A Delicate Balance

Having a child with Down syndrome is an exercise in patience and understanding. Having a child with ADHD takes a different kind of patience and understanding. Having both of them fighting for and needing your time and attention is about five steps above dealing with them individually. Sometimes it’s enough to make me want to tear my hair out, scream to the heavens, and take a time out. But there are no time outs in life, just in sports, and this is no game. If it were a game, I would be pressing the pause button, taking a few deep breaths, calming down, then unpausing, and dealing with whatever one or the other of them felt was of the utmost importance. Because, you see, everything to both of them is of the utmost importance. Everything is life or death, do or die, the ABSOLUTE BIGGEST THING IN THE HISTORY OF BIGGEST THINGS. And I have to adjust to that. Strike that. We have to adjust to that, because it’s a joint process, between my wife and myself. And we have to create a delicate balance, the two of us, just so that we can survive.

I remember when we first got Alexa home from the hospital and we found out how temperamental she could be (and still can be). She was needy from day one, preferring to sleep in our bed with us (the family bed), crying at all hours of the night, and throwing tantrums when she didn’t get what foods she felt she deserved. I remember us being harried from the start. Any pictures of the two of us from that first year of her life found us with wild hair, a wild look in our eyes, and generally looking like we were just fighting hard to hold it together, and to stay away. Which we were. Both things. Talk about particular. The child we were given by God was entirely particular from the start, wanting and needing attention, wanting and needing what she wanted and needed right now, RIGHT NOW. And we had to adjust, two people used to being two people, used to fulfilling our own wants and needs, now being subservient to this wailing, screaming child we worked so hard to bring into this world. And that was only the beginning. The Lord only knew what we had in store for us next.

Madeline came into this world the sweetest soul, even though she came fast and furious. Always ready with a smile and a laugh, she was all the things her sister wasn’t. Amenable was a word I would have used to describe her from the start. She ate anything and everything you set in front of her, she slept like she was supposed to, and she cried only when her needs weren’t met. The situation was a quite different one from her sister, in a variety of ways; however, one way it was different was when we got the diagnosis of Down syndrome for Madeline. We didn’t know how to deal with everything that came along with that diagnosis, and as sure as rain in spring, as she grew older it became more apparent that she had her own special types of needs that we would have to address. The foremost need being communication, which quickly began to frustrate both her and us. The biggest delay Madeline has had is in her speech, and while we worked to teach her baby sign language, it was a struggle to get her to use it. And now the issue is in the sounding out of words. She knows what she’s saying, but it’s hard for us sometimes to process her words, and that leads to even more frustration, and now the temper is showing up too. What to do when you have two children who both need so much of your time in such different ways?

I will admit it’s so incredibly tricky, especially when everything is now, now, NOW with both of them, and it’s been made more difficult by the army of individuals who have been charged with giving Madeline all the help she needs. Early on, they came to the house in shifts, working with my younger daughter on occupational therapy, on physical therapy, and on speech therapy. And of course every time they would come, Alexa would be here too, fighting to gain their attention. I can’t begin to tell you all the times I had to take Alexa into the next room, or upstairs, or in the front room, to be able to give Madeline that time to herself with the therapists. Alexa resented it, even though it gave her one-on-one time with me, or with her mother, but there honestly was no other way to do it at the time. And I think now that during that time period she was acting out because of sheer jealousy. She has that need for attention and there wasn’t a balance between the two children. I’ll admit that now, even though I didn’t really see it at the time. I was just annoyed that Alexa wanted to take time away from her sister. And I’m kicking myself for not recognizing it for what it was sooner. My wife knew, though, and she helped me figure it out, but we had to come up with a plan. Did we need to create a balance, or was it just okay to have that shift in attention in Madeline’s favor?

As a teacher, I had to spend a lot of time figuring out balance in the classroom. There were inevitably kids who had a lower ability level that I would have to modify curriculum for, to adjust plans around, and who I would have to spend more time with above others. It was the way it was, but the other kids would notice those differences, and would point them out as inequities. So, I thought about it many times, how I would approach those students who thought it just wasn’t fair, when I knew that somehow it was. In the end, I realized that if there is a student who is an A student, someone who doesn’t need as much of my time, I can’t neglect them, no matter how much another may need a lot of my time. However, I also can’t spend as much time with them because I don’t have unlimited time and others need me more. They start off unequal, and I’m taking that extra time to try and make things more fair. That’s the true definition of equality. And we realized we had to do that with our children, that we couldn’t neglect one or the other, just because Madeline has Down syndrome and will need more instruction, more time, and more focus.

So, we make as much time as we can individually and together, as parents, to spend with Alexa, to reinforce how important and special she is to us. We have also taken time to explain to her that her sister has Down syndrome, to tell her what it is, and to get her to understand what that means, and that she needs more time and that army of specialists. And now, at seven, she understands a lot more. Being a part of the Down syndrome support group in the area also helps in that respect, because she can see other children with Down syndrome, and she is beginning to understand the difference and similarities between her sister and herself. Now, she does everything she can to help Madeline understand and communicate with us, as well. In fact, I believe she can understand her sister even more than we can at times. When we’re stuck for a translation, sometimes we can rely on Alexa to let us know.

That’s the biggest thing we have come to realize throughout the ongoing process of being parents of two children with such different needs, with such particular needs. Having them help and work with each other adds to the balance, adds to the stability, and adds to the connection between them, even better than just having their parents fighting to balance things out. They create more of that balance themselves, which I’ll admit was unexpected, but helps immensely. You know, when they’re not arguing.

Sam

On Parenting and Parenthood