My four-year old, Madeline, is one of the sweetest children you will ever meet, but she can also be a holy terror. Like most four-year olds, she struggles with the idea that what she wants isn’t always the best thing for her. I swear she would eat pizza all day every day if she could. She is also very cute, with a smile that will melt your heart (which is why so many people want to let her get away with stuff — but don’t be fooled). She thoroughly enjoys The Fresh Beat Band (watch Nick, Jr. sometime, why dontcha?!), and playing dress-up with her sister. At her preschool she has made several little friends who hug each other when they meet up. At home she likes to play games on her iPad (educational ones, you can be assured), although she likes to wander sometimes in the middle of those games. My four-year old, Madeline, is an amazing miracle who gives so much love, affection, and sometimes anger too (but that’s healthy). Oh yeah, and she also happens to have Down syndrome.
While we don’t focus on that last point, you can see where it would have a bearing on other things, or can you? I remember when my wife was pregnant, and we had no idea the surprise that awaited us, or when little Maddie was born, with her ten perfect fingers and ten perfect toes. And we knew early on that there was something different about her. After extensive testing (poor little girl), we finally got the results, and the result was Down syndrome. I knew absolutely nothing about Down syndrome except for that television show, “Life Goes On,” from the mid-80s. Needless to say, we had to do a lot of research. Now, my wife’s a librarian so her brain went directly to books. We got pretty much every book we could get our hands on about raising children with Down syndrome, the issues, the techniques, and everything in-between. One thing that every single book agreed on was that each child with Down syndrome is an individual, which should have been obvious, but most times isn’t, especially when people are unfamiliar with the syndrome itself.
“I knew absolutely nothing about Down syndrome, the issues, the techniques, and everything in-between.”
So, we were stressed (by the books) to make sure we remembered that our child is just like any other child, that she wouldn’t always be happy. That she would have moods just like any other child, and that was okay. But also, just like any other child (notice the repetition — it is on purpose), she would not be immune to manipulation, something that could be a huge problem if it persists, because the general public thinks, “oh poor child,” and they want to do things for her. She *knows* this, which is the big point, and she smiles her sweet smile at them. “Yes, give me more ice cream.” And they do. So we shouldn’t let her get away with that. If there is no more ice cream, there is no more ice cream, no matter how much she smiles. She gets time-out just like her sister, and she knows exactly what she’s done wrong to merit it. To put it in a nutshell, she is treated just like any other child, which on most levels she is.
Now, where she diverges is in the learning department. We understand that she doesn’t learn as quickly as a “normal” child, what is called a “delay,” which is fine. The key is not to dwell on the delay, but to work on getting her skills at their peak, whenever that happens to occur. She does learn, and she retains information, which is wonderful to see. Indeed, she loves to sing and dance, and she carries a pretty good tune as well. She can say “Wii” so we will let her play “Just Dance,” and she knows how to sweep the floor (it helps mommy and daddy out). She understands much more language than she can speak, so we always have to be careful what we say around her. Just like a four-year old, which she is. And, you know, I’m glad she was a surprise, because that’s the best kind of surprise. She really is our little miracle.
Before I close this message, I wanted to talk briefly about other benefits that come along with our little bundle of joy. From the moment we found out she had Down syndrome, my wife has been very proactive about getting information and services. There are so many services out there to help those with special needs, and we found out just how many. Occupational therapy, physical therapy, speech therapy, about any therapy you can find out there. So from the time Madeline (affectionately called Maddie) was three months on, she has had access to these services, which have been a godsend. Also, she gets the best in doctor care. Some doctors have a really long waiting period to see them, like the heart specialist, but Maddie was fast-tracked so she could see him as soon as possible. The same was true with the dermatologist, and for that we are extremely grateful.
My four-year old, Madeline, is an amazing child, who happens to also have special needs. And I wouldn’t have it any other way.