow.
If you are raising several children, you know it is difficult balancing time between them. However, if one of your children has Autism, it may even seem impossible. But finding a balance is both possible and important.
The Challenge of Limited Attention
When we first received Hannah’s diagnosis, I simply could not see the big picture. I was blindsided by my daughter’s uncertain future. I allowed Autism to define our family simply because of all the necessary appointments. Hannah’s sensory processing disorder, meltdowns, anxiety, and food aversions consumed our time and attention, but thanks to early intervention, Hannah did grow a little more independent, and my time with her didn’t seem so pressing and urgent for her to progress.
Even though Hannah’s behaviors have become less challenging, Autism continues to affect our entire family unit, especially Connor. Children with siblings who have Autism have unique experiences, even if you only consider the family’s time spent with doctors, therapists, and behavior consultants. Children with Autism also require more attention than their siblings due to challenging behaviors and/or lack of independence. Hannah has always required prompting and help with eating at the dinner table—I constantly have to tell her to sit down and take another bite, while Connor sits across the table quietly eating his meal. Hours can be spent on Hannah’s homework due to poor focus, lack of executive functioning skills, and anxiety, while Connor can do almost all of his without any help from Mom. The correction of social pragmatics also takes a lot of time and attention. With Hannah needing all of this from me, I use to often question if Connor was getting enough attention and resources. I found my answer in the summer of 2015.
The Worry: Will the Sibling Be Okay?
The sibling relationship is usually the longest-lasting relationship our children will have. This realization came to me last summer when I attended the Autism Society of America’s National Conference. I sat in on a panel of adult siblings from different families who discussed their journey with their brother or sister with Autism. I had chosen that break-out session with a specific question I needed answered: “How can I raise my son (9) with a sister (11) on the spectrum so that my son never feels contempt towards me?”
I was confident when I raised my hand—only to fall to pieces with tears and a shaky voice when addressing siblings who had already walked in my son’s shoes. In my heart, I knew that I was doing the best that I could as a special needs and single mom; however, the mommy guilt and doubt always loomed. As each sibling went down the table, one by one, to respond to my solemn question, I was comforted by their words. My son was going to be just fine—no blame.
Ideas for Committing to the Sibling
How do I know Connor is going to be just fine? I’m making it so.
Make sure they understand their Autistic sibling’s diagnosis
Connor has always been raised knowing that his sister has Autism. In his younger years, we would read children’s books about Autism, and I made up analogies he could comprehend to help him understand some of her challenges—it was important that these explanations were at his developmental level.
Don’t allow mistreatment
I don’t allow Hannah to get away with mistreating Connor. It is extremely difficult for Hannah to hear Connor receive praise. She sees praise for him as a criticism to her. For example, after looking at a graded math paper, I will tell Connor that I’m proud that he is so smart in math. She takes that as a slam that she is not good in math. A compliment to Connor turns out to be a nightmare for her and then for us. We continue to fight this battle.
Encouraging respect for the Autistic sibling
I always try to help him remember that Hannah did not ask for Autism or choose Autism; it’s just how she was made. On Hannah’s bad days, I commiserate with him, though we in no way speak disrespectfully about Hannah. Instead, we discuss how hard it is for both of us.
Time with Mom
I plan special times when I take only one child to a fun activity just for them, and the other one will stay with someone else. This affirms my love for each child individually.
Even daily, though, Connor and I also have special things that only the two of us do together. We read chapter books together—to date, we’ve read almost 100. We have a special goodbye—an I love you hand signal known only to us. The two of us really enjoy doing science experiments together. I sing “Ain’t No Mountain High Enough” to him while tucking him into bed.
These activities have created connection and tradition between us.
Outside activities and friends
Connor is also a Boy Scout and does Tae Kwon Do, because I don’t want to limit his opportunities because I’m exhausted from Hannah’s needs. Through those activities and school, Connor has a great set of friends who are tight knit. When he’s outside of our home with them, he is 100 percent kid. He deserves that. These kids’ moms understand our situation and help in any way they can without judging. They are some of my best warriors and part of my “net.”
Complicated Sibling Love
Just the other day, Hannah realized that she had hurt Connor with her behavior. She simply asked, “Connor, do you love me?”
Connor said, “Of course I do, Hannah, but it’s a complicated type of love that you sometimes don’t make easy.”
The Gifts of Having an Autistic Sibling
Simply said, our children without special needs need our time, too. We do not want their contempt or scorn. In return, we raise mature children who relate to a wide range of people because they truly understand that different does not mean less than. They will shine outside of the home because they have the intrinsic motivation to do so. It is extremely important that we focus time on their passions as well as our Autistic child’s. Their “whole” person is important, too.
Everyone in your family deserves and needs special time with you.
When we do it right, our children will know that there ain’t no mountain high enough, no valley low enough, nor river wide enough, to keep us from getting to every one of them.
Take care,
Lori