In addition to my 15-year-old daughter who is the primary subject of this blog, I have a 13-year-old son. He generally doesn’t like me to write about him. But I can’t possibly tell the story of Maddie and our family without mentioning him. He did appear in a pretty sweet story a few days ago.
The story I want to tell about him is just the general story of the sibling of a special needs kid. It’s not easy. At all.
It all started about that time I got pregnant with H. Maddie was 18 months old and I was ready to get going on kid number two. This was all very planned. But as it turns out the pregnancy coincided almost exactly with our embarking on a variety of therapies for Maddie. She and I went from having a relatively quiet, mellow schedule to having appointments nearly every day of the week. Occupational therapy, physical therapy, speech therapy. She was behind in all that, and the moment I got pregnant was the same moment it became apparent our first kid needed so much help.
Oh, no. What am I doing? I thought. I was more terrified of having a second kid than I had been anticipating my first. I think the first time I was so excited and a bit naive. I was now more prepared in every way, but also knew what was coming. How would I ever get anywhere on time with two kids?
Well, I managed fine, which was good because we had to get to places on time a LOT. When H was born, we still had several weekly appointments all over the county, and I certainly did have to get her there on time. Plus I had an infant to tote around.
So that’s how H spent the first few years of life. Most everywhere we went was because Maddie had to go there (or I wanted to, in the case of my mom’s group). Very little in our life was designed around my son. He was just along for the ride.
When Maddie was two years old, I put her in a gymnastic class for tiny kids. It was so cute! My friends and I would sit with our little ones and stretch and pose and jump around. It was easy when my son was an infant. I could just plop him in his little car seat and do my thing. But he was a kid that never wanted to be restrained. As soon as he could crawl at 7 1/2 months, he wanted to be free. Then he walked at 11 months. And he had places to go! Things to see! Trouble to get into!
Soon enough I couldn’t manage my active toddler in the open space of the gym, and after many leers and comments from the staff, I had to bail out. Even when Maddie graduated to the class where parents were sidelined, I couldn’t contain my high-energy, curious son. So that was the end of that.
The pattern continued. Even if outings weren’t centered around our daughter, it’s the nature of special needs kids that they have, well, special needs. That means a lot of time and attention is required, and we parents only have so much to give. So, as much as we may try to dole out our attention evenly, inevitably the special needs kid gets more. She needed more help with homework, she needed help shampooing, she needed 20 reminders in the morning to get up. She might even be causing trouble and need reprimanding, and that still requires our attention. The other kid loses out at little bit, if not a lot. It’s the nature of things.
Last night I was at the new high school’s back to school night, and the kids were home alone for the evening. What ends up happening often is that H manages things a little bit. He thought to feed the dogs. When I called him he passed on my request that he and Maddie get ready for bed. And then he took on the responsibility for making that happen–for both of them. I don’t expect him to at all, but it’s the nature of our family that often he takes the older sibling role. Sometimes that benefits him. Other times he’s a little resentful. It’s understandable, but truthfully he fills that role well.
If you know me and my son, you know that we are close. In some ways we are two peas in a pod. We laugh at the same things (yes, I have the sense of humor of a 13-year-old boy!), we’re both compulsively punctual, we love our dogs, we care deeply about school. We’ve spent hours and hours throwing the baseball at the park or shooting hoops outside. We have a great time together. We have a relationship that I’m proud of because he really talks to me, and I’m equally honest with him.
Fortunately we have had the luxury of time in the last few years as Maddie’s school days have been longer than his, and the school year itself was longer. She also goes to summer camp. And she would opt out of a park excursions with the dog and the baseball, giving my son and me some good quality time.
Still, H knows what’s going on, and he has for a long time. He accepts it now, but there were many years where he suffered. He had to stand back or go to his room while I was dealing with his sister in some very volatile situations. He was left to his own devices to do homework (luckily he could) while I devoted hours each afternoon to help his sister. I don’t know that Maddie necessarily takes more of my time anymore, but she has certainly taken more of my energy sometimes.
I can’t tell you how many times my perceptive, expressive son told me I wasn’t fair. I was easier on Maddie, he would say. I expected more from him, he’d tell me. You know what? He was right. I struggled with that concept at times, especially hearing it directly from my own child. But then I had to remind myself something very important: Being fair doesn’t mean being equal. Being fair means giving each child what he or she needs, expecting each to live up to their potential. Would it be fair for me to lower my expectations of one child so that they match up the capabilities of the other one? That doesn’t make sense. It’s the job of parents to help our kids grow and learn. We have to meet them where they are and take it from there. I’m not saying I always do it right. I probably blow it as much as I succeed. But my heart is in the right place, and I don’t regret holding my son to a standard that he can live up to.
Still, it’s important to recognize the extra challenge of having a special needs sibling. When they’re young, you can set aside one-on-one time, and as they get older, you can be honest. I’m honest with my son because he gets it, even when he’s not happy about it. Eventually he’ll fully understand everything I’ve done as a mom for both him and his sister. I also hope he grows to appreciate what a wonderful sister he has. I feel like we’re getting there. At least I hope so.
The Year of Living Hopefully 