John was not cooperating during his therapy session.  Tired after a long day at school, he wasn’t interested in having any demands placed on him.  His therapist decided to pull out the big guns: his older sister. She can get him to do almost anything just by being present.  Fun, playful, and happy, she is a walking reinforcer for him. He also feels similarly about his older brother, and his younger sister is growing into this role as well.  It is remarkable to see how the kids enjoy helping him (most of the time) and playing with him.  They enjoy both the feeling of responsibility and helping John to be happy.  Isn’t this an easy set-up for raising grounded and well rounded kids? Sort of.  Well, NO, not easy at all. It’s actually quite complicated.

 

Remembering our other children too

Every parent raising an extraordinary child has asked themselves how the diagnosis of one child will affect another child in the family.  In our case, how does the autism diagnosis of one child affect our other three children. Without wanting to make light of a difficult situation, I would unequivocally say it does affect every child negatively.  But before I get pegged as a pessimist, I would say that it affects every child positively as well. I would even go so far as to say the gains are potentially greater than the losses.  

 

In our home, John’s needs always come first.  He has to be fed, bathed, medicated, clothed, cleaned, entertained, and occupied in order for anything else to happen.  We all know what can happen when these needs aren’t met and it isn’t pretty. When a therapist or babysitter are in the home to help, great.  But when they’re not, that responsibility becomes mine and Danny’s. We’ve developed a makeshift system of divide and conquer with our kids. One parent cares for John while the other quizzes a child for an upcoming test, helps administer insulin, reads a bedtime story, packs lunches, listens to a child talk about their day, etc.  Occasionally we actually have fun and take them on one-on-one dates. Often though, like many of you who have jobs or are single parents, only one parent is home. So…

 

The frustration and resentment of being ignored (unintentionally) or having their needs always take a back seat to their brother’s needs are real and valid.  The anxiety they feel when John is angry or aggressive is also ever present. The hurt that is inevitable when mom and dad can’t attend their recital/concert/game/fill in the blank is often on my mind and makes me sick to think about.  How do we handle this?  We talk about it as often as possible.  It might not be a solution to the problem, but at least it’s an outlet for the kids to feel heard and understood.  If these feelings go unnoticed, they can grow and manifest in difficult ways. If you’re talking to your kids and working together to make life easier, I commend you.  Don’t allow yourself to wallow in “mom or dad guilt” if your kids are struggling. You’re doing your best.  

 

Rifling through my card catalogue of “John” memories, it’s easy to see our family life from a “glass is half full” perspective.  My kids have become stronger and more resilient because John is in our family. It’s clear that they know he has stretched them and helped them to grow.  My older son recently took an entrance exam for school where he chose to write about how John has shaped his life perspective. He also loves to help John sit quietly at church and sings him songs when he’s sad.  Motivated by her love for kids like John, my older daughter befriended a special needs child at school and sits with her in the cafeteria every day. And she truly enjoys being her friend. She helps make John’s therapy sessions enjoyable for him and has happily started helping with his self care.  My younger daughter has a big and bold personality that naturally allows her to take charge. She isn’t afraid to entertain John and she does so with enthusiasm.  

 

This sibling dynamic is tricky and complicated to balance.  We’ve realized that we must be aware of the possible negative consequences to our other kids.  More importantly though, we’ve learned that the benefit of having a special needs child is greater than we can put in words.  We’ve been given a gift. It’s a gift that takes a lot of work, struggle, and head scratching, but one in which we are so grateful.   Still, with this gift comes the added responsibility of ensuring that our three other children’s needs are met and that they know they are loved.